Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 17

Archive 10

←

Archive 15

Archive 16

Archive 17

Archive 18

Archive 19

Archive 20

CFS External Links

Replying here to discussion on my talk page

I removed the links in question because of WP:EL. " Long lists of links are not acceptable." and " Any site that does not provide a unique resource beyond what the article would contain if it became a featured article."

There are many many support group internet sites besides the Chronic Fatigue Syndrome Association Web Site. How is that particular one selected and others not, when long lists of links are not acceptable? Likewise with the WebMD Chronic Fatigue Syndrome page, NIH MedlinePlus page on CFS, and Mayo Clinic Page on CFS. There are many established and recognized sites that give similar information. The CDC site is recognized as a superior comprehensive source by the number of article cites to CDC studies and links. It is already an EL, and it gives almost all the information the other sites have, so in my view it is repetitive to add the others. Ward20 (talk) 23:28, 4 August 2013 (UTC)

I'm inclined to agree. Multiple websites providing much the same limited information are of little use to readers. AndyTheGrump (talk) 23:31, 4 August 2013 (UTC)

I would agree with that as well. Another thing I noticed is that all the sites listed are American. If there are any additional sites needed, which I don't really feel there are, they should be from different countries if possible, since views of ME/CFS vary from one country to another (hence the CDC, Oxford, Canadian, and International criteria, which differ from one another markedly). – RobinHood70 ^talk 02:50, 5 August 2013 (UTC)

Medication for CFS

Sorry everyone. I'm usually way behind time considering all the previous messages. I have been suffering with CFS/ME/Yuppie Flu for about 9 years now. A tablet called Provigil (hope I'm not contravening any laws by mentioning the name)has helped me tremendously with the fatigue I experience. It was first prescribed by a neuro-surgeon then followed with prescriptions by a GP. The medication is quite expensive and is not supported by all medical aids.

I hope this will help someone out there.

--105.228.226.9 (talk) 17:22, 22 October 2013 (UTC) Annette von Brughan, Pretoria, 7.22pm. 22 October 2013

It bears remembering that this is not a forum, and that personal experiences are usually of limited use when writing encyclopedia articles.

There is little to find in the medical literature about uses of modafinil (Provigil) for CFS. If you aware of high-quality studies into this drug, particularly sources that meet the criteria from WP:MEDRS, please let us know. JFW | T@lk 19:12, 22 October 2013 (UTC)

WP:BRD edit reversion [1]

I revered due to a number of issues. The changes to the lead were based on sources that don't meet WP:MEDRS and are not explained in the body of the article. That said, there may be source material that can justify a section that does explain differing opinions that ME and CFS are separate illnesses. There is increasing literature indicating that subgrouping patients may be critical to explain the differing conclusions of researchers. I don't know if the sources are definitive enough about this yet. Most of the other undone edits did not seem WP:NPOV although perhaps McClure statements should be attributed to her as the source does.

Not sure of the source of this currrent material, "In 2011, it was reported by the BBC that this conflict had involved personal vilification and allegations of professional misconduct to professional societies and universities of researchers who were investigating possible psychiatric connections." Any help there?

Johnson's book is an interesting read, but how to justify if over other many books on the illness is an issue for me.Ward20 (talk) 19:01, 5 January 2014 (UTC)

Forming a strategy to reach some form of Consensus.

There are some widely differing opinions on what content should be in this page, and it seems what purpose it should serve given some rather political comments edited into it.

Lets start with something on which we can hopefully find easier consensus and try to agree some things between us before further edits are made.

1. The IC9 could lists it as disease of unknown type that should be the starting point, not any particular dogma.
2. The International Consensus Criteria 2011 are a published standard giving something information about possible causes, treatments etc. Since a very large body of expertise across disciplines was involved. They should provide a reasonable and balanced staring point.
3. Both of the above should be quoted in the article.

Harder parts

1. There are various views both clinically and in research of treatments, this should be reflected.
2. CBT and GET have been shown in positive light in some studies, in negative light in others. The cited studies should refelct this lack of consensus as should the content.
3. Patients remain the ultimate judge of whether something works for them until an objective reliable tests is found. Published and peer reviewed surveys conducted independently and reflecting true success or otherwise of a strategy should be used as a baseline.

I look forward to hearing your comments re this proposed step 1 --Leopardtail (talk) 19:52, 25 February 2014 (UTC)

Hello Leopardtail, you are not the first to come to this page with this particular agenda, and if you look in the archives you will find that almost every single point you raise has already been discussed and a consensus formed. I would be surprised if you would achieve to overturn that consensus. There are huge problems with the 2011 "consensus" criteria because their reproducibility doesn't seem to have been tested. The highest-quality secondary sources point at a benefit of CBT and GET, and smaller negatives studies have been incorporated in those sources; we are now not going to provide even more balance than already provided by the secondary studies in question. I'm not entirely sure what you are trying to say in your last point. JFW | T@lk 19:56, 25 February 2014 (UTC)

Actually Leopardtail, patients are not the "ultimate judge of whether something works". I think you should investigate the placebo effect. There was actually a review a while ago looking into the placebo effect specifically in CFS. --sciencewatcher (talk) 20:48, 25 February 2014 (UTC)

Point one, I am referring to reports on Mass, not single patients. Placebo can have some effect on disease, however were it able to cause people to start or stop being able to walk in large numbers, we'd all be getting therapy in church.

Point two, the nature of the interaction between those delivering GET/CBT and the close working relationship should produce two distortions. 1) Massive positive placebo response 2) Positive bias on the part of patients that is inevitable in close relationships.

--Leopardtail (talk) 02:58, 26 February 2014 (UTC)

Also, regarding CBT/GET: we rely on reviews and the reviews look at all the studies (positive and negative), and their conclusion is based on all the studies available that meet their quality (and other) criteria. If you have a look at the treatment page you'll see we go into it in quite a lot of detail, and there has been quite a lot of discussion on the talk pages over the years. --sciencewatcher (talk) 20:51, 25 February 2014 (UTC)

1. A review is no more than one person's interpretation. The most common technique used in such reviews is to take the most commonly reported opinion rather than assess the inherent quality. They have greater value in well established science (e.g. type I diabetes) where there is more established fact against which to confirm the validity of studies and global consensus on selection criteria. Such an exercise is futile given that we have London, Oxford, CDC in multiple prior versions, Fukuda, Canadian Consenus, along with various ones used throughout Europe and Australia.
2. The historic bias towards the psychological viewpoint makes any such decision by volume inherently unscientific.

--Leopardtail (talk) 02:58, 26 February 2014 (UTC)

Easy 1: The ICD-9 lists it as one thing, the ICD-10 groups it with something else, and the DiseasesDB groups it with something else yet again. The consensus is: there is no consensus on what this disease should be grouped with. So, yes, saying it's unknown should be a starting point, and indeed, it is, right in the first paragraph: "...the etiology of CFS is not understood and may have multiple causes."

If that is agreed then all well and good. The content of the article however still shows in order or presentation, missing content, and amount of content too strong a leaning toward the work of the Psychosomatic viewpoint.

Easy 2: The ICC seems like a great starting point for research, but unfortunately, they're not in common use so far. I think part of this is that they're still being evaluated for how well they distinguish different patient populations, but there is, of course, a certain reluctance on the part of researchers to move away from the established criteria, no matter how much sense it might make. Both the CCC and ICC are starting to make inroads, but they're not there yet, at least as far as I've seen. Wikipedia should reflect what's in common use, as well as what's upcoming, with appropriate weight given to each. The CCC gets a spot on this page, and the ICC and others have a spot on the companion article, Clinical descriptions of chronic fatigue syndrome.

My primary point here was that a balanced panel created these criteria, in stark contrast to most of its predecessors. Irrespective of its level of use if provides us with a good starting point re what should be considered for inclusion here. It was both produced and peer reviewed by the very people who should be providing 'peer review' of articles elsewhere. For that reason I see its content (it discusses a large range of issues) as a good place to start in producing a 'reviewed' view of the disease that satisfies all camps.

The CDC criteria does for obvious reasons have traction in the USA, however world-wide that's less the case - hence they are a 'national standard' where Wikipedia is international. I was not however making any criticism of this. One point I would make however is that Post Exertional Malaise is the hallmarks symptom of ME and it's mandatory presence is a great improvement that should be reflected here.

--109.176.218.221 (talk) 02:15, 26 February 2014 (UTC)

Easy 3: Why should we quote those two specifically over any other sources? Quoting select sources is basically cherry-picking. We as patients may not like the body of research that's out there, and rightfully so, but that doesn't negate the fact that it is out there. That's what any encyclopedia would report on, and Wikipedia is no different that way.

I did not say that all other opinion should be excluded, rather that they should be included. Both are international in nature, neither imply any particular cause or imply any discipline bias in their approach.

I do actually think for example that CBT can be a valuable tool in CFS but not when it is delivered with the 'wish yourself well' model. The over focus on it both in dogmatic medicine and in this article is what causes me concern in both scenarios.

--109.176.218.221 (talk) 02:15, 26 February 2014 (UTC)

Hard 1: There are indeed various views. What in this article leads you to believe otherwise? In the pathophysiology section, we mention "oxidative stress, genetic predisposition, infection by viruses and pathogenic bacteria, hypothalamic-pituitary-adrenal axis abnormalities, immune dysfunction as well as psychological and psychosocial". Out of all of those, only two are strictly psychological in nature, and the HPA axis is often related to stress, so could be considered somewhat psychological.

Point taken re that particular section - I would suggest that Mitochondrial should also be added to those views.

It gives very brief mention to others then spends an excessive proportion of the article discussing primarily therapies from one viewpoint. It goes on to discuss the patient-doctor relationship exclusively dealing with a handful of nutcases and ignored the very positive relationship between ME patients and doctors who use some real science. It's barely short of being mass libel. There are very many highly respectful patients grateful for the help they receive. There are also a significant number of highly respected ME specialists. This part of the article would not be considered okay it so edited in case of gender, race or religion - the skewed emphasis is not appropriate here either, its imbalanced and more newspaper than encyclopaedia.

--109.176.218.221 (talk) 02:15, 26 February 2014 (UTC)

Hard 2: The CBT and GET sections may sound positive at a glance, but when you really look at them, they reflect the research out there fairly accurately. The CBT section specifically mentions dissenting research, and even in the more positive section, mentions that "the evidence base at follow-up is limited to a small group of studies with inconsistent findings". The GET section similarly notes that no severely affected patients were involved in these studies, and that patient research has indicated adverse, rather than positive, effects.

Up to a point I agree having looked at this more closely, I became quite cross at comments in Doctor-Patient relations and and a rather dubious edit history, I read this with a red-mist (part of the reason I chose to try and open a debate rather than edit) my apologies for that. I would however maintain two points.

1) Excessive coverage is given to heavily researched but highly contentious therapies that show poor results, these are all spawned within the 'Psychosomatic' school - this lacks balance. More widely successful and less harmful methods are given no appreciable coverage.

2) It needs to start more 'even handedly' in its summary - first impressions dominate and the less informed will skim read. This should (I hope) be easy to agree one. I will ask you all to read and see if you understand my point, my guess is that we will be able to collectively rectify that with some ease. I will do the same tomorrow with 'fresh eyes and a new mind'. We need to remember that the target audience is not experts, but layman.

--109.176.218.221 (talk) 02:15, 26 February 2014 (UTC)

Hard 3: As patients, we know only what has worked for us. I've seen numerous people on forums and here on Wikipedia whose experience of CFS is vastly different from my own, and what has had an effect for some has had no effect or even a negative impact for others. Regardless of whether or not patient views are consistent, however, there's the simple fact that they're not considered relevant on Wikipedia, nor should they be. According to the Identifying reliable sources (medicine) (aka MEDRS), secondary sources such as reviews are what we should be using as the primary basis for an article. Other studies are certainly relevant, and MEDRS certainly allows for their use in certain situations. (In point of fact, they seem to have updated that to what I consider a much more reasonable and comprehensive stance since last I looked.) In the end, though, most science that isn't highly methodological—which most certainly includes patient reporting and viewpoints—isn't considered to be decisive enough to include on Wikipedia.

Patients reporting viewpoints is in point of fact how most Psychological research into this disease is performed, generally using Likert scales that are thoroughly unreliable. Whilst they come in the methodology of forms, they remain opinion. The problem is one of timing. I agree fully that patients have different symptoms and different experience reflecting that wider view is part of the issue here, but not something I raised at what was intended to be a relatively soft and diplomatic start.

There was an assumption here that I was referring to positive placebo where I was actually referring to serious harm done to patients. I have seen patients made unable to walk by these therapies. Placebo has its limits, we would otherwise go to church not our doctors. Since these therapies are presented as positive and patients agree to take part one would expect positive placebo results. Finally patients are reporting in large numbers that they are made worse, this again seems unlikely to be placebo. When large numbers of patients report the same effect, it is actually a more reliable indicator.

--109.176.218.221 (talk) 02:15, 26 February 2014 (UTC)

In conclusion, I think that science will, with time, figure out what CFS, ME, and any other variants of them are all about. In the meantime, we have to put up with a lot of misconceptions, or being inappropriately lumped in with other patient groups. Nevertheless, an encyclopedia is about the science, not what we as patients believe is the truth. – RobinHood70 ^talk 00:21, 26 February 2014 (UTC)

If one understands the underlying science well enough, and cellular biochemistry in particular there is a lot of credible science already. I would like to see much of it repeated and done on larger scales. I would also like to see more precise and more consistent selection criteria especially in psychiatry. More consistent reporting of variance with disease severity and duration would come next. Two things are causing real problems here: 1) most medics have a very poor understanding of what's happening in cells 2) an obsession with size over quality.

Differential diagnoses

There is an issue with this on line one. It is too US centric, and does not reflect common practice. Line one assumes CDC and assumes that fatigue is the the only symptom. Other diseases do not cause the same pattern of fatigue, they also do not cause the whole symptom profile or PEM by its proper definition. This is one area where the new International Consensus Criteria makes headway and reflects actual practice outside of Psychiatry. — Preceding unsigned comment added by Leopardtail (talk • contribs) 06:37, 26 February 2014 (UTC)

In wikipedia we rely on reliable sources, not "common practice". And CDC does not assume that fatigue is the only symptom. You seem to be falling into the trap of believing everything you read on patient forums without investigating it for yourself. PEM isn't universally agreed as being a hallmark of CFS/ME or anything else. Although it is very common, it's hard to pin down. Even studies that have looked at it have found many different types of PEM (from immediately after, to the day after, etc.) You seem to be under the impression that psychiatrists have a big conspiracy with the insurance companies to prove that ME patients don't have any illness. It's understandable that you have that view, as that is what everyone in the patient forums believes. However if you actually do a little bit of research you discover that it is a bunch of crap :) --sciencewatcher (talk) 17:11, 26 February 2014 (UTC)

Economic impact

Actually, the (2004) study[2] is already partially sourced by a review[3]. ",...the annual total value of lost productivity in the United States due to this illness has been estimated to be $9.1 billion (Reynolds et al., 2004)." A secondary source for the Jason study[4] I haven't found yet. I did find this 2009 review[5] "...this represents an annual global loss of productivity of approximately €6,900 million, or what is the same €15,200 per patient and year. These figures are comparable to the losses caused by other diseases, such as digestive system-related conditions or infectious and parasitic diseases [1,64], suggesting that the CFS can be included with other chronic processes among the highest healthcare and socioeconomic burdens." Ward20 (talk) 08:05, 27 February 2014 (UTC)

Obey the rule please

Attempts at bullying are occurring on this page. WP:BRD actually states that YOU should create a bold edit here first, not revert it. WP:MEDRS requires that opinion be avoided where medical fact is concerned and that is should be from an acknowledged expert in the field. — Preceding unsigned comment added by Leopardtail (talk • contribs) 14:44, 26 February 2014 (UTC)

Leopardtail, the only person who is bullying here is YOU. You accused me of being a psychiatrist (LOL) and now you are completely ignoring all of wikipedia's rules just so you can inject your own opinion into the article rather than relying on reliable sources. You certainly have a very interesting opinion of what is a good medical source (Teitelbaum). BTW, it wasn't even me who said that Teitelbaum is not respected by patients. It was Rob who said that, and then you seemed to misread his comment and accused me of saying it. I don't necessarily disagree with Rob, but I don't want to get sued either. Anyway, I think you need to calm down and rethink your editing of this article. --sciencewatcher (talk) 15:46, 26 February 2014 (UTC)

Sciencewatcher, yes I did realise that and apologise. The fact does remain however that three people on this page are reverting quite systematically without attempting dialogue here. I am not the first user with whom this has occurred. Look at your collective history of reversion, not just with me, but with others - I suspect you may be surprised.

