This is an archive of past discussions. Do not edit the contents of this page. If you wish to start a new discussion or revive an old one, please do so on the current talk page.
Latest comment: 3 years ago10 comments4 people in discussion
PEM is now recognized as the hallmark symptom rather than severe fatigue, so should be in the short description. PEM is also the symptom found to better differentiate CFS from other fatiguing conditions. CDC describes this as " ME/CFS may get worse after people with the illness try to do as much as they want or need to do." Other sources describe it as worsening of symptoms after exertion. This should be in the "short description" at the very top of the article. PEM is mandatory using the CDC criteria, the Canadian working definition (used in a lot of recent research), and is found in all other definitions. As per "signs and symptoms" PEM is described as "Worsening of symptoms after physical or mental activity that would not have caused a problem before illness". The current short description treats fatigue as the hallmark.
What wording is best to include PEM hallmark symptom in the short description? Amousey(they/them pronouns)(talk) 11:20, 20 July 2020 (UTC)
Do you have citations for this, rather than your assertion above? -Roxy the elfin dog .wooF 11:31, 20 July 2020 (UTC)
"May get worse" does not mean "hallmark symptom". We also know from excellent RS that sometimes exercise may be helpful, so this basically seems like a crass POV-push. Alexbrn (talk) 12:11, 20 July 2020 (UTC)
Sorry for missing the refs User:Roxy the dog. Added at the end. User:Alexbrn - "May get worse" is the start of the CDC phrase for "post-exertional malaise", "may" because sometimes exertion is fine, other times it causes increased symptoms - e.g. brain fog, sleep problems, sore throat, or whatever other symptoms a person has. Exertion is also not considered the same as exercise. Also the only studies showing benefits were those using the Oxford criteria, a criteria which merges idiopathic chronic fatigue and chronic fatigue syndrome and as such has been announced as "retired". Without getting into that debate though, PEM is not to be confused with "exercise makes people worse" - it is that too much activity / exertion including mental activity (concentration, socializing, paying the bills, etc) can make someone worse - Someone very severely ill might "crash" just from watching TV (concentration) someone mildly ill might manage a gentle gym session most of the time but "crash" if they try to go to the shops after.
PEM is seen a particularly important because it helps to distinguish CFS from other fatiguing illnesses that may occur separately or with CFS eg fibromyalgia, multiple sclerosis, irritate bowel syndrome, amemia can all cause chronic fatigue without Post-exertional malaise. Amousey(they/them pronouns)(talk) 01:19, 25 July 2020 (UTC)
Sources:
"A hallmark of ME/CFS is that symptoms can worsen after physical, mental, or emotional effort, a manifestation known as post-exertional malaise (PEM)."[1]
CDC is using the Institute of Medicine report criteria, primary symptom no 2 is PEM
"Post-exertional malaise (PEM) is considered to be the hallmark characteristic of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS)."[2]
"Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a serious disorder characterised by persistent postexertional fatigue and substantial symptoms related to cognitive, immune and autonomous dysfunction." Cochrane exercise therapy review[3]
Post-exertional malaise (PEM) is the hallmark clinical feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). (Review)[4]
Intolerance to even trivial increases in physical or mental activity above individual norms is the hallmark symptom of ME [10–12, 17, 18]. This intolerance manifests itself as marked worsening of symptoms that may be short lived or prolonged (sometimes weeks) but only rarely resulting in permanent disability [10, 11]. Post-exertion malaise indicates the intense malaise, exhaustion or neurocognitive symptoms following physical or mental activities and lasting for more than 24 h. This typical symptom in ME corresponds with the fatigue and exhaustion behaviors expressed during sickness behavior. (Review 2013) [5]
Post–exertional fatigue and malaise (PEM)
This symptom, PEM, is considered one of the distinguishing symptom of ME/CFS. It helps differentiate ME/CFS from other conditions in which patients feel better after exertion such as depression. PEM refers to severe physical or mental/cognitive post-exertional fatigue. This means that there are worsening of symptoms after minimal physical or mental/cognitive exertion. For example, the patient does not recover after normal activities of daily living such as: brushing their teeth, taking a shower or doing emails on the computer for 15 min. Bested 2015 [6]
"Post-exertional “malaise” is a hallmark symptom of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Various abnormalities, including abnormal physiological responses to exertion, can account for post-exertional “malaise” and “exercise avoidance”... "Post-exertional “malaise”, a (prolonged) aggravation of symptoms after a minor exertion, is a discriminative symptom of Myalgic Encephalomyelitis (ME) [1-3] / Chronic Fatigue Syndrome (CFS) [4]." (Review)[7]
All of which is irrelevant. "Too much" exertion can cause malaise in anyone, so it's not a "hallmark" of anything other than being human. A structured programme of exercise can help people with CFS, so saying post-exertional malaise is a "hallmark" of CFS is just wrong. It looks like an attempt to undermine the fact that structured exercise is helpful sometimes, as we know from our sources. Alexbrn (talk) 06:15, 25 July 2020 (UTC)
User:Alexbrn please provide sources in support of your point that all humans have post-exertional malaise, and that PEM is not a diagnostic symptom. I have provided very high quality secondary reviews which are mostly recent as per WP:MEDRS including the CDC's website which was updated a few years ago. Amousey(they/them pronouns)(talk) 20:12, 25 July 2020 (UTC)
I did not write "all humans have post-exertional malaise". Basically, making the change you did without context or nuance was partial to the point of misrepresentation. Alexbrn (talk) 20:23, 25 July 2020 (UTC)
I apologize for that lack of context. Can we have some discussion over wording that would be appropriate? I would be comfortable with "post-exertional malaise" being mentioned directly rather then using alternative words to explain it, but I am not sure if that would be understood by the average reader. What about:
1. Medical condition involving severe physical or mental/cognitive post-exertional fatigue, increased symptoms after exertion, and other symptoms". (see Bested 2015)
2. Medical condition involving persistent post-exertional fatigue and substantial symptoms related to cognitive, immune and autonomous dysfunction. (see Cochrane) - Amousey(they/them pronouns)(talk) 03:16, 8 August 2020 (UTC)
Because any discussion of the effects of exertion is complex, it is not suitable for a short desc at all. What we have is fine. For an example of how symptoms are well summarized for a lay audience, see the NHS, with which we are gratifyingly aligned.[1]Alexbrn (talk) 06:25, 8 August 2020 (UTC)
Quoting Alexbrn: "Too much" exertion can cause malaise in anyone, so it's not a "hallmark" of anything other than being human. A structured programme of exercise can help people with CFS, so saying post-exertional malaise is a "hallmark" of CFS is just wrong.
That is an ill-informed statement. I would suggest learning more about PEM in ME/CFS before discussing this subject. This disease seems to attract medical charlatans; obviously it would be better if only people who have a deep knowledge of this field contribute to discussions on ME/CFS.
The IOM diagnostic criteria of ME/CFS are based on post-exertional malaise (PEM) as a primary symptom. The IOM are the main clinical criteria now used in the US to diagnose ME/CFS, and these criteria have been adopted by the CDC and NIH. You cannot have ME/CFS by the IOM criteria unless you have PEM. PEM is a required symptom, and is a fundamental hallmark of ME/CFS.
Similarly, in the Canadian consensus criteria for ME/CFS, which are the main criteria used in research studies, PEM is absolutely a required symptom in order to be diagnosed with ME/CFS. You cannot have ME/CFS unless you experience PEM by the CCC, and by the IOM criteria.
PEM is one of the most enigmatic symptoms of ME/CFS, and any medical scientist with intellectual curiosity would find it a fascinating phenomenon. The mechanism behind PEM is not known, but some theories have been proposed to explain it. PEM is one of the most debilitating symptom in ME/CFS, grealy limiting what ME/CFS can do in terms of daily physical exertion (and sometimes also mental exertion).
If you don't understand what PEM is, if you don't understand what the symptoms of PEM are, don't understand what triggers PEM, and don't understand how long PEM lasts for once triggered, then I suggest doing some background reading on this subject first.
Quoting Alexbrn: A structured programme of exercise can help people with CFS
You need to be very careful about making such statements regarding exercise: exercise may help a little for ME/CFS patients who are mild (on the ME/CFS scale of mild, moderate and severe). And some of the best ME/CFS doctors will carefully prescribe some exercise to patients if they have improved to the point that they are now mild.
But giving exercise to severe ME/CFS patients can greatly worsen their condition. This is well known by expert clinicians who treat ME/CFS patients, and patient surveys have corroborated this (see the MEA 2008 Survey page 9 and the MEA 2012 Survey page 206 which shows that exercise can worsen ME/CFS).
The issue of exercise therapy is closely linked to PEM, because exercising past a certain limit (a limit which is different for each ME/CFS patient) will trigger PEM, which may then put the patient in a far worse state for a few days, sometimes even a few weeks. Mild ME/CFS patients may be able to walk for an hour without triggering any substantial PEM. But severe ME/CFS patients may trigger PEM even after just 5 minutes walk. And very severe patients can trigger PEM just by walking from bed to bathroom, which is quite remarkable. Dr Mark Vink showed in a published study that in very severe patients, more blood lactic acid is produced by a just a 6 meter walk from bed to the bathroom that you get even in marathon runners who have completed a race.
There are many ill-informed clinicians who use graded exercise therapy (GET) for ME/CFS, but are not aware of how exercise can trigger PEM, and thus may push patients too far, leading to a semi-permanent worsening of their illness. Once PEM is triggered by going past the patient's exertion limit, they need to rest for some days to get over the PEM, before attempting any further exercise. Otherwise if you coerce them to exercise further during their PEM period, you can semi-permanently worsen the ME/CFS, and it can take 6 months or so to recover from this worsening. PEM must be properly understood if you are going have a decent understanding of ME/CFS, and if you are going to apply GET responsibly. Hip-IV (talk) 18:04, 13 August 2020 (UTC)
Here is a type of reference I haven't run across before. The National Institutes of Health published a webpage summary of their study about PEM. "NIH study details self-reported experiences with post-exertional malaise in ME/CFS".[2]
Naming in lead again
Latest comment: 3 years ago5 comments2 people in discussion
Propose the wording be changed to:
"Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), or the acronym ME/CFS,..."
based upon the 2015 IOM review ref [3] page 29:
"Although a variety of names have been proposed for this illness, the most commonly used today are “chronic fatigue syndrome,” “myalgic encephalomyelitis,” and the umbrella term “ME/CFS.”
SEID or CFS/ME has not been widely used. Ward20 (talk) 07:52, 21 October 2020 (UTC)
Hi Ward20. I know that SEID has not been adopted or widely used, but the fact that there is a redirect from both the full name and the acronym to this article means that it should appear in bold in the lead. As far as I can see, it's not mentioned in the body, which is a glaring omission, but perhaps someone could add something from a reliable source which explains its origin or at least mentions it (Meyo Clinic, Stanford Medicine, The Lancet, Medicine Net, BMJ article, or look into some of the sources given in the MEpedia article). It doesn't matter if it given less prominence, but it needs to be there. And just one other thing - ME/CFS is an initialism, not an acronym, so please don't use that word! Laterthanyouthink (talk) 09:42, 21 October 2020 (UTC)
p.s. I don't have time to dig into the detail more thoroughly now, but I thank that the document you posted was the actual proposal to rename it as SEID (see also the MEpedia entry) in 2015, and it is saying that until that point it had been termed CFS or ME. It looks like it never took off in a big way (and was probably only ever confined to the US), but it still needs a mention, as it could be sought by that term. Laterthanyouthink (talk) 09:48, 21 October 2020 (UTC)
It is a stuggle to achive the proper balance in the lead. Per Wikipedia:Lead:
"The lead serves as an introduction to the article and a summary of its most important contents" and
"lead should roughly reflect its importance to the topic, according to reliable, published sources."
The suggestion uses the most reliable source I know of to summarize the most recognizable names (of which there are a multitude). It also reflects the referenced wording in the article's Society and culture Naming section. which does discuss that the 2015 IOM document suggested the SEID name, not that the SEID material couldn't be improved. Ward20 (talk) 16:45, 21 October 2020 (UTC)
Even though SEID redirects to this article, so does Post-viral fatigue syndrome, Tapanui Flu, CFIDS, Yuppie Flu and most likely others, and they aren't listed in the lead. I dont believe that reason is logical. There seems to be no other objections, if not I will implement the proposal, but keeping 'initialism', in a day or so. Ward20 (talk) 22:19, 25 October 2020 (UTC)
NICE: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management Draft, November 2020
Latest comment: 3 years ago1 comment1 person in discussion
FYI. New NICE draft guidelines[4] out for finalization about 1st quarter of next year. I expect newbie edits to the article based on the draft, but I propose not implementating these in the article until the final guideline is released. My purpose for posting now is to discuss the weight to give some of the possible differences and additions when it is finalized. There are major changes and additions in care proposals from the previous NICE guideline and moderate differences to the CDC guidelines. The article might get swamped with edits after the NICE release so pre-planning discussions might be prudent. Major differences I noticed after a first skim of the draft: shorter time period recommended for diagnosis, more detailed symptomatic treatment recommendations, recommending energy management instead of GET, significant additions and detail to management for children and the severely affected, discussion of the illness effects on the patient their families and carers, discussion about patient experiences with healthcare and society. Ward20 (talk) 02:19, 11 November 2020 (UTC)
Doctor–patient relations section references are dated
Latest comment: 3 years ago1 comment1 person in discussion
Tagged section to be updated. Ward20 (talk) 02:47, 11 November 2020 (UTC)
diagnosed by cardinal symptoms
Latest comment: 3 years ago2 comments2 people in discussion
I did not know what a “cardinal symptom“ is, but on looking it up [1] it appears to be a diagnostic symptom. If this is the case is this little phrase not a tautology? “Diagnosed by diagnostic symptoms”? Either way, could some rewrite make this clear for the average reader? With all good wishes, Springnuts (talk) 10:28, 3 January 2021 (UTC)
However it was written, the first sentence tried to convey that this diagnosis requires the presence of "Primary Symptoms" or criteria, but additionally other symptoms are often present.[5][6] "Cardinal symptoms" attempted to convey this requirement. The second sentence describes the "Distinguishing core symptoms", but right now the first sentence, "...diagnosed by and involving a broad range of symptoms", I believe may be interpreted as simply a broad range of symptoms. This is not correct and needs clarification.
Suggest: ...is a complex, fatiguing, long-term medical condition diagnosed by required primary symptoms and criteria, often involving a broader range of symptoms. I reinserted 'often' because, rarely, other symptoms may not occur. Ward20 (talk) 21:27, 5 January 2021 (UTC)
Latest comment: 3 years ago1 comment1 person in discussion
The paper http://iv.iiarjournals.org/content/19/6/1013.long provides an overview on the studies on impairments in the rnase-L pathway and related pathologies. Why is there no section about this in the article? Has it been disproofen already? If so, at least a section mentioning that tis was a dead end should be mentioned. If it still undergoing research, a section should be included. — Preceding unsigned comment added by 2A02:8109:8680:3241:8C5:C6C4:FEB9:B169 (talk) 10:33, 7 January 2021 (UTC)
Latest comment: 3 years ago3 comments3 people in discussion
Both of these redirects currently point here, but neither is mentioned in the article. The first is probably not a problem – someone who searches for it and ends up here will probably rightly assume it's a synonym. The second is more of an issue, though, as "TATT" (or "tatt", which also sends readers here) can have various other meanings. Would it be appropriate to add the term to the lede section, or add a definition with the acronym somewhere else? – Arms & Hearts (talk) 15:14, 2 May 2021 (UTC)
TATT is a symptom, not a condition. Technically it should not redirect here but I am not sure if there is another more appropriate target for the redirect. JFW | T@lk 09:35, 3 May 2021 (UTC)
This NHS page suggests exhaustion or tiredness might be a suitable synonyms for TATT. Both of these redirect to fatigue. Might that work? Little pob (talk) 13:49, 3 May 2021 (UTC)
Cochrane CBT Review for CFS
Latest comment: 3 years ago2 comments1 person in discussion
Reference 26 [[7]] points to this version Cochrane CBT for CFS review of the 2008 (text says 2002) CBT review. There is a note there stating the review is no longer current. However, the version on Cochrane's site now shows an editorial note stating that, because the review predated the GRADE methodology, it "should not be used for clinical decision‐making." Does this warrant an edit? This ref appears in the lede of the main CFS article, but seems like a bit of an afterthought as it's presented somewhat out of context.
The GET for CFS review has been debated to death, but until the now-delayed NICE Guidelines revisions are published, I imagine Cochrane's status remains paramount here. I find the CBT review particularly odd as it includes studies that were never published (is this common?) as well as papers that either didn't select patients on the basis of any recognized CFS diagnosis, or claimed to use CDC's Fukuda criteria while omitting half of its requirements. Is it original research to point this out? It just seems strange for an organization as esteemed as Cochrane to select studies whose cohorts weren't even studying CFS, not to mention 4 out of 15 that weren't even peer-reviewed (along with the choice to utilize unpublished information from 2 other papers). But then one has to take into account that, being that the CDC has redefined ME/CFS, these reviews by definition select using criteria long determined to be outdated and inaccurate. That's on top of the reviews having been authored by the Common Mental Disorders group, whilst the CDC's website states that ME/CFS is a biological illness, not a psychologic disorder.
I doubt anyone reading this will care, but it strikes me that given the CDC's 2017 adoption of the criteria published in the 2015 IOM Report, that there's an awful lot of research that says it's about this condition called "Chronic Fatigue Syndrome," while the studies themselves, regardless of findings, were defined by cohorts selected by case definitions that have been deemed unfit and discarded. Serious question: how does that work in medicine? Is it still "CFS" research if it wasn't studying CFS, but an ill-defined entity? Is it still CFS research in a historical context, but not in a realm where it's valid to inform treatment guidelines or clinical practice? I suppose that's what the IOM Report & NIH's AHRQ DX & Treatment is for, to determine which of the old CFS research is valid and which is not? And given that Cochrane, long in conflict on CFS with CDC, NIH, etc., is now saying their review should not be used, where do they fit in to all of this? NeurastheniaMilkshake (talk) 20:31, 13 May 2021 (UTC)
Whoops. Apologies, I meant to post this on the Talk page for the CFS Treatment article. I can move it there if it makes sense. I do think an edit may be warranted on that article based on the Cochrane note, but I wasn't suggesting to bother with the main article (although I'm not sure why there's a properly qualified statement about the NICE draft that would merely report it as a notable document from a reputable source without editorializing about its content?). I mean, I do think it's a worthy development, but not worth a talk page war. NeurastheniaMilkshake (talk) 21:45, 13 May 2021 (UTC)
Latest comment: 2 years ago2 comments2 people in discussion
I was fairly sure "brain imagining" in the caption below the opening image should be "brain imaging" and decided to go ahead and edit, but would someone responsible for this article please take a look? 2600:1017:B803:FEE:0:45:3938:501 (talk) 05:20, 20 June 2021 (UTC)
Good. Thanks for the improvement. Ward20 (talk) 05:45, 20 June 2021 (UTC)
Lyme Disease
Latest comment: 2 years ago2 comments2 people in discussion
As already tagged - the reference for lyme disease does not refer to it at all. Can we take the mention out altogther? It's implied in the main article on Chronic Lyme Disease that it's unlikely that a reliable source for this claim can be found NBeddoe (talk) 09:20, 30 May 2021 (UTC)
Didn't see this until now. By going to the archived version of the specified source, the material is supported by that source. The CDC has extensively revised the links and material on ME/CFS over the last few years. Ideally, a newer source should be obtained verify or refute what the article presently states.Ward20 (talk) 06:11, 20 June 2021 (UTC)
Additions to the Research section
Latest comment: 2 years ago2 comments2 people in discussion
Hi All. I added a short paragraph about some blood testing studies as there's not much in the Research section. I haven't really written any wikipedia entries before.
121.74.109.35 (talk) 04:42, 30 June 2021 (UTC)
Thank you for your contributions. There are some conventions that apply to articles, and medical articles in particular. Secondary sources were available for the material, and should be cited to validate the medical information from the studies. Please review WP:MEDRS: "Primary sources should generally not be used for medical content – as such sources often include unreliable or preliminary information, for example early lab results which don't hold in later clinical trials." Thanks. Ward20 (talk) 18:40, 30 June 2021 (UTC)
Lowered awareness
Latest comment: 2 years ago3 comments2 people in discussion
Anyone can tell that the disease may be described in terms of lowered awareness? Any terms? AXONOV(talk)⚑ 10:33, 11 August 2021 (UTC)
There are some references given in the Neurological section that may help answer your question. Ward20 (talk) 18:03, 11 August 2021 (UTC)
Latest comment: 2 years ago2 comments2 people in discussion
In the section "Controversies" the articles stats that "sociologists hypothesized that stresses of modern living might be a cause of the illness" but does not provide any form of reference for which sociologists in which context and at which time. — Preceding unsigned comment added by 192.252.228.196 (talk) 22:22, 26 November 2021 (UTC)
Asked for citation. Ward20 (talk) 06:53, 14 January 2022 (UTC)
Prognosis
Latest comment: 1 year ago2 comments2 people in discussion
Added update template as section relies on one reference from 17 years ago. Said systematic review talks about patient attitude and beliefs about the condition affecting prognosis; this is problematic as condition is now widely acknowledged as not psychological/psychiatric in origin, which was not the case in 2005. Genericist (talk) 01:04, 26 March 2022 (UTC)
Latest comment: 1 year ago4 comments2 people in discussion
Hello. I added File:Cfs woman sketch.jpg to the infobox in this edit, and Roxy the Dog then reverted it. So let's WP:BRD. This article needs something to identify and illustrate it, given its importance (a common chronic medical condition). Since my initial proposal lacks universal support, I'd like to bring in other views here. I tend to take the view that every article should have an image if possible, and I'd like to find a photo/diagram with consensus support. This has been discussed way back in 2015, but there's been a lot of developments in ME/CFS (and potentially new content) since then. Here are some ideas:
Status quo, no image.
