Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

Lead sentence on isolation

Me and User:Ward20 have boldly tried a few options here, but we don't seem to converge completely on location and content of this sentence. The current sentence says:

ME/CFS negatively impacts people's health and abilities and can cause social isolation

I think this isn't quite optimal for two reasons. The first one is that it's repetitive: we've just described the symptoms of ME/CFS, so of course it impacts people's health. The second reason is that the first paragraph is quite full already, and I think this works better in the social impact paragraphs. My previous attempt was:

ME/CFS negatively impacts people's social lives, and can be isolating

—Femke 🐦 (talk) 12:28, 2 March 2024 (UTC)

If I understand correctly, the proposal is to remove the sentence from the lead, and tweak the "Economic and social impact" section slightly, since it already talks about isolation? That's fine, I moved the sentence since it seemed oddly placed in the controversy section of the lead, and I didn't want to change too much in the lead in one editing session. I don't have any objection to the previous wording either. Ward20 (talk) 20:12, 2 March 2024 (UTC)

My idea was to rejig the last lead paragraph to be about society and culture, rather than solely about the controversy, given that social impact / reasearch funding is also really important. —Femke 🐦 (talk) 21:49, 2 March 2024 (UTC)

If it is to stay in the lead I think the wording fits better towards the end of the lead first paragraph.

About a quarter of the people are severely affected and unable to leave their bed or home. ME/CFS negatively impacts social lives, and can be isolating.

I think the paragraph would still be only four sentences and it is easy to see why the illness would cause isolation. But I can compromise, in a few years it'll probably change again anyway. Ward20 (talk) 01:16, 3 March 2024 (UTC)

To me, the first paragraph is about symptoms, including the sentence about symptom severity. As such, the impact sentence doesn't fit there imo. The current paragraph is roughly 115 words, but we also need some words still to explain Orthostatic intolerance. I asked a lay person to proofread yesterday, and they found the entire paragraph too difficult. —Femke 🐦 (talk) 08:06, 3 March 2024 (UTC)

I'm OK with moving it. For simplifying the lead, I suggest a change in the second sentence from,

People with ME/CFS experience flare-ups of the illness or crashes following minor physical or mental activity. This is known as post-exertional malaise (PEM) and is the hallmark symptom of the illness.

to

People with ME/CFS often experience worsening of the illness following minor physical or mental activity, and is the hallmark symptom of the illness.

because flareups and crashes are terms that patients use more than the general readership IMO. Ward20 (talk) 18:57, 3 March 2024 (UTC)

maybe better,

The hallmark ME/CFS symptom is a worsening of the illness following minor physical or mental activity, and is known as post-exertional malaise (PEM)

Ward20 (talk) 19:41, 3 March 2024 (UTC)

After reading the NICE discussion on PEM, I'm leaning more towards omitting the term from the lead, and using the "extra words" to better describe PEM. NICE argues PEM is a poor word choice, as malaise does not properly capture the severity of PEM. They say PESE is better. So let me build on your second option. People with ME/CFS experience a delayed worsening of the condition after minor physical or mental activity, which forms the hallmark symptom of the illness. This would also address the request to make the lead easier to understand in the GAN. —Femke 🐦 (talk) 09:37, 9 March 2024 (UTC)

How about not linking it at all in the lead, and instead linking it in the Signs and symptoms section where is it described in more detail? Then we wouldn't have another mismatch with piping in the lead that User:Maxim Masiutin talked about. Ward20 (talk) 10:28, 9 March 2024 (UTC)

Those mismatches are allowed explicitly (per WP:PIPELINK), unless there is an WP:EGG situation, in which the reader is surprised by what's under the link. I think it's an important link. —Femke 🐦 (talk) 10:38, 9 March 2024 (UTC)

I agree. Maxim Masiutin (talk) 16:21, 9 March 2024 (UTC)

I tweaked and implemented the last proposal by —Femke 🐦. Ward20 (talk) 05:59, 11 March 2024 (UTC)

Then I'm confused about GA1[1],

"On wikilinks, please also try to avoid piped wikilinks in the lead, as they may be misleading in Wikipedia. For example the word "mechanisms" is linked, but the reader, when clicking it, goes to a Wikipedia article about "pathophysiology". Piped wikilinks should be avoided because ...they can create confusion for the reader. The reader might expect to be directed to a page that directly corresponds to the linked text, but instead, they are taken to a different page with a different title. This discrepancy can disrupt the reader's understanding and flow of reading. Instead, consider using direct links to the relevant Wikipedia articles. If the term "pathophysiology" is more accurate, use that term directly in the text and link it to its corresponding Wikipedia page. This way, the reader knows exactly what to expect when they click on a link: our goal is to make information as accessible and understandable as possible for all readers."

It seems like this would be included.Ward20 (talk) 10:56, 9 March 2024 (UTC)

You understand Maxim's argument correctly, but his comments don't correspond that well with the actual WP:manual of style around WP:PIPELINK. The guidelines only discourages piped links when they actually confuse readers, not a blanket discouragement of them. Examples in the MoS for this type of linking can be found in MOS:MORELINK. I don't think this proposed link misleads our readers (it's not an WP:EGG). —Femke 🐦 (talk) 11:08, 9 March 2024 (UTC)

Yes, piped wikilinks are not always bad, but they should be used with care, as Femke described. Maxim Masiutin (talk) 16:34, 9 March 2024 (UTC)

References

Removing lead citations?