I agree the EVERYBODY should be discussing here first not reverting. Equally wiki does have a policy of edit first, then discuss - I did check those pages quit thoroughly following earlier comments.

That needs to apply to all of us though. — Preceding unsigned comment added by Leopardtail (talk • contribs) 15:28, 27 February 2014 (UTC)

Pause for Thought

I have realised that part of the problem I perceive relates to part of the NPOV guidelines relating to structure & forks. Hopefully once I have taken time to mull that over along with your comments we will find a better collective modus operandi.

In the meantime, may I ask that you review Ward20's comments above and suggest you take a look at how many 'single references' are in this article? Given that its exclusive concern was CBT, that is not something I wanted action.

As for the Psychiatrist part, it does have its place in balance - though I can only remember referring to general principles. — Preceding unsigned comment added by Leopardtail (talk • contribs) 16:25, 26 February 2014 (UTC)

In general we should be relying on reviews rather than primary sources. In some cases we use primary sources to expand on things, or we include primary sources that are referenced from the reviews. Occasionally we use primary sources when no reviews are available if the study is very important/newsworthy (as we did with XMRV). I think we did get rid of a lot of primary sources a while ago in the article, but certainly if there are still any left then we should look at them. Also note that MEDRS only applies to medical claims. When discussing culture we just rely on WP:RS. --sciencewatcher (talk) 17:04, 26 February 2014 (UTC)

sciencewatcher I agree that where pragmatic we should be using secondary sources (given that tertiary sources barely exist). Where I see an issue is creating NPOV given that secondary sources are almost all weighted in one area of research due to the bias alluded to elsewhere in the article. A secondary source requires high volume of research in one particular aspect of the disease and preferably repetition. Exclusive secondary sources in this area seriously disrupts Neutral point of view create marked bias for many years towards a single medical discipline.

sciencewatcher Thank you for the clarification re medical claims.

I have been re-reading WP:BRD and would like your interpretations of 'adaptive edit' referenced under discussion of edit warring. --Leopardtail (talk) 15:25, 27 February 2014 (UTC)

Support groups

I am finding this section difficult to interpret, for me at least it needs clarification. In the original study it appears to be comparing clinical support groups with clinical CBT. In this content 'patient support groups' was my first reading. Finally are we talking about negative 'social' interactions here? I will leave this to whomever entered it and can access the full paper, but reading it cold is hard to put it mildly. — Preceding unsigned comment added by Leopardtail (talk • contribs) 06:48, 26 February 2014 (UTC)

Thank you for your comments. This section is sourced by a primary study and most likely should be removed. Ward20 (talk) 10:51, 26 February 2014 (UTC)

Thanks for your response Ward20, I will leave if for now though and establish wider opinion - its a significant edit. — Preceding unsigned comment added by Leopardtail (talk • contribs) 13:17, 26 February 2014 (UTC)

I would support getting rid of Economic Impact, Social Services and Support Groups sections, as they all rely on primary sources and seem to have limited value. Perhaps they should at least be expanded and better referenced. The doctor-patient relations section should stay, however, as it is an important issue and is well cited. (Yes they are not reviews, but that info doesn't fall under MEDRS). --sciencewatcher (talk) 18:42, 26 February 2014 (UTC)

Thanks for pointing out the other sections Sciencewatcher. Please don't remove the Economic Impact, and Social Services sections just yet as I believe I can find secondary sources for them. I don't believe the economic impact section would have to be WP:MEDRS, just from a secondary reliable source. Ward20 (talk) 01:53, 27 February 2014 (UTC)

It might be worth expanding the Support Groups section, as it would appear to be an important issue (considering that so many patients use them). Another article is "Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members" by Friedberg. It concludes "This cross-sectional study suggests that support groups for CFS are viewed as helpful by participants on a number of illness related issues. On the other hand, active members reported greater symptom severity and less illness improvement than inactive members or dropouts." Both of these primary studies are cited by reviews, although I haven't had a chance to dig into them. --sciencewatcher (talk) 03:44, 27 February 2014 (UTC)

That would be an improvement if we have some current review material there rather than primary sourced. IMO.Ward20 (talk) 08:54, 27 February 2014 (UTC)

If we are going to have Political items present, such the the doctor patient aspect - then the wider issues that create justifiable anger on the part of patients need to be present. I equally agree that once 'secondary sources' can be located they should be preferred. I can vaguely remember Liverpool council set up a training program designed to alleviate service failures suffered by PWME. For this type of material newspaper articles should be perfectly acceptable references providing the 'angle' is not too strong.

I do wonder however whether we can structure this material to create a 'readable narrative' that is easier to read and presents a cohesive picture, possibly slimming things down in the process. The 'big picture' of the relationship between PWME does seem to be valid content for an Encylopedia once a way is found to make it balanced, cohesive and well structured.--Leopardtail (talk) 22:37, 27 February 2014 (UTC)

Awareness day

I disagree with removing this material because the source is secondary (not close or associated to event WP:PSTS). It is the interpretation of Dr. Nancy C. Lee, Deputy Assistant Secretary for Health and was published by the HHS, a reliable third-party. The verifiability is not in question due to the original publication being archived (see WP:DEADREF). I would like to have other editor's opinions about this. If there is no other response I will request an WP:RFC. Ward20 (talk) 20:10, 26 February 2014 (UTC)

Also, the fact that it is observed internationally makes it noteworthy to be included in the article. Ward20 (talk) 20:26, 26 February 2014 (UTC)

Yes, you're right it doesn't need a secondary source - I realised that after I made that comment. It just seemed to be lacking in importance. The ref was dead, it doesn't exist anywhere in the HHS site, and I can't find reference to it anywhere else except blogs and facebook pages. You say it is "observed internationally", but I don't see that. --sciencewatcher (talk) 21:15, 26 February 2014 (UTC)

It is a secondary source and the source link [6] meets the generally accepted standard WP:DEADREF for Verifiability. The AU Department of Health acknowledges the date [7], Canadian Institutes of Health Research acknowledges the date [8], Wales HHS [9], UK Daily Mail [10]. There are a slew of national support websites that cover the event but I didn't include those. If you want to see Niagara Falls illuminated in Blue in honor of the event in 2013 [11]. Ward20 (talk) 01:18, 27 February 2014 (UTC)

Sounds good. Those refs are a great improvement.--sciencewatcher (talk) 01:50, 27 February 2014 (UTC)

Those are better refs than I came up with in a quick search. Good job, Ward! I chose the news one for the simple fact that it's news, which I think makes a better secondary source because it's general rather than something that's specifically health-related. There are certainly arguments for using a government site too, but I didn't want to get into a CITEKILL scenario for a section that's all of two sentences long. :) Feel free to add or change the refs if you'd rather, though. I'm not strongly attached to the news ref by any means. – RobinHood70 ^talk 07:08, 27 February 2014 (UTC)

It does seem relevant to the dispute and ignorance of the disease discussed elsewhere. If there is opposition to a devoted section, could it be edited into another section? Does this Talk area have the same editing conventions as the main page and could the material be posted in here to assist debate? --Leopardtail (talk) 15:22, 27 February 2014 (UTC)

Yes that is often done on the talk page, but it is easier to put links or piped links for refs instead of a dedicated ref section. Leopardtail, you seem to be getting the hang of the talk page discussions but I just want to make sure that you understand a talk page convention is to indent once more when responding to a comment immediately above. When responding to a comment several places above, indent once to that comment's indent.Ward20 (talk) 23:54, 27 February 2014 (UTC)

fat finger no edit summary revert [12]

I removed, "disorder and symptoms are excluded that suggest a physical" because I don't believe that is stated in source. No edit summary due to hitting return accidentally. If that material is sourced please discuss or display here. Thank you. Ward20 (talk) 10:17, 26 February 2014 (UTC) The source clearly lacks the physical symptoms present in other guidelines. The fact that the guideline does not explicitly state their absence does not change that fact.

Please not that I said it excluded THE SYMPTOMS that is a absolutely correct. This is not the same as stating that it required them not to be present as such it should not have been removed without discussion in talk according to wiki guidelines. The content needs to go back in, its adds considerable clarity to the material. I am however open to alternative working to ensure no misinterpretation.— Preceding unsigned comment added by Leopardtail (talk • contribs) 13:10, 26 February 2014 ‎(UTC)

If I'm understanding you correctly, you are engaging in WP:OR, which is prohibited. You can't say that a source is lacking something unless the source actually says it (or another source says it). --sciencewatcher (talk) 16:59, 26 February 2014 (UTC)

@Leopardtail. If the intention is to describe that the Oxford criteria doesn't mandate physical symptoms that other criteria require, it requires a WP:MEDRS that states that. Jason has published many articles on definitions. You might want to see if one of his reviews includes the material you seek.Ward20 (talk) 07:30, 27 February 2014 (UTC)

@Ward20 For most readers of the Encylopedia, reading these is unwieldly but overview if needed to allow people to understand their importance. I was attempting to reference the material factually without opinion so that the overview served is purpose. This does not concern a 'medical fact' though so I am unclear why WP:MEDRS should apply? Thanks for the Jason reference, off the top of your head is there anything particular you know I should be looking for?

@sciencewatcher Up until the WP:OR reference, I had not understood what the issue was here. Point taken and I will find a suitable reference.

To separate the two issues here is there general consensus with the factual accuracy of what I wrote and is the source needed the only issue?

--Leopardtail (talk) 16:22, 27 February 2014 (UTC)

WP:MEDRS states, "biomedical information in all types", so it's not just medical facts. No, I do't have a specific article. Sorry. You might browse the sub article to see if there is more detailed information there. Ward20 (talk) 00:10, 28 February 2014 (UTC)

Acceptable Post, MEDRS Question

Hello everyone. I just made a post on the CFS page, and it was taken down due to the sources not being acceptable. All of the sources were either from textbooks or from published journals with the PubMed id included. Could someone please take a look at the post and let me know why all of the sources were deemed inadequate? And if any of the sources would be considered acceptable could you please let me know. The post was as follows:

Treating the many underlying problems present in CFS in an integrated manner using subset analysis has been shown to be beneficial. Called the SHINE protocol, treatment that includes Sleep and Hormonal support, Infections, Nutritional support and Exercise was shown to help 91% of patients, improving overall quality of life by an average 90%. [77] [78] [79] [80] Ongoing research has implicated mitochondrial and hypothalamic dysfunction as common denominators in CFS.[81] [82] [83] Increasing cellular energy production with ribose 5 gm 3 x day [84][79] [80] [85] and CoEnzyme Q10 at 200-300 mg/day [80] [79] [86] has also been shown to be helpful, with the ribose increasing energy an average of 61%. [85]

Regards. — Preceding unsigned comment added by Aloha76 (talk • contribs) 00:06, 11 July 2013 (UTC)

Hi, and welcome to wikipedia. Generally we rely on reviews for medical articles. The problem with individual studies is that the quality can be dubious (even when published in a peer-reviewed journal). If you read WP:MEDRS it will give you more information on this. --sciencewatcher (talk) 00:16, 11 July 2013 (UTC)

Here are a few tips to help you for future posts:

• Do a quick Google before adding information to see if there are any glaring concerns with it. Googling "shine protocol cfs" (without the quotes), for example, will get you this forum post as the top non-promotional result. As you will see, Teitelbaum is generally not well regarded in the CFS community, and there have been multiple concerns about his treatments.
• Also, be sure that any unexpected or grandiose claims—like helping 91% of patients improve by 90%, in this case—are backed up by multiple high-quality sources. If a treatment were actually that effective, there would almost certainly already be large sections of the article devoted to what it was and why it works so well.
• Finally, on a controversial topic such as CFS treatments, it can often be helpful to post to the talk page first before going to the effort of adding it to the article with all the formatting and citing required. If there are any issues, you'll have saved yourself a lot of time. – RobinHood70 ^talk 07:24, 11 July 2013 (UTC)

There has been a funding and editorial bias in favour of the psychosomatic view of this disease for some years. Reviews as he suggests are a notoriously poor instrument, typically using volume of published articles as a measure and paying no attention to quality. It is also a spectacularly hard disease for which to get funding if doing physically oriented research.

--Leopardtail (talk) 18:36, 25 February 2014 (UTC)

As someone with CFS, myself, I certainly won't argue the point about bias. Reviews are what they are, but they're the standard on Wikipedia. Contrary to your assertion, one of the main points in most reviews is to comment on quality, and several reviews have commented that the research quality on all sides of the debate is very low. As for Teitelbaum, you're right: "not well regarded" doesn't even begin to describe what many patients think of him. Some put great store in him, true enough, but as indicated in my previous post, Teitelbaum's reputation in the CFS community is generally not good. Many regard him as a total quack. At the very least, he certainly seems to be more intent on selling you his books and his protocol than he is on serious research into our disease.

The opinion expressed that Titelbaum is 'not well regarded' is untrue. I have had direct conversation with multiple individuals making such posts on Phoenix, not one of whom had actually received treatment from him. It is also a minority opinion. The vast majority of posters were complaining about his fees when questioned. For me the 'not well regarded' implied a majority opinion - one can't be a ME/CFS doctor without somebody thinking one's wrong.

Then perhaps this will change your mind. There are certainly some in support of Teitelbaum, as I said, and there are some that basically advocate not trusting the FDA, but say little or nothing about Teitelbaum. Nevertheless, there are more than enough posts there that refer to him as a "quack" or with similar language that it can hardle be seen as a "minority opinion". Regardless of how he's seen by anyone, however, the simple fact is that we need high-quality reviews of any treatment before posting it on this page. The SHINE protocol simply doesn't have those. – RobinHood70 ^talk 06:20, 27 February 2014 (UTC)

Robin, the German government requires MUCH higher standards than either Britain or the USA, as yet I have not gotten around to investigating their advice on CFS, I do however know a thing or two about their advice on Diabetes and Alpha-Lipoic Acid (referred to in that letter from the FDA). It is routinely used to prevent liver damage in diabetics and also for Diabetic Neuropathy. I also note positive comments from large numbers of people on that page. For me to take comments about any doctor seriously I would neither either to see 1. direct reference to the science, or 2. personal experience of treatment from him. This being the same standard I apply to all doctors and all treatments. Good to see you about, I had not noticed posts from you in a few days and worried you might be ill. — Preceding unsigned comment added by Leopardtail (talk • contribs) 00:37, 6 March 2014 (UTC)

IOM Diagnostic Criteria

Proposal to amend this section

* Centers for Disease Control and Prevention (CDC) definition (1994)—the most widely used clinical and research description of CFS, it is also called the Fukuda definition and is based on the Holmes or CDC 1988 scoring system. The 1994 criteria require the presence of four or more symptoms beyond fatigue, while the 1988 criteria require six to eight.

with additional two sentences:

On the 15th August the Department of Health and Human Services issued a notice of intent to award a contract to the Institutes of Medicine for a Study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome with the purpose of : “recommending clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)”. The award of contract was halted due concern over "potential sole source requisition" although subsequently joint funding was agreed between The Office on Women’s Health and the HHS. The IOM commenced work on the project in the Autumn of 2013 with its first public hearing listed for 27the January 2014.

refs:

https://www.fbo.gov/index?s=opportunity&mode=form&tab=core&id=fb67835096d2486592952c90cd3acee7&_cview=0

https://www.fbo.gov/index?s=opportunity&mode=form&tab=core&id=e8dcdf547b36edd9b51a36e1a16af35e&_cview=0

https://dl.dropboxusercontent.com/u/89158245/CFSAC%20Sept%2023%202013%20IOM%20announcement.pdf

http://iom.edu/~/media/Files/Activity%20Files/Disease/MECFS/Agenda27Jan14Website10Jan14.pdf

I don't think this controversial but there may be some concern re: WP:NOTNEWS , however the IOM process is significant and it will inevitably form part of the WP article at some point. My view is it belongs now because it informs the reader's understanding of the state of flux that M.E/CFS research and treatment provision is in.