The drawing, File:Cfs woman sketch.jpg. I don't have any problems with it. It's the voice of a patient. It adds so visual identification. But it's arguably emotive, and not very informative.
I would be in favor of a Venn diagram that shows symptomatology and the various definitions showing the complexity of the disease symptomatology, and also the definitions that make it hard to interpret test results. I found two examples. The first one is from the Bateman Horne Center 2018. The second one is from a Journal of Translational Medicine review 2020 that states: "All data analyzed during this study are available in the public domain", which may be enough to remove copyright issues. The Journal of Translational Medicine diagram may be too complex for a thumbnail picture though. Ward20 (talk) 05:07, 17 July 2022 (UTC)
Are there any research for Chronic Fatigue Syndrome being done?
Latest comment: 1 year ago2 comments2 people in discussion
I would like to know of any research programs for Chronic Fatigue Syndrome? 50.25.168.180 (talk) 20:57, 14 October 2022 (UTC)
Hello and welcome to Wikipedia! Unfortunately, Wikipedia is not a forum. The purpose of talk pages is to hold discussions to improve Wikipedia. It's not for a general discussion of the topic discussed in the article. The article provides some basic coverage in the Research section though. But if you want to discuss this, it's a question for one of the various websites, forums, and social media pages dedicated to ME/CFS online. The Quirky Kitty (talk) 16:12, 16 October 2022 (UTC)
Frequency must be either incidence or prevalence
Latest comment: 1 year ago9 comments4 people in discussion
In the intro table, this should be listed as either prevalence or incidence. Frequency is not a measure of human disease because it is vague. Frequency has no useful meaning. Gobucks821 (talk) 15:08, 12 January 2022 (UTC)
Thank you. Good catch, cited sources agree with terminology. Changed. Ward20 (talk) 06:47, 14 January 2022 (UTC)
@Ward20: I've only just seen your comment above, having come to the talk page to post that I've changed it back to frequency in the infobox pending a fix. Will continue over on the infobox template. Little pob (talk) 09:00, 14 January 2022 (UTC)
@Gobucks821: The request has been submitted at the Infobox medical condition talk page. Unless the change is approved, please do not attempt to use a different parameter other than the ones allowed by the template; as it only causes that information to be hidden from everyone. Little pob (talk) 16:35, 18 February 2022 (UTC)
@Gobucks821: that request has been actioned. Frequency still works; but incidence and prevalence are now also available if they are what the MEDRS use. As such, I've amended to prevalence again. Little pob (talk) 10:41, 21 February 2022 (UTC)
@Little pob frequency, incidence or prevalence, how can "The rate of prevalence is highest between ages 40 and 60" be when the graph shows "The incidence rate according to age has two peaks, one at 10–19 and another at 30–39 years" ? if this confusing to me, it must be confusing to others. Clarification ? SalineBrain (talk) 17:59, 27 November 2022 (UTC)
(Flying visit whilst on a break from editing) My interest in medical articles does not extend much beyond adding ICD codes; and it is outside of my current competency to be able clarify. Please consider tagging with {{Confusing section}} and/or approaching the editors over at WP:MED. Little pob (talk) 13:12, 30 November 2022 (UTC)
I looked at the sources and they don't give a cite for the statistic, but an obvious reason could be the small percentage of people that fully recover from the illness. In other words, when people become ill "(incidence)" many stay ill for very very long periods of time. Therefore the "prevalence" or population of people that have the illness increases with age so that the 40 to 60 range has a higher percentage than other age ranges. Not sure why the cut off is at 60. Perhaps mortality of patients, or the natural reductions of the immune system as people age (many studies show abnormally high levels of immune cytokines) decrease symptomatology of illness. Ward20 (talk) 03:05, 1 December 2022 (UTC)
Link to LongCOVID
Latest comment: 1 year ago2 comments2 people in discussion
Don’t have time to do this but would be great if someone included the relation to LongCOVID. An alternate term for ME is “Post Viral Fatigue Syndrome.” JustinReilly (talk) 15:10, 4 November 2022 (UTC)
Discussion of the similarities between ME/CFS and long Covid would be warranted. We're starting to get secondary sources acknowledging the similarity of the two and potentially Covid-19 as a cause of ME/CFS. The Quirky Kitty (talk) 12:10, 20 January 2023 (UTC)
Does gender affect the severity of ME/CFS?
Latest comment: 1 year ago2 comments1 person in discussion
The Physical Functioning section claims it doesn't, citing a study from 1991. I found a 2016 study that claims the opposite, that men are less severely affected. I can't find any secondary sources on the matter. Do we just delete it? The Quirky Kitty (talk) 11:41, 20 January 2023 (UTC)
I will delete it, as I've never seen any secondary sources discussing it. The Quirky Kitty (talk) 00:59, 1 February 2023 (UTC)
Possible link to EMF poisoning
Latest comment: 1 year ago6 comments5 people in discussion
Known as Electromagnetic Hypersensivity.
The known symptoms mirror that of Chronic Fatigue such as fatigue, tiredness, concentration difficulties, dizziness, nausea, heart palpitation, and digestive disturbances.
It cannot be argued that there is a correlation between a huge flare of new cases of Chronic Fatigue and the installation of the 5G towers.
More unbiased research on a link between the two needs to be carried out and openly discussd. 2A02:C7C:9222:BA00:2168:5234:C94E:1822 (talk) 15:59, 15 February 2023 (UTC)
Read Electromagnetic hypersensitivity and you will see that that subject is another one of those that is not really accepted as a medical condition at all. For us to try to connect it with this condition would be WP:SYNTH and isn't allowed. Accepted science would have to show the two are related/connected.
You are correct that "It cannot be argued that there is a correlation between a huge flare of new cases of Chronic Fatigue and the installation of the 5G towers", and causation has not been established either, so I'm not sure what you want wikipedians to do? - Roxy thedog 16:22, 15 February 2023 (UTC)
@Roxy the dog Unfortunately, the text statement "It cannot be argued that there is a correlation between a huge flare of new cases of Chronic Fatigue and the installation of the 5G towers" is an ambiguous sentence that does not reveal the writer's true beliefs. Actually, I interpreted opposite from what I believe you did. I think the writer believes there IS a strong link. Another example of ambiguity: "You cannot put too much water into a nuclear reactor". It would be better if the writer made a simple, short, declarative sentence: "Chronic fatigue correlates with 5G in the following manner...", since what is NOT is a larger universe to consider. SalineBrain (talk) 16:32, 16 February 2023 (UTC)
We rely on reliable sources for what we write, not what somebody on the internetz novel interpretation of what they think the writer of a phrase meant, rather than the meaning of the phrase.
Are you the IP above? - Roxy thedog 17:48, 16 February 2023 (UTC)
In science, there are always unknown, unproven, and disputed hypotheses. But the goal of an encyclopedia is to summarize knowlege; thus we must stick to what is fully known. In medicine this challenge is even more acute, hence WP:MEDRS. We base our claims on concepts that have made it into reliable sources, such as review articles that refine and summarize the conclusions of original research, or government guidelines written by experts.
It wouldn't be sensible to discuss a supposed connection with EHS here, as there's no good evidence supporting it, or even the validity of EHS as a diagnosis. "Chronic fatigue" is a symptom, whereas ME/CFS is a distinct illness with post-exertional malaise, a very distinct symptom. Besides, the buildout of cellular networks is hardly the only thing that's happened in the past few years. We know Covid-19 can cause prolonged fatigue and that long Covid symptoms can resemble ME/CFS, a disease known to be associated with infections. The Quirky Kitty (talk) 18:55, 16 February 2023 (UTC)
The fact that this condition pre dates "covid" and that many people struggling with this condition never had "covid" must be taken into consideration. This discussion has nothing to do with the coronovirus, but instead looking at other possible causes. There are many articles published on the national library of medicine detailing the ill effects on rats when exposed to the radiation celluar and wifi towers emit. And this is openly used in the research of diabetes type 1. So if rats suffer from Islet insulin secretion and content, lipid peroxidation, and antioxidant status in pancreas (aka diabetes type 1) when being exposed to 2.45 ghz for 4 hours a day for 45 days. How are other living creatures including human beings being affected when being exposed to 24-54 ghz 24/7? While its easy and conveinent to blame this condition on "covid 19" there is plently of research to suggest there are other plausable causes for cfs/me And that is what THIS discussion is about. 92.7.54.248 (talk) 22:17, 18 February 2023 (UTC)
Please do not change ME/CFS to CFS indiscriminately
Latest comment: 1 year ago6 comments4 people in discussion
I believe following the convention that if the specific material in the article comes from a review that names it ME/CFS, that's the term that should be used for that specific material. If the review calls it CFS, it should be called CFS for that particular material. That way the article can reflect current nomenclature used in the journal articles. The nomenclature has been gradually changing over time. Thank you. Ward20 (talk) 07:32, 4 February 2023 (UTC)
I drafted those paragraphs using the term ME/CFS because I don't like the term CFS. I was under the impression the consensus was to use only CFS, so I intended to change it to CFS before publishing, not wanting to rock the boat. Instead, I forgot and caught it later.
I prefer ME/CFS to CFS, but I'm very uninterested in sparking a naming debate. Following the sources is a good interim step, and I intend do that from now on (but I might forget). The Quirky Kitty (talk) 09:08, 4 February 2023 (UTC)
I believe following the lead of the nomenclature for the specific material from the cite is the best NPOV. Ward20 (talk) 07:14, 5 February 2023 (UTC)
In my judgment, the name of the article should clearly be “ME/CFS” at this point since that’s what the majority of review articles, authoritative texts (Harrison’s etc.), NGOs and particularly authoritative public health sources (eg CDC, NIH, FDA, WHO inc. ICD) have denominated it for quite a while. JustinReilly (talk) 08:05, 10 April 2023 (UTC)
You mention some other acronyms; for each of these, the wikipedia article spells it out in the title:
That's not because the acronyms are problematic or less commonly used; that's because the spelled-out names are better titles in a general encyclopedia. I think that goes for ME/CFS too. (The case is not clear-cut; e.g., the article on the North Atlantic Treaty Organization is titled just NATO.) Nø (talk) 10:19, 10 April 2023 (UTC)
Sorry, I meant I think the title should be changed to “Myalgic encephomyelitis/ chronic fatigue syndrome,” I was just too lazy to spell it out… 😊 JustinReilly (talk) 18:12, 10 April 2023 (UTC)
Mention of psychiatric causes in cognitive function section
Latest comment: 1 year ago19 comments6 people in discussion
Currently, the article says in the section on symptoms and cognitive function, "Some researchers believe psychiatric causes underlie or contribute to the illness, while other researchers believe the illness causes biochemical and sociological changes in people that produce the symptoms."
The consensus on ME/CFS has swung strongly in the biomedical direction in the past 5-10 years and very few secondary sources from this period (especially in the later half, or in gov't guidance, quite high on the hierarchy of evidence) support a biopsychosocial model of ME/CFS. The idea that "psychiatric causes underlie or contribute to" is a clear minority view. Saying "some" support one model and "some" support another, as if it's nearly 50/50, is undue weight. If we mention this, we need to portray it as a controversial minority. The Quirky Kitty (talk) 03:31, 7 April 2023 (UTC)
I agree and it also seems shoe-horned into that section. I’m going to remove; suggest discussing phrasing and placement here. Innisfree987 (talk) 04:05, 7 April 2023 (UTC)
The watershed review where the causes of ME/CFS symptoms changed away from atypical depression was The IOM's 2015 "Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness". Reviews supporting the psychiatric causes attributions generally used references from the 1980s and 1990s. After 2015, the distinctions are similar to these:
Larkin 2017: "It is clear that there is a significantly shared co-morbidity with depression and CFS [43]. It is also clear that depressive symptoms frequently coexist during the course of CFS [37]. Likewise it is evident that fatigue and somatic symptoms, which may include pain, muscle tension, and flu-like malaise will often be reported in courses of depression [43]. However, despite the shared clinical features there are significant dissimilarities between the two conditions, so much so that they are considered separate illnesses."
Noor 2021: Major depressive disorder (MDD) is another differential of psychiatric origin, which may present very similarly to ME/CFS... High rates of depression are seen in ME/CFS; however, it is not seen in all ME/CFS patients. Thus categorization as a purely psychiatric illness was dismissed in 2015 by the Institute of Medicine (IOM) (21). Whether high rates of depression are a result of one disorder affecting the other or simply due to a shared etiological pathway remains controversial. Nevertheless, recent research has shown that despite being closely interrelated ME/CFS and MDD are distinct disorders and should be clinically treated as such (22).
It would probably be prudent to describe the cognitive symptom of depression in ME/CFS using the newer review POV's in the Cognitive functioning section. Ward20 (talk) 06:54, 7 April 2023 (UTC)
Yes, agreed. Thanks for that. sciencewatcher (talk) 15:14, 7 April 2023 (UTC)
There is a lot of complex material on depression and anxiety, and now I'm starting consider it might be better to describe them in a Psychological symptoms section under the existing Pathophysiology designation. Ward20 (talk) 04:12, 8 April 2023 (UTC)
Yes, it should have a separate section, such as Psychiatric symptoms, or Psychiatric co-morbidity. sciencewatcher (talk) 15:43, 10 April 2023 (UTC)
Psychiatric co-morbidity sounds descriptive to current POV. How about expanding Management/Counseling? I envision more material in that section about counseling to manage daily living, along with emotional well-being. Ward20 (talk) 22:38, 11 April 2023 (UTC)
Deumer 2021 Another review that describes depression in ME/CFS in some detail, however I found the information in the different sections disjointed and somewhat contradictory. It could be because many authors contributed to the review. Ward20 (talk) 22:06, 7 April 2023 (UTC)
Grande 2023, “The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” also relevant: “we outline a psychotherapeutic approach […] taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention.” Innisfree987 (talk) 01:46, 8 April 2023 (UTC)
Sebaiti 2022] Very technical, Systematic review and meta-analysis of cognitive impairment in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). "...this suggests that mood or pain can mediate but not cause ME/CFS symptomatology." Ward20 (talk) 03:42, 8 April 2023 (UTC)
Bateman 2021] A ME/CFS best clinical practices summary. "...up to 91% of affected people (editor comment: PWME/CFS) are undiagnosed or misdiagnosed with other conditions, such as depression.1" "...depression and anxiety in ME/CFS is similar to that in other disabling, chronic illnesses." "...fatigue and a reduction in activities can be seen in both ME/CFS and depression or anxiety" (Conditions synergistic). Treat "secondary depression/anxiety" for improvements in "quality of life and severity of symptoms." Ward20 (talk) 03:42, 8 April 2023 (UTC)
Maksoud 2020 Review of neurological impairments in ME/CFS using neuroimaging techniques. "Almost all studies found depression, anxiety, pain and fatigue scores were significantly higher in ME/CFS patients compared with Healthy Controls." Ward20 (talk) 03:42, 8 April 2023 (UTC)
Not a surprise, and it would be close to impossible to separate cause and effect in most cases. Guy (help! - typo?) 09:53, 11 April 2023 (UTC)
Agree with quirky kitty JustinReilly (talk) 07:51, 10 April 2023 (UTC)
Of course you do, as one of the handful of editors determined to use Wikipedia to turn CFS into a form of encephalomyopathy, regardless of the lack of physical evidence. But the etiology remains unknown, according to every reliable source, and there is no physical marker discernible in tests or at autopsy. Guy (help! - typo?) 09:56, 11 April 2023 (UTC)
Your comment has a derisive tone and is inapposite. The Etiologic agent(s) have not been determined, but what is known about it beyond cavil is that the etiology is NOT psychiatric. As Kitty noted, National Academy of Science said this back in 2015. Most of the studies in the early years/decades were psychological and not one came up positive AFAIK. And a good deal of pathophysiology has been discovered, and it’s all organic, not psychiatric.
For the purposes of this discussion, whether or not it constitutes frank Encephalomyelitis is irrelevant. What is relevant and dispositive is the fact that reliable sources state that it has been proven organic, not psychogenic. JustinReilly (talk) 10:37, 11 April 2023 (UTC)
All of that is irrelevant, as the discussion is not about whether the illness is psychiatric, it's about updating the info discussing psychiatric symptoms. There is no dispute about that...all the reviews, NICE guidelines and CDC all discuss psychiatric symptoms and say they should be treated if present. What differs in the sources is whether these symptoms are higher than for other serious illnesses. But that's not a problem...we just parrot the sources on wikipedia, so we can include reviews that give both viewpoints, based on their weight. As for whether the illness is psychiatric or not, that's a separate issue, which is discussed briefly in various points in the article, but could probably use a section in its own right. Again, there are various viewpoints, and many of the reviews tend to disagree with CDC, IOM and NICE. However that doesn't mean we ignore those reviews. Again, wikipedia just parrots the sources based on weight, so we just include both. That's how wikipedia works, it doesn't try to nail down the illness to a specific viewpoint. If that's what you want, me-pedia does a great job of it. sciencewatcher (talk) 17:41, 11 April 2023 (UTC)
Agree, stay with discussing material and weight from sources about this topic. Open a new section for other issues.Ward20 (talk) 22:38, 11 April 2023 (UTC)
One issue is whether it should be framed- as you do- as “psychiatric symptoms” as part of the illness (regardless of the rate at which they (co-)occur- less, more or the same, as other serious illnesses- I haven’t looked at the literature in recent years but in past years the reviews were saying that they co-occurred- both during and prior to Illness onset- at rates lower or similar to those in other serious organic illnesses).
Would you say that cancer and ALS have “psychiatric symptoms” or would you say pwC and pwALS often have co-morbid depression and anxiety since co-occurring higher-than-baseline depression and anxiety disorders are a result of having a serious illness and are neither proven causes nor part of the diseases themselves.
I would obviously say the latter approach is appropriate. And
Assuming, arguendo, that rates are similar or lower for ME, then I definitely would say psychiatric sequelae are co-morbid disorders to ME resulting from dealing with a serious illness and note that it’s a lower or similar rate as in other serious illnesses and not part of the illness.
Note that there is the real world danger of physicians conflating the two and misdiagnosing pwME with only psych disorders. The biggest harm being that CBT/GET is a very safe and effective intervention for depression and anxiety, but is the most unsafe and ineffective intervention for ME. Many pwME have had their illness seriously and indefinitely exacerbated by CBT/GET prescribed for (correctly diagnosed) ME, for ME misdiagnosed as depression and anxiety and for (correctly diagnosed) depression and anxiety co-morbid with ME. JustinReilly (talk) 05:38, 15 April 2023 (UTC)
Myalgic Encephalomyelitis is the name
Latest comment: 1 year ago30 comments11 people in discussion
Myalgic Encephalomyelitis is the original and proper name for the illness that should not be known as “Chronic Fatigue syndrome.” Chronic fatigue is one of the most common symptoms of Myalgic Encephalomyelitis but there are hundreds of symptoms of M.E. and hundreds of other illnesses that include chronic fatigue as a symptom.
The HALLMARK symptom of Myalgic Encephalomyelitis is Post Exertional Malaise (PEM). PEM occurs in people with ME when they have used more energy than is available to their bodies.
This is not regulated by caloric intake, because the energy depletion is on the cellular level. Human cells have mitochondria, these mitochondria regulate energy within each cell. Myalgic Encephalomyelitis and PEM indicates that there is disfunction in the mitochondria.
This is an over-simplification because my only credentials are first year biology, and the diagnosis of both Myalgic Encephalomyelitis and Fibromyalgia.
There are plenty of sources for this information like the Bateman Horne Centre, drricarseneau.com, NIH?NHS? Complex Chronic Diseases Program at BC Women’s Hospital, to name a few. 2604:3D08:3684:E300:B4CF:F93E:F2B9:6E8B (talk) 01:01, 7 February 2023 (UTC)
In my judgment, the name of the article should clearly be “ME/CFS” at this point since that’s what the majority of review articles, authoritative texts (Harrison’s etc.), NGOs and particularly authoritative public health sources (eg CDC, NIH, FDA, WHO inc. ICD) have denominated it for quite a while. JustinReilly (talk) 08:04, 10 April 2023 (UTC)
Seconding this. ME/CFS is used in the vast majority of recent and reliable sources. The article should be moved to "Myalgic encephalomyelitis/chronic fatigue syndrome". (It's legal to have slashes in main namespace page titles by the way) The Quirky Kitty (talk) 00:38, 11 April 2023 (UTC)
Not sure this is going to fly. Following many years of acrimony following the initial split of the page, one of the first of the more recent attempts ME/CFS or CFS/ME?, 4-2018 was flatly rejected by editor @Roxy the dog who stated "It should not be called ME as no myelitis has been demonstrated."