At FAC, editors often prefer to omit citations from the lead. This makes the text easier to read, and citation aren't quite necessary per WP:LEADCITE. With a more controversial article like this, this is very much a trade-off, as the lead may be more subject to IP editing if there are not citations in the lead. What do you guys think? —Femke 🐦 (talk) 11:49, 3 March 2024 (UTC)

My preference would be to remove the double cited instances when possible, and also the cites for non-controversial material. I would leave cites on controversial material based on previous experience of editors tagging sentences based upon what they may have read about outdated medical opinions. Ward20 (talk) 19:11, 3 March 2024 (UTC)

Nice Recommendations [2]

The article presently cites this source about 20 times in about five different ways. I'm not sure what the best way of approaching this is for the good article nomination. Ward20 (talk) 00:38, 4 March 2024 (UTC)

For the good article nomination, this is okay. For the FAC, we'll need consistent citations. I think citing the pdf version is easiest, as we can use the page numbers then. —Femke 🐦 (talk) 08:08, 4 March 2024 (UTC)

The duration ... is unpredictable

@Ward20: the duration being unpredictable does not seem to be supported by the source. It even contradicts the next sentence that says recovery is rare. If recovery is rare, it follows that predictability about illness duration is high: you'll have a ~95% chance of being correct when you say it's lifelong.

I'm removing all the unnecessary MPDI and Frontiers journal articles. Some are useful to meet the comprehensiveness criterion, such as the EUROMENE one and the review on reproductive health and ME/CFS. We may get pushback at FAC when we rely on these journals too much, as sources are supposed to be high-quality reliable sources there. The 2021 Mayo Clinic source contains information about prognosis that supports the statement on recovery being rare. —Femke 🐦 (talk) 17:29, 4 March 2024 (UTC)

Thank you

@The Quirky Kitty, @Ward20, @Femke and everyone else who has improved this article. Although I don't feel I could review it properly I just wanted to thank you all for your hard work on this. As someone who has suffered from this mildly on and off for some time with very varying symptoms this article has helped me understand things I had no idea about back in the 90s. Thank you all very much. Chidgk1 (talk) 15:30, 5 March 2024 (UTC)

As someone who is very severe and quite familiar with the literature, I want to say thank you too. This article has progressed so much since last summer.

Also if you have any research questions I just want to point out that the science for ME forum has a lot of researchers and generally the most informed and scientific people in the community. :) YannLK (talk) 20:17, 5 March 2024 (UTC)

I really appreciate hearing that. When I started working on ME/CFS it was in a woeful state. It read like something written in 2011 with a few minor updates since then. There were still many hints of now-outmoded biopsychosocial research remaining. I made many updates, cleaned up the writing a bit, and added informative pictures. Femke's work has been truly outstanding, and I admire has ability to bring ME/CFS up to professional quality as well as the amount of time and effort he has put into it. The Quirky Kitty (talk) 04:34, 6 March 2024 (UTC)

Ah thanks guys :). It's probably the most difficult article I've worked on so far. Normally I edit articles around energy or climate change, where there is an overabundance of top-quality sources. In this topic, you see clearly how underfunded it is in the quality of sources. I hope we can attract a good reviewer for the GAN to bring the article closer to FA quality. I would love to see this on the Main Page. —Femke 🐦 (talk) 07:27, 6 March 2024 (UTC)

ps, I'm a "she", not a "he"  :). —Femke 🐦 (talk) 07:28, 6 March 2024 (UTC)

I've been busy IRL but I'd like to say that I also appreciate User:Femke leading the article improvement. Her accomplished and courteous editing style is also very much appreciated. Ward20 (talk) 18:44, 8 March 2024 (UTC)

@Chidgk1 Just chiming in to second this sentiment. I got hit with some sort of virus as a child in 1998 and it took well over 20 years to be diagnosed with ME. I've had to do a great deal of research in the years since and have familiarized myself with the biomedical findings and research and this article used to be a real sore point for me. I used to run into so many people online who would doubt ME/CFS was even real and cite the old "Chronic fatigue syndrome" page. The talk page used to be a nightmare too. This new version is exponentially better, it's absolutely fantastic work. 166.48.149.144 (talk) 15:53, 3 April 2024 (UTC)

Discussion of psychosocial risk factors in "viral infections" section

Currently we have the following text:

A systematic review found that fatigue severity was the main predictor of prognosis in CFS, and did not identify psychological factors linked to prognosis. Another review found that risk factors for developing post-viral fatigue or CFS after mononucleosis, dengue fever, or Q-fever included longer bed-rest during the illness, poorer pre-illness physical fitness, attributing symptoms to physical illness, belief that a long recovery time is needed, as well as pre-infection distress and fatigue. The same review found biological factors such as CD4 and CD8 activation and liver inflammation are predictors of sub-acute fatigue but not CFS.

This one paragraph is really out of line with the overall tone of the article (that ME/CFS is a serious medical condition) and goes way against the broader consensus. If we discuss this at all, we should say it's controversial. The Quirky Kitty (talk) 05:55, 6 March 2024 (UTC)

This is a difficult one. The source is slightly older than ideal (2017). However, I don't see many sources that directly contradict this paper. If you look at a paper that came out two days ago (Table 1, the LC-only entries), you see multiple predictive biological factors have been found for long COVID, making it likely that these will be found in ME/CFS. But no direct comparison or contradiction..

This contrasts with how we've dealt with the issue in different locations of the article:

• In the paragraph on onset in the cause section, we've given multiple sources for % of infectious onset. It's a bit messy, but doesn't put undue attention on the IoM numbers which included very low % too, which I guess are from BPS studies
• In the GET paragraph, we first have a statement on the clinical guidance (GET no longer advised), and then we delve deeper saying studies disagree on whether there is a small effect or no effect.

—Femke 🐦 (talk) 18:37, 6 March 2024 (UTC)

GA Review

The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

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This review is transcluded from Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/GA1. The edit link for this section can be used to add comments to the review.

Reviewer: Maxim Masiutin (talk · contribs) 15:30, 8 March 2024 (UTC)

Hello, Femke, Ward20 and The Quirky Kitty! Thank you for you work on the article and for nominating it.