In Vitro Infidelium (talk) 13:51, 16 January 2014 (UTC)

I don't think that there's much point mentioning a piece of research or consensus forming that hasn't yet led to a formal report.

At any rate, whatever the IOM is going to recommend, I am willing to place bets on the likelihood that there is going to be a conflicting set of criteria formulated by some other group sometime later. JFW | T@lk 19:12, 16 January 2014 (UTC)

It's probably notable enough for the Clinical descriptions of chronic fatigue syndrome article. Whether it's notable for this one will depend on how much acceptance or rejection it generates in WP:MEDRS sources after it's published. IMO. Ward20 (talk) 23:20, 16 January 2014 (UTC)

OK I've put it into the final section at Clinical descriptions of chronic fatigue syndrome seems to fit there OK. As far as I can see this IOM project will produce a de facto replacement of CDC/Fukada - unless the CDC were to go in for some kind of turf war with the HHS (is that even possible ?). I don't think there will be any WP:MEDRS issues because the HHS is simply going say - this is it, this is what M.E/CFS is and anyone wanting US Government research money, or Federal supported Healthcare provision is going to have to work with what the IOM comes up with.--In Vitro Infidelium (talk) 15:51, 17 January 2014 (UTC)

Should we also be noting the controversy that the IOM project has created? I know the ME/CFS activist community is up in arms about the whole thing, not only for the fact that they're starting from scratch rather than using the Canadian or International criteria, but also for the fact that in an effort to give the panel a sense of neutrality, they've effectively barred experts in the field (from both the psychological and physiological camps) from serving on the panel. (Note: that description may not be entirely accurate...I'm not an activist myself, so I don't always follow all the details closely.) – RobinHood70 ^talk 20:08, 17 January 2014 (UTC)

The only close to RS on this that I have seen is in the Huffington Post and it was in the blog section. If it gets in a major newspaper article then I would say it might be included in the controversy section. Ward20 (talk) 22:10, 17 January 2014 (UTC)

(out)I'd like to see a clear definition of what constitutes 'controversy' before adding yet more 'activist' (definition also required')grumbling. I think one has to ask "when is there not a section of the self appointed M.E spokespeople, who are not 'up in arms' ?" On a personal note I've argued on M.E/CFS forums over sveral years that there is no such thing as a single identifiable M.E/CFS 'community', nor indeed any single community of M.E or M.E/CFS 'activists'. There are patient organisations which have their own declared perspectives, my inclination is that only RS material which references identifiable organisations is worth considering for inclusion in any M.E/CFS articles. There are so many extraneous 'patient views' that making reasoned assessment is near impossible - there are whole orders of organisational animus, multitudes of pet hypotheses - vaccine causation, mold causation, mitochodrial causation, and endless contrary positions on treatments, few of which have any evidential support. What Governments and Departments of Health do, IMO is material to the CFS articles, how small groups of poorly identifiable patients receive those Public Sector initiatives is IMO, not material. --In Vitro Infidelium (talk) 00:51, 18 January 2014 (UTC)

All good points, I agree. Ward20 (talk) 05:12, 18 January 2014 (UTC)

The Doctor Patient section of this article contains materials that appertains to a tiny percentage of patients - the argument you make above would require it's removal.

This is not such thing as a single organised community in any part of CFS but an empty page would not be useful. Patient's are fragmented but have abysmal access to the media. Doctor's are fragmented and have better access. Even Government's are fragmented (Candian vs USA vs UK).

It is not the job of an Encyclopaedia to represent one interest group rather to either detail the 'dominant discourse' or in a situation like that of CFS to provide Neutral Point of View (indeed WP requires this). My POV on this is that the fuller view of conflict between interest groups should be in one place - that would more likely provide Neutral point of view. I also take the view that where this is conflict between schools of thought (physical vs psychological) it should be stated as such rather than as a conflict between social groups.

I have no view at all on the adequacy or otherwise of the panel, but should it lack proper expertise as patients suggest that is certainly significant enough to be present on either the the guidelines page or the conflicts page.

This material is unavoidable in a subject is contentious as CFS, the question is more one of 'what belongs together' and 'how much weight should it have'. My personal preference would be that the core page should present a balanced mix of the needs of the general reader, medical perspective and patient perspective.

Fair enough. In truth, I thought it was a bit more widely circulated of an issue than it seems to be. Usually an issue has to be pretty major before I'm even aware of it, but I guess this one got lucky. :) – RobinHood70 ^talk 07:25, 18 January 2014 (UTC)

The mainstream press seems to be a bit more cautious after XMRV.Ward20 (talk) 01:39, 19 January 2014 (UTC)

Just to address the point about "they've effectively barred experts in the field". No such thing has happened, the IOM has an explicit set of practices - http://nationalacademies.org/studyprocess/index.html and the CFS study is defined as a "Consensus Study: A consensus study is the result of an IOM consensus committee’s deliberations in regard to a specific request from the study’s sponsor. After discussing the issue of concern, the committee addresses those issues in a consensus report." and the IOM page on the project: http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx states that "Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients". There are various 'activists' who are outraged that their favoured 'expert' is not going to be in the IOM main mix, but no one is excluded from submitting evidence to the process, and the choice of panel members is governed by well established rules. --In Vitro Infidelium (talk) 12:08, 19 January 2014 (UTC)

I looked up the original source, and it seems I was conflating two different complaints, one about the IOM, one not. My apologies for the confusion that may have created. – RobinHood70 ^talk 18:15, 19 January 2014 (UTC)

I have checked the make-up of the IOM panel, and while there are some obvious heavyweights missing and some rather dubious inclusions without obvious relevance, I would have to conclude there is at least some CFS expertise has not been excluded from this panel. A brief mention of this controversy does seem a better compromise. — Preceding unsigned comment added by Leopardtail (talk • contribs) 21:27, 7 March 2014 (UTC)

I found a secondary WP:RS about the IOM contract. Does Chronic Fatigue Syndrome Need A New Name?, by MIRIAM E. TUCKER, NPR Health January 30, 2014 Ward20 (talk) 01:18, 18 February 2014 (UTC)

Have thrown an mad idea into the pot below - would like to hear your thoughts

This is essentially a team building exercise.

I wonder whether attempting a role play in which each editor (at the same time) attempts to play the same role selected from General Public, Patient and Medic might be helpful, perhaps doing one per day/week or similar? Doing a quick version of this I have already seen room for improvement from a GP/Doctor perspective. If we are all deliberately trying to look from the same perspective at once then finding ways that we can improve with total consensus seems more likely. If we define the purpose the page should serve for its audiences then assess the page against those purposes - perhaps that might identify what works and should be left well alone, what there is agreement might benefit from edit, and where the true contentions are.

Having looked at each perspective in turn we should then be able to 'merge requirements' that have been previously agreed for each perspective and hopefully divide the workload by section. Review it, agree it and polish it before posting.--Leopardtail (talk) 13:48, 7 March 2014 (UTC)

SPECT scans

I reverted these changes for a number of reasons:

- using primary sources rather than reviews - broken refs - should be in the pathophysiology sub-article

Perhaps the brain scans section should be expanded using info from reviews. Update: I just had a look at a few reviews, and the conclusion seems to be there is no difference between CFS patients and healthy controls (as twin studies show no difference). I guess that's why we rely on reviews rather than primary studies :) --sciencewatcher (talk) 16:20, 8 March 2014 (UTC)

1. 1 I was attempting to fix the broken references when you deleted the section. Various patterns appear not to work on this page, for example:

< ref name="PMID 7496949">((Cite pmid|7496949))</ref>

Care to show me the pattern that does work.

Second, dismissing "reviews" based on a SINGLE study involving TWO people is irrational. Some of the citations were NOT to reviews. — Preceding unsigned comment added by Lassesen (talk • contribs) 16:31, 8 March 2014 (UTC)

You misunderstand: your refs are unacceptable because they are not reviews. You should use reviews for stuff like this (see WP:MEDRS). The twin study is referenced in the major reviews on this, and it is those reviews that conclude that there is no difference. I'd suggest you read Cleare, Wyller, etc. I just went to google scholar and typed in "chronic fatigue syndrome" spect review, and set the start date to 2005. The reason we use reviews is because single studies can give misleading conclusions for a variety of reasons.

To include a ref, just click the 'cite' button, then templates->cite journal, then enter the pubmed number next to 'PMID' and click the search icon. It should then fill in all the info and you can just click Insert. --sciencewatcher (talk) 16:40, 8 March 2014 (UTC)

A single study -- where only one person is asserted to have CFS is not worth mentioning given that there is no test to confirm that he is typical of CFS patients. You need a sample size of at least 10 patients. I am shocked that you would cite such antidotial evidence. OF course, if there are no reviews but 8 different researchers reporting the same thing. Or worst yet, the reviewer is biased or unqualify -- a psychologist reviewing medical reports. They are also not qualified to review SPECT scans -- only a few people are, for example Dr. Daniel Amen who is certified in nuclear psycharistry -- who have repeatedly stated that abnormal patterns are typical for CFS and represent an inflamed brain state likely cause by some form of infection

If there are review by qualified and unbias people -- I agree that they should be used. In their absence, the best step forward is primary research which has been repeated by a multitude. — Preceding unsigned comment added by Lassesen (talk • contribs) 20:41, 8 March 2014 (UTC)

Gentlemen should you consider references to be inappropriate WP has tags for denoting them and such. If you consider that they need revision please mark them as such using those tags and open a dialogue on this page. You appear to be engaged in an edit war..--Leopardtail (talk) 16:31, 9 March 2014 (UTC)

Sources used to support health claims on Wikipedia need to conform to WP:MEDRS, our guideline for medical sourcing. The vast majority of sources you are using are primary sources, which are generally not used for medical claims. Please find high quality secondary sources, and stop trying to introduce material based on primary studies. Yobol (talk) 16:33, 9 March 2014 (UTC)

DANGER WILL ROBINSON - the hyper-active editors on this page has a mission!

They have stated in talk; "myself and Rob's interest in the article is to help fellow CFS patients by giving them good information about the science of CFS. "

• They are cognitive impaired editors (by admitting their also have CFS) - can we get some editors with full cognitive facilities involved?
• They are editing this article for what they think will help CFS Patients
• "Good information" is a moral judgement. Accurate is the term that a scientist would be concerned about

I disagree about their take onnCBT -- because there are THREE treatment approaches that each have 50-80% effectiveness of full remission. Those results have been reported by different MDs trying each protocol (for example, the Rickettsia been confirmed by MDs in South Africa, France and Australia). The problem appears to be no review or attempts to replicate them (likely because each is not POLITICALLY INCORRECT to attempt to confirm): The Rickettsia Protocol originating in the Pasteur Institute (why: Long term rotating antibiotics is a No No), Hemex Protocol (why: low grade coagulation events is not a concern to hematologists, and MDs are terrified of heparin and warafin), and Fecal Transplants (MDs do not want to get into Shit -literally). What is being re-enforced is what almost killed my father "Ulcers is a psychological condition" that took 40 years from solid evidence (high success rate) until the first review articles. If your intent is to condemn every Cfs patient to the same malpractise -- you are doing excellent work. Remember that in the developed world, the 4th leading cause of death is medical mistakes. Personally, I find it morally abhorrent, almost as nice as newspapers describing how nice the Jewish resettlement camps were in the late 1930's.

• Surely "It has been reported that 50-70% of fecal transplants result in remission (no replication studies have been done yet)" would be a lot more truthful reporting. The same apply to all three treatments that result in full remission.

Lassesen (talk) 15:53, 9 March 2014 (UTC)

That's a bit rich coming from someone who has admitted on their blog that you have CFS. It's also insulting to say I'm cognitively impaired. I'll leave it to editors to decide for themselves who is impaired. Anyway, I think this discussion is over. I've certainly learned quite a bit from it myself. --sciencewatcher (talk) 16:00, 9 March 2014 (UTC)

@User sciencewatcher the comment above was particularly inappropriate in page about that very condition. Further the cognitive impairments suffered by patients with ME (or CFS) are dominantly in the form of stamina limiting the time faculties are available - they are not reductions of core intelligence. Persons with CFS (Robin included) have every right to participate and enjoy a supportive dialogue. I ask you to use the WP convention of inserting a comment [inflammatory comment removed with apologies]. Please see my note regarding 'dubious references'.

@User Lassesen, would you please modify your comment to state 'intent of the article' rather than any individual thus assuming good faith? The other editors on this page should know how to add a 'dubious reference' tag where they feel discussion is necessary - I have made a request on this page that such be done. This will give all involved the opportunity to flag the disagreement to readers until we can debate a compromise. I ask that those tags be left in place while we discuss.

This seems like best compromise and a good way to put a stop to edit warring on this page. --Leopardtail (talk) 16:39, 9 March 2014 (UTC)

Lassesen has immediately violated Godwin's law with his resettlement camps comment.

The low-grade edit war of the last few days has been most unproductive, and I have applied for full protection so we can work out some sort of consensus.[13] JFW | T@lk 17:45, 9 March 2014 (UTC)

Just to clarify the statement above that I'm mentioned in, yes, I do have ME and/or CFS (I make no judgements as to whether it's one or the other, or whether they're the same or different conditions...I don't think the science is there yet, though my gut instinct says that it's several conditions, not just one or two). To the best of my knowledge, I'm the only current editor on the article who has it, though a couple of others have some association with it, whether it's a family member who has it, a remitted case of it, or whatever else. Because my cognitive skills are limited, especially when it comes to information gathering, I leave it to others to focus on doing that. I may express opinions, or revert if I think something was added prematurely, but for the most part, my edits to the article involve simple things like grammar, spelling, and wiki formatting...things that I know well and that are usually uncontentious.

Leopardtail does have a point, though. Cognitive impairments in CFS usually do not have a direct effect on intelligence and the underlying skillset. Just to give you a better idea of what it's like from a patient's perspective, I can tell you that I'm still a pretty good programmer, and I do it regularly because it's something I've enjoyed since I was a kid. Learning new aspects is challenging, as is focussing on what I'm doing and to a lesser extent, remembering what I did yesterday—but the skill itself is still there. Just as when I wasn't cognitively impaired, I'm still a better programmer than many who've been doing it their whole lives, but nowhere near as good as those who have "the gift". The only real difference now is that it takes me a lot longer to learn and do anything, and I make more mistakes, especially when it's something challenging or I've been at it for more than an hour or two. If I'd been an information researcher before instead of a programmer, I'd probably be adding a lot more to the article. That was never my strong suit, though.