A subsequent attempt one year later Time To Change Page Name to ME, 9-2019 @Jfdwolff pointed out that "actual evidence of encephalomyelitis has never been consistently found," while @Roxy the dog reiterated "But it isn’t encephalomyelitis, and so it shouldn’t use that name." A list was produced of public health agencies that have incorporated ME into their nomenclature, but this was rejected by @Global Cerebral Ischemia as cherry-picking, given that CFS was apparently the more prominent term that one would encounter via a Google search. Also, "I get the sense that individuals who suffer from this condition want a name change because ME sounds more "medico-scientific...I freely admit that I personally think this is misleading (since there is no unambiguous evidence of an actual "encephalomyelitis,"
Another year passes,, and a discussion First Sentences: Discussion, 5-2020 on re-working the beginning of the page prompted @JzG contention that "I am pretty clear what all this is supposed to mean: refactoring the article to reflect the belief that CFS is really and only "myalgic encephalomyelitis" despite the lack of convincing pathology to show that it is encephalomyelitis. You know, exactly what the "ME" activists have been trying to do here for well over a decade."
Not long afterward, an effort was made Research published since 2015 shows a gradual change in direction, 5-2020 to demonstrate that over the past several years there had been a major shift in the scientific literature. A notable response featured @JzG weighing in again: "it's pretty clear that CDC has been lobbied hard by the "ME" community. It's extremely rare for them to adopt a term like "myalgic encephalomyelitis" when, as they state, there is actually no known cause, no diagnostic or pathological test, and no evidence that it is a form of encephalomyelitis."
As the CDC had firmly resisted such lobbying for decades, this doesn't seem logical, but this is not a forum, after all.
So, regardless of what anyone else, like the CDC, NIH, or NICE happens to call it, I am a bit skeptical that will matter here. I'm a bit surprised that what public health agencies label illnesses doesn't seem to matter, whereas editors' personal opinions do. I thought I'd read somewhere that Wikipedia's mission was to reflect not 'truth,' but that which was verifiable. Not on this topic apparently.
As a final aside, even the updates Hallmark symptom is post-exertional malaise, 7-2020 towards having the page reflect what's been consistently described as the defining feature of the illness? "All of which is irrelevant," according to @Alexbrn.
Anyone who reads the early talk archives for this page can see that there was a long history of contentiousness, which includes some behavior from ME advocates that could, in my view, be reasonably described as hostile. In the recent past? The scientific review process has led to significant reappraisal and redefinition, not in the realm of Beall's list, but at entities like the CDC and NICE, among others. Seemingly every adjustment has been contested. Curious if you have any thoughts @The Quirky Kitty
All of those are three or more years old at this point. Weighing in as a third vote in favor of ME/CFS as the consensus name in science at this point. Innisfree987 (talk) 05:22, 11 April 2023 (UTC)
Yes that is my understanding of current usage in high-quality sources (like the ones recommended in the standard health sources template at the top of this page). Innisfree987 (talk) 06:33, 11 April 2023 (UTC)
Debating the debate
I've seen the archived discussions, and avoided stepping on the third rail lest we go in circles again. But when a new discussion developed, I added my opinion. It's reasonable to have another discussion. The last one was almost 3 years ago and much has changed since then. The new NICE guideline came out, many sources have been published, long Covid raised interest, and ME/CFS has become entrenched over CFS for long enough that recentism is much less a concern. Wikipedia tells us consensus can change and only to abandon discussions when the outcome is almost guaranteed, which isn't the case here.
Naming
The name ME/CFS most closely aligns with Wikipedia's guidelines, and the counterarguments that patients advocates pushed ME/CFS and that neuroinflammation hasn't been demonstrated are comparatively weak. Article titles and the medical manual of style tell us to use to follow reliable sources and editor consensus.
General Naming Guidelines
Namely, the guidelines tell us, "Generally, article titles are based on what the subject is called in reliable sources." As the great majority of reviews and guidelines say ME/CFS, this criterion strongly favors that. They recommend 5 other criteria:
Recognizability: As ME/CFS contains CFS, it's marginally less recognizable than bare CFS.
Naturalness: Both ME/CFS are in common use on the Web and social media, but CFS may be more common among those less familiar. Slightly favors CFS?
Precision: As chronic fatigue syndrome is often equated with generic chronic fatigue, and implies nothing about other symptoms (especially PEM), ME/CFS does much better here.
Concision: CFS has a clear advantage in this area.
Consistency: Referring to the medical manual of style, ME/CFS would be strongly preferred.
What does the ICD-10 use? Post-viral fatigue syndrome and ME (Source). The ICD-10-CM (American version) seems to use ME/CFS first (Source).
Evaluating counteraguments
Lack of demonstrated neuroinflammation: Many medical names have some degree of anachronism or inaccuracy. For example, influenza, autism, and the Spanish flu. Thus it's difficult to dispute the use of an established term on the basis of accuracy.
Health agencies being biased by patient advocates: Regardless of who originates an idea, the output of agencies is still carefully edited and reviewed by experts. After all, every popular idea started out as fringe or obscure before gaining acceptance. And use of ME/CFS is common across agencies and publications. The Quirky Kitty (talk) 07:53, 11 April 2023 (UTC)
The problem is that there is still no evidence that it's a form of encephalomyelitis. I know that some patients hate the term CFS, but that's what it is. Guy (help! - typo?) 09:52, 11 April 2023 (UTC)
Hard for me to see how a Wikipedia editor’s personal view of a name’s legitimacy is any more germane than patients’—ie, not at all. We follow reliable scientific sources. No? Innisfree987 (talk) 10:47, 11 April 2023 (UTC)
Thank you for responding, @The Quirky Kitty. I wish I could say I'm surprised at some of the response given these guidelines, i.e. Wikipedia:Verifiability, not truth, but the double standards employed on this topic must have existed for so long for some reason or another. I thank you for your diligence and hard work in working on this page. For the most part, the sources that have redefined the condition should have long been deemed credible enough to support the edits you have worked on. Along with others, of course, but so many worked so hard for so long, only to see so much of their work dismissed. Sometimes appropriately, too often insultingly. I'll refrain from getting any more personal about this or that editor. I never thought the name issue was of primary importance, actually. I just think it's a fiasco that it's hard to think of another topic where sources that were at one point unquestioned, have seen their re-naming of an illness ignored by this website for nearly six years, because this or that editor says they have no basis for doing so. NeurastheniaMilkshake (talk) 12:22, 11 April 2023 (UTC)
What does the ICD-10 use? ICD-10 is no longer maintained, and we should be looking at ICD-11. Whilst that also lists CFS and ME as inclusion terms at postviral fatigue syndrome,[8] such inclusions are not always synonyms.[9] WHO briefly explain their classification choices for CFS in ICD-11 here. Given the resistance displayed, a name change will probably have to go down the formal WP:RM route. Little pob (talk) 13:00, 11 April 2023 (UTC)
Thanks for pointing out the ICD-11.
A name change will definitely require a requested move. In fact I'd like to formally propose one but I don't know the best way to given that a discussion is already in progress. Should I do it now or wait until this discussion slows down? The Quirky Kitty (talk) 23:40, 11 April 2023 (UTC)
Probably worth dropping a post at the RM talk page. If nothing else it'll hopefully get more voices in the conversation. Little pob (talk) 09:32, 12 April 2023 (UTC)
They said to reference the previous discussion. The Quirky Kitty (talk) 08:43, 15 April 2023 (UTC)
Page break for editing purposes
I was actually inclined to agree with ME/CFS, but now looking at ICD-11, it's clear that would be a mistake. I agree that the plain, unambiguous fact that there is no actual evidence for encephalomyelitis is irrelevant and that what's at issue here is the recognized medical name used in high quality sources. I think the context provided by WHO in ICD-11 is very much appreciated: "In response to the proposals, WHO conducted an extensive literature review of research relating to chronic fatigue. The review found that there remains insufficient evidence to classify chronic fatigue as an infectious disease, at this time. The review also confirmed the lack of consensus on a reliable diagnostic pattern of symptoms, the continued debate about etiology and the absence of any uniform or reliable treatment. The only constant in the studies reviewed was the lead symptom of ‘fatigue’, persistent over time." It is my personal belief that the terminology "myalgic encephalomyelitis" has no scientific basis and its use is the result of lobbying by advocacy groups to give CFS a more "medico-scientific" name. I think it's wrong to believe that patients with CFS cannot be provided adequate care without distorting biomedical reality in an effort to alter opinion among the public and healthcare providers. ICD-11 makes it clear that the scientific or recognized medical name has not yet been determined. Global Cerebral Ischemia (talk) 03:27, 12 April 2023 (UTC)
Patients & patient groups clamoring for ME over CFS because it's more science-y has accomplished exactly what since 1988? If you believe their lobbying is what led CDC to officially change the name, as opposed to the emergence of the findings emphasized by the IOM report & the revised NICE guidelines, that's your choice. I happen to believe renaming this illness after a figure such as Ramsay might at least lead to energy better spent on the larger problem.
I think it might be helpful to try to determine how much credibility, if not authority, the US CDC actually holds in this arena. In October the ICD 10-CM adjusted their coding, adding G93.32 for, you guessed it, ME/CFS. And that name is what shows up whether you search for ME [10] or CFS [11]
The FAQ sheet linked above from states "WHO conducted an extensive literature review of research relating to chronic fatigue," which in ICD-10 CM is still R53.82 [12]. It also "confirmed the lack of consensus on a reliable diagnostic pattern of symptoms," which is, at least to some extent, in conflict with the IOM Report, and the case definition it produced which the CDC adopted the same day in July 2017 when they officially revised their materials and changed the name to ME/CFS. Of course, 'consensus' is...complicated, and, to be fair, there remain those whose guidance has not undergone review and subsequent revision in the manner of, say, NICE. Australia and Denmark would be examples, although DK does have that conflict between the health authorities and the government.
In any case, ICD-11's 8E49 still lists ME as well as CFS under PVFS, so I just don't see your post here as all that convincing. You people want to continue to keep this page named in a way that doesn't conform with the public health agencies you're always saying are amongst the most reliable medical sources on the face of the earth? Your sandbox, your rules. Have at it. NeurastheniaMilkshake (talk) 05:09, 12 April 2023 (UTC)
Beyond authoring the base classification (i.e. ICD-10), and giving the American government permission to adapt to the needs of the US health care system; it's not stated how much influence WHO had – if any – over ICD-10-CM's design. Regardless, ICD-10-CM is written for use in the USA and its classification of conditions should not be used in preference to WHO's versions of ICD-10 or ICD-11. CDC are an authority, but not the authority. Little pob (talk) 09:29, 12 April 2023 (UTC)
No, and I don't think they should be, nor do I think it's wise to be US-centric about this. But the term "CFS" came from them, and the most-used case definition was theirs...their authority on the name was absolute on this page to the point where the ME page went poof, essentially taking with it ICD's G93.3. So much for the authority of the WHO, hmmm?
Then one day CDC changed the name, and their authority defended zealously on this page for more than a decade vanishes just as suddenly. So if they're no longer the authority on what to call this, who is? Why? What changed? And why is it that it looks like an issue in actual control of a number of editors engaged in "Original Research," as opposed to "Verifiability" over "Truth." NeurastheniaMilkshake (talk) 10:35, 12 April 2023 (UTC)
I only chimed in because the ICD was being mentioned and now respectfully bow out. Little pob (talk) 11:16, 12 April 2023 (UTC)
Not being US-centric is a good point. Even today, British media and patients lean more towards ME and Americans CFS.
The WHO, if anything, leans toward CFS weakly. (Thank for pointing out that the ICD-10 is deprecated.) The ICD-11 includes both ME and CFS. The only WHO page I can find prefers CFS, but it's a brief article on coding rather than a comprehensive description or even a summary of the subject. The Quirky Kitty (talk) 21:28, 12 April 2023 (UTC)
FYI, listed under 08 Diseases of the nervous system/8E49 Postviral fatigue syndrome. Ward20 (talk) 23:57, 12 April 2023 (UTC)
Re: ICD. Some background on WHO ICD: The Illness we now know as ME or CFS was first included in ICD in 1968 as ME at G93.3 (G was “Diseases of the Brain) and it remained there as WHO ICD’s name for the disease ever since. At some point after CDC re-named “ME” to “CFS” in the US, WHO started indexing the term “CFS” to the main term “ME,” but not including “CFS” as a code; ie “ME” was WHO ICD’s sole term for the disease, but they included “CFS” in the index (which directed people to “ME”). AFAIK, this was the case all the way until sometime in the last 5-10 years when the code was changed to the present “Post-Viral Syndrome” under Other Nervous System Diseases with “ME” and “CFS” listed as included terms (I think they might be called). Note there was never a code for “ME/CFS” and never a code for “CFS” until recently (when it was put alongside “ME” under “PVS”).
That short page on WHO re “CFS” in ICD does in itself support “CFS” and even “CF” over “ME” or “ME/CFS” as the latter two terms are not mentioned. But when taken in the overall context of WHO ICD, including the history of ME in ICD, IMO “Post-Viral Syndrome” would be the favored/indicated term, with “ME” a close second and “ME/CFS” and then “CFS” following. But because of its lack of use elsewhere, “PVS” is not a contender.
I’ll note that the shortening to “chronic fatigue,” which happens here on this WHO page on “CFS” in ICD highlights the extremely serious problem with the term “CFS,” that “CFS” very often gets shortened to just “chronic fatigue,”- in a large majority of lay press pieces especially, and in headlines almost always; and very often even in authoritative medical sources where you would hope more care would be taken. The problem of course is the conflation of “CFS” and the symptom of “chronic fatigue” and the illness “idiopathic chronic fatigue.” As is often said, this would be like renaming “Alzheimer’s Disease” to “chronic forgetfulness syndrome,” which while technically accurate would be extremely inappropriate. Reliable sources would shorten it to “chronic forgetfulness” and research quantity and quality, treatment and medical and lay understanding of the disease would resultantly seriously degrade. JustinReilly (talk) 06:58, 15 April 2023 (UTC)
In terms of media use, which affects recognizability and naturalness, there's a weak trend towards ME alone since the pandemic. For example, Understanding myalgic encephalomyelitis in Science. The Quirky Kitty (talk) 21:34, 12 April 2023 (UTC)
While there is indeed still no evidence of inflammation or encephalitis (neuroinflammation is something different), still all the high quality sources now use the term ME/CFS. It is indeed because patients prefer that (incorrect) term, but still, that is the term that is now used, so the article should probably be changed to it. I would suggest going down one of the arbitration routes if there is still disagreement on this talk page. sciencewatcher (talk) 17:41, 11 April 2023 (UTC)
Does anybody know what "frank Encephalomyelitis" is? - Roxy thedog 15:52, 11 April 2023 (UTC)
I’m assuming you’re referring to my using that term below in the topic “Mention of psychiatric causes in cognitive function section.” By “frank” I meant “clear, uncontestable, classic case.” It’s my sense that this is a use of “frank” in medicine to describe a very clear case of an illness (or of a sign). JustinReilly (talk) 16:56, 11 April 2023 (UTC)
I apologise. I thought you used it in this thread. I have never seen frank used this way anywhere. in all my life. 67 years. Roxy thedog 02:49, 12 April 2023 (UTC)
I believe it’s a bit of an archaism. If you google “a frank case of” and “medicine”, mainly you’ll see hits from the mid-20th century, altho not exclusively. (Or at least I do, I don’t really know how an algorithm may be affecting my results.) Innisfree987 (talk) 06:46, 15 April 2023 (UTC)
Authority over Chronic Fatigue Syndrome
Latest comment: 1 year ago2 comments2 people in discussion
Who is the "authority" over Chronic Fatigue Syndrome?
Doctors or "researchers" who were not associated with the inception of this syndrome?
Who can be seen to know nothing about CFS by comparing their erroneous opinions against the documents of the 1980's.
Can the documents be used to over-ride them? EriktheMoldWarrior (talk) 20:48, 6 May 2023 (UTC)
You can read about what Wikipedia uses as authoritative medical sources at WP:MEDRS and WP:MEDREF. Briefly: “Biomedical information must be based on reliable, third-party published secondary sources, and must accurately reflect current knowledge.” Examples of secondary sources include review articles and consensus statements from experts. So no, we do not use old primary sources to critique current secondary sources; that would be considered original research which is barred on Wikipedia. The route would be to take it up with the authorities you disagree with, and if they revise their view, then bring the new secondary sources to WP. Innisfree987 (talk) 21:21, 6 May 2023 (UTC)
Requested move 15 April 2023
Latest comment: 1 year ago55 comments20 people in discussion
The following is a closed discussion of a requested move. Please do not modify it. Subsequent comments should be made in a new section on the talk page. Editors desiring to contest the closing decision should consider a move review after discussing it on the closer's talk page. No further edits should be made to this discussion.
The result of the move request was: no consensus. This essentially boils down to whether "myalgic encephalomyelitis/chronic fatigue syndrome" (ME/CFS) is the common name for the condition or not. Supporters argue that it is, especially when it comes to medical sources, while opposers argue that the current title is the more common name. I also note some opposers, both here and in the related discussion above, argue that "myalgic encephalomyelitis" is not an accurate name for this condition, a statement supporters disagree with.
I'm closing this as no consensus; I'm just not finding enough agreement to move this article at this time. (closed by non-admin page mover) SkyWarrior 15:51, 10 May 2023 (UTC)
Oppose, the current title is far and away the most common name. Let's not confuse readers with inside-baseball jargon. Randy Kryn (talk) 15:01, 15 April 2023 (UTC)
Support. Per The Quirky Kitty. Making sure Wikipedia reflects the term readers will find used by most major, reliable medical sources is certainly not inside baseball. Innisfree987 (talk) 15:06, 15 April 2023 (UTC)
(EC) Thanks, I was about to circle back to emphasize exactly this point: we don’t use personal opinion like this to decide Wikipedia content. We follow reliable sources: especially strictly for medical content. Meanwhile your Google terms search does not include the proposed title (and again, we’re talking about medical content. Not all sources are equal here.) Innisfree987 (talk) 15:18, 15 April 2023 (UTC)
I attempted to do an n-gram for ME/CFS, but I got this nonsense graph. Every written word up until about 1982 was the word "myalgic encephalomyelitis/chronic fatigue syndrome". While it dropped in popularity, but by 2019, was still several times more common than the word "the".
Out of curiosity, I investigated the prevalence of the two terms in PubMed in the years 2013-2022:
Changing to ME/CFS is clearly warranted. The term ME has been commonly used outside the US, and CFS was used in the US. Most current sources now use ME/CFS to avoid confusion, although neither term is a good descriptor of what is known about the disorder. The combined term is clearly the most inclusive from a global perspective. 2601:283:4000:21A0:38ED:2253:66B0:C455 (talk) 15:02, 30 April 2023 (UTC)
Oppose. We shouldn't call an illness something it isn't. -Roxy thedog 15:31, 15 April 2023 (UTC)
Oppose. It would be irresponsible to label people with Chronic Fatigue Syndrome as suffering from inflammation of the brain and spinal cord (encephalomyelitis) when there is no evidence to support this. See 2021 report "No Signs of Neuroinflammation in Women With Chronic Fatigue Syndrome or Q Fever Fatigue Syndrome Using the TSPO Ligand [11C]-PK11195."
Also, we're only talking about the title, which meets all 5 Wikipedia requirements (recognizability, naturalness, precision, concision, consistency). The existing article text quickly says "also called myalgic encephalomyelitis (ME) or ME/CFS".
Also, there seems to be selective quoting of the 2015 IOM/NAM report, which is entitled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" and proposes to redefine the illness, including a name change. Some quotes about the name change from the report:
"the term 'myalgia' refers to a symptom that is neither a distinguishing aspect of this illness nor a severe symptom in many patients with ME/CFS."
"In what will likely be its most controversial recommendation, the committee has proposed that the name 'chronic fatigue syndrome' no longer be used to describe this disorder. The committee repeatedly heard from patients that this term was stigmatizing and too often precluded their receiving appropriate care. The committee instead determined that the name 'systemic exertion intolerance disease' (SEID) better characterizes the disorder for which its proposed diagnostic criteria were developed."
"In considering what name would be most appropriate, the committee turned first to 'myalgic encephalomyelitis' or 'encephalopathy' (ME), which was the name most commonly supported in the public comments. The committee, however, was concerned that the term 'encephalomyelitis' is not well supported by the evidence and that there is substantial controversy surrounding the two versions of this name. Neither version conveys the full complexity of this disorder."
In other words, the 2015 report doesn't think ME, ME/CFS, or CFS are suitable terms, but acknowledges that the statements about CFS are "controversial". I question the reliability of non-scientist activists who are commenting.
Given the lack of widespread support for SEID since 2015, I say revert back to CFS. What would change my mind? A broad consensus of neurologists supporting a name change.