I review the revision 1212410967 https://en.wikipedia.org/w/index.php?title=Myalgic_encephalomyelitis/chronic_fatigue_syndrome&oldid=1212410967

On references, the reference for PMID 28033311 is duplicated: one with name "r", another with name "pmid28033311", but even the quote is the same in both ("The highest prevalence of illness is in persons aged 40–50 years...")

On date format, please consider consistent date format use in citations, i.e. the dates formatted according to the "DMY" (Day Month Year) style that you selected. While most of the dates are in the DMY format, such as "22 February 2024", there are a few instances of the YYYY-MM-DD format (an ISO 8601 format): "2024-04-02", "2011-06-01", "2024-02-22".

The use of references in the lead is not consistent: either all claims in the reference should be backed up by references, or no references at all should be used in the lead, in this case the lead should repeat all the claims made in the body where they are referenced. The first paragraph in the lead does not have any reference (while the other paragraphs have references). This paragraph does not have references: "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating long-term medical condition. People with ME/CFS experience flare-ups of the illness or crashes following minor physical or mental activity. This is known as post-exertional malaise (PEM) and is the hallmark symptom of the illness."

On lead size in paragraphs: the lead should have at most 4 paragraphs, while technically the lead has 5 paragraphs.

While I'm all up for a four-paragraph lead, the actual guidance is more flexible: WP:LEADLENGTH. If the lead remains manageable, an occasional 5-paragraph lead is okay if that works better with organisation. For instance, if you have 5 distinct topics to work with. —Femke 🐦 (talk) 11:19, 9 March 2024 (UTC)

Don't worry, I got it down to 4 paragraphs. The Quirky Kitty (talk) 13:20, 9 March 2024 (UTC)

On grammar, in the first paragraph of the lead there is the following text: "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating long-term medical condition. People with ME/CFS experience flare-ups of the illness or crashes following minor physical or mental activity. This is known as post-exertional malaise (PEM) and is the hallmark symptom of the illness.", but it may be unclear what "This" in the last sentence refers to; please consider rewriting the sentence/paragraph to remove the unclear reference. The pronoun "This" in the last sentence could refer to either "flare-ups of the illness or crashes" or "minor physical or mental activity", which can cause confusion. Here's a possible rewrite to clarify the reference: "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating long-term medical condition. People with ME/CFS experience flare-ups of the illness or crashes. These symptoms, known as post-exertional malaise (PEM), typically follow minor physical or mental activity and are the hallmark symptom of the illness." In this revised version, "These symptoms" clearly refer to "flare-ups of the illness or crashes," and it's specified that they follow minor physical or mental activity. This should eliminate any ambiguity.

Also, there are spelling errors:

1. "unavaible" (sic),
2. use of curly apostrophe instead of the straight one in violation of the Manual of style ("people’s")
3. "targetting" -- is it a British spelling? Does the article uses British or American English? Please consider using either British or American English and declare which one did you use via a template, such as {{Use American English|date=March 2024}}

On wikilinks, please also try to avoid piped wikilinks in the lead, as they may be misleading in Wikipedia. For example the word "mechanisms" is linked, but the reader, when clicking it, goes to a Wikipedia article about "pathophysiology". Piped wikilinks should be avoided because …they can create confusion for the reader. The reader might expect to be directed to a page that directly corresponds to the linked text, but instead, they are taken to a different page with a different title. This discrepancy can disrupt the reader’s understanding and flow of reading. Instead, consider using direct links to the relevant Wikipedia articles. If the term "pathophysiology" is more accurate, use that term directly in the text and link it to its corresponding Wikipedia page. This way, the reader knows exactly what to expect when they click on a link: our goal is to make information as accessible and understandable as possible for all readers. I also found wikilinks on terms mold and pregnancy, which are probably the commonly understood terms and should not be wikilinked. There are no specific dictionary on which terms are considered commonly understood by a broad audience, but generally, terms that are part of everyday language or basic education are considered common knowledge. For instance, words like "water", "book", and so on, are universally understood and do not require wikilinks. However, the decision to wikilink a term can also depend on the context and the intended audience of the text. If the text is intended for a specialized audience, such as a scientific research paper, it might be appropriate to wikilink terms that are common in that field but not necessarily understood by the general public. In the case of "mold" and "pregnancy", while these terms are generally understood, they may or may no encompass broad topics with many subtopics that readers might or might not want to explore further. Therefore, wikilinking them could or could not provide valuable additional information to the reader: I am not sure about that, I just raised my concerns of these words, ultimately, the decision to wikilink a term should be guided by whether it enhances the reader’s understanding of the text, as it is always a good idea to consider the potential benefits to the reader and balance them against the risk of overloading the text with unnecessary links.

On the terms in the lead that are hard to understand: the word "pathophysiology" may not be understood by a general audience, it might be beneficial to provide a brief, simplified explanation of the term within the article (you can refer to review PMID: 37838675 when adding details on pacing). You can make explanations for specific terms, making them easier to understand, in parentheses immediately after the term is first used, or a synonym can be used instead that can be easier to understand, even a few simpler words that aim to have the same meaning. Also, there is a term "orthostatic intolerance" is used in the lead without immediate explanation or clarification on what is it: this is a medical term that might be difficult for some readers to understand. Also, there are terms: "Pacing and activity management", which, in the context of ME/CFS, refer to specific strategies for managing the condition, however, they might not be clear to all readers, as they are not immediately explained.