Sciencewatcher and I disagree on a great number of things. I think our last conversation about treatments and etiology probably involved some profanities, and I know it involved unfriending (maybe even blocking) on Facebook, though I don't remember the specifics. What we do agree on, however, is Wikipedia's method: you want to make a claim? Prove it! Don't edit an article based on one doctor's theories or initial testing, edit it based on broad reviews of the science at hand. Unfortunately, much of that has been psychologically based/biased in the past, but that's definitely changing. Due to the scarcity of research funding, however, that change is slow, and it's going to take a lot more time before the Wikipedia article can present the psychology and physiology with any certainty. – RobinHood70 ^talk 00:30, 10 March 2014 (UTC)

Minor edit request

Would someone please restore the "it" removed in this edit? --Anthonyhcole (talk · contribs · email) 23:41, 9 March 2014 (UTC)

Agreed. It's understandable either way, but without the "it", it makes it sound like the etiology itself might have multiple causes, which doesn't quite work. (An etiology is a cause, it doesn't have one.) – RobinHood70 ^talk 00:40, 10 March 2014 (UTC)

Done — Mr. Stradivarius ^{♪ talk ♪} 00:49, 10 March 2014 (UTC)

Thank you Mr Stradivarius. --Anthonyhcole (talk · contribs · email) 08:37, 10 March 2014 (UTC)

Placebo Effect

The wiki guidelines relating to Medicine require that medical material be factual - this was not entirely. This is part opinion. The edit simply chose a different selection point for the extract and perfectly preserved the factual content. I stand by the edit. Guidelines that apply to material you disagree with must also apply to material you post. — Preceding unsigned comment added by Leopardtail (talk • contribs) 13:15, 26 February 2014 (UTC)

The claim is based on a source that meets the criteria outlined in WP:MEDRS. This may be part of the authors' interpretation of the results, which is often a matter of opinion yet is usually relevant enough to discuss.

I would encourage you not to revert repeatedly. WP:BRD is worth reading - once something has been reverted by another editor you should start a discussion (as indeed you did) but without reverting again to "your" version. I have warned you about repeated reversion before. JFW | T@lk 13:41, 26 February 2014 (UTC)

WP:BRD States that you should open a bold discussion before reverting content in the the first place. The manner in which certain users are reverting pages when they should not then expecting others to follow the procedure they did not has had the effect of driving multiple editors away from this page. This page has multiple violations of NPOV - I will post the items here or discussion in 'one section at once' having thoroughly reviewed them. — Preceding unsigned comment added by Leopardtail (talk • contribs) 15:48, 26 February 2014 (UTC)

Actually, saying it is "patient expectations" is not opinion. It has been very well demonstrated that the placebo effect does depend on patient expectations. --sciencewatcher (talk) 15:50, 26 February 2014 (UTC)

The placebo effect as you indicate is widely understood.

The low placebo effect is statistically provable and therefore likely to be solid science.

The author assumes that patients have negative expectations of therapy and engage in it despite them. The paucity of access and simple human behaviour both makes this assumption unlikely unless the researcher(s) established that expectation in the subjects prior to any study. Could you find such evidence?

The reason for the low placebo effect is the opinion of the scientist involved.

Tight bonding of the proven with the hypothesis gives the hypothetical part 'undue weight' to all but the most expert reader.

If this part is present I would prefer something such as: "The researcher further implies that ...." I realise there are countless other ways to word this.

This part does constitute a medical claim in a well researched area hence my view that it must be quite solid. --Leopardtail (talk) 15:26, 27 February 2014 (UTC)

If you actually read the study (and not just the conclusion) you'll see that they reference the fact that expectations affect the placebo effect. --sciencewatcher (talk) 18:47, 27 February 2014 (UTC)

ScienceWatcher, you miss the point I made above - that being that the assumption that patients would take part in therapy they expect not to work. That is my first issue. The second is that the original studies do not seem to have demonstrated this summary hence it has gone beyond the scope of a 'review' or 'secondary study'. Had this point been supported by multiple original studies that would be a different matter. Be aware too that rather than insist on either the removal of the study, or the removal of the point I am actually trying very hard to compromise here, retain the content and present it in a way that retained neutral point of view. --Leopardtail (talk) 20:45, 6 March 2014 (UTC)

Leopardtail you seem to be discussing a change from the present wording " perhaps due to patient expectations" to something like "The researcher further implies the result was due to patient expectations", the object being separation of the statistical results from the researchers conclusions or opinions. A change like that seems to me to be somewhat of a point of view when all the study results (except possibly the raw data) and opinions are actually the conclusions of the authors. At wikipedia we rely on the peer review process of the publication to determine that study results and conclusions are reasonable (not always a great thing but it is what it is). That is why the impact factor or reputation of the publication is used (ideally) to argue what is the best material for the article. When editors start discussing how to weight different parts of a study, that is usually when endless discussions start due to different POV's of editors. Sometimes it has to be done, and reasonable editors are usually able to come to WP:consensus sometimes using WP:dispute resolution. Sorry if you already understand this. Anyway, I just wanted to throw in my 2 cents. Ward20 (talk) 23:50, 27 February 2014 (UTC)

@Ward20 The point I am making here is that all studies reference other studies. What makes a secondary study arguably more reliable is that it should provide an independent evaluation of the method, data and conclusion of multiple studies and provide a potted analysis of repeatability. I accept that value. Whilst the wording may not be statistical and in may indeed involve worded conclusions, it is essentially a statistical process. If for example the majority of the studies report poor placebo response then reporting that fact in analysis makes it a good normal practice in a secondary study - the 'weight of repetition' produces something closer to a theory than a hypothesis. This being the whole point of being secondary.--Leopardtail (talk) 01:26, 6 March 2014 (UTC)

If however wild hypotheses are stated that are not directly derived from the primary studies (such as the cause of the poor placebo effect) then it ceases to be a summary of the primary research, as such it becomes primary research rather than secondary research. A similar study by Bagnall et al for example draws no such conclusions that are not supported by data. Unless this statement is directly supported by the primary sources (as appears to be the case) it is perilously close to becoming a primary source. Have you been able to find any such support for this conclusion that I have missed?--Leopardtail (talk) 01:26, 6 March 2014 (UTC)

I am somewhat confused by your point regarding 'peer review' - primary sources are peer reviewed yet often regarded as unreliable - it is the meta analysis of the content of primary studies that adds to the reliability in secondary as I understand it.--Leopardtail (talk) 01:26, 6 March 2014 (UTC)

Leopardtail, I agree with the logic in your argument, I hope our differences are in the semantics. It is convention on Wikipedia that it is difficult and actually discouraged that editors substitute their own judgements about the quality of study conclusions by self evaluation of study content. There would be no way to keep editors from discarding studies that do not represent their own POV. The quality of a reference and its content on wikipedia is determined by the reputation or impact factor of the publication, as well as the citation number of an article by other publications. Editors do not do their own peer review of studies to determine if study conclusions are consistent with the study data or other study data. The last paragraph of WP:MEDASSESS states this.There are exceptions when source material is so outrageous that WP:IAR is appropriate but that is rare.Ward20 (talk) 18:04, 6 March 2014 (UTC)

If you believe strongly that there is better wording for "perhaps due to patient expectations" that will improve the article, submit it here on the talk page and request a WP:RFC if there is not enough discussion to initially form a consensus. This is the conventional way forward to resolve these types of issues. Ward20 (talk) 18:29, 6 March 2014 (UTC)

Ward20 - I would prefer to avoid anything as strong as IAR, my view is that we can work with the rules to resolve this. The rules require that we make statements and back them up with references not that we always quote directly. The compromise I suggested allows this to be included usefully rather than treat as a primary study. I was beginning to think and RFC may become necessary on this issue.

Well, put the exact wording on the talk page for discussion to see what people think. There are other editors that watchlist this article and they may comment on a concrete proposal. There may be no need for an RFC if enough consensus develops. Ward20 (talk) 21:41, 6 March 2014 (UTC)

Expectation is an important component to the placebo response, so I don't think it is a big deal to say that lower expectations may result in a decreased placebo response, but the authors are still speculating when they say this phenomenon is the reason for their findings, since expectations were not systematically analyzed. Leopardtail asks, why would patients do a course of therapy if they think it will not work? I don't think it is that black and white, as Cho et al. say lower expectations, not zero expectations. Not to mention that CBT/GET may be all that is offered to patients. The wording in the CFS Treatment and Placebo articles go into further detail about the authors' discussion speculation.

The problem is when placebo studies assume all the changes to the outcome measures were due to the placebo, without any consideration for natural course and reporting bias. There has not been any decent placebo-controlled trials on CBT/GET. One weakness of the review in question above is what was regarded as a 'behavioural placebo' for the CBT/GET trials. These 'placebos' were usually interventions such as relaxation or stretching or support groups. IIRC, a few of the 'placebo' arms in the reviewed CBT studies were merely no treatment groups or very close to it, so not surprising that the 'placebo' response in these trials was poorer compared to the oral or injected placebos in other trials which tested drugs expected to work. In at least one of the reviewed studies, CBT was tested against an oral placebo for an immune modulator and failed to show an advantage. The CBT/GET studies were often of relatively poor quality, and this review suffers from a degree of GIGO.

The practice of CBT/GET could technically meet the definition of 'placebo' mentioned in the review: "any therapeutic procedure which has an effect on a patient, symptom, syndrome or disease, but which is objectively without specific activity for the condition being treated". CBT/GET trials usually show a somewhat higher proportion in the CBT/GET groups feeling somewhat better, or at least their answers on questionnaires tend to improve somewhat, but the objective measures tend not to show equivalent improvements, so any clinical benefit of CBT/GET is largely or entirely subjective. In the last Cochrane systematic review on the subject (2008, update pending), there was no significant effect for the CBT group when compared with the waiting list condition, and the authors suggested that being on the waiting list may have a 'holding' positive influence which decreases the apparent effect of CBT. - Tekaphor (TALK) 02:53, 13 March 2014 (UTC)

social science perspective edit. [14]

The edit is referenced on this one paper. The edit seems to have cherry picked some phrases and altered the meaning of the authors article. I agree with the description and reversion by RobinHood70. Ward20 (talk) 06:31, 23 March 2014 (UTC)

"The Delegitimation of Illness Experience in Chronic Fatigue Syndrome"

"The Delegitimation of Illness Experience in Chronic Fatigue Syndrome" is a worthwhile topic not covered well in the article. But the 1992 citation is outdated in several ways. Look for newer review articles that cite the 1992 article for material, and articles that cite those. [15] Ward20 (talk) 06:41, 26 March 2014 (UTC)

A Narrative Review of the Impact of Disbelief in Chronic Pain which discusses Ware's work on CFS. Ward20 (talk) 07:01, 26 March 2014 (UTC)

More information The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review. Ward20 (talk) 07:26, 26 March 2014 (UTC)

CPET testing in CFS

It's often said that there are no objective quantitative markers that can distinguish between CFS and other conditions, and much of the controversy seems to come from there. However there are several studies claiming that repeated cardiopulmonary exercise testing (CPET) can accurately distinguish CFS patients from sedentary controls (or patients with other severe chronic illnesses). This testing relies on objective measurements (of atmospheric gases as measure of metabolism). Even if at this time it doesn't constitute a specific test for CFS, it should at least be mentioned. A list of relevant links can be found at http://www.workwellfoundation.org/research-and-latest-news/ — Preceding unsigned comment added by 93.34.10.105 (talk) 16:51, 22 April 2014 (UTC)

Some research here and here. --sciencewatcher (talk) 17:04, 22 April 2014 (UTC)

An independent confirmation of the CPET findings: http://www.translational-medicine.com/content/pdf/1479-5876-12-104.pdf So now all we need are secondary sources and articles discussing the CPET findings. — Preceding unsigned comment added by 93.33.242.191 (talk) 07:09, 23 April 2014 (UTC)

It's also worth noting that Social Security Ruling, SSR 14-1p; Titles II and XVI: Evaluating Claims Involving Chronic Fatigue Syndrome (CFS) accepts abnoral exercise test results as evidence for a MDI (which I believe stands for medically determined impairment). — Preceding unsigned comment added by 93.34.10.105 (talk) 17:11, 22 April 2014 (UTC)

Editors needed on treatment page

See the edit logs and talk page. --sciencewatcher (talk) 18:32, 8 May 2014 (UTC)

Anyone got the full-text for Cleare 2012?

I'm having trouble finding a free full-text version of this. If anyone has access to the full-text I would appreciate it. PS, this is perfectly legal under fair use. --sciencewatcher (talk) 16:03, 29 April 2014 (UTC)

Got it (from one of the authors) - thanks. I'll update the pathophysiology article. Also it may be worth adding some info about the HPA axis to the main article, due to the growing body of evidence pointing towards HPA axis changes in CFS patients. --sciencewatcher (talk) 00:39, 12 May 2014 (UTC)

IOM article

Not sure if this raises to the point of being included yet but it appears to be the most notable concerning the new definition project. I'm mainly putting it here for future reference. Scientific American, "Baffling Chronic Fatigue Syndrome Set for Diagnostic Overhaul". [16] Ward20 (talk) 22:20, 17 May 2014 (UTC)

Dr Patient Relations

This section is partisan and lacks Neutral Point of view. When compared with the sources it gives an exaggerated view of the conflict between patients and doctors. This is particularly the case when the audio files from the BBC report are listened to. It is clearly stated in those interviews that this issues revolves around a tiny minority of patients. The failure to state this in the article gives 'undue weight'.

The article as a whole also fails to make a few key points that 'paint the full picture'.

1. Simon Wessley and Esther Crawley were key players in the committee criticized by Dr Ian Gibson's enquiry into biased funding towards psychiatric research. Much of the funding of that 'almost entirely' psychiatric panel was aware to members of that panel. This is a key aspect of the relationship between these two individuals and patients in general. This section lacks journalistic integrity by omitting this key information - since it is the imbalance in those awards are the primary focus for criticism/outrage.
2. Myra McClure sourced the patient for her XMRV study from Simon Wessley who discluded patients suffering common physical symptoms of ME such as Orthostatic Intolerance - thus again there was particular reason for outrage.
3. If fails to mention that those taking a psychological view of the disease regularly attack researchers taking a physical view of the disease denouncing them as 'activists' or 'quacks'. There are numerous letters supporting this assertion in the lancet and BMJ.
4. If also fails to mention the groundless complaints made against doctor Sarah Myhill in some cases relating to life saving actions. It also fails to indicate that the committee 'judging' her conduct contained one person with close professionals affiliations to one of the false complainants. This material is all public record available with a freedom of information request from the British Medical Council.

I am curious why this source of this and some other comments is not listed by the site. Anyone know why and who wrote them?JustinReilly (talk) 05:49, 20 May 2014 (UTC)

Leopardtail didn't sign the post. [17] Ward20 (talk) 07:12, 20 May 2014 (UTC)

Thanks, Ward20.JustinReilly (talk) 20:53, 25 May 2014 (UTC)

Treatment Section

This should be a simple one paragraph introduction that gives not particular weight to any form of treatment. The view the CBT/GET are at all effective is far from universal and strongly disputed yet they are the only treatments shown here. This violates forking rules in WP:NPOV.

The needs to be simplified to something such as:

There is neither any no current treatment for CFS that provides full recovery, nor any treatment that universally provides significant improvement. Which treatments are or are not effective is the subject of vigorous debate and is covered fully in <link here>. Researched methods include a wide variety of behavioural methodologies, nutritional supplements and pharmacological treatments. Some aim to deal with hypothesised causes of the disease, others aim purely to produce symptomatic improvements. — Preceding unsigned comment added by Leopardtail (talk • contribs) 13:47, 11 May 2014 (UTC)

Actually, there are multiple reviews that say CBT and GET are effective, so we have to say that. --sciencewatcher (talk) 16:02, 11 May 2014 (UTC)

Hi Leopardtail. Please remember to add ~~~~ at the end of your comment everytime you post on talkpages. I agree with you that more could be said about other treatments, if a reliable source can back it up, but Sciencewatcher is correct that we have to give most weight to CBT and GET. Wikipedia reflects the published literature, even if that literature is dubious, Wikipedia is not about the truth.