I also object to "Myalgic encephalomyelitis" being first and propose that any name change to include it would have "Chronic fatigue syndrome" first. ScienceFlyer (talk) 18:29, 15 April 2023 (UTC)
I outlined in my original comment my opinion that etiology is of limited importance to nomenclature.
For what it's worth, the NAM report proposed SEID while using ME/CFS throughout--they appeared to favor ME/CFS among the established names.
CFS fails quite badly on precision vs ME/CFS. While ME implies the wrong thing about etiology, CFS implies the wrong thing about symptoms--that it's just fatigue. There are many other symptoms, and post-exertional malaise is frequently called the "hallmark" symptom, rather than fatigue. (Example) The term chronic fatigue syndrome is frequently confused with the chronic fatigue, perhaps the most nonspecific symptom ever. "Alloying" the terms together mitigates the weaknesses of both.
I question the reliability of non-scientist activists who are commenting. — User:ScienceFlyer
I don't see benefit in calling editors advocates; we both have POVs and can debate on merits without questioning people's motivations.The Quirky Kitty (talk) 20:08, 15 April 2023 (UTC)
I was talking about the activists who commented to the panel who wrote the 2015 report. I was not talking about Wikipedia editors. A lot of the leaders in the ME/CFS movement are fringy and unreliable. Activists shouldn't be used to judge the broader patient population. Basically, the 2015 report was heavily influenced by activists, which is why it uses the unscientific term ME/CFS while calling for a name change. ScienceFlyer (talk) 20:47, 15 April 2023 (UTC)
Let me strike out my comment then. I'm glad we're staying on a higher level.
The 2015 NAM report is a useful and reliable source, having been published by a prestigious institution, written by a large team of authors and editors, and based on an exhaustive literature review. Authors included Lucinda Bateman, Peter Rowe, Betsy Keller, Nancy Klimas--people who have extensively studied or treated ME/CFS themselves. I see no basis in disregarding their naming decisions on the basis that they took input from patients. On the contrary, there's no basis for dismissing the name ME/CFS because experts support it based on patient input. When making naming decisions, experts consider needs like following common usage and avoiding stigma. Regardless, ME/CFS is heavily used by sources independent of the NAM. The Quirky Kitty (talk) 09:01, 16 April 2023 (UTC)
Agree there were a lot of public comment submissions to the IoM committee by patient activists. This was because it seemed like NIH had set up the process, in conjunction with IoM to arrive at a pre-ordained result ratifying NIH & CDC’s positions at the time which were junk science stances. In any event, there were numerous scheduled paid presenters to the committee who were Wessley school types. They got long blocks of time, whereas patients were allowed very short public comment (written comment was allowed, but who knows if those were read).
There were 15 committee members, 7 paid staff, 3 paid consultants, 15 reviewers and a comprehensive 18 month study period, costing $1 Million. All of the committee members were accomplished clinicians and researchers. And most of the ME specialists and all of the non-ME had impeccable CVs. It’s laughable to suggest the IoM report was overly or inappropriately influenced by patient activists. JustinReilly (talk) 09:29, 24 April 2023 (UTC)
I see a comment from @Little pob above that ICD-11 (and ICD-10 before it) calls this postviral fatigue syndrome. Why is that name not being considered? WhatamIdoing (talk) 20:21, 15 April 2023 (UTC)
CFS is a syndrome based on symptoms, not whether there was a virus beforehand. Also, in the 80s, it was hypothesized that Epstein-Barr virus caused CFS, but this hypothesis was later discredited. (Reference) So at least one link to a virus turned out to be incorrect. ScienceFlyer (talk) 21:23, 15 April 2023 (UTC)
ME and CFS and its precursor terms, Post-Viral Fatigue Syndrome and Epidemic Neuromyasthenia all started out describing discrete outbreaks of disease in a manner that would suggest a microbial etiology. For EN and ME, these epidemics were usually in hospitals, often among doctors and nurses. PVS obviously still implies viral etiology and EN ended its “career” as an epidemic disease as implied in the name. The terms ME and CFS now include non-epidemic cases.
Three-quarters of ME/CFS cases are “triggered”/proximately caused by a viral or reported viral-like illness. EBV is highly associated with ME/CFS, but most cases are not triggered by mono, not all cases have high EBV titers and there are cases of chronic EBV infection without comorbid ME/CFS. Therefor, while certain viruses are highly associated with ME, as triggers and comorbid infections, PVS is not an appropriate term for some ME cases. JustinReilly (talk) 03:15, 16 April 2023 (UTC)
Three ME literate doctors in the 1987 Holmes committee analyzed the Lake Tahoe outbreak, which was investigated by CDC epidemiologists Jon Kaplan and Gary Holmes, and pronounced this ONE outbreak to "Posess all the primary determinants of ME". They did not analyze any other. But it was the Tahoe outbreak under consideration, for this had caught public attention and had all the new evidence generated by Drs Cheney, Peterson and Anthony Komaroff. They felt so strongly that this was ME that they walked out in protest at the plans to create a new name. This would surely support the view of combining ME and CFS.
Except the Tahoe evidence was not the same as evidence found in ME. Tahoe had no polio outbreak. Anti polio antibodies were not found. Instead, the Gallo lab identified a newly discovered herpes virus. Which came to be called HHV6A. (A strain. Not the roseola B strain)
If researchers were willing to use ME/CFS as an entry level starting point for further research, eventually learning that Royal Free ME and Lake Tahoe CFS had different viral clues and subsetting each, then ME/CFS might be workable as a research name.
But no researchers are doing this. Instead they throw out ALL history and evidence from both ME and CFS to make "ME/CFS" a new starting point with only PEM its basis.
Essentially meaning both ME and CFS have been sacrificed in order to restart the entire process. EriktheMoldWarrior (talk) 03:43, 3 May 2023 (UTC)
Please, keep in mind WP:NOTFORUM. This really isn’t the place to debate what medical authorities should have done. Innisfree987 (talk) 04:47, 3 May 2023 (UTC)
"This really isn't the place to debate what medical authorities should have done" is a nonsensical proposition.
If one refuses to see or discuss where the "error" was made, there is no possibility to correct it. EriktheMoldWarrior (talk) 15:37, 6 May 2023 (UTC)
Yes that’s right: there is no possibility to “correct” it here on Wikipedia. If you think medical authorities should have done something different, you (or others here expressing a similar argument) need to take it up with them. On Wikipedia our task is just to write down what they did say. Innisfree987 (talk) 16:30, 6 May 2023 (UTC)
Then the entire methodology of Wikipedia is only to enable the perpetuation mistakes?
Nothing on Wikipedia can be trusted, due to this odd perspective? EriktheMoldWarrior (talk) 20:42, 6 May 2023 (UTC)
WP’s quality control comes via standards for what’s considered a reliable source (I just detailed the medical policies in reply to your comment below), but yes it’s only reliable to the extent those sources are. We don’t undertake to revise them, per the WP:No original research policy. Innisfree987 (talk) 21:36, 6 May 2023 (UTC)
Erik, @Innisfree987 is correct. This “Verifiability, not truth” policy is discussed in this Wikipedia editing essay: WP:NOTTRUTH. The essay itself discusses in more detail beyond below except:
— … Not truth: It is not good enough for information to be true, and it is definitely not good enough for you to (perhaps wrongly) believe it to be true. Wikipedia values accuracy, but it requires verifiability. You are allowed and encouraged to add material that is verifiable and true; you are absolutely prohibited from adding any material that is un-verifiable, with zero exceptions—even if the un-verifiable material is True™..., Wikipedia:Verifiability, not truth
To some extent there must be bright line rules on Wikipedia or the disputes among editors would become (even more) endless. They can also be helpful IF people reading are aware of them, so they know what the criteria are for what’s said on Wikipedia. Problem is, people are not aware of Wikipedia’s rules, so like you (and me, before I started editing) the average person expects that when they clash, Wikipedia would value truth over what’s said in mainstream sources. Instead, there is a core emphasis on simply repeating mainstream sources as if they were the truth instead of saying: “this is what most mainstream sources say, but here is the truth;” or at least the more practical “this is what most mainstream sources say, here’s what a minority of mainstream sources say and here’s what a majority of non-mainstream sources say.”
I think that the latter is what Wikipedia should do in the near term, but I am not under any illusions that this shift will occur anytime soon. I think my first policy suggestion, that Wikipedia say “this is what most mainstream sources say, but here is the truth” should be incorporated in limited instances where it has been truly proven to Wikipedia that mainstream sources are false on some important issue. I think it should remain limited since conducting inquests into anything that was challenged would clearly be impracticable, but there
I think that it’s also really important for readers to know the most important policies for inclusion when they are reading Medical articles, since this can, and surely does, have great real world impact on people’s lives and health.
So, I think there should be a short summary description of the most important policies in a box at the top of med articles and a full description in a box at the bottom so people can know that anything true that is not in secondary or tertiary sources deemed by Wikipedia to be
“Reliable Sources” WP:RS, or in the case of medicine, “Reliable Medical Sources”: WP:MEDRS, will not be found on Wikipedia and statements Wikipedia knows are false, but constitute the majority view of these sources will be presented as true if they otherwise are acceptable to Wikipedia.
I think it would be a complete no-brainer to lead with a notice like this if Wikipedia really wanted to spread knowledge, not misinformation, so the fact they don’t gives me real pause.
But these type of discussions about dissatisfaction with core policies and other procedural issues are best had at places on Wikipedia other than on the article Talk pages. Not sure exactly where, though since I haven’t looked.
And innisfree is also right that the article talk pages aren’t really the place to have
factual/ substantive/ “on the merits”
discussions about the topic of an article.
The article talk page is really just the place to discuss, given Wikipedia’s policies and guidelines, what should be in the article.
Believe me, if you edit not in conformity with the policies and guidelines, it’s a complete waste of time since it will be reverted and the reversion of your edit will stand. JustinReilly (talk) 01:42, 8 May 2023 (UTC)
As I noted in the earlier thread, v few sources use the term “PVS,” so it’s a non-starter. JustinReilly (talk) 02:54, 16 April 2023 (UTC)
As JustinReilley said, PVFS is very rarely used. The Quirky Kitty (talk) 08:27, 16 April 2023 (UTC)
(Responding to ping) @WhatamIdoing in many instances the ICD lumps things together to keep the number of codes down. From the ICD-11 reference guide: Within the coded categories there are typically other optional diagnostic terms. These are known as ‘inclusion terms’ and are given, in addition to the title, as examples of the diagnostic statements to be classified to that category. They may refer to different conditions or be synonyms. They are not a sub-classification of the category.[13] (emphasis mine) As a coder; I am only qualified to comment that all three (PVFS, CFS, ME) have been classified within the same category, and not on the intent of ICD-10 and ICD-11 in listing them like this.
It is perhaps worth noting that SNOMED CT (SCTID: 52702003) lists "chronic fatigue syndrome" as its preferred term; listing everything else (except PVFS) as synonyms. The CFS term was apparently created in 2018, along side a separate term for PVFS (SCTID: 51771007). I should highlight that my knowledge of SNOMED CT is limited, however, so there may be technical constraints preventing the use of special characters (such as "/") appearing within the name of a term that I am unaware of. Little pob (talk) 16:17, 16 April 2023 (UTC)
Support. for the reasons laid out by me and Quirky Kitty in the above comment section, principally that over the past 5 years, it has been used by a good majority of WP:MEDRS.
I also object to "Myalgic encephalomyelitis" being first and propose that any name change to include it would have "Chronic fatigue syndrome" first. — User:ScienceFlyer
For the purposes of choosing an article title, I think we should treat “CFS/ME” and “ME/CFS” as each being a single term rather than each being a combination of two terms. If the latter were the case, neither would be the greatest choices, IMO, because of the “concision” criterion. “CFS/ME”
is rarely employed. I have only seen it used in three contexts: (1) in Wessely School papers (and their most recent work I’ve seen uses “ME/CFS”), (2) in only a tiny percentage of small patient organizations eg Rocky Mountain CFS/ME Assn. and (3) IACFSME, a medical society, but they used that only bc of web domain name considerations. So, IMO, “CFS/ME” should not be up for consideration.
It would be irresponsible to label people with Chronic Fatigue Syndrome as suffering from inflammation of the brain and spinal cord (encephalomyelitis) when there is no evidence to support this. See 2021 report "No Signs of Neuroinflammation in Women With Chronic Fatigue Syndrome or Q Fever Fatigue Syndrome Using the TSPO Ligand [11C]-PK11195." — User:ScienceFlyer
There are a ton of studies showing Neuroinflammation and they are reflected in the reviews and other WP:MEDRS. A primary source like this is not a WP:MEDRS source.
I personally think that SEID is the most appropriate name since it is accurate and reflects a pretty specific pathophysiology/symptom/sign complex (Exertion Intolerance). Unfortunately, it has not been widely adopted, so is not an option.
CFS is an extremely inappropriate name that has caused tremendous damage as I went into in a comment in above section.
The Federal CFS Advisory Committee (now defunct) subcommittee on nomenclature’s final recommendation perhaps 15-20 years ago (sorry I don’t remember more exact dates), recommended that the name be changed to either ME (to stand for either M. Encephalomyelitis or M. Encephalopathy- I think they may have leaned toward the latter) or ME/CFS. The rationale IIRC, as voiced by subcommittee member Harvard Med School Prof. Tony Komaroff, chief of internal medicine at Brigham and later editor in chief of all Harvard health publishing, was that the Neuro inflammation in ME did not rise to the level of that traditionally recognized as being encephalitis, but that given it was the long-standing name, it wouldn’t be out of bounds of medical nomenclature to retain the name. But that no one could object to M. Encephalopathy. My sense is that patients in general are good with ME standing for either one, as am I.
I think that Wikipedia’s guidelines preclude us from using M. Encephalopathy/ CFS since it has seen very little use. We can, I think, however, use ME/CFS and under nomenclature section offer the view (with due weight) that -pathy ending is not controversial and is accurate while -itis may not be IF we can find a source to support.
Frankly, though, as I’ve said in an earlier comment, we all know Wikipedia’s “verifiability, not truth” guideline and that the verifiability requirement is especially strict in medical articles. And as others have noted or alluded to, when this supported “CFS” and continues to support all kinds of harmful and inaccurate misinformation being stated as fact, the “other side,” has always jammed that guideline down our throats. I still strenuously object to the existence of that policy and now that you have changed your tune to a righteous insistence on accurate information, I hope to God you guys will all join me in trying to get it modified if you are in fact actually serious about not wanting Wikipedia to propagate misinformation. Pls contact me on my talk page if you are interested in that.
But Until it is changed, “the other side” is going to have to accept what’s good for the Goose is good for the Gander…
ScienceFlyer quoting IOM ME/CFS report:
”In considering what name would be most appropriate, the committee turned first to 'myalgic encephalomyelitis' or 'encephalopathy' (ME), which was the name most commonly supported in the public comments. The committee, however, was concerned that the term 'encephalomyelitis' is not well supported by the evidence and that there is substantial controversy surrounding the two versions of this name. Neither version conveys the full complexity of this disorder." — User:ScienceFlyer
The first and third are fair points on the merits (which don’t matter much or at all according to “verifiability not truth”):
“(1) The committee, however, was concerned that the term 'encephalomyelitis' is not well supported by the evidence…
(3) Neither version conveys the full complexity of this disorder."
And, IMO, the second point does not undermine support for ME:
(2) “there is substantial controversy surrounding the two versions of this name.”
I am almost certain that what the IOM committee meant by that was that there is controversy among ME patients as to whether “ME” and “CFS” are the same or separate illnesses. The view that they are separate illnesses is a small minority view among patients and is not a view ever expressed by researchers or clinicians including in any published work, AFAIK. We can all agree this fact does not undermine the eligibility of the term “ME.”
As QuirkyKitty notes, the IOM paper exclusively uses ME/CFS in the title and review text, except in the recommendation section. The IOM paper highly supports the use of ME/CFS. JustinReilly (talk) 09:16, 16 April 2023 (UTC)
Even IACFSME, by the way, uses the term ME/CFS on their website when not referring to their own organization. The Quirky Kitty (talk) 14:04, 16 April 2023 (UTC)
Perhaps we should consider the abbreviation itself as a potential title. WhatamIdoing (talk) 19:27, 16 April 2023 (UTC)
I think that’s a good idea. Reflects the literature and not unprecedented for Wikipedia titling (cf HIV/AIDS). Innisfree987 (talk) 19:54, 16 April 2023 (UTC)
That's a very reasonable idea. I would be happy with ME/CFS instead of the long version. The Quirky Kitty (talk) 02:37, 21 April 2023 (UTC)
I agree with ME/CFS (the abbreviated version) being reasonable. I do still think the full myalgic encephalomyelitis/chronic fatigue syndrome would be appropriate as well- regardless of whether some people think the names accurately describe the condition or not….that is what they are widely called in medical & scientific literature worldwide. Including ICD-10 medical coding guidelines in the US. 2601:283:4000:21A0:38ED:2253:66B0:C455 (talk) 18:57, 30 April 2023 (UTC)
support per The Quirky Kitty--Ozzie10aaaa (talk) 01:06, 17 April 2023 (UTC)
support The Wikipedia:Manual of Style/Medicine-related articles supports ME/CFS as the article title: "The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name) or an historical eponym that has been superseded."[14]
Concerning some previous statements in opposition.
Many studies and reviews discuss finding various aspects of Neuroinflammation in ME/CFS.[30] The study above, finding No Signs of Neuroinflammation, studied only 9 persons using outdated diagnostic criteria. Using operationalized criteria, as noted in the refererence (they were not specific), they likely would have admitted some patients that had major depression, casting doubt on it's accuracy.[31]
While Epstein Barr Virus is not the cause of most cases of ME/CFS, as once thought, it directly precedes a significant number of cases. "about one in ten people who become infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti will develop a set of symptoms that meet the criteria for ME/CFS."[32]
Regardless that the IOM ME/CFS report was "concerned that the term 'encephalomyelitis' is not well supported", they used the term ME/CFS and stated, "the committee has proposed that the name “chronic fatigue syndrome” no longer be used.[33]
I would be OK with ME/CFS as the title also. Ward20 (talk) 11:37, 17 April 2023 (UTC)
Support* because CDC and UK NHS both use this term, and both previously used the term CFS only or CFS/ME. Seems that recent in the last 5-10 years is also stating Myalgic Encephalomyelitis instead. Best to change with the times. - Amousey(they/them pronouns)(talk) 17:17, 17 April 2023 (UTC)
@ScienceFlyer@Roxy the dog@Randy Kryn, I would also be OK with the abbreviation “ME/CFS” as opposed to the full words spelled out. The concision criterion would favor this term. Also it would not specify in the title what “ME” stands for. Is this an acceptable compromise to those who object to Encephalomyelitis as being inaccurate? JustinReilly (talk) 07:28, 19 April 2023 (UTC)
Because of an oppose comment or two that objected without seeming to have read the prior comments, I checked the Wikipedia:Fringe theories/Noticeboard
and indeed the instant move request was posted there. The proposed article title “ME/CFS” doesn’t seem to me to be a “fringe theory.” See below. What’s the rationale for listing it here if not simply to alert people that don’t like aspects of mainstream science that were previously minority views (eg the term ME/CFS) to come and pile on “object votes”? And regardless of the intent, this seems to be the effect, and I think this should be taken into account when weighting “votes.”
Can anyone who posted this topic to other noticeboards, etc., pls tell us to which ones? I want to get an idea of where ppl are “coming from” to this discussion. Thanks.
“Wikipedia:Fringe theories
“The governing policies regarding fringe theories are the three core content policies, Neutral point of view, No original research, and Verifiability. Jointly these say that articles should not contain any novel analysis or synthesis, that material likely to be challenged needs a reliable source, and that all majority and significant-minority views published in reliable sources should be represented fairly and proportionately. Should any inconsistency arise between this guideline and the content policies, the policies take precedence.”
CFS appears on the fringe theories noticeboard because it includes Wikipedia:WikiProject_Skepticism/Article_alerts, which is written by a bot, and our article is included because Wikiproject skepticism considers our article relevant. The Quirky Kitty (talk) 15:27, 19 April 2023 (UTC)
Oppose. The current is commonly recognised, and the proposed is ugly jargon that needs explanation. —SmokeyJoe (talk) 01:24, 22 April 2023 (UTC)
In your opinion, would ME/CFS be better? The Quirky Kitty (talk) 17:48, 22 April 2023 (UTC)
No. These are not standard abbreviations that don’t require definition on first use. If used in the title without definition in the title, it would be jargon. SmokeyJoe (talk) 01:49, 25 April 2023 (UTC)
Oppose. Current title is still the WP:COMMONNAME, and options including ME or Myalgic encephalomyelitis imply inflammation that isn't supported by evidence. - MrOllie (talk) 19:20, 22 April 2023 (UTC)
Since there is a specific guideline for medical article titles, WP:MEDTITLE (Wikipedia:Manual of Style/Medicine-related articles#Article Titles), it should be referred to first.