On clinicians' awareness, it is mentioned in the article that clinicians may be unfamiliar with ME/CFS, as it is often not covered in medical school, still, there is no official disease in the international classification of diseases such as ICD-10 or ICD-11, therefore, the question arises on why do the clinicians have to know about the disease if it is does not officially exists in the ICD? It is not explicitly mentioned in the article that ME/CFS as a disease exists (described) in peer-reviewed literature, and there are clinical practice guidelines or similar documents, for example, the CDC provides information for healthcare providers on ME/CFS, including assessment, managing symptoms, and providing other supportive strategies to improve patients’ quality of life: https://www.cdc.gov/me-cfs/healthcare-providers/index.html ; besides that, the National Health and Medical Research Council (NHMRC) in Australia recommended updating the Australian clinical guidelines and selected three international guidelines for interim use, as described by ME/CFS South Australia Inc, a Registered Charity: https://mecfssa.org.au/resources/clinical-guidelines-including-diagnostic-criteria ; also the National Institute for Health and Care Excellence (NICE) in the UK has guidelines for diagnosing and managing ME/CFS in children, young people, and adults: https://www.nice.org.uk/guidance/ng206 ; also the US ME/CFS Clinician Coalition provides resources for medical providers caring for people with ME/CFS: https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/index.html ; therefore, in the case of conditions like ME/CFS that are not included in the ICD, information can often be found in scientific literature, clinical case reports, and guidelines or consensus documents published by professional organizations, so that clinicians can also learn from their colleagues' experiences and from patients themselves; the absence of a condition from the ICD does not mean it doesn't exist or is not valid, as provided by the documents mentions; the ICD is updated periodically, and conditions can be added as more is learned about them and as their recognition in the medical community grows -- this can be the explanation why the clinicians should be aware of ME/CFS, i.e. this information may serve grounds for the imperative for the clinicians to be aware of this condition, as I said earlier, while the lack of formal education and recognition in the ICD can make it more challenging for clinicians to learn about conditions like ME/CFS, there are still many resources available for those who seek to understand and help their patients with these conditions and that it underscores the importance of continuous learning in the medical profession. Please consider adding these clinical practice guidelines in the article as grounds for the clinicians to know about this disease.

A statement such as "ME/CFS is real" is not neutral imo, as it uses the frame of a disease which may not exist. Compare with a statement such as "climate change is real", which you see in click-baity news articles. In the scientific literature on climate denial, this is considered poor science communication, as this pre-supposed there is a (valid) disagreement on the existence of climate change.

The literature on ME/CFS clearly says ME/CFS is included in the ICD, even though it's included under the two subparts of the name. We already mention the NICE guidelines and the CDC in the next. The fact we refer to these guidelines already implies they exist, it is unnecessary to include more explicit sentences. —Femke 🐦 (talk) 11:02, 9 March 2024 (UTC)

On broad coverage of the topic: please consider explaining the link between Post-Infectious Neurological Syndromes (PINS) and ME/CFS. Post-Treatment Lyme Disease (PTLD), among others. Is ME/CFS a type of PINS or they are separate independent diseases? If ME/CFS is a type of PINS with Epstein-Barr virus often as a trigger? This virus, and the long covid were mentioned in the Viral infections subsection, but not the notion of Post-Infectious Neurological Syndromes (PINS). Please consider explaining this notion.

I hadn't heard of PINS before today; none of the sources I'm aware of describe ME/CFS as a PINS, even though post-infectious ME/CFS might be one. I didn't find any sources when I searched PINS and ME/CFS together on PubMed, or when searching ME/CFS and "Post-Infectious Neurological Syndromes", using the standard filters (<5 years, reviews). Therefore, I do not believe it WP:DUE. We embarrasingly don't have an article on PTLDS, only on chronic Lyme (which is basically the same, except people who use the term believe in ineffective treatments..). I've added a paragraph to the classification section explaining the link with post-acute infection syndromes, which also encompasses PTLDS and long COVID. Hope that addresses your point. —Femke 🐦 (talk) 11:58, 9 March 2024 (UTC)

Please also consider mentioning whether study long COVID may contribute to understanding of ME/CFS, and vice versa, in the section on the research direction, if that is covered by significant sources, such as reputable reviews.

The article is verifiable, it contains no original research, no copyright violation and no plagiarism, it is broad in coverage, by addressing the main aspects of the topic, it stays focused on the topic, it is neutral, stable and properly illustrated.

However, I have concerns on whether the lead section is easily understandable by a broad audience, and whether it complies on the Manual of Style in some instances I mentioned earlier. Looking forward for your reply.

Maxim Masiutin (talk) 19:46, 8 March 2024 (UTC)

Thanks for the review. Really appreciate the comments that exceed the GA criteria, as we're slowly prepping for FA. I'm a bit ill at the moment, but hope to make a proper start tomorrow.

ME/CFS is included in the ICD, and has been since 1969. What in the text makes you believe it isn't? The fact that ICD-10 didn't have the code for CFS, only for ME? —Femke 🐦 (talk) 20:12, 8 March 2024 (UTC)

My comments fit the GA criteria in part, and exceed in part: for example, comments on grammar or manual of style fit the GA criteria, while other comments such as on completeness do not prevent the article from complying to the GA criteria, however, the GA criteria mention that the article should be broad in its coverage (it addresses the main aspects of the topic), and there is wide margin on appreciation, one reviewer may consider some information sufficient while another reviewer may consider the same information insufficient, however, there should be common sense, and we should keep in mind that the GA review is a lightweight process, still, important topics should be covered. If you state that ME/CFS is included in the ICD, and has been since 1969, please specify that in the article and give reliable sources, as the article currently states the following (quote): "In the ICD-10, only (benign) ME was listed, and there was no mention of CFS." Besides that, the article lists the following: "ME/CFS has been classified as a neurological disease by the World Health Organization (WHO) since 1969, initially under the name benign myalgic encephalomyelitis. Even though the cause of the illness is unknown, symptoms indicate a central role of the nervous system. Alternatively, based on abnormalities of immune cells, it has been classified as a neuroimmune condition. In the WHO's most recent classification, the ICD-11, both chronic fatigue syndrome and myalgic encephalomyelitis are listed under the term post-viral fatigue syndrome. They are classified as other disorders of the nervous system." Therefore, the article does not mention that the exact name "Myalgic encephalomyelitis/chronic fatigue syndrome" is classified in the ICD. The scientific articles and clinical practice guidelines list explicit sequence of 5 words "Myalgic encephalomyelitis/chronic fatigue syndrome", but not the ICD. Maxim Masiutin (talk) 20:25, 8 March 2024 (UTC)