Treatment research is generally regarded as poor without blinding or placebo control. As Sciencewatcher stated on his talkpage in relation to some study, "there was no placebo arm, so the results are pretty much useless". CBT and GET have the unfair advantage of getting a free pass from this requirement. The evidence base for CBT and GET would disappear if it was held up to the same standards as biological research.

While there are many reviews purporting that CBT and GET are effective and we must include that, there are also plenty of sources showing no substantial objective improvements. Some of this is already covered in the treatments article. You might find some useful information in the following papers, but not enough research has been done, and the available evidence is generally poor, inconsistent, or not replicated.

http://www.ncbi.nlm.nih.gov/pubmed/19619330

http://www.ncbi.nlm.nih.gov/pubmed/22059223

http://www.ncbi.nlm.nih.gov/pubmed/19821361

http://www.ncbi.nlm.nih.gov/pubmed/21982120

http://www.ncbi.nlm.nih.gov/pubmed/21615974

If you can find a source that is acceptable to WP:RULES rules for the debate about which treatments are effective or not, it should go in the article too with the appropriate weight. I'm currently looking into a new potentially useful paper which critically discusses the debate about recovery from CFS. - Tekaphor (TALK) 03:11, 15 May 2014 (UTC)

Basically we just parrot out what the reviews say (as I think Tekaphor mentioned before). In regard to placebo: for something like CBT you could say it is entirely placebo. Also for CBT and GET you can't really pretend that you're doing exercise or getting therapy when you're not. The best you can do is compare to other treatments to see if it is better. In my own opinion (which is worth squat on wikipedia) CBT probably works for reasons other than those given by its proponents. --sciencewatcher (talk) 14:46, 15 May 2014 (UTC)

The CBT section is large because of the large body of literature about it. WP has to explain the positives and negatives published according to the proportion of the MEDRS articles. There is some bloat in the section though, and some parts could be more clearly written. Ward20 (talk) 22:34, 17 May 2014 (UTC)

I am concerned that many of the sources added by Tekaphor are not WP:MEDRS compatible. PMID 22059223, for instance, is just a survey and we cannot justify including it just to spell out that there's no evidence for pharmacotherapy. A claim like that should be supported by a high-quality secondary source. The moment we start compromising on that, we're back to anecdotal evidence warfare. JFW | T@lk 09:48, 25 May 2014 (UTC)

I casually mentioned 5 sources in the above discussion, 3 of which were systematic reviews. I merely suggested that these may be useful to Leopardtail's investigation, and reminded them of WP:RULES.

Regarding my article edit involving PMID 22059223 which JFW reverted for being "just a survey", the authors also reviewed 20 RCTs from biomedical databases and described the results in Table 4. Maybe not the best source, but no one said "there's no evidence for pharmacotherapy", the paper used the phrase paucity of RCTs, which means insufficient research. Maybe some of the other treatment reviews say something similar.

If my other article edits about recovery from CFS are called into question instead of the conversation above, those statements are based on the conclusions of WP:MEDRS-compatible recent systematic reviews of the literature, are among the best sources available on the subject, and apparently reflect the current consensus achieved at the CFS treatment article talkpage.

Overall, not really a justifiable "concern" about me adding "many" (hyperbole much?) WP:MEDRS incompatible sources to Wikipedia. - Tekaphor (TALK) 00:49, 26 May 2014 (UTC)

The treatment section is a mess. It emphasizes CBT/GET too much compared to various official guidelines. CBT/GET is barely mentioned on the CDC's CFS page for example, yet here it's 90% of the treatment section. There is also no evidence that psychological interventions can correct the biological abnormalities commonly found in CFS. CBT/GET may be appropriate for some patients suffering from fatigue. Te notion that they can cure physical illness is ridiculous, but that's exactly the impression given here. 93.34.1.54 (talk) 14:38, 6 June 2014 (UTC)

Classification

A newer editor added some material on the ICC definiton to the lead. There were no WP:MEDRS secondary sources cited and the material was removed. I have no issues with that. However, It got me thinking. The CCC and ICC definitions have been out for a while, chances are good there are secondary sources that discuss the utility (or not) of the newest definitions. The information might be useful in the classification section. Ward20 (talk) 01:40, 4 October 2014 (UTC)

Who is going to look for those sources? JFW | T@lk 21:08, 7 October 2014 (UTC)

Whoever gets to it first I guess. I haven't been as active lately, but I've got it on my to do list. I'll probably list sources on here first that I find and then come back later to add the material. Help welcomed from anywhere of course. Ward20 (talk) 17:13, 8 October 2014 (UTC)

Links to classification reviews:

Draft: For use "if and when" published by a high impact journal. Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Contrasting Case Definitions: The ME International Consensus Criteria vs. the Fukuda et al. CFS Criteria [18]

Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review [19]

Ward20 (talk) 22:48, 14 October 2014 (UTC), list revised 19:39, 2 December 2014‎ Ward20 (talk)

Suddenly we have an addition[20] that states that the ICC don't require 6 months for diagnosis. There is no other discussion of the ICC so I don't think readers will find this very useful. JFW | T@lk 13:08, 21 October 2014 (UTC)

LA County Hospital and Royal Free excluded?

I'm curious in the recent edits how LA County Hospital and the Royal Free group are excluded from the definition of CFS. My first question is: which definition? And then the obvious second question is: what is it in that definition that excludes these groups? – RobinHood70 ^talk 14:03, 14 June 2014 (UTC)

I think it's only neurological ILLNESSES that it excludes. It's well established that CFS (and even depression) has neurological signs. It seems to be WP:OR. Also there are issues of WP:COI here. --sciencewatcher (talk) 14:55, 14 June 2014 (UTC)

Also, as Rob points out the mecrit2014 ref is not a reliable source - see WP:MEDRS. --sciencewatcher (talk) 14:58, 14 June 2014 (UTC)

Then why is Myalgic Encephalomyelitis included when the WHO classes it as neurological? Kezzareece (talk) — Preceding undated comment added 14:47, 10 December 2014 (UTC)

Because nobody really agrees on what it is. The neurological classification is just that - a classification. Most scientists agree that ME is not a valid etiology, and even the scientist who coined the term ME noted back in the 1950s about criticism about the etiology. See https://en.wikipedia.org/wiki/Alternative_names_for_chronic_fatigue_syndrome#Myalgic_encephalomyelitis. --sciencewatcher (talk) 17:26, 10 December 2014 (UTC)

Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

Just highlighting the current process which will produce a definitive report some time in 2015 - March, April, May ???

A draft statement is out for consultation: https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf and background material is located here - https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs. Seems likely that the final report will form an appropriate source for the CFS article, so editors might want to start considering where things might fit. It's not clear how much of the draft report will be altered but it is unlikely that the main thrust of the document will change. --In Vitro Infidelium (talk) 17:10, 27 December 2014 (UTC)

Thanks for the heads-up. Shall we await the full publication then? JFW | T@lk 22:49, 27 December 2014 (UTC)

Only the final document would meet WP:RS but editors might want to use the draft to explore what changes could be necessary once the final doc is released. On the face of it, given that this is an NIH document a wide range of edits could be required, mostly I think additions but I'm unclear about that, I've only just finished reading the document and haven't begun any systematic approach to applying to WP articles. --In Vitro Infidelium (talk) 10:29, 29 December 2014 (UTC)

Also pending with a publication date of 10th February 2015 - Public Release of the Report by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - See more at: http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2015-FEB-10.aspx#sthash.9AJRsk57.dpuf

--In Vitro Infidelium (talk) 15:11, 12 January 2015 (UTC)

Singling out HPA axis abnormalities is not NPOV

HPA axis abnormalities are not a key or main feature of CFS and therefor it is not NPOV to emphasize them over all the other abnormalities. See the Canadian Consensus Criteria and the International Consensus Criteria. Besides, we have a dedicated article on pathophysiology. 93.34.1.151 (talk) 09:20, 7 June 2014 (UTC)

Speaking of pathophysiology, the article should mention that many cases of CFS begin with an infection. This is something all agree on. 93.34.1.151 (talk) 09:23, 7 June 2014 (UTC)

If by "infection", you mean "illness", it's already mentioned at Chronic fatigue syndrome#Onset. I'm not aware anything that highlights infection itself as commonly triggering onset. – RobinHood70 ^talk 09:45, 7 June 2014 (UTC)

There are many sources for this. Here for example "a large percentage of CFS patients note an acute infectious event that triggers their fatigue." Or here "Initial infection was reported by 77% [of CFS patients]." Another source "A majority of CFS patients (80%) had an acute infectious onset" — Preceding unsigned comment added by 93.34.1.151 (talk) 10:10, 7 June 2014 (UTC)

My only concern there is that the variations of "acute infection" those sources use could all just be using a broader term for "flu-like illness". Still, I don't think it would hurt the article in any way to make a similar change on our end. Anybody else see any concerns with that? (I'm not commenting on the HPA Axis issue, since I'm not well-versed on that.) – RobinHood70 ^talk 13:50, 7 June 2014 (UTC)

We already mention infections in the 'Onset' section. HPA axis abnormalities do seem to be 'key' and 'main' important features according to the reviews - that is why I added it. The pathophysiology article is a more detailed version of the section in this article, so this article should summarise all the important pathophysiology. According to the recent reviews such as Cleare, the HPA axis does seem to be important and notable. Your assertion that the ICC and CCC are the 'best sources available' is not correct. Well cited reviews in high impact journals are the best sources for wikipedia. I'd recommend you read all the reviews such as Cleare (as well as the other ones we use) before making any edits. --sciencewatcher (talk) 15:18, 7 June 2014 (UTC)

"HPA axis abnormalities do seem to be 'key' and 'main' features according to the reviews." Which reviews? The Cleare paper says no such thing. It says that they are present (which is old news) and that they should be investigated further. Trying to present them as the most important abnormality is POV pushing. They are one of several abnormalities and definitely not generally considered the most important one. See for example this review http://journal.nzma.org.nz/journal/118-1227/1780/ If you believe otherwise, provide reviews that clearly say it is the most important feature. 93.34.1.151 (talk) 17:23, 7 June 2014 (UTC)

My edit doesn't say they are 'the most important feature' or anything like that. Just important enough to justify a bit of space in the main article. It was you who said 'key' and 'main', not me. That review you gave summarises it pretty nicely, although there are better reviews (more cited) that we already use. We can perhaps add short sections about immune and ANS dysfunction as well. --sciencewatcher (talk) 17:38, 7 June 2014 (UTC)

"Just important enough to justify a bit of space in the main article." this implies more important the others, which is completely false. It's POV pushing, plain and simple. We have a dedicated pathophysiology page, there is no need to repeat information, nor is it justified to emphasize one particular abnormality. 93.34.1.151 (talk) 17:42, 7 June 2014 (UTC)

We should be summarising the main points here in this article. The patho article doesn't replace this article - we still have a section in the main article, and it should be a short summary of the patho article. I'd be interested in hearing the views of the other editors. --sciencewatcher (talk) 18:03, 7 June 2014 (UTC)

IIRC, several of the earlier reviews showed that roughly half of the studies did not find HPA axis abnormalities. Does the new review discuss this issue? Tekaphor (TALK) 05:35, 13 June 2014 (UTC)

The evidence seems to be a lot stronger in this review, hence the reason to add it to the main article. I think the main point is that simply measuring cortisol itself isn't very useful. More useful is cortisol awakening response and HPA axis challenge, e.g. "three large studies using the CAR test all found blunted or attenuated saliva cortisol responses in patients with CFS compared with controls." and "Three new in vivo studies published in the past 8 years have lent further support to the presence of enhanced negative feedback and glucocorticoid receptor function". --sciencewatcher (talk) 16:11, 13 June 2014 (UTC)

Expanding pathophysiology section

I think the best solution might be to expand the pathophysiology section. If you look at the article it is much shorter than other sections (e.g. treatment). I was thinking of looking into the ANS and immune system and updating those sections in the pathophysiology article with the latest reviews, and perhaps adding some info to the main article. However I don't really have time and there are other articles in more need of attention than this one right now. Also there don't seem to be any new recent reviews. The main reason I updated the HPA axis info was because of the new review from Cleare. If someone wants to update the article, go for it. --sciencewatcher (talk) 22:31, 7 June 2014 (UTC)

A 2014 review would seem to have something useful for additions to the pathophysiology section http://www.ncbi.nlm.nih.gov/pubmed/24974723 full text: http://www.medizin.uni-tuebingen.de/transfusionsmedizin/institut/eir/content/2014/94/article.pdf notably this the first element of which is expressly replicated -

Taken together, moderate evidence suggests that CFS patients, compared to healthy controls, respond to strenuous exercise with a slow (not earlier than 6 hours post-exercise) but stronger increase in blood complement C4a split product levels. Importantly, these alterations appear of clinical importance as two independent studies have confirmed the relationship between altered complement response and post-exertional malaise in patients with CFS. Findings such as altered eosinophilic cationic protein response to exercise in CFS require replication.

--In Vitro Infidelium (talk) 13:32, 30 January 2015 (UTC)

In Vitro Infidelium It might be a secondary source but it's in a small journal and the reviewers point out that the findings have been confirmed by a single laboratory. I'm having a deja vu of the XMRV saga. It doesn't sound like a great finding to include. We also know very little about similar findings in other groups (e.g. those who are deconditioned and/or fatigued because of other medical problems, e.g. primary biliary cirrhosis). It should be hypothesis-generating at best. JFW | T@lk 21:47, 1 February 2015 (UTC)

I think you've misread the quoted text - while the other conclusions in the review are each related to single sources, the post exercise data is replicated. The source appears to meet MEDRS.

--In Vitro Infidelium (talk) 13:04, 13 February 2015 (UTC)

IOM report

... is out http://www.iom.edu/Reports/2015/ME-CFS.aspx JFW | T@lk 22:29, 10 February 2015 (UTC)

....Download is here: http://www.nap.edu/download.php?record_id=19012 free in advance of publication. This document proposes radical changes, including a new name SEID Systemic Exertional Intollerance Disease. --In Vitro Infidelium (talk) 10:31, 11 February 2015 (UTC)

It is my understanding this report is a recommendation to HHS at this point. I believe big changes to the article based on this recommendation is premature. The press is running with the story but who knows what will be implemented. Ward20 (talk) 22:25, 12 February 2015 (UTC)

Yes this tricky because HHS hasn't indicated how it will respond, there's also the P2P report which needs to be factored in. It will also be the case that if HHS does accept the IOM report in full, then different names will be in use matched to differing criteria, my feeling is that in that case SEID would require its own article, leaving CFS largely as it is but noting that in the US it is of historical relevance only. --In Vitro Infidelium (talk) 13:17, 13 February 2015 (UTC)

History: Needs a bit of condensing now perhaps?