The guideline says:
the article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name)… Create redirects to the article to help those searching with alternative names. For example, heart attack redirects to myocardial infarction...The article title is subject to the same sourcing standards as the article content. Where there is a dispute over a name, editors should cite recognised authorities and organisations rather than conduct original research.[4][footnote 4]:Examples of original research include counting Google or PubMed results, comparing the size or relevance of the varieties of English, and quoting from personal or professional experience.
— Wikipedia:Manual of Style/Medicine-related articles#Article Titles
“editors should cite recognised authorities and organisations,” above, links to:
“Medical and scientific organizations
“WP:MEDORG”
which cites 5 examples, below, all of which use “ME/CFS,” as the primary term for the illness:
“the National Academy of Medicine, the British National Health Service, the U.S. National Institutes of Health and Centers for Disease Control and Prevention, and the World Health Organization.”
After reviewing WP:MEDTITLE (Wikipedia:Manual of Style/Medicine-related articles#Article Titles), we can then refer to WP:Article titles including WP:COMMONNAME (Wikipedia:Article titles#Use commonly recognizable names).
It seems obvious to me that the guidelines in WP:Article titles should be interpreted in light of the more specific guidelines in WP:MEDTITLE. And that they should be read together in a way that both are followed to the greatest extent possible, but that if there are any direct conflicts, the more specific WP:MEDTITLE should be followed.
I believe the general principles in WP:Article titles of (1) precision, (2) concision and (3) using commonly recognizable names taken in light of the more specific guidelines in WP:MEDTITLE determine that the abbreviated term “ME/CFS” (as opposed to the fully spelled out “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”) should be the title. Besides being in common use and being concise, it at least partly addresses the objection to “encephalomyelitis” as ME can stand for “myalgic
encephalopathy,” and this can be stated under the nomenclature section. JustinReilly (talk) 07:22, 24 April 2023 (UTC)
Here are more complete excerpts of the relevant parts of the guidelines. IMO, that “ME/CFS” is the only appropriate candidate for the title is very clear simply from reviewing them:
WP:MEDTITLE Wikipedia:Manual of Style/Medicine-related articles … This page in a nutshell:• Article titles use the scientific or medical name …Article titles The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name)[1]… The alternative names may be specified in the lead.[3] Create redirects to the article to help those searching with alternative names. For example, heart attack redirects to myocardial infarction... The article title is subject to the same sourcing standards as the article content. Where there is a dispute over a name, editors should cite recognised authorities and organisationsrather than conduct original research.[4] [footnote 4]: Examples of original research include counting Google or PubMed results, comparing the size or relevance of the varieties of English, and quoting from personal or professional experience.”
— Wikipedia:Manual of Style/Medicine-related articles#Article Titles
“editors should cite recognised authorities and organisations,” above, links to:
Medical and scientific organizations WP:MEDORG Guidelines and position statements provided by major medical and scientific organizations are important on Wikipedia because they present recommendations and opinions that many caregivers rely upon (or may even be legally obliged to follow). Statements and information from reputable major medical and scientific bodies may be valuable encyclopedic sources. These bodies include the U.S. National Academies(including the National Academy of Medicine and the National Academy of Sciences), the British National Health Service, the U.S. National Institutes of Health and Centers for Disease Control and Prevention, and the World Health Organization. The reliability of these sources ranges from formal scientific reports, which can be the equal of the best reviews published in medical journals, through public guides and service announcements, which have the advantage of being freely readable, but are generally less authoritative than the underlying medical literature. Guidelines by major medical and scientific organizations sometimes clash with one another (for example, the World Health Organization and American Heart Association on salt intake), which should be resolved in accordance with WP:WEIGHT. Guidelines do not always correspond to best evidence, but instead of omitting them, reference the scientific literature and explain how it may differ from the guidelines. Remember to avoid WP:original research by only using the best possible sources, and avoid weasel words and phrases by tying together separate statements with "however", "this is not supported by", etc. Guidelines are important on Wikipedia because they present recommended practices and positions of major authorities. * Health technology assessments or HTAs are the gold standard when it comes to assessing evidence quality. They take into account various aspects such as effect, risks, economic costs, and ethical concerns of a treatment…
— Wikipedia:Identifying reliable sources (medicine)#Medical and scientific organizations
[there may be unindicated elisions (…) below]
Wikipedia:Article titles Topic-specific naming conventions for article titles Science; Medicine [see WP:MEDTITLE (Wikipedia:Manual of Style/Medicine-related articles), above] Generally, article titles are based on what the subject is called in reliable sources. When this offers multiple possibilities, editors choose among them by considering several principles: the ideal article title precisely identifies the subject; it is short, natural, distinguishable and recognizable; and resembles titles for similar articles. This page explains in detail the considerations, or naming conventions, on which choices of article titles are based… It is supplemented by other more specific guidelines (see the box to the right), which should be interpreted in conjunction with other policies, particularly the three core content policies: Verifiability, No original research, and Neutral point of view. Use commonly recognizable names WP:COMMONNAME In Wikipedia, an article title is a natural-language word or expression that indicates the subject of the article; Wikipedia does not necessarily use the subject's "official" name as an article title; it generally prefers the name that is most commonly used (as determined by its prevalence in a significant majority of independent, reliable English-language sources) as such names will usually best fit the five criteria listed above.[e] When there is no single, obvious name that is demonstrably the most frequently used for the topic by these sources, editors should reach a consensus as to which title is best by considering these criteria directly. For cases where usage differs among English-speaking countries, see also National varieties of English, below. Editors should also consider all five of the criteria for article titles outlined above. Ambiguous[f] or inaccurate names for the article subject, as determined in reliable sources, are often avoided even though they may be more frequently used by reliable sources. Neutrality is also considered; see § Neutrality in article titles, below. Article titles should be neither vulgar (unless unavoidable) nor pedantic. When there are multiple names for a subject, all of which are fairly common, and the most common has problems, it is perfectly reasonable to choose one of the others. Although official, scientific, birth, original, or trademarked names are often used for article titles, the term or name most typically used in reliable sources is generally preferred. Other encyclopedias are among the sources that may be helpful in deciding what titles are in an encyclopedic register, as well as what names are most frequently used. The following are examples of the application of the concept of commonly used names in support of recognizability: … Scientific and technical topics… Polio (not: poliomyelitis); Spanish flu (not: 1918 influenza pandemic) In determining which of several alternative names is most frequently used, it is useful to observe the usage of major international organizations, major English-language media outlets, quality encyclopedias, geographic name servers, major scientific bodies, and notable scientific journals. A search engine may help to collect this data; when using a search engine, restrict the results to pages written in English, and exclude the word "Wikipedia". When using Google, generally a search of Google Books and News Archive should be defaulted to before a web search, as they concentrate reliable sources (exclude works from Books, LLC when searching Google Books[g]). Search engine results are subject to certain biases and technical limitations; for detailed advice on the use of search engines and the interpretation of their results, see Wikipedia:Search engine test.
Support. Isn't it supposed to be what the sources say? The acronym seems like it makes sense, on that basis. NeurastheniaMilkshake (talk) 18:43, 27 April 2023 (UTC)
I'm an Incline Village survivor, original prototype for the Holmes 1988 Chronic Fatigue Syndrome.
The Center for Disease Control was frightened into convening "The Holmes committee" in 1987 to discuss what to do about the evidence generated by CDC epidemiologist Dr Gary Holmes investigation into the 1985 Lake Tahoe Mystery Illness. The Holmes study encountered evidence such as Unidentified Bright Objects on Dr Paul Cheney's MRI scans. Loss of B cells confirmed by new cell flow cytometry. An aberrant immune response to Epstein Barr virus revealed by the brand new Nichols EBV serology test, a distinctly unusual CD4/CD8 ratio not seen in any known disease. Activation of the 2-5a Oligoadenylate Synthetase pathway. Low Natural Killer Cell function in a special study by Drs. Cheney-Peterson-Caligiuri-Komaroff. And a newly discovered virus "HBLV" that was found in Tahoe Mystery Illness patients by the Gallo lab.
All of these tests were new in 1985 and were unavailable to have been previously used.
Since none of these immunological findings were known in the British and Canadian "Myalgic Encephalomyelitis" it would be improper to imply that it was by using that name. The Holmes committee's Dr Carlos Lopez, who convened this committee announced its intent to create a provisional new syndrome "the chronic fatigue syndrome" for purposes of study and comparison against ME to determine whether this evidence existed in ME or if the Lake Tahoe outbreak was an entirely new syndrome.
This proposed study was never done. Doctors simply accepted the Holmes CFS definition at face value, and assumed it was coined for no particular reason and for no evidence.
All this information is in the public domain, so it makes no sense that researchers are unable to locate this evidence and see that ME and CFS cannot "scientifically" be considered "identical" without performing the prerequisite comparison outlined by the CDC at the time the CFS syndrome was in the planning and collation stage. EriktheMoldWarrior (talk) 19:13, 30 April 2023 (UTC)
Comment: IMO, individual editors’ personal views that scientific authorities should have come to a different conclusion than the one they did is not a valid basis to decide how to present information on Wikipedia. We defer to (indeed depend on) reliable sources. Innisfree987 (talk) 19:50, 30 April 2023 (UTC)
Agreed, arguments that ME/CFS isn't the appropriate name because encephalomyelitis is inaccurate, or because the authors were supposedly lobbied by patients, are not useful. The term CFS has long been associated with people who believe ME/CFS is psychological, but I haven't emphasized the dark history of the term as an argument against it, but stuck to the sources. The Quirky Kitty (talk) 19:12, 2 May 2023 (UTC)
The original source for "Chronic Fatigue Syndrome" is Dr Gary Holmes. The CDC epidemiologist who authored the original 1988 Holmes Chronic Fatigue Syndrome definition.
The basis for the CDC's new syndrome was an investigation of 134 patients at Lake Tahoe.
Dr Holmes accorded legitimacy to the EBV serology test and immune abnormalities to the extent that his official definition lists psychiatric disease as a "condition which must be excluded"
This outbreak and evidence was not identical to "The Royal Free Disease - Myalgic Encephalomyelitis so he said the Lake Tahoe outbreak was "similar" but not the same.
A Cluster of Patients With a Chronic Mononucleosis-like Syndrome: Is Epstein-Barr Virus the Cause? | JAMA | JAMA Network 2600:6C4E:400:4148:1CB9:3DF6:3DE:A798 (talk) 22:08, 2 May 2023 (UTC)
Oppose, I echo and support ScienceFlyer's explanation. Crossroads-talk- 01:08, 3 May 2023 (UTC)
I reread @ScienceFlyer’s comment then read the study he cites. Not only is it a primary source, it includes only 9 “CFS” patients. Wakefield’s case series paper had 12 autism patients and explicitly stated that they did not find an association between autism and MMR vaccination because the study was just a teeny case series and yet he is cast as the devil for daring to publish on such a small cohort.
Also, ScienceFlyer’s paper discusses another paper that found the opposite. And cites two other papers that also found Neuroinflammation in “CFS.” I didn’t see any mention in the cited paper of any other papers that failed to find Neuroinflammation in “CFS.”
You’re essentially arguing the name of the disease should be based substantially on a study of one test in 9 patients? JustinReilly (talk) 09:52, 3 May 2023 (UTC)
Support per The Quirky Kitty. Disclaimer: I have ME/CFS and as such am an involved party here. Skarmory(talk •contribs) 05:08, 8 May 2023 (UTC)
The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.
DecodeME
Latest comment: 11 months ago2 comments2 people in discussion
Good idea. I created 2-day CPET yesterday so I have a bunch of sources gathered and I will write something. The Quirky Kitty (talk) 20:55, 8 August 2023 (UTC)
Restructuring management/treatment
Latest comment: 6 months ago11 comments5 people in discussion
I plan to merge the treatment and management sections, but wanted to give a chance for feedback first.
Given the absence of widely accepted treatment options, it feels like it's undue weight to create an entire section devoted to a couple of proposed treatments. None of the overview sources I read discuss management and treatment separately. I think creating a stronger management section would:
Reduce duplication. Graded exercise therapy and CBT as treatment are now discussed in both sections in quite some detail.
Discuss different type of exercise and CBT next to each other. Now we create one sentence for the type of exercise that is recommended, and in a completely different section, we discuss two proposals which are not recommended in major guidelines on ME/CFS (GET, APT). We seem to lose the middle ground a bit about the type of exercise therapies that are meant to build up stamina without triggering PEM (discussed in the BMJ best practise guideline and Bateman). Similarly, the middle ground of using CBT as a supportive (rather than curative) therapy is lost in the counselling section.
Place due weight on the options. Adaptive pacing therapy does not seem to be mentioned in any of the high quality reliable sources that I read from the last five years. It's not discussed in NICE, Bateman, the EUROMENE paper, the CDC or the BMJ Best practice document. This could be moved fully to treatment of chronic fatigue syndrome.
I'm debating whether the treatment and management sections should be merged. You give some good reasons, such as splitting exercise and counseling somewhat inappropriately. But there's also section on Ampligen that belongs under treatment. Keeping Ampligen under treatment but merging CBT/GET into management would work, but leave an oddly short treatment section.
On the other hand, I strongly support for your proposal to revamp coverage on CBT/GET. The view that CBT/GET are based on a discredited disease model, ineffective, and very possibly unsafe has strong support from reliable sources. The scientists support CBT/GET are a small, vocal minority. Many of them contributed to the original CBT/GET trials, and continue publishing papers supporting on CBT/GET, often based on the same studies that the anti-CBT/GET found fatal flaws in. There is either a scientific consensus or we are very close to one.
Thus, we should either say that CBT/GET as treatments are widely considered ineffective, or just say they are ineffective. We already say that ME/CFS is not due to deconditioning or mental health problems as a fact (as opposed to saying X says so), and that's the main basis of CBT/GET anyways.
The view that CBT can help with coping, and that exercise within one's energy envelope might help are mainstream views, as opposed to CBT to treat "illness beliefs" and GET. The Quirky Kitty (talk) 05:32, 4 October 2023 (UTC)
Yes, but there's a specific and regemented form of pacing called APT that Femke is talking about. It hasn't featured in research in a long time. The Quirky Kitty (talk) 13:03, 4 October 2023 (UTC)
I think the minority of people that say that CBT and to a lesser extend GET are somewhat effective is still sufficiently large that the viewpoint needs to be included. With the appropriate caveats of course around applicability to current case definitions and risks of harm of course. I don't intend to change the tone of what is there much, which is already pretty negative, just condense it massively.
In terms of Ampligen, I think that can be discussed in a section in management about drug therapies. Most of the accepted drugs in use for ME/CFS are about symptoms management and I think a short description of Ampligen as an actual treatment there would work. The way is discussed in BMJ is in a separate section on emerging therapies (Comparable to research in our article). I can't find a discussion in the NICE report, EUROMENE, or in Bateman, indicating that we might too much emphasis on it. This 2021 article specifically about drug developments talks about it as being in the development, which also supports the idea that it's not yet an accepted treatment. —Femke 🐦 (talk) 16:39, 4 October 2023 (UTC)
@Innisfree987: hadn't seen that source yet, very useful as many of the articles I've got now go in too much detail and it's difficult to decide what's due. Thanks :). —Femke 🐦 (talk) 18:21, 4 October 2023 (UTC)
Oh good I’m glad it’s helpful. Yes the “concise” review has definite advantages!
I don't think we should have a separate Treatment article; it should all be here per WP:NOPAGE. May be worth seeking input at WT:MED. Bon courage (talk) 16:56, 4 October 2023 (UTC)
I was thinking of proposing we get rid of that article, mostly because it is severely out of date though. I think the article would be useful were it kept maintained. My arguments remain that we should focus on those management strategies discussed in recent high quality reliable sources, and therefore not discuss adaptive pacing therapy in this article. —Femke 🐦 (talk) 18:15, 4 October 2023 (UTC)
Would you like me to formally propose a merge now? I suspect proposing a deletion would either be rejected or result in a merge anyway. After the merge you could get rid of out of date info but other editors could more easily get some of that info back than if the whole article had been deleted. For example if they found a recent source to support a deleted sentence. Chidgk1 (talk) 19:27, 29 October 2023 (UTC)
Or I could propose turning the other article into a redirect to here Chidgk1 (talk) 19:32, 29 October 2023 (UTC)
Age of sufferers?
Latest comment: 6 months ago3 comments3 people in discussion
I guess logically the lead statement "It most commonly affects adults between 40 and 60 years old" and the info box "Usual onset 10 to 30 years old" could both be correct but would knowing that not depend on good data about what age people recovered? Whereas presumably medics would mostly know when very severe cases left hospital or stopped seeing their consultant rather than when mild cases recovered?
Having said that I understand it is very hard to summarize into the lead the body statement "The incidence rate according to age has two peaks, one at 10–19 and another at 30–39 years, and the rate of prevalence is highest between ages 40 and 60." and the graph. So I don't have a suggestion but am just raising it for discussion. Chidgk1 (talk) 19:14, 29 October 2023 (UTC)
I imagine that being most common at ages 40-60, and usually starting ages 10-30 implies that people continue getting ME/CFS over the years and few ever recover. It may be less diagnosed in older adults or people with ME/CFS are dying. However, you're right that this is a pretty obtuse way to explain everything. The Quirky Kitty (talk) 07:27, 1 November 2023 (UTC)
I've had a bit of a look for recent meta-analysis, and there is basically nothing in recent HQRS using newer criteria. Not surprisingly, as the age structure is changing very rapidly with many (?) to the vast majority (?) of people with ME/CFS getting it after COVID-19. I suggest we leave it as is, and hope some better sourcing comes out wihtin the next year. —Femke 🐦 (talk) 17:05, 1 November 2023 (UTC)
Good question, I don't believe there's a good answer. It is known that recovery or improvement is often years or decades long, if at all. That tends to cause the prevalence statistics to be a significantly older age. Both of those age group numbers have changed over the years due to the changing definitions used. The numbers should come from higher impact publication reviews that represent the latest consensus definition of the illness, IMO. This assumes the definitions improve with increased knowledge of the illness, and therefore also the statistics. Ward20 (talk)
Naming subsection
Latest comment: 6 months ago7 comments5 people in discussion
Currently, the naming section is written with mostly older sourcing. I think some of the themes in that section are described slightly differently in newer sourcing. Given the wide view on naming here on Wikipedia, as judged by the April requested move, I wanted to do a thorough analysis of what current sources say and get opinions before I changed the article. I've limited my search to sources for the last 10 years, but generally cite the more recent papers.
Source
Date
Quote
NICE
2021
Many people with ME/CFS consider the name 'chronic fatigue syndrome' too broad, simplistic and judgemental. For consistency, the abbreviation ME/CFS is used in this guideline.
IOM
2015
Surveys conducted by ME/CFS advocacy organizations have found that 85 to 92 percent of respondents want that name [chronic fatigue syndrome] to be changed (Jason et al., 2004). Their most common complaints are that this name is stigmatizing and trivializing, causing people not to take the disorder serious.
BMJ best practice
2021
Many patients consider the name chronic fatigue syndrome overly simplistic, as well as pejorative. The term myalgic encephalomyelitis is also problematic given the limited evidence for brain inflammation.
EUROMENE
2021
The term ME, an abbreviation for myalgic encephalomyelitis, in particular, is unsatisfactory as it suggests that pathological process underlying the disease is an inflammatory process affecting the brain. There is lack of convincing evidence for this.…The term CFS, short for chronic fatigue syndrome, is equally unsatisfactory, as it implies that fatigue is the main symptom of the illness, whereas in fact its clinical features are far more wide-ranging.
Following the naming of CFS by the CDC, many patients felt the name trivialized the seriousness of their illness and compounded the stigma they already faced in dealings with skeptical medical professionals ..
Hybrid terms such as ME/CFS retain the naming component which describes a common symptom and is also well known in scientific and public spheres (CFS), while also including a name that respects the history of the illness and does not trivialize the medical nature of the patient experience (ME).
It should be noted that despite increased worldwide popularity in usage, some have been critical of the name ME/CFS, as activists have indicated that it can refer to what are the two separate illnesses
CFS alone tends to oversimplify the complexity of the disease and undermine the constellation of symptoms experienced by patients. Thus, more recent merging of CFS and ME, also known as ME/CFS has been described to better encompass the complexity of the disease and its neuroinflammatory components.
96% .. disliked or strongly disliked the label CFS to the 1% who liked the name. .. Previous research suggests that the label CFS is harmful to the patient community as it negatively influences the opinions of healthcare providers that are responsible for providing care.
Jason et al (now cited, behind paywall)
2007
Patients believed that the term CFS trivialized the seriousness of this illness, as the illness is typified by many severe symptoms in addition to fatigue, and fatigue is a common symptom experienced by many otherwise healthy individuals in the general population.
Since these recommendations have been made [for a name change to SEID], the proposed name change has not been widely adopted by the scientific or patient community ..
Patients have been dissatisfied with the term CFS because focusing on just one symptom of the illness tends to downplay its overall debilitating nature.
Several patient polls that were completed after the IOM name change recommendations found overall negative attitudes toward SEID
There are two different types of framing here. Regarding CFS, the sources either take a patient perspective, or make a value judgement about the name themselves. The patient perspective is more common, so I've kept that. Notably, none of the sources implied that it's a minority opinion. Our text does imply that (has been criticized by some patients) and does not seem to be a fair reflection of the old source cited.