Hello, Femke, Ward20 and The Quirky Kitty, the GA maintenance bot is not fully running today, see may be running at erratic times today Maxim Masiutin (talk) 20:13, 8 March 2024 (UTC)

Thanks for looking at the article. I'm going through some of the simpler fixes right now. As for citations in the lead, let's include them. This is a medical article and many aspects of the disease have been disputed. The Quirky Kitty (talk) 03:51, 9 March 2024 (UTC)

@The Quirky Kitty if you wish to keep them, please add a citation for the first paragraph that lacks citations. Maxim Masiutin (talk) 07:05, 9 March 2024 (UTC)

I did that, and couldn't find any other uncited statements. The Quirky Kitty (talk) 07:33, 9 March 2024 (UTC)

Thank you! I did minor edits to my initial review: they don't alternate the meaning, and are mostly technical. Maxim Masiutin (talk) 07:37, 9 March 2024 (UTC)

I saw that in the words that differ between British and American spelling, there were more British-spelled words, so I put the template to use British English and replaced the American-spelled words to their British counterparts. According to WP:GAN/I#R3, "In the case of a marginally non-compliant nomination, if the problems are easy to resolve, you may be bold and fix them yourself." Maxim Masiutin (talk) 08:00, 9 March 2024 (UTC)

I see that you resolved all the significant issues except the use of the following complex terms in the lead:

1. pacing and activity management
2. orthostatic intolerance

MOS:INTRO states the following: Make the lead section accessible to as broad an audience as possible. Where possible, avoid difficult-to-understand terminology, [...] Where uncommon terms are essential, they should be placed in context, linked, and briefly defined. The subject should be placed in a context familiar to a normal reader. Maxim Masiutin (talk) 08:09, 9 March 2024 (UTC)

I fixed that shortly after you sent this message. Femke addressed several more of your concerns, and I'm seeing what else I can fix up. The Quirky Kitty (talk) 13:18, 9 March 2024 (UTC)

The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

Better explanation of symptoms

There is a sentence that is not easy to understand, I suggest you find a way to improve it, I mean the following sentence:

"Symptoms triggered by sitting or standing up, memory and concentration problems, and pain are common."

This sentence is not specific enough. It is unclear what symptoms are being triggered by sitting or standing up. A more precise sentence would specify the symptoms that occur upon standing or sitting up, such as dizziness or fainting. For example, "Symptoms like dizziness triggered by sitting or standing up, memory and concentration problems, and pain are common". This provides a clearer picture of the condition being described.

I have another idea: "Symptoms such as dizziness that worsens with moving from lying down or sitting to standing, problems with memory or thinking skills, and pain are common".

What do you think?

I decided to discuss this topic outside the scope of the GA review, because there is always limitless ways to improve an article. Maxim Masiutin (talk) 16:30, 9 March 2024 (UTC)

Or even a better version that has better flow: " "Symptoms such as dizziness that worsens with moving from lying down or sitting to standing, problems with memory or thinking skills, and pain are common in ME/CFS." Maxim Masiutin (talk) 16:31, 9 March 2024 (UTC)

Better like this? The orthostatic intolerance can happen when people sit up, not only stand up. —Femke 🐦 (talk) 16:37, 9 March 2024 (UTC)

You can describe it better, I just spotted a sentence that was not very good because the ""Symptoms triggered by ..." was unclear in regards to what symptoms were meant. Maxim Masiutin (talk) 19:19, 9 March 2024 (UTC)

I went to the page and found the sentence "Further common symptoms include dizziness or nausea when sitting or standing up, along with memory and concentration issues, and pain." which is much better than it was before, thank you! Maxim Masiutin (talk) 19:21, 9 March 2024 (UTC)

Nitpick here. I believe "standing" is a better word than "standing up" in this case. "Standing up" often means rising to one's feet rather than standing still. As I recall, the objection to "standing" was that it could also mean "walking", but I have rarely seen "standing" used in that way. "Standing" seems to be better defined as a stationary position.[3] The citation[4] uses "standing", not "standing up", and in another source,[5] "In up to 95% of those with ME/CFS, an immobile, upright position (eg, prolonged standing or sitting will cause or worsen symptoms.)" Ward20 (talk) 20:37, 9 March 2024 (UTC)

Ah, I hadn't thought of it like that. I take your point that standing up is not ideal here. I was maybe thinking too much of POTS, which is a change in heart rate when you go from lying/sitting to standing. —Femke 🐦 (talk) 08:43, 10 March 2024 (UTC)

I think it looks good. I was the one who changed "orthostatic intolerance" to "symptoms when sitting or standing" but I don't mind adding an explanation as well. My goal was to respond to your GA feedback quickly, not reach absolute perfection. The Quirky Kitty (talk) 11:52, 10 March 2024 (UTC)

DYK suggestions

We're allowed one sentence on the front page at WP:DYK, @The Quirky Kitty & @Ward20. What would you guys like to highlight? A few options, but I'm not good in finding interesting things:

Did you know that..

• ... the emergence of long COVID has sparked increased interest in myalgic encephalomyelitis/chronic fatigue syndrome?
• ... many people with long COVID develop myalgic encephalomyelitis/chronic fatigue syndrome?
• ... some people with severe myalgic encephalomyelitis/chronic fatigue syndrome can lose the ability to speak?
• ... that per healthy life year lost, research funding for myalgic encephalomyelitis/chronic fatigue syndrome is only 3-7% of what the average condition gets?