History: Given the time that has passed now, its probably time to condense some of the material relating to the xmrv controversy, particularly material relating to individual persons involved. — Preceding unsigned comment added by Wilshica (talk • contribs) 01:04, 12 February 2015 (UTC)

Sounds reasonable to me. Ward20 (talk) 22:26, 12 February 2015 (UTC)

I'd prefer a major pruning. The section should start with 1969 referenced to Ramsay 1955, and then be edited to remove all the subsequently dated newsy and speculative stuff. Starting at 1934 requires a post hoc assessment by Ramsay without any contempory (to 1934) observer critiquing Ramsay. 1969 to ICD-10 (ICD-11 to be added subsequently) provides an identifiable nosological timeline, but back projecting from ICD-10 to 1934, which is what the current history section does, stretches credibility and looks OR to me. Essentially what would be left would be a single paragraph to which would be added the IOM SEID proposal - and any subsequent aceptance or rejection by the HHS. XMRV was never anything to do with CFS other than that a single institute with no background in CFS work claimed that XMRV was CFS related. Researcher harrassment (I'm convinced it happened) remains alledged and hardly befits an encyclopaedia, unless supported by strong legal demonstration of occurence - prosecutions etc. XMRV derves its own article but has no more to do with CFS than the common cold or ebola.

--In Vitro Infidelium (talk) 13:47, 13 February 2015 (UTC)

I've just ordered Ramsay's Myalgic encephalomyelitis and postviral fatigue states. ref 104 to see how it supports 1934, and then I will do a literature search to see if there is a secondary source to support that particular material. Ward20 (talk) 19:17, 14 February 2015 (UTC)

I don't have a copy and it's years since I read Ramsay, I'm not even sure now what Ramsay wrote (if anything) about 1934. Hyde in his book Missed Diagnoses states he talked to physicians involved in 1934,(a search on "chronic fatigue syndrome 1934" yields a google books entry) but I'm not sure that any of this speculative stuff amounts to anything. There are lots of illnesses prior to Ramsay 1956 and Acheson 1959 descriptions of the Royal Free cases, that could have been the same disease as described by Ramsay and Acheson but the connections remain speculative no matter how eminent the speculator. Perhaps if there were a review of multiple speculations that placed them in rank and produced some sort of validation of the specualtive processes then maybe there would be a valid source but otherwise I'm not happy with their inclusion as 'history'. I don't think that either Ramsay 1988 or Hyde 2011 were peer reviewed. As far as I can see the starting point would be Ramsay et al doi:10.1016/S0140-6736(56)91234-X and Acheson http://www.sciencedirect.com/science/article/pii/0002934359902803 Maybe there are other papers by Ramsay that have been peer reviewed and which make the 1955/1934 link ? Again I can't remember what is in the 1988 book bibliography.

--In Vitro Infidelium (talk) 18:15, 16 February 2015 (UTC)

• Think we should go back many years and reinstate the ME article in its own right again and separate it from CFS. The ME article got deleted and redirected here due to the influance of the Wessely School and his alcolites, who at the time kept messing about on WP. His nonsenses has now been rejected world-wide. There are two ICD's listed here and so shouldn't be lumped together in one article anymore – and Wessely's alcolites have crept back into their barrows with their tails between their legs. We need to reinstate the ME article again and so save our readers from getting it confused with CFS.--Aspro (talk) 21:53, 14 February 2015 (UTC)

Like the typo ! However the ICD codes refer to the WHO base(currently ICD-10 moving to ICD-11) and the US derrogation ICD-9-CM moving to ICD-10-CM. For ICD codes, CFS and ME both link to G93.3. I can't see what MEDRS would underwrite spliting into two articles given the las t 20 years of clinical practice and medical research.

--In Vitro Infidelium (talk) 18:15, 16 February 2015 (UTC)

Sounds excellent, but I would think it might need to be kept pretty brief for this overview page. I have suggested some edits of the 2011 xmrv material, which summarize the controversy briefly without identifying persons. Wilshica (talk) 21:38, 19 February 2015 (UTC)

Objective tests

The article says "There are no characteristic laboratory abnormalities to diagnose CFS" however the recently released IOM clinician's guide to CFS lists this test: > Using two cardiopulmonary exercise tests (CPETs) separated by 24 hours, look for marked inability to reproduce maximal or anaerobic threshold measures on the second day (note that this test may induce severe exacerbation of symptoms in these patients). — Preceding unsigned comment added by 93.33.228.32 (talk) 12:18, 25 February 2015 (UTC)

Research reviewed here: http://www.medizin.uni-tuebingen.de/transfusionsmedizin/institut/eir/content/2014/94/article.pdf - see Pathophysiology above for quote.

--In Vitro Infidelium (talk) 18:48, 25 February 2015 (UTC)

Doctor-patient relations

Most of this material is about research - there's not much about actual relations between patients and their treating physicians. Suggest adding some material about how the contested nature of the diagnosis impacts on the patients in healthcare settings.

--Wilshica (talk) 03:13, 24 February 2015 (UTC)Wilshica, February 24, 2015.

I believe the changes today were an nice improvement. I wouldn't be surprised if It brings in other editors to further polish the article. Happy editing. Ward20 (talk) 00:22, 28 February 2015 (UTC)

Exercise therapy Cochrane review

Just published here. Should probably be added to the treatment section at some point. --sciencewatcher (talk) 03:42, 28 February 2015 (UTC)

This is controversial. The IOM report concluded something different: Consistent with the findings of the systematic review of Ross and colleagues (2002, 2004), studies reviewed by Taylor and Kielhofner (2005) provided no evidence regarding the efficacy of employment rehabilitation, such as CBT and/or graded exercise therapy. Variation in methodologies, outcome measures, subject selection criteria, and other factors precluded drawing conclusions about the efficacy of interventions designed to enable ME/CFS patients to return to work. 93.33.248.245 (talk) 11:53, 28 February 2015 (UTC)

I don't think it's controversial -- it's a Cochrane review, which is about as reliable a source as we can get (more reliable than the IOM report, which is just a committee). As far as I can see, Ross 2004 did find that exercise therapy improved employment ("Only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work"). It's worth actually reading all the sources! Also bear in mind that restoring the ability to work is different from simply improving (some measure of) health. I see we don't reference either of those two studies in the treatment page, so it might be worth looking into that too. --sciencewatcher (talk) 15:10, 28 February 2015 (UTC)

It's also controversial because the PACE trial, which was the largest trial of CBT and GET for CFS, failed to demonstrate clinically significant improvement in fitness, walking distance, sick leave, receipt of disability benefits, and employment status. The claims of recovery are tied to small improvements of subjective ratings in an unblinded setting. To claim that there is no controversy is nonsense. 93.33.248.245 (talk) 15:54, 28 February 2015 (UTC)

Have you read the Cochrane study? I have just skimmed it, but I don't think it mentions fitness, walking distance, sick leave, receipt of disability benefits, and employment status. It seems to be broadly in agreement with the PACE trial and the other reviews on GET that we already have in the article, as far as I can tell. --sciencewatcher (talk) 20:40, 28 February 2015 (UTC)

I believe The Cochrane review, which adds studies by Jason 2007, Wearden 2010, White 2011 from the last Cochrane review, boils down to the conclusions:

"Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes. A positive effect with respect to sleep, physical function and self-perceived general health has been observed, but no conclusions for the outcomes of pain, quality of life, anxiety, depression, drop-out rate and health service resources were possible. The effectiveness of exercise therapy seems greater than that of pacing but similar to that of CBT. Randomised trials with low risk of bias are needed to investigate the type, duration and intensity of the most beneficial exercise intervention"

IMO The Cochrane review can help the article be more precise by adding what aspects of the disease The Cochrane review concludes are helped, and for which aspects the evidence is not developed for. I don't think it is the definitive voice yet, and the differing or similar conclusions by other reviews should be stay in the article at this point.

The Disability and Chronic Fatigue Syndrome article by Ross didn't conclude that exercise therapy improved employment. They said a relatively small study (66 patients) found an "association with increased employment". They concluded, "No specific interventions have been proved to be effective in restoring the ability to work. No specific patient characteristics have been defined that best predict positive employment outcomes in patients with CFS." Ward20 (talk) 23:12, 28 February 2015 (UTC)

Thanks for looking into the Ross study. It just goes to show that the full-text should always be read rather than just the abstract. Their abstract seems to not entirely agree with the full-text (or at least, it gives it a slightly different slant). --sciencewatcher (talk) 00:45, 1 March 2015 (UTC)

Time to split G93.3 and 780.71 in to two separate articles again

A disease codex only makes sense if there is one code for each disease (the codex's raison d'etre.). Would we have one article for chickenpox and smallpox because they both exhibit pustules – of cause not. Then why... should we be so un-encyclopedic to lump two different conditions, with such different causes, sign and symptoms together when the International Codex dose not? As thing are, WP is still currently supporting some previous editors POV confusion.--Aspro (talk) 16:09, 28 February 2015 (UTC)--Aspro (talk) 16:09, 28 February 2015 (UTC)

Well this was discussed quite extensively in the past. As far as I remember, the consensus was that the vast majority of the scientific literature agrees that CFS and ME are the illness, so that's what the article reflects. Also, given that G93.3 talks about "chronic fatigue syndrome", that kind of refutes the point you were trying to make. --sciencewatcher (talk) 20:46, 28 February 2015 (UTC)

The current info box is a little misleading, although the numbering ICD-9 is given, the hyperlink from 780.71 leads to ICD-9-CM which is the US derrogation. This will need to be changed anyway later this year as the US moves to ICD-10-CM. I'm unclear what edits to the info box are needed to link the ICD9 listing to https://en.wikipedia.org/wiki/ICD-9-CM#ICD-9-CM while leaving the 780.71 link intact. When the Infobox lack of precision is taken into account, Aspro's contention loses relevance somewhat as the intended target is not a separate ICD-10 listing but the US derogation which is relevant because of Medicare and Medicaid billing processes. Perhaps someone with info box nouse could look at changing the ICD9 link into an ICD-9-CM link.

On the broader issue of splitting CFS from ME, ICD-11 (not to be confused with ICD-10-CM) is in preparation and is reported (see Neurasthenia and ICD-11 and ICD-11-PHC http://dxrevisionwatch.com/) to not include Neurasthenia which in the past has been linked by some researchers to CFS and appears in ICD 10 at F48. Thus ICD-11 would break any problem of multiple entry as presented by ICD-10. However the structure of ICD-11 will differ from ICD-10 and will with certain conditionality, allow for a disease to appear in more than one categorisation and editor will need to make themselves aware of how ICD-11 will work. At this stage splitting the CFS article would seem premature. Further if the HHS were to adopt the IOM proposals then SEID would emerge as a new diagnosis with its own ICD code - something which could be put in place by 2016.

My own observation is that the current article is looking bloated in relation to the encyclopaedic value given and that in the context of re-categorisation, onging research and changes in scientific conceptulisation of the illness(es) then a strategic paring back of the article to a bare bones structure would be both the pragmatic and frankly most honest thing to do at this stage. I understand all those editors who've put in many long hours trying to maintain the article will view this prospect as unwelcome but as it stands we have a 'dogs breakfast' of an article that is barely fit for encyclopaedic purpose.

--In Vitro Infidelium (talk) 12:50, 1 March 2015 (UTC)

• Think sciencewatcher has unwittingly exposed the problem. It was discussed quite extensively in the past. The flavor of the month won back then. In the fullness of time however, those hypothesis linking them fell on stoney ground. Trying to add neurasthenia into the mix also added confusion. That is not to say one can not have other co-morbid conditions but the old argument, also encouraged a spread of the belief (Belief: acceptance without proof) of separate co-morbid conditions where one a single correct diagnosis could more effectively focus the practitioners effort at managing his patient's condition. In Vitro Infidelium is right, in that we should not offer this dogs diner of and article to our readers. 'Bloated' is too a kind word for it – 'misleading' is I think better. ( Although I don't see what Medicare and Medicaid billing processes has to do with the scientific process of codifying diseases. They are financially based organisations and just what to pay out as little as possible). So now, the original differentiation that WP had between CFS and ME yet again makes more sense. Is it so very hard for the other editors here to comprehend this issue clearly? --Aspro (talk) 15:48, 1 March 2015 (UTC)

(edit conflict) There doesn't seem to be anything I can do as far as the infobox goes. It's setup to only have titles of "ICD-9" and "ICD-10" without allowing for any variations of them. Something could be added to the template easily enough, but that would be a discussion best held on the template page itself. I'm not sure if that's a discussion worth having or not. With the switchover to ICD-10 later this year (as I understand it), I wonder if ICD-9 might end up being removed from the infobox anyway, which would render this a moot point.

On the topic of splitting, I have to agree with IVI at this point. The ICC also recommend splitting ME from CFS, and I broadly agree with that sentiment, but there's no clear delineation of CFS from ME in the overall medical literature that I'm aware of. The split would also lead to the question: if ME (or SEID) is one thing, what exactly is CFS? That question also hasn't really been addressed by anything at this point (again, that I'm aware of...by all means, correct me if I'm wrong). Medically speaking, splitting leaves CFS in a limbo state and I think that would reflect here in the article as well. We'd probably end up with both articles being slight forks of one another. There needs to be clearer data. I'm neither here nor there on IVI's suggestion of paring this article back. – Robin Hood  ^(talk) 16:05, 1 March 2015 (UTC)

CFS is Chronic Fatigue Syndrome (as one gets with say cancer). With ME the main symptom is not chronic but 'episodes' of complete and utter exhaustion and physiological changes, that don’t fall into neither CFS nor neurasthenia. Again, I say it is nuts to subject our readers to something which is nuts at the same time pretending that we are an encyclopedia.--Aspro (talk) 18:36, 1 March 2015 (UTC)

The article fails to inform the reader on the topic. The picture given is confused and vague

As a patient, myself, I've seen first-hand how much gets thrown into the CFS wastebasket and I understand exactly where you're coming from. The problem is that Wikipedia doesn't work solely based on our views or the latest research or guidelines. In order for a split to happen, there would have to be clear support for the idea that they're separate from one another from several significant medical sources and research data talking about them as separate entities. If that's out there, then we'd have no problem justifying a split, but we do have to be able to justify it those who have doubts, and I don't think we have strong enough support for that, either here on the wiki or from the medical community at large.