I've also wanted to put more emphasis on the umbrella term, given that's what NICE and CDC use now, and decrease the contrast between medical professionals and patient groups, as I believe the contrast is as much between patients and medical professionals as within medical professionals.
Old text
Many names have been proposed for the illness. Currently, the most commonly used are "chronic fatigue syndrome", "myalgic encephalomyelitis", and the umbrella term "ME/CFS". Reaching consensus on a name is challenging because the cause and pathology remain unknown.[2]: 29–30
The term "chronic fatigue syndrome" has been criticized by some patients as being both stigmatizing and trivializing, and which in turn prevents the illness from being seen as a serious health problem that deserves appropriate research.[152] While many patients prefer "myalgic encephalomyelitis", which they believe better reflects the medical nature of the illness,[140][153] there is resistance amongst some clinicians toward the use of "myalgic encephalomyelitis" on the grounds that the inflammation of the central nervous system (myelitis) implied by the term has not been demonstrated.[154][155]
A 2015 report from the Institute of Medicine recommended the illness be renamed "systemic exertion intolerance disease", (SEID), and suggested new diagnostic criteria, proposing post-exertional malaise (PEM), impaired function, and sleep problems are core symptoms of ME/CFS. Additionally, they described cognitive impairment and orthostatic intolerance as distinguishing symptoms from other fatiguing illnesses.[2][156][157]
Proposed text
Many names have been proposed for the illness. Currently, the most commonly used are "chronic fatigue syndrome", "myalgic encephalomyelitis", and the umbrella term "myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". Reaching consensus on a name is challenging because the cause and pathology remain unknown.[2]: 29–30
Many patients object to the term "chronic fatigue syndrome". They consider the term too simplistic and trivialising, which in turn prevents the illness from being taken seriously (IOM, Bhatia, 2023). At the same time, there are also issues with the use of "myalgic encephalomyelitis, as there is only limited evidence of brain inflammation implied by the name (BMJ Best Practice 2021). The merged name would better reflect the complexity of the illness (Noor et al, 2021), but some people object to this name too as they see CFS and ME as distinct illnesses (Bhatia, 2023)
The term "chronic fatigue syndrome" has been criticized by some patients as being both stigmatizing and trivializing, and which in turn prevents the illness from being seen as a serious health problem that deserves appropriate research.[152] While many patients prefer "myalgic encephalomyelitis", which they believe better reflects the medical nature of the illness,[140][153] there is resistance amongst some clinicians toward the use of "myalgic encephalomyelitis" on the grounds that the inflammation of the central nervous system (myelitis) implied by the term has not been demonstrated.[154][155]
A 2015 report from the Institute of Medicine recommended the illness be renamed "systemic exertion intolerance disease", (SEID), and suggested new diagnostic criteria, proposing post-exertional malaise (PEM), impaired function, and sleep problems are core symptoms of ME/CFS. Additionally, they described cognitive impairment and orthostatic intolerance as distinguishing symptoms from other fatiguing illnesses.[2][156][157] Like CFS, the name only focuses on a single symptom and patient opinions have generally been negative (Jason & Johnson, 2020).
Thanks for doing all this work! The edits make sense to me. While we’re here, I wonder if there’s a way to clarify that the SEID proposal has been essentially discarded, while by contrast the IOM-recommended criteria has been adopted by the CDC? The latter is easy to source; the former is true, but I’m not aware of a source… Maybe it would be enough to rephrase to say SEID was proposed and so were those core elements, and the CDC adopted the criteria (but not the name)? Innisfree987 (talk) 18:01, 14 October 2023 (UTC)
Your proposal would be a significant improvement. I would also add that the name SEID never entered common usage. (We need a source for that) The Quirky Kitty (talk) 05:32, 15 October 2023 (UTC)
Added. The Jason & Johnson paper does include that info on SEID. The Noor paper is apparently published in a predatory journal, so I'm on the look-out to replace that text still. —Femke 🐦 (talk) 12:50, 15 October 2023 (UTC)
Can we please change the name of the article to ME/CFS? That is the most common term used nowadays. The continued insistence by Wikipedia on calling it Chronic fatigue syndrome is demeaning and out of touch. It prioritises an outdated medical approach to the illness where a select few knew what was best over the more modern inclusive approach that actually respects people with the condition.
Professionals have changed their terminology. Why hasn't Wikipedia? Jklsc (talk) 04:22, 7 November 2023 (UTC)
The latest RfC on changing the name was ~6 months ago. It closed with no concensus.[34] We'd have to run another RfC to prove the consensus has shifted. (I'm unable to help with an RfC. This article is mainly on my watch list because the ICD codes kept being removed a few years ago.)Little pob (talk) 11:02, 7 November 2023 (UTC)
Given the recency of the last move request, I think we should wait a tad bit longer. If we hold a discussion in around Jan/Feb next year, we should have more complete data on usage trends during 2023. I do plan on investigating this further, and likely launch a new move request myself. —Femke 🐦 (talk) 17:07, 7 November 2023 (UTC)
Bolding within subsection
Latest comment: 6 months ago2 comments2 people in discussion
The manual of style guideline prefers we either remove the boldface from the "Viral and other infections" subsection, or retarget the Post-viral fatigue syndrome redirect to that subsection. I have no preference, but some here might. Little pob (talk) 10:27, 9 November 2023 (UTC)
I think removing the bold from the text in that section and leaving the redirect alone would be best. The redirect's name is about the syndrome (just under another name) not the fact that the cause is viral, so redirecting to the top of the article versus a "Cause" sub-section would make the most sense. Kimen8 (talk) 12:34, 9 November 2023 (UTC)
Resplitting treatment from management
Latest comment: 6 months ago9 comments3 people in discussion
Made a major edit to management section to try to distinguish between the nuances of symptom management and treatments for intent to cure. If changes need to be made I have no problem with that. Ward20 (talk) 08:42, 4 November 2023 (UTC)
I have a minor preference of not making this distinction, to avoid giving undue weight to GET and CBT. I don't think pacing, counselling and exercise are forms of symptom management. Counselling is mainly aimed at secondary anxiety/depression (not a symptom in itself) for instance. Symtpom management strategies are increased salt intake/electrolytes for dysautonomia, avoiding trigger food for bowel problems and so forth. So I think the section should be called management again. I plan to add symptom management and management of severe/very severe ME/CFS as subsections. —Femke 🐦 (talk) 08:53, 4 November 2023 (UTC)
I removed this sentence as wrong before: Cognitive behavioral therapy for ME/CFS is a variant of CBT that assumes a cognitive-behavioral model of ME/CFS. CBT for ME/CFS as defined in NICE as the exact opposite. It's (now?) the CBT that does not try to change illness beliefs. —Femke 🐦 (talk) 08:55, 4 November 2023 (UTC)
OK, I understand the issues you describe. Whatever the consensus for the section is fine by me. I tried to make the distinction partially because GET and CBT were major players in treatment for decades, and still a certain faction of physicians subscribe to it. I put GET and CBT (the older definition) back in their own sections as they were purported to globally treat the illness similar to Rintatolimod. Since you mentioned it, the change in the definition of CBT as applied in the new guideline should be made very clear. It's late here so I'm signing off. Ward20 (talk) 10:53, 4 November 2023 (UTC)
I'm going to nit-pick a bit further, as I want to bring this article up to GA in like 6 months time, and I don't think the recent changes are to that level:
We have repetition of the description of GET reintroduced. It's both in management and in treatment. In management, we have undue balance against GET.
Saying that efficacy is debated is not that insightful. I gave the width of opinions from strong meta-analyses, namely either weak evidence for a small to moderate effect or ineffective.
Well, CDC and NICE do not recommend GET for management or treatment. I am not sure what other balance there can be in this case.
OK, I like strong meta-analyses content with more informative wording. I concur.
As long as consensus material is well supported by citation I have no issues with removing overlinking. Previously, when this article was more contentious, content had to be uber supported lest it was reverted. That hasn't been the case for some years now, so yes there is probably over-citing.
In real life I don't have a lot of time right now, so I'm not going to be able to contribute much. Maybe some other editors can jump in? Ward20 (talk) 12:32, 8 November 2023 (UTC)
I'm not saying we should say GET is a serious treatment option. I'm familiar with two Health Technology Assessments on the topic (NICE and Germany's IQWiG's - press release in English). They agree with CDC in not recommending GET. With three top institutions saying no, we should say so too in Wikivoice, no disagreement there.
Where I think my text was better is in recognizing that some reviews (including the 2023 IQWiG and the 2022 CDC text) see weak evidence for a mild to moderate positive effect. They still recommend against GET, as the evidence for a positive effect is weak, harms are insufficiently documented by primary studies, and patients indicate harm. IQWiG only included studies which required PEM or had >80% PEM reported. —Femke 🐦 (talk) 17:12, 8 November 2023 (UTC)
Fair enough, but I think it needs to be in management and treatment sections. The treatment section is for historical information since rintatolimod is still not available for sale generally. In the exercise section the non-recommendation and possible harms of GET should be included. Ward20 (talk) 20:50, 8 November 2023 (UTC)
I don't think we have undue balance against GET. In fact, I would move the article's balance even further against GET. Almost every major health agency recommends against it.
I would definitely say that GET is not recommended in Wikivoice, not "NICE recommends against GET" or "the CDC doesn't support it". There are further anti-GET sources not cited in this article, such as the New York and Victoria, Australia departments of health opposing GET. Further, Vink and Vink-Niese argue that the effect of GET trials can't be separated from the placebo effect, as their primary outcomes are subjective (questionnaires) and GET cannot be blinded. However, we should make clear that a small minority of doctors still support it. The Quirky Kitty (talk) 21:23, 19 November 2023 (UTC)
Wrong audience?
Latest comment: 5 months ago2 comments2 people in discussion
Some of the text appears to be written for the wrong audience. For example, there are multiple instances of "should" and "patient". See WP:MEDMOS and WP:NOTGUIDE. --Whywhenwhohow (talk) 04:42, 20 November 2023 (UTC)
@Whywhenwhohow: I've removed quite a few of the patients and shoulds. Any further that should be removed? —Femke 🐦 (talk) 15:56, 26 November 2023 (UTC)
Rewriting the funding section
Latest comment: 5 months ago4 comments3 people in discussion
it shows its age. It's mostly focussed on incidents before 2000 for the US, and around 2000-2010 for the UK.
There are also some issues with source-text integrity
It has quite obvious systemic bias towards UK/US
Proposed new text:
Historical research funding for ME/CFS has been far below that of comparable diseases.[1][2] In a 2015 report, the U.S. National Academy of Sciences called it "remakabl[e]" how little funding there had been for research into causes, mechanisms and treatment.(page 9 of IOM report) Lower funding levels have led to a smaller number and size of studies.[3] In addition, drug companies have invested very little in the disease.[4]
The U.S. National Institutes of Health (NIH) is the largest biomedical funder worldwide.[5] Using rough estimates of disease burden, a study found NIH funding for ME/CFS was only 3% to 7% of the average disease per healthy life year lost between 2015 and 2019.[6] Worldwide, multiple sclerosis, which affects fewer people and results in disability no worse than ME/CFS, received 20 times as much funding between 2007 and 2015.[2]
Multiple reasons have been proposed for the low funding levels. Diseases for which society "blames the victim" are frequently underfunded. This may explain why a severe lung disease often caused by smoking receives low funding per healthy life year lost.[7] Similarly for ME/CFS, the historical belief that it is caused by psychological factors, may have contributed to lower funding. Gender bias may also play a role; the NIH spends less on diseases which predominantly affect women in relation to disease burden. Less well funded research areas may also struggle competing with more mature areas of medicine for the same grants.[6]
There are a two things I'd like feedback on:
The text relies quite heavily on Arthur Mirin's work. This is because not too many others publish on the topic, and other sources are typically more polemic and in lower-quality journals, or are older. Is this okay?
Have I sufficiently addressed the geographic bias? While the text itself is less focused on the UK/US, the underlying sources still are. Am I simply hiding the bias here? I've added a single sentence about worldwide funding, but could add a bit more from that report commissioned by the CFS/ME collaborative (previously incorrectly only attributed to ME in Action).
Since Mirin's cites are from three different publications, I would say that indicates general acceptance of the material. I would not worry on that point.
I believe it addresses the current data issue more than the geographic bias issue. As you say, the underlying sources are still UK/US, but if that's all that primarily exists on the subject it is still an improvement, IMO. Ward20 (talk) 09:54, 28 November 2023 (UTC)
I like your proposed changes as well. I don't think geographic bias can be fixed much, since we don't have other sources to work with. But updating the figures is a big improvement. When I started working on this article, much of it felt like it was written in the early 2010s. That's improved a good bit, but research funding was one of the remaining outdated sections. The Quirky Kitty (talk) 03:22, 5 December 2023 (UTC)
Also, the material from "Chronic fatigue syndrome at Wikipedia's sister projects" in that section is badly in need of updating. They use outdated definitions and conflate ME/CFS with general fatigue and psychological issues that cause fatigue. Ward20 (talk) 20:05, 6 December 2023 (UTC)
You are correct, it is importing from that link. I tried to edit the information in the "Patientplus ID" section, but I don't understand the syntax they're using, and self reverted to the last edit you did. Ward20 (talk) 21:33, 6 December 2023 (UTC)
The WD ID is supposed to link to "doctor" pages, but currently links to the "signs and symptoms" page. The two have different titles, effectively ME/CFS vs CFS/ME, which is causing {{medical resources}} to send you to a 404 error. Will override locally, but also attempt to fix at WD. Little pob (talk) 12:24, 7 December 2023 (UTC)
I think I've fixed the WD entry; but the oldID is still delivering a 404 so have not reverted the local override. Please double check in a couple of hours (or a day or so) in case it's a cache issue. Little pob (talk) 12:35, 7 December 2023 (UTC)
Thank @Little pob! Do you know what determines the text of the link? Is it called CFS because this article is currently CFS? Or does it get that from the PatientUK somehow? —Femke 🐦 (talk) 17:43, 7 December 2023 (UTC)
Had a look at the source code; it uses the {{PAGENAME}} magic word to pull the WP article title (rather than the WD label). Little pob (talk) 17:56, 7 December 2023 (UTC)
New CDC survey on prevalence
Latest comment: 5 months ago2 comments2 people in discussion
The CDC has released the results of a survey they did on the prevalence of ME/CFS: [35]. They estimate 1.3% of American adults, which would be 3.3 million people. It's a bit higher than some of the other figures. How should we incorporate it into the article? The Quirky Kitty (talk) 20:02, 8 December 2023 (UTC)
Very interesting. It's about people saying their doctor has diagnosed them, which means it's much much higher than previous estimates. Usually, estimates of 1% are about community surveys, and a large share of the 1% are previously undiagnosed people. A shame the link doesn't reflect on this, or puts this into perspective of other studies. I've started prepping an overview of recent reviews on the topic, as I think our lead sentences are not that great at the moment. Moving house so might not finish till Christmas period. For now, I think we should wait for secondary sourcing? —Femke 🐦 (talk) 20:14, 8 December 2023 (UTC)
Cairns Hotopf 2005 review
Latest comment: 4 months ago6 comments3 people in discussion
Do I read this correctly that this reviews not just studies of chronic fatigue syndrome, but also studies of chronic fatigue, or studies that mixed the two? I wanted to double-check because the section on the recovery factors on pp 22 and 28 (currently cited in the entry) wasn’t completely clear to me. But if I have that right, it seems important to clarify that these are not strictly for ME/CFS. That is, if we see fit to use them at all. Innisfree987 (talk) 05:16, 30 December 2023 (UTC)
It doesn't really matter as the source is almost 20 years, far outside of WP:MEDDATE and I don't think reflective of current thinking. There must be a more recent review out there, right? p 22 is clearly about CFS, but has slightly different numbers. —Femke 🐦 (talk) 09:13, 30 December 2023 (UTC)
Ah yes a good point about the age of the source. Innisfree987 (talk) 09:25, 30 December 2023 (UTC)
I've rewritten using the two HTAs at our disposal. It's controversial, so dediced to stick to the top of the source hierarchy. —Femke 🐦 (talk) 09:48, 30 December 2023 (UTC)
The source is old, but there are no newer reviews of prognosis that I'm aware of (and I've looked extensively for the past few years, and tried unsuccessfully to cajole the authors into updating their review). The replacement sources that you added don't give actual numbers. I'm not sure why giving actual numbers is against current thinking. sciencewatcher (talk) 17:44, 30 December 2023 (UTC)
The numbers are by definition based on older case definitions, so are less relevant to current case definitions (which are mostly IOM, Fukuda with obligatory PEM or the CCC/ICC). Would be great if another systemic review is done on current definitions. —Femke 🐦 (talk) 18:00, 30 December 2023 (UTC)
improving lead readability
Latest comment: 4 months ago23 comments5 people in discussion
I've been making some gradual changes to the lead to improve readability. Currently, the readability score indicates it's more difficult than your typical academic paper. Given our audience will not be academics, and may even suffer from cognitive issues, we do really need to address this.
I've tried a few things, many of which were accepted. Principally, I tried to "show not tell". Instead of saying "debilitating fatigue", I've included the fact that a quarter of people are bed or homebound. Instead of saying "numerous", I enumerated the key body systems in which changes occur, also making the sentence less awkward.
I'm not married to any of my changes, but I'm at a loss how to make this lead accessible. Any further ideas?
What about something like. It's still more difficult than I'd like, but should be easier to understand.
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a complex and debilitating long-term medical condition. People with ME/CFS experience lengthy flare-ups of the illness following minor physical or mental activity. This is known as post-exertional malaise (PEM). Other core symptoms are greatly reduced ability to do tasks that were routine before, fatigue and sleep disturbances.[12][13] Orthostatic intolerance (difficulty sitting and standing upright) or memory and attention problems may also be required for diagnosis. Chronic pain is very common.[13] The fatigue in ME/CFS can be profound and does not go away after rest.[13] Diagnosis is based on symptoms because no confirmed diagnostic test is available.[14]
Presently:
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a complex and debilitating long-term medical condition. Core symptoms are lengthy flare-ups of the illness following ordinary minor physical or mental activity, known as post-exertional malaise (PEM); greatly diminished capacity to do tasks that were routine before the illness; and sleep disturbances.[12][13] Orthostatic intolerance (difficulty sitting and standing upright) or memory and attention problems may also be required for diagnosis. Frequently, other symptoms occur , and chronic pain is very common.[13] The often incapacitating fatigue in ME/CFS is different from that caused by normal strenuous exertion and is not significantly relieved by rest.[13] Diagnosis is based on symptoms because no confirmed diagnostic test is available
A few proposed changes to Femke's text:
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a complex and debilitating long-term medical condition. People with the illness have lengthy flare-ups of symptoms following normal minor physical or mental activity. This is known as post-exertional malaise (PEM). Other distinctive symptoms are; a significant inability to do tasks that were routine before, along with fatigue and sleep disturbances.[12][13] Difficulty sitting and standing upright, or memory and attention problems are also diagnostic. Chronic pain and diverse bodily symptoms are very common.[13] Fatigue following exertion can be severely incapacitating and does not subside normally after rest.[13] A diagnosis of ME/CFS is based on symptoms because no confirmed diagnostic test is available.[14]
I tried to simplify where possible. I don't think fatigue is now a core symptom. Fatigue can be debilitating and rest may help, but reponse is often far from normal. The widespread bodily system symptoms are also important to mention IMO. Ward20 (talk) 06:07, 25 December 2023 (UTC)
There is still a large number of difficult to very difficult words in the text. I would like to avoid words like incapacitating, subside, diagnostic, distinctive, bodily and also the semicolons. —Femke 🐦 (talk) 17:47, 25 December 2023 (UTC)
According to readable.com, still about a third of readers would not be able to understand text this difficult. —Femke 🐦 (talk) 17:53, 25 December 2023 (UTC)
Just a drive-by suggestion; I haven't read the whole article so apologies if I'm mis-describing anything. Maybe something like:
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term medical condition. People with the illness have sleep problems and fatigue that disrupt their ability to do everyday activities. Many develop memory and attention problems, and/or difficulty standing or sitting upright (orthostatic intolerance). Physical or mental activity worsens symptoms, with symptomatic "crashes" that can last for days or weeks, and are not relieved by rest. Other symptoms can involve numerous body systems, and chronic pain is very common. (I'd move the diagnosis bit to the end of the causes paragraph).
This feels more readable and less jargony to me, but admittedly I pasted it into readable.com per your suggestion and it received a grade of D... Ajpolino (talk) 20:24, 25 December 2023 (UTC)
Blending above proposals and comments:
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a complex and debilitating long-term medical condition. A diagnosis is based on symptoms because no conclusive test is available.[14] People with the illness can have lengthy symptom flare-ups following minor physical or mental activity. This is known as post-exertional malaise (PEM). Other key symptoms include a greatly reduced ability to do everyday tasks that had been routine, along with fatigue and sleep complaints.[12][13] Fatigue after normal activity can be extreme and long-lasting, even after rest.[13] Difficulty sitting and standing upright, or memory and attention problems are also signs of the illness. Also common are chronic pain and other widespread physical symptoms.[13]
Some great ideas here! Let's digests where we don't seem to align yet.