—Femke 🐦 (talk) 18:12, 9 March 2024 (UTC)

The second bullet point by far. Ward20 (talk) 20:40, 9 March 2024 (UTC)

Either 2 or 4. However 4 feels a bit preachy. Like we're advocating for increased funding. I don't think that's the purpose of DYK. The Quirky Kitty (talk) 08:17, 10 March 2024 (UTC)

I've done 2, 4, 3, in that order :). Thanks for the input! —Femke 🐦 (talk) 08:50, 10 March 2024 (UTC)

Lead, illness impact material

Two sentences switched position here.[6],but I think the material flowed better previously with the more generalized sentence proceeding the more specific one that gives an example of how and why the generalized sentence is relevant. Ward20 (talk) 00:03, 10 March 2024 (UTC)

I think the severity sentence can be in multiple locations, but for me it makes more sense after another sentence on severity. If we remove the "yeah duh" part of the social isolation sentence (i.e. it impacts health), it fits better in the last paragraph on social impact. Would that work for you? —Femke 🐦 (talk) 08:27, 10 March 2024 (UTC)

I want to think about it a bit more. I think a sentence in the lead should plainly state how poor the quality of life is for most people. And it shouldn't be overly or unduly dramatic either. Ward20 (talk) 01:08, 11 March 2024 (UTC)

Changes for easier reading and better understanding by a broad audience

I made a few changed for easier reading and better understanding by a broad audience, without altering the meaning. Some changes are related to replacing piped wikilinks links to simple "as is" wikilinks, as it usually makes reading easier and understanding easier. If you don't like particular changes, feel free to restore how the content was, however, please keep in mind that we write for general audience, not for health care professionals. Thank you! Maxim Masiutin (talk) 01:00, 10 March 2024 (UTC)

Ward20, as you see, removing piped wikilinks and replacing them to simple wikilinks without pipe is not a panacia, but it is a good practice and in many cases it can make understanding of things easier. In this particular case, it was a sentence "The 1994 CDC criteria, sometimes called the Fukuda criteria...." and when I click to this wikilink to find more about this criteria, I got to the page on Keiji Fukuda and there were no single word about this criteria. So I changed the sentence to "The 1994 CDC criteria, sometimes called the Fukuda criteria (named after Keiji Fukuda, an epidemiologist)" and things became much more clearer and straigforwad, don't you think so? Please let me know what you thing? I made the similar on retroviral drugs and retroviruses. Your opinion on my changes are very appreciated. I read The Economist newspaper from time to time, the "Science and technology section", and they are very good on explaining complex things in simple language, so I made those changes in a similar way. They had a recent article related to ME/CFS when they described complex things very clearly, see https://www.economist.com/science-and-technology/2024/02/21/long-covid-is-not-the-only-chronic-condition-triggered-by-infection Maxim Masiutin (talk) 01:32, 10 March 2024 (UTC)

Yes, I did see that the changes made the material easier to understand, flow much better and the links make more sense. I didn't notice anything in the changes that weren't improvements. Thanks. Ward20 (talk) 02:11, 10 March 2024 (UTC)

Co-nomination

I know that two people were GA co-nominators; I don't know how this will be handled/counted, I just used regular GA review workflow. Maxim Masiutin (talk) 01:02, 10 March 2024 (UTC)

Nothing extra to do here. Co-nominations are not counted officially. —Femke 🐦 (talk) 07:08, 10 March 2024 (UTC)

PINS

The post-infections neurological syndrome (PINS) which is a relative condition to ME/CFS is mentioned in the following reviews:

1. PMID 26620160
2. PMID 9103874

You may also find some information in the following research studies:

1. doi:10.1212/WNL.0b013e3182840b95
2. doi:10.1177/1756286420952
3. doi:10.1186/s13052-021-00968-y
4. doi:10.1007/s13365-020-00941-1
5. doi:10.1212/01.wnl.0000179302.93960.a
6. doi:10.1016/j.jinf.2009.02.011

All these studies may contribute to the completeness of the article on ME/CFS, because ME/CFS is supposed to be a neurological disorder caused by neuroinflammation after an infection.

Also, there are some drugs that supposedly reduce neuroinflammation, such as modafinil. Many scholars belive that modafinil indeed reduced neuroinflammation, however, they mostly refer to an invitro lab experiments, still a study PMID 16272188 suggests that chronic modafinil may not be beneficial in patients with chronic fatigue syndrome, but there are other causes by chronic fatigue syndrome, not just ME.

So, thank you for working on this article, this is a very important topic and research on this topic will bring significant benefits. Maxim Masiutin (talk) 01:44, 10 March 2024 (UTC)

The recent review does not mention myalgic encephalomyelitis (it's about acute disseminated encephalomyelitis & variants). The 1997 review I can't access, but is from 1997. I do not believe this to be due still. —Femke 🐦 (talk) 08:24, 10 March 2024 (UTC)

Indeed, there is no clear explicit link between PINS and ME/CFS in the medical literature, I tried to find but didn't find a solid link. The only more or less solid link was in the Economist which is a weekly newspaper, not a peer-reviewed jounal: Many researchers suspect, for example, that what is variously labelled chronic-fatigue syndrome or myalgic encephalomyelitis (ME) is such a post-infectious neurological syndrome (PINS). However, a suggestion that Epstein-Barr virus is the trigger has never been nailed down. Much remains mysterious about the condition itself, and, with at least nine different proposed definitions, it may well be that the umbrella term encompasses different conditions with overlapping symptoms and varied causes. https://www.economist.com/science-and-technology/2024/02/21/long-covid-is-not-the-only-chronic-condition-triggered-by-infection -- this is an article from February 21, 2024.

There are a few peer-reviewed article where both terms (PINS and ME/CFS) exist, but they exist in different paragraphs and are not explicitly linked correctly, and we should not speculate. There are more articles exists where PINS is mentioned, but without ME/CFS, so we should not make our own conclusions. Therefore, let us avoid describing PINS until we get a solid article with explicit link Maxim Masiutin (talk) 11:04, 10 March 2024 (UTC)

Did you know nomination

The following is an archived discussion of the DYK nomination of the article below. Please do not modify this page. Subsequent comments should be made on the appropriate discussion page (such as this nomination's talk page, the article's talk page or Wikipedia talk:Did you know), unless there is consensus to re-open the discussion at this page. No further edits should be made to this page.