On a side note, I've always heard fatigue from cancer and other conditions referred to as simply "chronic fatigue". While there are times when there has been confusion and overlap in the literature, "Chronic Fatigue Syndrome" has mostly been used to mean ME/CFS (plus whatever else falls into it based on those guidelines that are far too loose), not chronic fatigue from other clear-cut conditions. – Robin Hood  ^(talk) 19:51, 1 March 2015 (UTC)

It was the concatenation of CFS and ME that happened recently. The reason for that is now moot. So why do we have to justify a reason to set things right again? Other that it makes sense -like it did before, when we had CFS & ME as separate articles. Robin Hood is right in saying that CFS has become a wastebasket term. I would go further in suggesting.... Nay! even more ...in pointing out.... That in this WP article, still has the cloak of umbrella term which encompasses anything that that includes lethargy. By drifting off from from the original and current codex, we now have a mess of an article. Our readers deserve better, otherwise why do we bother?--Aspro (talk) 20:57, 1 March 2015 (UTC)

I doubt that a reader will leave this article feeling they have a decent overview on the topic. I don't think splitting it is justified at this time but it should do a better job separating the various schools of thought that exist, rather than mixing them all together in one contradictory mess. ME is clearly meant to describe something different from Fukuda CFS or Oxford fatigue. For example, the symptom list describes ME, while Oxford CFS is basically just fatigue. Treatment that is based on Oxford cohorts is then described as being helpful for these symptoms. It's total nonsense. 93.33.239.117 (talk) 21:53, 1 March 2015 (UTC)

Does any editor (admin) here, know how to reinstate the original ME article without it being redirect here? Then we can start a fresh and leave all this nonsense behind.--Aspro (talk) 22:08, 1 March 2015 (UTC)

Aspro There is no need for administrator privileges to reinstate previous versions of articles that are currently redirects (unless the page is protected or salted), but I think such a move could only be made after consensus is formed. Currently I don't think there's consensus for splitting the articles. Even dissenting groups such as the Canadian/Carruthers group engage in lumping rather than splitting. JFW | T@lk 22:20, 1 March 2015 (UTC)

Yes, I am looking for a consensus too (which is why I posted it) but why jump back into the archaic Canadian/Carruthers mumbo jumbo (although it had its good points – bit like the Curate's egg one might say). Lets move on. We don't bleed people to death any more in the belief that it will make them well. Can't remember what Einstein said but it was something along the lines that the simplest most beautiful explanation was probably right and he gave us E= MC ².--Aspro (talk) 22:57, 1 March 2015 (UTC)

Let me put it another way. Imagine you're speaking to someone who knows absolutely nothing about ME/CFS/SEID. They say "prove to me that ME/SEID is something different from CFS using respected medical sources". That's the approach Wikipedia takes. So if you want to split the article, show us high-quality medical sources that tell us that they're different things. Like I said, I know the ICC clearly states that those that fit the criteria should not be included with CFS patients. What else? – Robin Hood  ^(talk) 04:31, 2 March 2015 (UTC)

Sources to separate them? What validity did the old editors have to combine them? It is like trying to prove the negative. They erred. If they still stand by it, then should it not be up them to them to provide new and compelling evidence”? It was they that creates this knotted ball of string of an article. Some times, it better to start over, and not waist time on a post mortem of the well meant good intentions of a bygone age. To sort this article out along those lines is like trying to unpick the Gordian Knot. --Aspro (talk) 19:13, 4 March 2015 (UTC)

@Aspro It would help if you could familiarise yourself with a couple of aspects of the way Wikipedia works and the basics of international/national disease categorisation. Firstly the role of the Infobox https://en.wikipedia.org/wiki/Template:Infobox_disease , this is a way of presenting a common element across all similiar articles (in this case disease), this answers your question re:ICD-CM, basically it's a stylistic issue - so ICD sets the ordering of a disease article, in this case ICD-10 places both Benign ME and CFS at G93.3. ICD-9-CM places CFS at 780.71, for Wikipedia purposes the ICD-CM is subsidiary to the ICD-10 listing and does not offer a category for separate listing. On this second issue you may also find it helpful to move things along if you were to familiarise yourself with how the ICD and ICD-CM preocesses operate and how the curent changes to ICD-11 and ICD-10-CM are progressing - see multiple articles at http://dxrevisionwatch.com/

As RH says, to make your splitting argument you need to come up with sources, these need to be Governmental level - CDC, NICE etc or equivlents or review type articles published in peer reviewed journals of good standing. At present it seems pretty clear that the weight is firmly toward CFS and ME being considered to belong in a common disease catgory, irrespective of what aetiologies may actualy be involved or what diagnostic criteria are used in different parts of the world or by different clinicians or which are favoured by various patient groups. Should SEID be adopted and given its own ICD number that would warrant creation of a a Wikipedia SEID article, while CFS and BME would remain as is, until such time as there is compelling published research that would require separate CFS and ME articles. I can see none of the current problems with the article being resolved by splitting, rather it would double or perhaps even quadruple those problems as the two articles would inevitably conflict with each other.

I have no idea whether SEID will be adopted into ICD nor whether it will be included as a sub paragraph to G93.3. So that is jumpimg the gun and I don't see why you have brought it up. Yet the science strongly suggests that the immune system is involved. And remember there is such thing as bad genes. A propensity to develop a certain condition may protect you form another condition. You have a mix of genes because they enabled your ancestors to survive and bring about you. Like-wise there is no “ weight firmly toward CFS and ME being considered to belong in a common disease category” It is just that some of the signs and symptoms over lap. Lots of diseases exhibit an overlap - but science does not lump them all together on that spurious basis. So that argument is moot. A doctor thinks Horses not Zebras. You go to your GP with a cough and he views as a just cough until you inform him that your employer has informed you that that building site your working on was once a London plague pit - thus illuminated, he proscribe antibiotics (just to be on the safe side- although the actual risk is infinitesimal small). The average GP knows more about the plague (with he has never seen) than ME. So lets not discus it any more.--Aspro (talk) 18:41, 4 March 2015 (UTC)

--In Vitro Infidelium (talk) 14:54, 2 March 2015 (UTC)

We do not create new article every time a definition for a condition is adjusted or assigned a new number.

Thus we keep the ICD9 and ICD10 definition within a single article. Doc James (talk · contribs · email) 19:29, 2 March 2015 (UTC)

Then Why? Oh Why,? Oh Why was G93.3 & 780.71 allowed to get concatenated on WP without evidence in the first place? I,E., on the very rules that you are that you are now expounding! That’s the point. Wisdom, is being able to both realize and accept a mistake was made and roll back. The reason back then has become moot (Moot: To make or declare irrelevant). Think of it a bit like, when doctors thought that disease came about though spontaneous creation, until Paster demonstrated that their apparatus was not sterile to start with. Med students may laugh at this, with their the benefit of hind- sight. This article is both a mess and an embarrassment. It even goes against Occam's razor. The solution is to accept that a few years ago some editors decided to own the article against Wikipedia's policy and inject their own flavor of the day (POV) (ref: Doc James:We do not create new article every time a definition for a condition is adjusted or assigned .... so Why, oh Why was the concatenation OK back then? ) Historical precedence maybe? Oh come on. That was back then and today is 4th March 2015. Let us all correct it! Otherwise... what is the point of us editing WP?! We might as well hand it over to graduates and let them add anything they have read about in the popular press.--Aspro (talk) 17:53, 4 March 2015 (UTC)

The argument here is that previously there were two separate articles, and the contention is that clarity would be served by returning to that position, though the argument is flawed for all the reasons given.--In Vitro Infidelium (talk) 13:12, 3 March 2015 (UTC)

(←) Aspro, in regards to your recent posts, I'll re-iterate: Wikipedia does not and cannot operate based on people's opinions, no matter how widespread. You will never get people to agree to a split unless you can provide significant medical evidence in high-quality sources that says that ME is a different disease than CFS. That's the only argument that matters to an encyclopedia. If you can find evidence of that nature, then present it and we'll discuss how best to go about the split. To the best of my knowledge, however, there are simply not enough high-quality sources even discussing the issue as yet, much less stating for a fact that they're two different things. – Robin Hood  ^(talk) 18:53, 4 March 2015 (UTC)

Opinions: Lets take that issue:

You say “Wikipedia does not and cannot operate based on people's opinions” This is my point , so why exactly did G93.3 & 780.71 get commingled together in this mess against the scientific consensus of the time? Which was and still is very widely spread but then you might say “they are just scientist so what are their weighted and balanced opinions worth. Therefore, Will tell you via a little history lesson. Once upon a time in the UK, a researcher heard that the government was about to award a large grant to fund research into ME. Wow, he though “I would like a part of that” so he unilaterally altered the UK database copy of the ICD to link the two conditions together (this is not my opinion but a record of fact). He got his money (this is not my opinion but a record of fact) and then got invited to speak at conferences around the World to spread his word, but in-doing so lost his scientific reputation and so now disassociates himself from commenting about anything to do with ME (which he is on record saying – although he may word it differently). So this pseudo-link of CFS-ME is now moot. In science, one does not have to refute Russell's teapot. The combining on WP of CFS & ME was perhaps a well meant by editors at the time which had such strong feelings (note: not critical thinking skills ) that they didn't weigh references. So, how does one untangle an article which has been corrupted by pseudo sciences. Answer: Drop the tea-pot and wind back because it was commingled by editors Opinions not the wider current scientific consensus. The secret to moving forward, (both here on WP and else where) is to avoid getting the cart before the horse. --Aspro (talk) 20:48, 4 March 2015 (UTC)

Lol, what are you smoking Aspro? I think you need to stop listening to the conspiracy theorists. Entertainment aside, what we base our decisions on is high quality sources, and they treat CFS and ME as the same thing. --sciencewatcher (talk) 21:03, 4 March 2015 (UTC)

You say that it's scientific consensus that they're not the same. Great, glad to hear it! We can finally split the article like so many editors have wanted to do over the years...just as soon as you provide several high-quality sources to support your assertion that this is the consensus. I really wish it were, to be honest, but the simple fact is, it's not the current consensus. The current consensus is that there is no consensus. Some people would like to think it's all variations on the same illness, while others have used biomarkers to suggest that it's several similar illnesses being inappropriately lumped together. And none of those biomarker studies have been replicated and widely accepted. Frankly, I think that sucks and that the study of this illness will advance immeasurably once we have clear delineations, but we're just not there yet.

As for why G93.3 and 780.71 were originally merged, I suggest you look at the description of 780.71 when you click on the link. Third bullet down, "Also known as myalgic encephalomyelitis". Now, compare that to G93.3's subheader, "Benign myalgic encephalomyelitis". (That word "benign" leaves a lot to be desired, mind you, but that's a different battle.) – Robin Hood  ^(talk) 22:57, 4 March 2015 (UTC)

It will be interesting to see what reliable sources say in October of this year when/if, as planned, ICD-10-CM makes ME and CFS diagnosis codes mutually exclusive. Ward20 (talk) 18:12, 5 March 2015 (UTC)

ICD-CM isn't a library of diagnoses - it's just a coding of diagnoses, there wouldn't be any obvious need for expert opinion on the separation of ME into: G93.3 and "Chronic Fatigue unspecified" (note Syndrome doesn't appear)- R53.82, beyond perhaps issues of appropriate billing under Medicaid and Medicare that hadn't been discussed in the previous decade or so. This text appears on the ICD-CM Conversion site http://www.icd10data.com/Convert "Note: approximate conversions between ICD-9-CM codes and ICD-10-CM/PCS codes may require clinical interpretation in order to determine the most appropriate conversion code(s) for your specific coding situation." which I think puts the issue into context. Until now ICD and ICD-CM have (ICD-CM mental health being an exception ?) have only been categorisations without no substantive diagnostic power. ICD-11 may change that position somewhat but ICD-CM-10 will not unless there are changes to the updating process, and there's been no suggestion that will happen. --In Vitro Infidelium (talk) 11:08, 6 March 2015 (UTC)

I agree the ICD-CM has no official substantive diagnostic power. However, the new version, as presently written, 2015 Code Tables and Index - Updated 11/13/14 [ZIP, 16MB] will force doctors to chose one diagnosis verses the other for the purpose of insurance coverage. In practice, it may be a distinction without a difference. Well, I'll be on the lookout for a source to explain the ramifications of this change.

ICD-10-CM TABULAR LIST of DISEASES and INJURIES Pg. 271:

"G93.3Postviral fatigue syndrome

Benign myalgic encephalomyelitis

Excludes1:chronic fatigue syndrome NOS (R53.82)"

ICD-10-CM TABULAR LIST of DISEASES and INJURIES Pg. 955:

"R53.82Chronic fatigue, unspecified

Chronic fatigue syndrome NOS

Excludes1:postviral fatigue syndrome (G93.3)"

Ward20 (talk) 00:24, 7 March 2015 (UTC)

(←) Yes agreed, the ICD-9-CM to ICD-10-CM change will need to be addressed. This is another issue that affects the infobox display - discussion here: https://en.wikipedia.org/wiki/Template_talk:Infobox_medical_condition#Confusion_of_ICD_with_ICD-CM --In Vitro Infidelium (talk) 10:24, 7 March 2015 (UTC)

Classification Section

There are compound problems with this part of the article: The content of the section is a conflation of three separate conceptual areas – (1) the classification of disease(ICD, ICD-CM) etc, (2) Clinical Descriptions and Diagnostic Criteria, and (3) Research Criteria. I suspect this has been the source of many arguments in the past but the logical presentation of these three elements is not difficult .

Proposal:

1. ICD classification is dealt with under History, therefore section heading “Classification” should be renamed – Diagnostic, Research and Clinical definitions.

2. New Section “Diagnostic, Clinical and Research definitions” to be sub-headed:

Diagnostic & Clinical

Research

And the existing text ordered so that CDC/Fukada , Canadian and NICE appear under Diagnostic & Clinical and, Oxford appears under Research . The title of the Oxford reference confirms the research categorisation, unfortunately the current CDC ref doesn’t support the (undoubtedly correct) claim about widely used research criteria; I suggest adding the contention re: CDC/Fukada to follow Oxford but with “citation needed” until such time as a reference can be found. Note the Afari/Buchwald ref, is sound for CDC appearing under Diagnostic and Clinical.

3. “Naming” subheading and associated text converted to new separate Section.

4. For clarity and continuity: sub headed paragraph "Differential Diagnostic" in section "Risk Factors" moved to section headed Diagnosis, and this section inserted between new section “ Naming" and existing section “Signs & Symptoms”. --In Vitro Infidelium (talk) 17:11, 13 March 2015 (UTC)

Actined 21/03/2015 --In Vitro Infidelium (talk) 12:04, 21 March 2015 (UTC)

CDC toolkit archived

The Institute of Medicine's report on ME/CFS has caused the CDC to take down their toolkit as an active page on their site [21]. This has caused at least one link and possibly several others to be obsolete. I will tag ones I see, but others that are monitoring this page please be on the lookout for them. Ideally, other sources should be found as it appears they are abandoning the old toolkit. Ward20 (talk) 00:00, 13 April 2015 (UTC)

Spinal Fluid Study

The SPINAL FLUID study needs to be on this page, if this page has any legitimacy — Preceding unsigned comment added by 81.153.101.93 (talk) 18:37, 28 April 2015 (UTC)

Which spinal fluid study are you referring to? I've heard of a couple over the years. Also, why does it "need" to be on this page? Please keep in mind that Wikipedia relies heavily on secondary sources, so if this is a new study, it probably doesn't yet merit going on the page; if it's an older one, sources would need to be used that review the study in question. See MEDRS for more information about what's appropriate for a Wikipedia medical article. – Robin Hood  ^(talk) 20:08, 28 April 2015 (UTC)

This is probably the study referred to: http://www.ncbi.nlm.nih.gov/pubmed/25824300 - commentary here http://www.meresearch.org.uk/news/immune-markers-in-csf/ This is a small study and while very interesting does not on its own meet the MEDRS test. --In Vitro Infidelium (talk) 10:49, 4 May 2015 (UTC)

Treatment Section

Although CBT ad GET are termed therapies, both are in effect (claimed) means by which the patient learns to optimise their physical, emotional and/or cognitive capacities, as such CBT and GET can more acurately described as (self) disease management, there being no long term involvement of health care workers. Pacing is entirely self management - it would therefore be more accurate to title this section Illness Managment. --In Vitro Infidelium (talk) 12:17, 21 March 2015 (UTC)

The reviews say "Treatment and Management" so that might be a better term to use. --sciencewatcher (talk) 15:34, 21 March 2015 (UTC)

Note for clarity -"Treatment and Management" edit has been actioned. --In Vitro Infidelium (talk) 10:52, 4 May 2015 (UTC)

P2P ME/CFS: Advancing Research

The P2P now has a release date of Tuesday, June 16, 2015 - print version will be in the Annals of Internal Medicine https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs --In Vitro Infidelium (talk) 11:01, 4 May 2015 (UTC)

No Decision About ME

The MEA has published the results of its 2012 patient survey No Decision About ME Although this is clearly not a MEDRS source it does represent an important patient perspective. I don't know what the current WP position is on patient perspective within disease articles, so I'm just offering this for comment, I also have to acknowledge a small personal CoI in that as one of the MEA's 4,000 members I've supported the publication of the report. --In Vitro Infidelium (talk) 13:36, 29 May 2015 (UTC)

Link not working. Doc James (talk · contribs · email) 03:21, 1 June 2015 (UTC)

Link now here I believe. Ward20 (talk) 07:23, 1 June 2015 (UTC)

Patient Organisations - Proposal to Add AfME and MEA

The external links section/CFS Template - Organizations: lists Solve ME/CFS which is a US organisation but no other. WP has articles on two UK patient organisations Action for ME and the ME Association, AfME is comparable in financial scope to Solve ME/CFS and the MEA although smaller in financial scope has a comparable membership to AfME, MEA is also the oldest ME patient organisation, being closely linked to both Dr Ramsay, and Prof Betty Dowsett. Both organisations would seem to pass any notability test and both have informative websites ME Associationand Action for ME Currently the template appears on both the MEA and AfME article pages but lists only SolveME which is somewhat anomalous. If there are no objections I will add MEA and AfME to the template next weekend, unless of course someone else feels it's OK to go ahead and make the additions before then. --In Vitro Infidelium (talk) 16:01, 31 May 2015 (UTC)

Sounds good to me. I agree that both of them are very notable and that it makes sense to add them. – Robin Hood  ^(talk) 02:05, 1 June 2015 (UTC)

Done !--In Vitro Infidelium (talk) 09:15, 7 June 2015 (UTC)

P2P ME/CFS: Advancing Research final publishing

Annals of Internal Medicine http://annals.org/article.aspx?articleid=2322801 and http://annals.org/article.aspx?articleid=2322804#Abstract --In Vitro Infidelium (talk) 10:05, 16 June 2015 (UTC)

Also http://annals.org/article.aspx?articleid=2322800 --In Vitro Infidelium (talk) 13:21, 16 June 2015 (UTC)

And a useful summary which might assist editors gleaning useful elements from the above: http://annals.org/article.aspx?articleid=2322808 --In Vitro Infidelium (talk) 13:25, 16 June 2015 (UTC)

Here are the full citations:

Komaroff AL.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness.

http://annals.org/article.aspx?articleID=2322808

Ann Intern Med. 16 June 2015;162:871-872. doi:10.7326/M15-0647

Haney E, Smith MB, McDonagh M, et al.

Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop.

http://annals.org/article.aspx?articleID=2322800

Ann Intern Med. 2015;162:834-840. doi:10.7326/M15-0443

Smith MB, Haney E, McDonagh M, et al.

Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop.

http://annals.org/article.aspx?articleID=2322801

Ann Intern Med. 2015;162:841-850. doi:10.7326/M15-0114

Green CR, Cowan P, Elk R, et al.

National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

http://annals.org/article.aspx?articleID=2322804

Ann Intern Med. 2015;162:860-865. doi:10.7326/M15-0338

Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.

http://www.iom.edu/Reports/2015/ME-CFS.aspx

Washington, DC: National Academies Press, 2015.

--Nbauman (talk) 05:53, 20 June 2015 (UTC)

Awareness day

The article mentions May 12 as awareness day for ME and CFS. This is not correct. It's an awareness day for ME, but not for CFS. Cheers, The Jolly Bard (talk) 14:59, 29 June 2015 (UTC)

While I wish that were true, it's not. From the May 12 site: "May 12 was chosen as International Awareness Day for Complex Immunological and Neurological Diseases (C.I.N.D.) since 1992. The diseases included in C.I.N.D., such as Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS), Chronic Lyme Disease (CLD), Fibromyalgia (FM), Gulf War Illness (GWI) and Multiple Chemical Sensitivity (MCS)." Anal0gue (talk) 19:23, 29 June 2015 (UTC)

That is just a random site created by a single (CFS) patient. It's wrong. May 12 as awareness day was introduced by the late Tom Hennessy, and he didn't include CFS. Funny enough, he is quoted correctly on the same site. The Jolly Bard (talk) 19:44, 29 June 2015 (UTC)

PVFS

This was copied over from my talk page, which is not the place to discuss article material:

Post-viral fatigue syndrome was once considered as an alternative name to ME, but not to CFS. The list of suggested names can be found on pages 58/59 of the IOM report. Cheers, The Jolly Bard (talk) 14:50, 29 June 2015 (UTC)

@The Jolly Bard:, Page 20 of cited source clearly states PVFS is an alternate term for CFS. As we go by sources and not what individual editors believe, it needs to stay. Yobol (talk) 19:28, 29 June 2015 (UTC)

The report is about ME and CFS combined, so your conclusion that this pertains to CFS is original research. It is also wrong. PVFS was once seen as a possible alternative diagnosis to ME, but this debate was dead when CFS came along. The Jolly Bard (talk) 19:37, 29 June 2015 (UTC)

Since ME is an alternate term for CFS, yours would seem to be the OR. Note that the text of the source states that "post-viral fatigue syndrome" is another term used to describe "ME, CFS, ME/CFS". Your objection is not supported by the source. Yobol (talk) 19:42, 29 June 2015 (UTC)

You are quoting incorrectly. The source doesn't say that. The IOM does not consider ME as an alternate term to CFS: "Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world." (my bold) The Jolly Bard (talk) 19:46, 29 June 2015 (UTC)

They also use the term ME/CFS, and they say "the committee concludes that the term 'myalgic encephalomyelitis' is inappropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in ME/CFS patients, and myalgia (muscle pain) is not a core symptom of the disease. ". So clearly they do consider CFS as an alternative term to ME, and they also consider ME to be an incorrect etiology. --sciencewatcher (talk) 19:53, 29 June 2015 (UTC)

The one does not lead to the other, but is an entirely different discussion. One that would belong in the ME article, and not here. The Jolly Bard (talk) 19:57, 29 June 2015 (UTC)

This is explained in the summary "Over a period of decades, clinicians and researchers developed separate case definitions and diagnostic criteria for ME and CFS, although the terms denote conditions with similar symptoms. The literature analysis conducted in support of this study took into consideration the variability in the definitions used in the studies reviewed. For the purposes of this report, the umbrella term “ME/CFS” is used to refer to both conditions." This is their rationale for the use of ME/CFS in the IOM report. The combined term is not an implication that they are the same. Anal0gue (talk) 20:01, 29 June 2015 (UTC)

Prevalence

The lead section currenly says with regard to prevalence:

• Fatigue is a common symptom in many illnesses, but CFS is comparatively rare. Estimates of the number of people with the condition vary from 7 to 3,000 per 100,000 adults. About one million Americans and a quarter of a million people in the UK have CFS.

This is hopelessly inconsistent. 3% is far from rare, and if estimates vary that widely then how can we be so accurate about America and the UK. Cheers, The Jolly Bard (talk) 20:20, 29 June 2015 (UTC)

"Fatigue is a common symptom in many illnesses, but CFS is comparatively rare." This was used to draw the distinction between the number of people that experience fatigue symptoms in many illnesses and fatigue from exertion, from the number of people that experience fatigue from ME/CFS.full text ref Some quotes from ref, "The OPCS survey of psychiatric morbidity in the UK found that 27% of all adults (a third of all women and a fifth of all men) reported significant fatigue in the week before interview.", and "Of the respondents with chronic fatigue, only 1.4% attributed it to CFS." Perhaps it can be expressed more clearly.

The variation in estimates vary widely depending on the study population and definitions used. The "one million Americans and a quarter of a million people in the UK have CFS." are from government agency sources (CDC and NHS) that presumedly distill the data to the most reasonable estimates. Ward20 (talk) 22:24, 29 June 2015 (UTC)

Case definition

Every single source that defines CFS stresses that it's a case definition, which seems a rather essential bit of information. Is there any particular reason why the article should not reflect the sources on this point? I find it rather rude to see my edits reverted without reasonable explanation. The Jolly Bard (talk) 14:23, 29 June 2015 (UTC)

That would make this an article about the case definition for CFS instead of the disease. Then you could simply make a new article about the case definition ME and achive your goal of separating CFS from ME. Please try to work with the other editors to build consensus to improve the article rather than impress you own POV into the article. Thanks. Ward20 (talk) 23:14, 29 June 2015 (UTC)

Please stay civil. I don't think you're qualified to read other people's minds. I have no intention to 'separate CFS from ME' at all. On the issue at hand, can you provide a reliable source that explains how CFS is more than a case definition? The Jolly Bard (talk) 23:33, 29 June 2015 (UTC)

Please, you have edited about a separate ME article at least 4 separate times [22], [23], [24], [25]. Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. The CDC defines it as a medical condition, the same as the Wikipedia article, not a case definition. Ward20 (talk) 01:48, 30 June 2015 (UTC)

Perhaps the idea is hard to grasp, when you are clinging to misinformation. An act of separation is not needed for an article on ME. That CDC page almost seems to have been copied from Wikipedia. It doesn't provide an explanation for that stance. The Jolly Bard (talk) 09:50, 30 June 2015 (UTC)

Names

The text currently gives the IOM report as a source, that gives a number of terms as alternative names to CFS. That is, however, not in the report. The IOM does give a list of suggested names, but it doesn't validate any of those. It also gives a small number of terms as 'used to describe this condition, however 'this condition' is not CFS but the combination of two conditions that is the report's focus:

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world.

The article should reflect the sources and not include original research. Cheers, The Jolly Bard (talk) 14:38, 29 June 2015 (UTC)

Our CFS article currently also contains:

A 2001 review referenced myalgic encephalomyelitis symptoms in a 1959 article by Acheson, stating ME could be a distinct syndrome from CFS, but in literature the two terms are generally seen as synonymous.

I don't think a single source, which only mentions it in passing, suffices to support such a bold statement on synonymity. Moreover, the same authors say different in their 2002 article. The Jolly Bard (talk) 21:51, 29 June 2015 (UTC)

In the IOM report discussion on whether CFS should be renamed ME (page 60), they state "Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic

criteria for CFS", going on to conclude that "a diagnosis of CFS is not equivalent to a diagnosis of ME". This is a statement against synonymity as noted above. Anal0gue (talk) 20:17, 30 June 2015 (UTC)

Review articles of case definitions

Since case definitions seem to be a hot topic I thought I would start a section to put WP:MEDRS review article sources for them. Any one that can add please do. Ward20 (talk) 19:22, 29 June 2015 (UTC)

Added IOM report. Chapter 3 contains a review of case definitions. Anal0gue (talk) 19:38, 29 June 2015 (UTC)

Added Twisk World J Methodol. 2015 June 26 Ward20 (talk) 19:54, 29 June 2015 (UTC)

Added Haney Annals of Internal Medicine 16 June 2015 Ward20 (talk) 00:57, 30 June 2015 (UTC)

Added Johnston Annals of Epidemiology, 6, June 2013 Ward20 (talk) 01:00, 30 June 2015 (UTC)

Added Twisk Front Physiol. 2014. Anal0gue (talk) 19:06, 1 July 2015 (UTC)

• Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. http://bmjopen.bmj.com/content/4/2/e003973.full#aff-1

• Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Chapter 3. http://www.ncbi.nlm.nih.gov/books/NBK274235/ http://jama.jamanetwork.com/article.aspx?articleid=2118591

• The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: the need of accurate diagnosis, objective assessment, and acknowledging biological and clinical subgroups http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3974331/?report=classic

• Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop http://annals.org/article.aspx?articleID=2322800

• The adoption of chronic fatigue syndrome/myalgic encephalomyelitis case definitions to assess prevalence: a systematic review http://www.ncbi.nlm.nih.gov/pubmed/23683713

• The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: the need of accurate diagnosis, objective assessment, and acknowledging biological and clinical subgroups http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3974331/

Blood donation

While the XMRV situation brought up some interesting aspects and official responses from several governments, this is kind of moot now. I think it would be fair though to point out in this section that people with ME or CFS in general should not give blood. This is reflected, for example, in the United States Red Cross eligibility requirements where they state that blood donors must "Be in good general health and feeling well*" which would not represent most patients with ME or CFS. Their definition of healthy is "...that you feel well and can perform normal activities." which again does not apply to most patients by definition. Anal0gue (talk) 21:13, 29 June 2015 (UTC)

It seems to me that an update in this section is warranted. I specifically asked the Red Cross if there is a problem with ME/CFS patients donating blood and was told no. The article will need a WP:RS to talk about why a person should not donate. Ward20 (talk) 21:53, 29 June 2015 (UTC)

Asking about it is original research. There are official criteria. In Europe ME patients are not allowed to donate blood, and this was already so before XMRV. However, if you ask a random employee, chances are that they don't know and inform you incorrectly. The Jolly Bard (talk) 21:59, 29 June 2015 (UTC)

Would the Red Cross not be considered a reliable source? I don't think there is any ambiguity there in their eligibility requirements. To donate you must be healthy, people with chronic health conditions are by definition not healthy. Anal0gue (talk) 22:08, 29 June 2015 (UTC)

Yes, it is original research. WP:ORIGINALSYN "If one reliable source says A, and another reliable source says B, do not join A and B together to imply a conclusion C that is not mentioned by either of the sources." To donate you must be healthy from source A. People with chronic health conditions CFS/ME are by definition not healthy from source B. Therefore people with CFS can not donate is conclusion C. If you can find a source that states C and includes A + B that is not WP:OR. Ward20 (talk) 22:37, 29 June 2015 (UTC)

The same Red Cross page I took the quote from outlines their definition of healthy. It's all from source A. They are loose, common sense guidelines because otherwise they'd have 100 pages listing which conditions could or could not donate. Again I don't think their requirements are ambiguous at all. They further clarify that people with chronic health conditions (they use diabetes as an example) who are being treated to the point where they feel well would be eligible. This resulted from the XMRV scandal, but Ian Lipkin said the following: "For now, excluding people with the syndrome from blood donation is prudent, says Ian Lipkin, director of the Center for Infection and Immunity at the Columbia University Mailman School of Public Health, who is heading the National Institutes of Health–funded investigation into the connection between chronic fatigue syndrome and XMRV. “My sense is that the number of people with the syndrome likely to be sufficiently fit to make blood donations is so few that the Red Cross and AABB have decided for a variety of reasons, scientific and otherwise that it’s just not worth the risk.” " Anal0gue (talk) 23:27, 29 June 2015 (UTC)

How about something along the lines of "In accordance with American Red Cross guidelines, patients with ME or CFS who do not feel well enough to perform normal activities should avoid donating blood" Anal0gue (talk) 23:54, 29 June 2015 (UTC)

This still needs an up to date source that talks exclusively about CFS. The AABB and Red Cross did exclude CFS patients from giving blood after the XMRV scare. Things change over time. This is as close as I could come to their present exclusion criteria. Most chronic illnesses are acceptable as long as you feel well, the condition is under control, and you meet all other eligibility requirements. If you can find a better source great. It is probably out there. But you can't use "ME or CFS" unless the WP:RS does because that is your own WP:POV. I did find the NZ ban and Canadian ban. Ward20 (talk) 00:41, 30 June 2015 (UTC)

OK, how about "In accordance with American Red Cross eligibility requirements, individuals who do not feel well enough to perform normal activities should avoid donating blood."? Anal0gue (talk) 01:01, 30 June 2015 (UTC)

That wording still has a problem because the source doesn't specifically reference ME/CFS. It would be considered original research. An editor would have to conclude individuals who do not feel well enough to perform normal activities have ME/CFS. WP:OR Drawing conclusions not evident in the reference is original research...

After some thought, I believe this wording would not be OR. "The American Red Cross discourages persons with chronic illnesses which are not controlled or do not feel well from donating blood."[26] Ward20 (talk) 19:45, 1 July 2015 (UTC)

Seems reasonable to me. Anal0gue (talk) 20:34, 1 July 2015 (UTC)

Yes, looks fine. Other parts of the world are much stricter though. Patients with a neurological disorder are usually not allowed to give blood. Cheers, The Jolly Bard (talk) 21:30, 1 July 2015 (UTC)

Yes, I think any bans left in place (or bans in place before XMRV) should be noted specifically so that it is not assumed that because XMRV was debunked that it's now safe for ME or CFS patients to donate blood. Anal0gue (talk) 21:42, 1 July 2015 (UTC)