I really like moving the diagnosis out of the first paragraph. While readability scores do not capture paragraph length, it does impact readability. Between 50 and 100 words per paragraph is recommended. It fits well after the last sentence of the second paragraph.
I like moving post-exertional malaise after the description of other symptoms. It's weird to say that the core system is an exacerbation of symptoms when we've not described what these other symptoms are.
I think it important to describe post-exertional malaise as something happening after exertion, like in Ward's text. This 12-48h delay between activity and symptom flares is considered the key element of ME/CFS's cardinal symptom, so it's important to be more precise here.
Should we describe ME/CFS as a complex condition? I don't have a strong opinion here, but I think that word isn't too informative.
Should we single out fatigue as being extreme? In some people, post-exertional myalgia or post-exertional cognitive issues may be more disabling.
The wording sleep complaints makes it feel subjective, whereas sleep problems is a more neutral description?
For #4 I think "complex" adds no meaning to the reader; no one will think a "debilitating long-term medical condition" is simple.
For #5 I think "extreme" is an unnecessary descriptor. Calling fatigue "extreme" won't suddenly summon the right image in the reader's mind. Rather, they'll understand as we give context. Is it enough to note that the fatigue prevents the affected from performing daily activities? If that's not "extreme" enough, we could note that fatigue can leave folks bedbound (as it says in the Signs & symptoms section now), or use an example as Ward does below: "They often can't brush their hair or teeth and have to crawl to the bathroom" is a great evocative description of extreme fatigue. Ajpolino (talk) 14:32, 28 December 2023 (UTC)
From above:
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term medical condition involving numerous body systems. Often, after a 12-48h delay following minor physical or mental activity, persons with ME/CFS have a worsening of their illness lasting hours to months.[1]: 78 This is known as post-exertional malaise (PEM). Key symptoms include a greatly reduced ability to do everyday tasks that had been routine, along with sleep problems and fatigue.[12][13] The fatigue after normal activity can be extreme and long-lasting, even after rest.[13] Difficulty sitting and standing upright, or memory and attention problems are also signs of the illness. Chronic pain and other diverse symptoms are common.[13]
PEM is fundamental, so I believe that symptom should continue to lead.
'fatigue after normal activity can be extreme' should stay. It does have the modifier "can". Reviews, based on studies, do not acknowledge extreme incapacitating fatigue much because they rarely see that part of the illness. Persons with that fatigue are too ill to be involved in studies. Reviews from treating doctors mention it because patients tell them they are so fatigued they often can't brush their hair or their teeth and have to crawl to the bathroom (or worse).
Per above, I have no objection to showing the effects of incapacitating fatigue rather than telling. At this point however, I'm not sure what the best supported wording is and have to think about it. Ward20 (talk) 23:03, 28 December 2023 (UTC)
Now buried in the paragraph on epidimiology, we say that a quarter of people are home or bedbound. I think that makes the overall incapacitating nature of ME/CFS quite clear, even though some people may be bedbound due to orthostatic intolerance or muscle weakness rather than fatigue. Do you think this would work as the last sentence of the first paragraph? I think numerous body systems is both jargon (what is a body system), and feels a bit exaggerated, as the word numerous to me feels like hundreds and the human body doesn't have that many body systems.
What about the following? I'm not sure if hallmark symptom of PEM is correctly "translated" to main. I've altered the description of PEM to be after 'ordinary' effort, as people with mild and moderate ME/CFS may only trigger PEM after hoovering/cooking/commuting, rather than minor things like brushing your teeth or lifting a glass of water. The text doesn't flow that well, so open to suggestions to improve that further.
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term illness with a large number of symptoms. The main characteristic of ME/CFS is a worsening of symptoms after ordinary physical or mental effort.[1]: 78 This is known as post-exertional malaise (PEM). Other core symptoms are a greatly reduced ability to do everyday tasks along with fatigue, and sleep problems. The fatigue in ME/CFS is not relieved by rest or sleep.[13] Difficulty sitting and standing upright, memory and attention problems and chronic pain are common. About a quarter of people with ME/CFS is severely affected and unable to leave their bed or house.
I think "with a large number of symptoms"/"involving numerous body systems" unnecessary as it's vague to the point of conveying little meaning to a reader; the reader will have a much better sense when they read the subsequent few sentences.
I still think it's a bit odd to read about "worsening of symptoms" and "reduced ability to do everyday tasks" before we read what these debilitating symptoms actually are (fatigue, orthostatic intolerance, memory/attention problems, pain). But I understand we're compromising here, and certainly I'm sure whatever we settle on here will be an improvement. Thanks for your efforts. Ajpolino (talk) 14:01, 29 December 2023 (UTC)
I'll be brief as I have a lot on my plate IRL. I think the first sentence should say there are multi-systems involved, the newer articles often use this in their definition.[36] Concerning 'PEM' I don't think 'effort' is the right term because 'I made an effort' is often used as a vague excuse. I believe 'worsening of their illness' is more accurate because new symptoms and a shift toward more severe illness can occur from PEM. I like 'The fatigue after normal activity can be extreme and long-lasting, even after rest.[13]', because I think it better captures the difference between ordinary fatigue and ME/CFS fatigue. ME/CFS fatigue may be relieved by rest or sleep, but it does not respond in a normal manner to it. Orthostatic intolerance, and memory and attention problems should be separate from chronic pain because the first two are core symptoms and chronic pain is not. Rather than describing only 25%, I think it would be better to describe the spectrum of illness from mild to very severe. Ward20 (talk) 08:42, 2 January 2024 (UTC)
One last round, let's see where we disagree, and how to resolve this:
Agree "large number of symptoms" is not great to start. Put it there to be able to put PEM as first symptom.
Agree with moving PEM down
I still think multi-system is jargon. We describe the objective multiple symptom abnormalities in the next section. We should not have the same difficulty as scientific texts.
I like describing PEM as a worsening of their illness; this is shorter than "it makes symptoms worse and/or makes new symptoms appear".
Happy to stick with exertion, even if it's more difficult.
CDC talks about severe fatigue. Extreme goes beyond that, and is not reflective of what people with mild ME/CFS usually experience. What about profound as a compromise?
There are multiple definitions of ME/CFS. In the CCC and ICC, pain is obligatory. In the NICE modification of IOM, cognitive problems are obligatory, but orthostatic tolerance is not. Given that, I don't see why we should introduce an awkward distinction here.
Open to describing the range of severities, but struggling for words here.
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term illness. People with ME/CFS have a greatly reduced ability to do everyday tasks along with profound fatigue, and sleep problems. The hallmark symptom of ME/CFS is a worsening of the illness after ordinary physical or mental exertion.[1]: 78 This is known as post-exertional malaise (PEM). The fatigue in ME/CFS does not improve much with rest.[13] Difficulty sitting and standing upright, memory and attention problems and chronic pain are common. About a quarter of people with ME/CFS is severely affected and unable to leave their bed or house.
This is a great improvement, thank you to those who have been working on it! My only significant change is a preference for putting “The hallmark symptom…” ahead of the sentence about fatigue. My feeling on this arises from the current state of the science—that PEM is cardinal. I feel an account that puts fatigue and sleep ahead of PEM gives an out-of-date depiction of the scientific understanding, as I understand the literature. (I understood the preference for this order when the description of PEM was a worsening of symptoms that hadn’t yet been mentioned, but I think the “worsening of illness” phrasing solves this well.) More minor matters: I would swap attention for concentration (for me attention connotes something elective where of course the point is this is involuntary), and in the last sentence, I wonder if it might read better to say “are” instead of “is”, even tho I appreciate that’s technically less grammatically correct. Not at all wedded to the last point. Thank you again for all the work that’s gone in here. Innisfree987 (talk) 13:00, 2 January 2024 (UTC)
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term illness involving multiple organs. Persons with ME/CFS have a greatly reduced ability to do everyday tasks that had been routine, along with sleep problems and fatigue.[12][13]. The hallmark symptom of ME/CFS is a worsening of the illness after ordinary physical or mental exertion.[1]: 78 This is known as post-exertional malaise (PEM). Fatigue in ME/CFS may be severe and long-lasting, even after rest.[13] Difficulty sitting and standing upright, memory and concentration problems, chronic pain and other symptoms are common.
The illness affects multiple organ systems, it's not jargon.
Need to compare reduced ability to previous ability as opposed to general population ability. This is an important part of the symptom definition. Need to insert the comma and wording that reduced ability is not totally dependent on sleep and fatigue. Cognitive function, pain, orthostatic intolerance, and the other symptoms also cause reduced ability.
Use the CDC description 'severe' for fatigue, along with other descriptors.
Suggest the spectrum of illness can be described later in lead, as it already partially is. Suggest: "The disability from ME/CFS varies considerably. Persons with mild illness might be able to work and perform typical daily tasks with careful activity management, the severely affected can be bed-bound or house-bound."Ward20 (talk) 14:16, 2 January 2024 (UTC)
Describing the spectrum of the illness in the lead is good. We want someone who only takes a minute to skim the lead to have an idea of what the illness is like. For most conditions simply listing symptoms suffices, but with ME/CFS, the symptoms are hard enough to describe that explaining how much disability they cause is very informative. The Quirky Kitty (talk) 06:08, 8 January 2024 (UTC)
Note, I agree withInnisfree987 concerning the position of 'the Hallmark symptom', but am willing to compromis. and yield to consensus. I believe everything I was concerned with has been considered. Thank you for the work to improve the article. Ward20 (talk) 14:44, 2 January 2024 (UTC)
This looks good to me. Thank you for your work on this Femke. Ajpolino (talk) 16:19, 2 January 2024 (UTC)
I've added a compromise version to the lead. Multiple organs is definitely not how it's described in the literature.. It's systems, and most pronounced, systems that aren't described as a single organ (like nervous system, immune system and so forth). Have added the previous ability. Have added severe. I think it's good to give the illness severity a more prominent location in the lead, so I've stuck to that, not hidden in another paragraph. —Femke 🐦 (talk) 17:14, 3 January 2024 (UTC)
Thank you so much for all your work shepherding this process @Femke. Innisfree987 (talk) 21:43, 3 January 2024 (UTC)
Sorry I'm late to the party. The lead is still not as focused, short, or understandable is it could be, but we're making substantial progress. Let me dig through this thread and see what specific suggestions I can come up with. The Quirky Kitty (talk) 06:13, 8 January 2024 (UTC)
Like most of your changes. I do think the first paragraph has become too long again. Is it really necessary to spend that many words on the range of severity? —Femke 🐦 (talk) 19:25, 8 January 2024 (UTC)
References
^ abcdCite error: The named reference IOM2015 was invoked but never defined (see the help page).
Latest comment: 4 months ago5 comments4 people in discussion
I changed back to the wording 'of the illness following' because Flare-up has multiple meanings including anger, hostility so it needs to show context about illness. 'Following' is more accurate than 'after' because It more strongly conveys correlation. The other previous changes flow well with the paragraph. Ward20 (talk) 18:51, 6 January 2024 (UTC)
Looks good to me still :) —Femke 🐦 (talk) 21:06, 6 January 2024 (UTC)
What about "flare-ups of symptoms"? The Quirky Kitty (talk) 08:12, 8 January 2024 (UTC)
I think the word symptom is already used quite a bit and will become repetitive if we use it again. —Femke 🐦 (talk) 19:22, 8 January 2024 (UTC)
There was additionally concern that this could be confusing if the (other) symptoms hadn’t been mentioned yet; but also problematic if those symptoms were moved to precede the description of PEM, as that would de-emphasize PEM as a the cardinal symptom. It’s a quandary. Innisfree987 (talk) 20:00, 8 January 2024 (UTC)
Other common symptoms
Latest comment: 4 months ago2 comments2 people in discussion
Headache, night sweats, shortness of breath and other common symptoms contribute to disability and quality of life with ME/CFS. The lead should mention other symptoms are common.
Suggest changing : The severity of ME/CFS varies considerably.
to The range of symptoms and severity of ME/CFS varies considerably.Ward20 (talk) 06:33, 9 January 2024 (UTC)
At 141 words, the first paragraph is already quite bloated. I'd really like for us to go back to around 100/120 words. A lead is not supposed to be comprehensive. —Femke 🐦 (talk) 08:30, 9 January 2024 (UTC)
Concision in lead
Latest comment: 4 months ago15 comments4 people in discussion
Wanted to throw out some phrases and sentences I would cut from the lead for the sake of concision. Was going to just do it and let people have a look but I worried that might cause alarm! So, a list:
The severity of ME/CFS varies considerably. People with mild ME/CFS may be able to work and do other daily tasks while carefully managing their activities.[13]
In some people, physical trauma or psychological stress may also act as a trigger.[14]
and the drug rintatolimod may help some.
and can also lead to loneliness and alienation.
To emphasize, I don’t object to the substance of any of this; I only think it’s information that’s not critical to include in the lead and that its value is outweighed by the benefits of brevity. Welcome reactions. Innisfree987 (talk) 10:56, 9 January 2024 (UTC)
Are you reading my mind? These were similar to what I wanted to remove from the lead.
The second one I'm least certain about.. I think non-viral triggers are quite important, even if some ME/CFS researchers like Maureen Hanson are not sure about whether they exist..
The drug rintatolimod is insufficiently studied to be included imo, and is described as experimental in MEDRS.
The lonelineness and alienation is not included in the body. Is it possible to move that paper to the body rather than delete it? —Femke 🐦 (talk) 11:07, 9 January 2024 (UTC)
Agree on all. Toward concision, I did think perhaps the trigger sentence could add a phrase to capture your point, something like, "ME/CFS often, but not always, starts after a flu-like infection". But I don’t object to retaining the second sentence if you and others think it should be spelled out more completely. Innisfree987 (talk) 12:33, 9 January 2024 (UTC)
My thoughts about changing sentence wording for brevity.
Lengthy flare-ups of the illness following minor physical or mental activity, known as post-exertional malaise (PEM), is the hallmark symptom of the illness. The preamble can go, and combining the sentences make things a bit simpler. I don't think "relatively" adds because it isn't defined what it's relative to. Also, I thought exertion was going to substitute for activity?
Drop The severity of ME/CFS varies considerably., but keep, People with mild ME/CFS may be able to work and do other daily tasks. It goes with the next sentence to show the spectrum of illness, but it doesn't need the management part about activities.
the physical, trauma or psychological stress I am uncertain about keeping or moving. I think it could be condensed with the previous sentence if it is decided to keep it.
the third bullet point above can go as there are few people with ME/CFS in the United States that even have access to it. 40 people with Long Covid are supposed to receive it for 12 weeks with the Phase II AMP-518 trial concluding at the end of 2023.[37]. The fourth point could be moved somewhere else. Ward20 (talk) 13:19, 9 January 2024 (UTC)
Ok for starters I’ll cut rintatolimod from the lead. Innisfree987 (talk) 13:37, 9 January 2024 (UTC)
If keeping the bit about mild patients, I would prefer activity management also stay, so it’s still aimed at explaining how the disease affects them. Innisfree987 (talk) 13:40, 9 January 2024 (UTC)
The severity of ME/CFS varies considerably. People with mild ME/CFS may be able to work and do other daily tasks while carefully managing their activities.[13]
I like this (I added it!) but removing The severity of ME/CFS varies considerably. would shorten the lead while preserving the original meaning.
In some people, physical trauma or psychological stress may also act as a trigger.[14]
This isn't among the most important facts, so let's drop it.
and the drug rintatolimod may help some.
Definitely cut, Ampligen is only approved in Argentina and I don't think it's even being used there.
People with mild ME/CFS may be able to work and do other daily tasks while carefully managing their activities.[13] is no longer in the lead. There appears to be equal support for keep or removal. It would be a help if new editors would add to the discussion. Ward20 (talk) 23:27, 10 January 2024 (UTC)
Moving loneliness and alienation to the body
Concerning moving and can also lead to loneliness and alienation.[38] to body.
after rereading The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, significant material is presented in the review. The article describes how ME/CFS as a chronic condition can affect a person's mood, anxiety, loneliness, isolation and other stressors that play a part in a person with ME/CFS' sense of well-being and quality of life. The following is a concept outline only:
Under the section Pathophysiology
New Subsection Mental health and social well-being (synonym for psychosocial, but we don't have to label it that.)
Roughly, burdens include, but are not limited to skepticism and disbelief from associates, family or professionals, PEM and symptoms causing loss of function affecting schooling, job performance, economic security, socialization, physical activities, recreation, life goals, feelings of loss of self, large increases in self-care energy and time expenditure, and strained family, caregiver and peer relationships. "Physical suffering and distress plunge the body into a state of continuous stress that" diminish the persons well-being in mood and physical health.
Under Management
New subsection Mental health and social well-being
Maintaining contact with life, empathy from healthcare providers, professional counseling, peer counseling, support groups (“finding other people in the same situation as you, with the same struggles and daily trials makes one feel less alone... and helps alleviate feelings of isolation and loneliness”, spirituality and introspection (mindfulness?) versus isolation.
I'm mainly looking at these two FAs – Tourette and dementia with Lewy bodies – as two articles I get inspiration for structure. Tourette is most interesting here. In Tourette we have the section "signs and symptoms" renamed as "characteristics" with co-occuring conditions as one subheading. I was thinking of restructuring our signs and symptoms with a similar subsection. (I'll share more ideas on this section later when other discussions have finished).
In terms of management, why would you want to add something like 'mental health and social well-being' in addition to councelling? Would be better to combine that right?
The source is published in an MPDI journal, which is case-by-case for reliability. I've not yet checked if it is reliable. Have you double checked? There is an FAQ (Q8) that can help us determine reliability. —Femke 🐦 (talk) 19:57, 10 January 2024 (UTC)
Responding to the comments above, the following wording is not intended to be introduced in the article.
Using the definition of Pathophysiology from Encyclopedia of Behavioral Medicine pp 1443–1445[39]:
Pathophysiology (consisting of the Greek origin words “pathos” = suffering; “physis” = nature, origin; and “logos” = “the study of”) refers to the study of abnormal changes in body functions that are the causes, consequences, or concomitants of disease processes.
ME/CFS causes major changes in a person's ability to function and how society interacts with the person. These changes affect Mental health and social well-being as described above. The biochemistry of the changes within the brain are not known, but the resulting behaviors are documented.
If understand correctly, this topic could be described as Co-occurring conditions under Signs and symptoms. I agree with that. I think one problem is that behavioral articles use psychosocial jargon to describe these issues and the wiki article should describe it without jargon.
Councelling is only one component of the Management for Mental health and social well-being.
I did not check until it was mentioned. The MPDI journal Healthcare[40] is peer reviewed with an impact factor of 2.8. Not great, but not awful either. The material could be better sourced if there's a consensus it's worth pursuing.
Right, pathophysiology refers to what changes in the body are involved in the primary illness—the secondary effects of how society responds and what impact that has are not pathophysiology. Innisfree987 (talk) 23:39, 10 January 2024 (UTC)
Pathophysiology can be a biological response to societal stress too, think Post traumatic stress syndrome. How society responds can be an illness cofactor to mood, anxiety, hyper vigilance, which can effect immune response too. From what I understand from the definition above, pathophysiology is the mechanisms and consequences to the body of the total scope of the disease process. Ward20 (talk) 02:54, 11 January 2024 (UTC)
THe journal is indexed by Scopus, which says it's a middle-of-the-road in terms of citations for the field of health policy, so not great. It's a review on the social aspects of ME/CFS, and barely scratches the surface on anything to do with biology. The combination meh journal + the fact pathophysiology is not within the expertise of the authors (education for one, the other in the psychology of loneliness), makes me very uncomfortable to use it in that section.
The CDC does make the connection between physical or emotional stress having an effect on the endocrine system. We could say something like that.
What I would propose, is that we keep the councelling subheading in the management section, but also include a section on caregiving. If sources exist that is. This would be somewhat similar to Dementia_with_Lewy_bodies#Caregiving, and can describe the social isolation and how caregivers can help. —Femke 🐦 (talk) 19:12, 11 January 2024 (UTC)
I'd like your text to be included, but not an the pathophysiology section. Under a subheading of signs and symptoms would likely be the best place to put it. The Quirky Kitty (talk) 03:10, 12 January 2024 (UTC)
Toward a new move request
Latest comment: 4 months ago7 comments5 people in discussion
It's been around 9 months since the last move request, which closed as no consensus. I think enough time has now passed to see if a new consensus has formed in favour of a rename. Imo, the rest of 2023 saw a further cementing of the compromise ME/CFS name in MEDRS sourcing. I think it's easiest to propose only the option of myalgic encephalomyelitis/chronic fatigue syndrome, but I'm also open to a 1a (myalgic encephalomyelitis/chronic fatigue syndrome), 1b (ME/CFS), 2 (status quo) type of move request. What do you guys think? —Femke 🐦 (talk) 17:45, 3 January 2024 (UTC)
Taking the 2023 sources currently cited in the entry as a sample, seven use ME/CFS or myalgic encephalomyelitis/chronic fatigue syndrome, or both; one uses only chronic fatigue syndrome; and one deals with this question. This does feel enough accumulating emphasis to merit reconsideration. I suppose I suggest a multi-option move proposal because I think some may suggest ME/CFS regardless, so easier to organize discussion if acknowledged at top. Innisfree987 (talk) 21:42, 3 January 2024 (UTC)
Editors that favor a name change will need to have ducks in a row for a new move request. An issue occurred in the past with the WikiProject Skepticism label on the article. During requests, this alerted several WikiProject Skepticism editors that retain the out dated point of view that the illness is in the head or psychological. The name, 'chronic fatigue syndrome' better suits the point of view of the depressed and tired meme. That appeared to be where the main pushback against a name change occured at the last request. Just saying. Ward20 (talk) 20:07, 6 January 2024 (UTC)
I'll make sure I'll prepare sufficiently, don't worry :).