The result was: promoted by PrimalMustelid talk 16:51, 8 April 2024 (UTC)

(

• Comment or view
• Article history

)

• ... that many people with long COVID develop myalgic encephalomyelitis/chronic fatigue syndrome? Source: https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_abschlussbericht_v1-0.pdf, p.228
  • ALT1: ... that per healthy life year lost, research funding for myalgic encephalomyelitis/chronic fatigue syndrome is only 3-7% of what the average condition gets? Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8290307/
  • ALT2: ... that some people with severe myalgic encephalomyelitis/chronic fatigue syndrome can lose the ability to speak? Source: https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021 (page 50)
  • Reviewed: Template:Did you know nominations/Chelymorpha alternans

Improved to Good Article status by Femke (talk), Ward20 (talk), and The Quirky Kitty (talk). Nominated by Femke (talk) at 08:49, 10 March 2024 (UTC). Post-promotion hook changes for this nom will be logged at Template talk:Did you know nominations/Myalgic encephalomyelitis/chronic fatigue syndrome; consider watching this nomination, if it is successful, until the hook appears on the Main Page.

• I will review this. NW1223<Howl at me•My hunts> 20:40, 11 March 2024 (UTC)

General: Article is new enough and long enough
New enough: Long enough:

Policy: Article is sourced, neutral, and free of copyright problems
Adequate sourcing: Neutral: Free of copyright violations, plagiarism, and close paraphrasing:

Hook: Hook has been verified by provided inline citation
Cited: Interesting:

QPQ: Done.

Overall: Overall a good read. NW1223<Howl at me•My hunts> 19:10, 15 March 2024 (UTC)

Either hook is good. NW1223<Howl at me•My hunts> 19:18, 15 March 2024 (UTC)

We are in WP:QPQ backlog mode. Double reviews are required.-TonyTheTiger (T / C / WP:FOUR / WP:CHICAGO / WP:WAWARD) 07:03, 17 March 2024 (UTC)

TonyTheTiger, according to https://qpqtool.toolforge.org/qpq/Femke, Femke has made nine DYK nominations, so she does not need an extra QPQ. TSventon (talk) 14:11, 17 March 2024 (UTC)

Double QPQ is not required. This nomination is good to go. NW1223<Howl at me•My hunts> 18:12, 17 March 2024 (UTC)

Yes, the QPQ check tool to the right counts only 9. I don't really trust the QPQ tool that much because it barely counts 40% of my own nominations. But If the nominator feels that they have done less than 20 noms this can go forward or they can do the double. This case is on the honor system.-TonyTheTiger (T / C / WP:FOUR / WP:CHICAGO / WP:WAWARD) 18:48, 17 March 2024 (UTC)

I don't see an obvious one missing on the list, but will help with the backlog when I've got some time to spare. —Femke 🐦 (talk) 19:03, 17 March 2024 (UTC)

The tool gives a complete list of the nominations made by Femke since she started editing in 2014. It does not pick up nominations made before 2011, but that is not relevant here. TSventon (talk) 20:11, 17 March 2024 (UTC)

Perplexing data taken from various reviews enumerating them all

Please consider stating the facts from reliable sources rather than listing reviews or metaanalysis or CDC publications. It is hard to understand from long enumerations of reviews on what is the real picture. If the reviews are vague, don't put the data (delete that data from risk factors), if the reviews are clear, simply state that facts affirmatively without any mentioning. This article almost came up to the limits, but there are articles with even bigger lists of reviews, and from this list it is hard to understand the truth. It is better to put less data which is unambigous (such as CDC data only, for example) then to list data that is hard to compare, such as White Americans have higher rist than Hispanics but Native Americans have higher risk so it is not clear on how White Americans compare to Native Americans and which of these two ethnic groups among them have higher risk. Giving perplexing information especially on risk may de dangerous on its own:

Consider removing this:

All ages, ethnic groups, and income levels are susceptible to the illness. The CDC states that while White Americans may be diagnosed more frequently than other races in America,[45] the illness is at least as prevalent among African Americans and Hispanics.[20] A 2009 meta-analysis found that Asian Americans have a lower risk of CFS than White Americans, while Native Americans have a higher (probably a much higher) risk and African Americans probably have a higher risk. The review acknowledged that studies and data were limited.[46]

More women than men get ME/CFS.[45] A large 2020 meta-analysis estimated that between 1.5 and 2.0 times more cases are women. The review noted that different case definitions and diagnostic methods within datasets yielded a wide range of prevalence rates.[10] The CDC estimates ME/CFS occurs up to four times more often in women than in men.[20] The illness can occur at any age, but has the highest prevalence in people aged 40 to 60.[20] ME/CFS is less prevalent among children and adolescents than among adults.[47]

Instead, write facts with no mention on reviews, such as that (it is just an example, but agree that it is easier to understand and is not as perplexing as the initial version):

ME/CFS is an illness that can affect anyone, regardless of age or income. It’s found among all ethnic groups. However, it’s most commonly diagnosed in Native Americans, followed by White Americans, further followed by African Americans and Hispanics, and finally followed by Asian Americans who are less likely to have it,[20][45] however, this data is preliminary and its accuracy is low, the risk rank amongh ethnic groups may change on eventual larger studies[46]

The prevalence of ME/CFS is higher in women than in men, with estimates ranging from 1.5 to up to 4 times more common in women, depending on the study[10][20], anyway, there is consensus in academic community that women are definitely having higher risk of developing ME/CFS than men [45]. The illness can occur at any age, but it is most common in people aged 40 to 60.[20] ME/CFS is less common among children and adolescents than among adults.[47]

We should not give undue burdeon to the reader on connecting all the dots between a bunch or reviews that we put on the reader :-) Maxim Masiutin (talk) 17:38, 10 March 2024 (UTC)