Let's make sure we focus on content and not on the editors. I think the focus on motivations in the previous WP:RM made it more difficult to find any type of consensus. I've always worked together well with that Wikiproject (on climate change denial), and my experience is that of fair-minded editors. —Femke 🐦 (talk) 21:04, 6 January 2024 (UTC)
Having 3 options is more likely to be productive. We should recognize that most people who favor a move will be okay with either ME/CFS or Myalgic encephalomyelitis/chronic fatigue syndrome, but may also debate between them. If the consensus is to move, we shouldn't get hung up on which alternative to use. This isn't a first-past-the-post election so similar alternatives shouldn't be allowed to play spoiler.
People from the Skepticism project are likely to come in, and some of them will give opinions we disagree with, but hey, the entire point of move discussions is to solicit diverse opinions.
I think it's reasonable to make another move request. It wasn't long ago, but the results were quite narrow last time: 7 to 6. Most supporters argued based on the Manual of Style and opponents argued based on the complexity of the term and lack of proven neuroinflammation. Enough new research (and media) cementing the new term in common use has come out since then that there's a chance of getting a different result.
This time, you do the honors. After my requested move failed, I decided not to start another request for a long time because I'd rather focus my efforts on making changes everyone wants over debating. I'll express my support. The Quirky Kitty (talk) 07:28, 8 January 2024 (UTC)
I'll do "the honours" either this weekend, or in three weeks, as I'm anticipating requiring some rest after next. Will do three options. —Femke 🐦 (talk) 19:43, 10 January 2024 (UTC)
Thank you! YannLK (talk) 19:15, 18 January 2024 (UTC)
Inclusion of Very Severe Patients
Latest comment: 4 months ago4 comments4 people in discussion
I really like the direction this page has taken and I feel it has really improved in the past year. One thing I want to comment on is the lack of acknowledgment of very severe cases, such as unable to speak or communicate in any way, and unable to tolerate slightest light or sound. One prominent example of a patient like this is Whitney Dafoe. I know there exists very little research on these cases and they can be so shocking some PCP's deny their existence but they do exist and more commonly than most realise. It would be nice to have more mention of them. YannLK (talk) 19:12, 18 January 2024 (UTC)
Fully agree. After the article rename request (launching tomorrow), I plan to propose a full rewrite of signs and symptoms, which would include a description of this group of people (under a subsection "grades of severity" or something). In management, I'd like to add a section on (family) caregivers, focusing on severe and very severe cases. What are PCP? —Femke 🐦 (talk) 20:34, 18 January 2024 (UTC)
Sounds great. PCP abbreviates primary care provider. Innisfree987 (talk) 00:46, 19 January 2024 (UTC)
Strong support. There is very limited coverage of very severe ME/CFS and no mention of death from it, which is rare but occurs. We should add what can be supported by reliable sources. The Quirky Kitty (talk) 06:40, 19 January 2024 (UTC)
Requested move 19 January 2024
Latest comment: 3 months ago13 comments9 people in discussion
The following is a closed discussion of a requested move. Please do not modify it. Subsequent comments should be made in a new section on the talk page. Editors desiring to contest the closing decision should consider a move review after discussing it on the closer's talk page. No further edits should be made to this discussion.
The result of the move request was: moved. Clear consensus to move somewhere. No consensus on whether to move to Myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, with most editors appearing to have no preference on this question.
The title guideline for medical articles states: The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources. Since the last since the last requested move, ME/CFS has seen further cementing as the common name in our top sources:
CFS seems to be used mostly still in alternative medicine and by some psychologists (see my analysis of 2023 PubMED reviews). It has fallen out of use due to concerns with neutrality (WP:NPOVNAME) as trivialising (as it often triggers the response "everybody is tired") and with being simplistic (it refers to a single unspecific symptom of ME/CFS: fatigue) —Femke 🐦 (talk) 19:55, 19 January 2024 (UTC)
Support 1a as proposer, 1b as second choice. I was surprised to see this article not named myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) when I was working with long COVID literature, and my search of quality sources on ME/CFS gives me a similar result: The compromise name myalgic encephalomyelitis/chronic fatigue syndrome is the standard name in high-quality MEDRS sources. I did a an analysis on what sources say themselves about the terminology. Most indicated a problem with the old name. CFS is seen not only as simplistic, but some patients see it as derogatory too. Finally, given the possible confusion between chronic fatigue (a symptom), and "chronic fatigue syndrome", ME/CFS is a more precise name. —Femke 🐦 (talk) 19:55, 19 January 2024 (UTC)
Your analysis is very thorough, Femke. Thank you for putting it together. The Quirky Kitty (talk) 09:36, 23 January 2024 (UTC)
Support 1a or 1b per nom. It's the term clearly preferred by major health organizations like CDC, NIH, and NICE. Skimming the last move review, it looks like there was some concern that ME/CFS isn't a very good name for this syndrome. Which, like, sure, I think we all agree on that. But it is still the name being used most widely and prominently to refer to the condition. So it's the appropriate title for us to use here. As to whether to use the initials or spell it out, I don't have a strong opinion. Ajpolino (talk) 20:37, 19 January 2024 (UTC)
Support 1a or 1b', per the guidance on most commonly used name in recent high-quality medical sources. To the sources already cited, I'll add that Mayo Clinic Proceedings2021 and 2023 reviews both use myalgic encephalomyelitis/chronic fatigue syndrome in the title and abbreviate it as ME/CFS in the text. Innisfree987 (talk) 06:08, 20 January 2024 (UTC)
On reflection, I think I have a slight preference for the abbreviation. To respond to @Oski's point, this seems more like using HIV/AIDS instead of human immunodeficiency virus/acquired immune deficiency syndrome than it is like using MS instead of multiple sclerosis. However spelling it out is definitely also preferable to me over the current title, which does not reflect the literature. Innisfree987 (talk) 16:11, 22 January 2024 (UTC)
Support 1a or 1b with slight preference for 1b, but redirects will send people looking for the abbreviated name to the correct place if 1a "wins". Little pob (talk) 17:28, 21 January 2024 (UTC)
Support 1a. Abbreviations as page titles of medical conditions are best avoided when the unabbreviated name is also in use. Compare for example multiple sclerosis, which is commonly referred to as "MS", but the wikipedia page is titled Multiple sclerosis. Oski (talk) 01:15, 22 January 2024 (UTC)
Support 1a or 1b with preference for 1a per discussion by Oski. Most of the national guidelines and WP:RS citations in the article now use the nomenclature Myalgic encephalomyelitis/chronic fatigue syndrome. Ward20 (talk) 05:01, 22 January 2024 (UTC)
Support 1b or 1a, favoring 1b. Femke's reasoning is on-point. Here's why I agree, cut down from my comment in a previous discussion. I'll use ME/CFS to refer to either for brevity. ME/CFS is more precise, is used in the overwhelming majority of authoritative sources, and better follows Wikipedia's general and medical title guidelines.
The general guidelines tell us, Generally, article titles are based on what the subject is called in reliable sources. Under this criterion, ME/CFS is a much better option. The guidelines also say to consider precision, among other points, and ME/CFS is much more precise. CFS is easily conflated with chronic fatigue.
The medical guidelines say, The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name) or an historical eponym that has been superseded. This strongly favors ME/CFS. They also recommend using the ICD-10 and DSM-5 for resolving regional naming disputes, though it's broadly applicable here. The ICD-10 uses ME and post-viral fatigue syndrome (Source), while the American ICD-10-CM seems to use ME/CFS first. (Source)
And as @Femke noted, CFS is a less neutral term, as it is commonly used by people who deny the scientific consensus that ME/CFS is a serious biological condition. Further, most patients consider it trivializing.
Considering these things, let's move to 1a or 1b. I will think about whether I prefer Myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS.
I prefer ME/CFS to the acronym spelled out. ME/CFS is concise, spelled out is unwieldy. ME/CFS is distinct enough that it won't be confused with other things like MS could. As @Innisfree987 explained, it's more like HIV/AIDS. So I prefer 1b to 1a, but I strongly prefer both over the status quo. I wouldn't be disappointed at all if we went with the longer title. The Quirky Kitty (talk) 08:46, 23 January 2024 (UTC)
Support 1a or 1b. Difficult to favor one over the other but ultimately it should be what most closely reflects the highest quality sources within the bounds of medical accuracy, I would think. There are any number of loopholes where one guideline conflicts with another, but this move is long overdue. I still can't fathom that editors successfully argued against this proposal as late as a year ago, but hopefully that's in the past even though I do still wonder if we'd have seen a similar course of inaction on any other medical illness. I won't belabor the point but the CDC is arguably the most significant entity in the larger discussion and the relevant section of their website changed from "CFS" to "ME/CFS" in July 2017.
My personal preference is not relevant here but I believe @The Quirky Kitty's reply above mine offers a logical and reasonable argument for 1b. NeurastheniaMilkshake (talk) 04:44, 26 January 2024 (UTC)
I'm most surprised that we've gone from roughly 50-50 to unanimous support. The Quirky Kitty (talk) 06:48, 26 January 2024 (UTC)
The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.
Deconditioning
Latest comment: 3 months ago4 comments4 people in discussion
I've added a link to this article to the see also section at deconditioning. However, if anyone has the time and sources, it might be better to provide context for its inclusion by adding one or two sentences explaining that deconditioning can complicate ME/CFS but isn't a recognised cause. Little pob (talk) 12:35, 23 January 2024 (UTC)
Given that deconditioning plays a role in almost any severe disease, I'm uncomfortable with adding it there without context. —Femke 🐦 (talk) 17:16, 26 January 2024 (UTC)
Thanks for bringing it here for discussion. I agree with Femke and so have removed it for now. That's a very brief article which IMO would need a great deal of expansion before the secondary effects of deconditioning on ME could be mentioned without a significant issue of undue weight. That is, if the topic were ever significant enough to the medical phenomenon of deconditioning to rate a mention—I'm not sure it is. Innisfree987 (talk) 17:59, 26 January 2024 (UTC)
I think the way to Wikipedia:Build the web to that page is to include a sourced statement, probably in the ==Management== section, that says many people with ME/CFS have to find a balance of activity that will not trigger a flareup while also preventing deconditioning and other problems associated with activity limitations. "As with any other chronic disease" might be a fair way to frame that. WhatamIdoing (talk) 21:20, 28 January 2024 (UTC)
Proposed restructuring signs and symptoms
Latest comment: 3 months ago3 comments2 people in discussion
I propose we restructure the signs and symptoms into these subheadings:
Core symptoms. Similar to what there is now, but without the sole focus on CDC (also including NICE). The key reason to change this is that the core symptoms are now written from a diagnostic perspective, rather than descriptive. This means we don't have many words to describe PEM for instance.
Other commons symptoms. Mostly the same, but will see if I can rewrite a bit more into prose
Severity: see my proposed text below. I've copied about half of 'physical functioning' into that section. The text in physical functioning is about overall disability, which is caused both by physical and cognitive symptoms. Most of the text I deleted was either very old or duplicative. The sentence about pain should be updated and moved to "other common symptoms".
Q1: should we include the results from the SF36? It may be overly technical?
Q2: where does school absence go?
Q3: is the Healthcare journal about severe, very severe patients sufficiently reliable? It's the best source I could find, but it's an MPDI journal. According to Scopus is ranks the 59 percentile in the category Health Policy.. I don't think the content is very surprising or requiring a top source, but would like some input.
Onset: mostly as is, but I think the sentence about viral onset percentages is outdated, as maybe half of people with ME/CFS got it after a COVID infection. The current numbers are also based on Fukuda (at least the IOM citation is). The 2024 BMJ Practice Guideline says 66 to 90% have viral onset, and that's more like what I've been reading in recent sources.
I may add a comorbidities section here too later, in which I describe common comorbidities like connective tissue syndromes/fibro, but also secondary anxiety and depression. This would also be the section where I can introduce minority/historical views (anxiety&depression as symptom, or anxiety&depression as a sign of psychological co-cause).
Proposed text
Severity
ME/CFS often causes significant disability, but the degree varies greatly.[1] People with ME/CFS can be divided into four categories of severity:(NICE page 95)[2]: 10
People with mild ME/CFS can usually still work and care for themselves, but will need their free time to recover from these activities, rather than engaging in social and leisure activities
Moderate severity results in a large reduction in activities of daily living (self-care activities, such as feeding and washing oneself). People are usually unable to work and require frequest rests.
People with severe ME/CFS are homebound and can do only limited activities of daily living.
In the very severe group, people are mostly bedbound and cannot independently care for themselves.
Roughly a quarter of people with ME/CFS fall in the mild category, half in the moderate or moderate-to-severe category.[3] The final quarter fall in the severe or very severe category.[4]: 3 Severity may change over time, with periods of worsening, improvement or remission sometimes occurring.[5] Persons who feel better for a period may overextend their activities, triggering post-exertional malaise and a worsening of symptoms.[6]
People with severe and very severe ME/CFS experience more or more severe symptoms. They may face severe weakness and may be unable to move at times. They can lose the ability to speak or swallow, or lose the ability to communicate completely due to cognitive issues. The activities that can trigger post-exertional malaise in these patients are very minor, such as sitting or going to the toilet. They can further experience hypersensitivities to touch, light, sound, and smells, and experience severe pain.[7]
Results of a study on quality of life of people with ME/CFS, showing it to be lower than in 20 other chronic conditions
People with ME/CFS have decreased quality of life according to the SF-36 questionnaire, especially in the domains of vitality, physical functioning, general health, physical role, and social functioning. However, their scores in the "role emotional" and mental health domains were not substantially lower than healthy controls.[8] A 2015 study found that people with ME/CFS had lower health-related quality of life than 20 other medical conditions, including multiple sclerosis, kidney failure, and lung cancer.[9]
If useful, I can remake the graph in a more accessible format. I can remove the illness codes and remove the mean values (so only displaying the median). That way, the font size can be made adequate. —Femke 🐦 (talk) 09:37, 21 January 2024 (UTC) —Femke 🐦 (talk) 09:37, 21 January 2024 (UTC)
Proposed text looks good to me.
(3)
Q1 I support include, it can always be reworked later, if need be.
Q2 I would say the Epidemiology section.
Q3 Could double cite this paragraph. NICE guideline NG206 supports all but the PEM sentence. Ward20 (talk) 06:02, 22 January 2024 (UTC)
I've got a new plan: it's too subjective how to distinguish "core sypmtoms" and "other common symptoms" given that diagnostic criteria vary so much. Instead, I'd like to describe 6 main symptoms in a separate heading: debilitating fatigue, PEM, sleep disturbances cognitive dysfunction, orthostatic intolerance and pain. A seventh subheading would be for "other common symptoms". Does that make sense too?
I'll suggest some other changes to ensure our structure doesn't become overwhelming (to still meet WP:FACRITERIA 2b) in the history section. A comorbidities section could be level 2, just like fibromyalgia if we want it. —Femke 🐦 (talk) 17:08, 30 January 2024 (UTC)
^Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG) (17 April 2023). Myalgische Enzephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Aktueller Kenntnisstand [Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): current state of knowledge] (PDF) (in German). Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen. ISSN1864-2500. Archived(PDF) from the original on 2 November 2023. Retrieved 21 January 2024.
Latest comment: 3 months ago8 comments3 people in discussion
Alalch E., could you please pause all the moves and edits you're making to insert spaces in this page title and the many pages that link to it? It took more than a year to get consensus on the move and you unilaterally changed it to an option that was not on the table and does not actually reflect the literature. I would appreciate it if you sought consensus first. Innisfree987 (talk) 19:48, 28 January 2024 (UTC)
Mayo, CDC, NIH, NICE for just a few examples that do not use spaces the way you have inserted them. Innisfree987 (talk) 19:52, 28 January 2024 (UTC)
Additionally the section of the MOS you cited says, "A spaced slash may be used", rather than should or must be used. Innisfree987 (talk) 19:55, 28 January 2024 (UTC)
This is the same option, it isn't different in terms of naming, and the difference is a minor orthogrpahical issue. For some reason, these institutions have found it appropriate not to use the spaced slash. This doesn't obligate us to replicate their suboptimal use of punctuation. They are doctors, healthcare professionals, and administrators, and we are encyclopedia writers. We understand better than them how best to use the slash to the maximal benefit of our readers. I'm done with all of the edits of this type, and this is now being discussed at Wikipedia talk:Manual of Style#Spaced slashes. You may revert my move, but please, perhaps, give it several days, to see how that discussion develops. Sincerely. —Alalch E. 19:58, 28 January 2024 (UTC)
@Alalch E., could you please revert all your moves until there is consensus? I had just happened on that discussion and am very disheartened you saw fit to impose your version before it was resolved. Innisfree987 (talk) 20:00, 28 January 2024 (UTC)
Don't be disheartened, I get what you're saying. There was only one WP:MOVE, that is, of this article, which I will self-revert (edit: see Special:Diff/1200116569), which is the same as if you had done it. For that issue, I might start an RM, depending on how the above linked discussion progresses. All of my other edits relating to this today, were not moves, but were changes of article wikitext, many of which fixed multiple issues in the same edit. If there is sufficient clarity over the course of several days that the unspaced slash version is preferred, I will revise those edits, meaning incrementally improve upon them, to bring those articles to the state more desired by the community. Many of them were removing unnecessary piping, for example, and I will not revert those edits entirely. But, at any time, you can go ahead, and make yourself those changes which I will have made at a certain point in the future. I will make them myself, I promise, under the above condition. But I don't agree that these would be good changes, and stand by the spaced slash version, as significantly clearer to the reader. —Alalch E. 20:08, 28 January 2024 (UTC)
There are thousands of research articles or major media articles using the ME/CFS terminology now, but I've never seen any use spaces between the /. The Wikipedia article should use what is generally accepted practice and not reinvent the wheel. Ward20 (talk) 18:09, 30 January 2024 (UTC)
@Innisfree987: I went over my Jan. 28 edits and did the thing, just to let you know.—Alalch E. 11:35, 4 February 2024 (UTC)
Followup on article move/renaming
Latest comment: 3 months ago9 comments5 people in discussion
There are a number of subpages for which corresponding moves may be appropriate, as well as the category "Chronic Fatigue Syndrome" itself? If this is a prudent move forward, it looks like there would be about five or so within the category that would look to qualify, in order to maintain consistency (I'd think Treatment, History, Clinical Descriptions, Controversies, and People with CFS). Not sure about the template; but likely no reason to bother with the CFSAC page. Thoughts?
Here, we can be a bit inconsistent and use ME/CFS? The page names would otherwise become quite large. For the category, the name full-out would work best for consistency? —Femke 🐦 (talk) 18:13, 27 January 2024 (UTC)
I hadn't even thought about that aspect of it. You're probably right. I just wanted to address that further steps might be suitable. Unless there's a strongly worded guideline mandating absolute consistency, using ME/CFS on the subpages certainly makes sense style-wise. In a case like this do there have to be further submissions of move requests? Individually for each page or one for the group? NeurastheniaMilkshake (talk) 18:24, 27 January 2024 (UTC)
We can do this boldly depending on input here, or list all of the articles in a single move request.
The title policy puts quite strong emphasis on consistency, so this would be an WP:Ignore all rules invocation, based on usability. The title of this article is already a bit unwieldy, which would only get worse with the subtopics. —Femke 🐦 (talk) 18:37, 27 January 2024 (UTC)
Yes, those article titles would be far too long without abbreviating to ME/CFS. The Quirky Kitty (talk) 20:12, 27 January 2024 (UTC)
I say go for it. This is unlikely to generate controversy. Ajpolino (talk) 20:13, 27 January 2024 (UTC)
In that case, I went ahead and moved the pages with "chronic fatigue syndrome" in the title. The Quirky Kitty (talk) 08:46, 28 January 2024 (UTC)
I edited "Template:Chronic fatigue syndrome" to agree with the new term, but "Category:Myalgic encephalomyelitis/chronic fatigue syndrome" doesn't work correctly and I don't know how to fix that. Ward20 (talk) 03:14, 29 January 2024 (UTC)
A discussion is taking place to address the redirect Tired all the time syndrome. The discussion will occur at Wikipedia:Redirects for discussion/Log/2021 June 4#Tired all the time syndrome until a consensus is reached, and readers of this page are welcome to contribute to the discussion. – Arms & Hearts (talk) 11:07, 4 June 2021 (UTC)