I've replaced the 2009 review with a 2020 review, as the 2009 review had a definition of CFS quite unlike current definitions (i.e. including Oxford and including chronic fatigue without exploring alternative diagnoses). The statement is weaker (maybe poor people get it more..), but then, the research on this is weak. Also getting a less US-centric approach :). —Femke 🐦 (talk) 17:51, 11 March 2024 (UTC)

In viral infections

Instead of A systematic review found that fatigue severity was the main predictor of prognosis in CFS, and did not identify psychological factors linked to prognosis. Another review found that risk factors for developing post-viral fatigue or CFS after mononucleosis, dengue fever, or Q-fever included longer bed-rest during the illness, poorer pre-illness physical fitness, attributing symptoms to physical illness, belief that a long recovery time is needed, as well as pre-infection distress and fatigue. The same review found biological factors such as CD4 and CD8 activation and liver inflammation are predictors of sub-acute fatigue but not CFS. consier this: Fatigue severity is a predictor of prognosis in CFS. Psychological factors are not linked to the prognosis of CFS. Risk factors for developing post-viral fatigue or CFS after mononucleosis, dengue fever, or Q-fever include longer bed-rest during the illness, poorer pre-illness physical fitness, attributing symptoms to physical illness, belief that a long recovery time is needed, as well as pre-infection distress and fatigue. The biological factors such as CD4 and CD8 activation and liver inflammation are predictors of sub-acute fatigue but not CFS. I can implement changes related to those that I mentioned in "In viral infections" and "Perplexing data taken from various reviews enumerating them all" subsections. Maxim Masiutin (talk) 17:42, 10 March 2024 (UTC)

The thing is that the two reviews contradict each other: one said psychological factors are not linked, the other says they are, namely: "attributing symptoms to physical illness / belief that a long recovery time is needed, distress". While the latter can be explained by Occams razor as simply reflecting a correct belief from the people with a viral infection, that's not how the authors explain it. The "psychology is important" group most likely reflects a minority opinion. The difficulty is to write this in such a way that it correctly identifies this as a minority opinion, as I'm unaware of any sources that explicitly cover this.

We should definitely do something about this paragraph, but I have no clue what. —Femke 🐦 (talk) 20:06, 10 March 2024 (UTC)

In this case, I suggest you to write in a way that the reader will be able to understand it easier, for example, studies concluded that XXXX but theere is still no consensus on whether YYYY is ZZZ or PPPP (and give proper references) - we don't know to explicitly name studies such as "A 2020 review..." we can simply make a cotext wikilink and it should be enough. Maxim Masiutin (talk) 20:34, 10 March 2024 (UTC)

How to do this without giving a false balance, however? I think we need to find better sources before we can write this properly.. —Femke 🐦 (talk) 20:41, 10 March 2024 (UTC)

@Femke yes, you are right Maxim Masiutin (talk) 20:46, 10 March 2024 (UTC)

That paragraph is very problematic because it's at great tension with the rest of the article. We rewrote the article to reflect the biomedical consensus, but then there's this little paragraph suggesting that a serious multisystem disease is caused by "attributing symptoms to physical illness." It's very awkward. And that source has some problems:

• They seem to treat fatigue and CFS as the same thing, when the current consensus is that they're different.
• Due to the paper's age, much of what they cite would use older, less specific criteria for ME/CFS
• No major sources even mention psychosocial risk factors or prognostic indicators.

Considering these factors, I don't know if this source has any value for us. If we mention psychosocial risk factors at all, we need to put heavy caveats on it and never use Wikivoice. The Quirky Kitty (talk) 15:26, 13 March 2024 (UTC)

My main idea was not to mention "in that review" or "in this review" because it gives additional burdon to the reader with no reader. Try to state affirmatively the facts from these review. If these facts are not clear, say so. Maxim Masiutin (talk) 15:34, 13 March 2024 (UTC)

Upon reflection, I think you're rigth. More up-to-date papers really indicate different risk factors for what they used to call CFS (now severe fatigue), and ME/CFS: https://www-nature-com.wikipedialibrary.idm.oclc.org/articles/s41598-023-29329-x. The review only included prospective studies (good), which meant their conclusions were based on very few studies, as most ME/CFS research is of poor quality due to funding issues.. Better to omit than to add complications here. I also didn't want to draw upon a 2009 paper to provide balance.. —Femke 🐦 (talk) 17:27, 13 March 2024 (UTC)

Lead image

The lead image is not great. I see the following disadvantages:

1. It's not accessible/readable. There is too much text
2. It contains so much detail that we don't even discuss is in the body, nevermind the lead. There is little use in teaching readers about Australian or Oxford criteria, as both have been retired for while.

I've not been able to find a good alternative on Commons, but I'm willing to make one in Inkscape if you guys are open to changing the lead image. I see the following options:

1. No image in lead

2. 

   A list of symptoms using the annotated upper torse of a women. This is tough as most core symptoms are of course systemic / brain ones. An example would be [7]. I would adjust these to be in line with the list of symptoms HQRS mention, so for instance not including sex drive or vision problems, but include joint pain instead. There is an example for fibro, even though I don't quite understand the difference between central and systemic they included. Compared to the fibro case, I would propose we include fewer symptoms.
3. An image using NICE or IOM criteria. NICE will be easier as 4 symptoms is easier to visualise than 3+2. This could be something with only words, or something with easy icons like [8], but I would propose we use names too.

—Femke 🐦 (talk) 09:13, 16 March 2024 (UTC)

I agree the Image of the definitions in the info-box space is too busy to easily read. Although, I think that image could be enlarged and located appropriately in the body.

I don't have strong preferences, but I'll put out a few thoughts about the info-box and the possible image in it.

• The long list of alternate names at the beginning of the infobox adds to the complexity. It might be better to just add a link to those, or just add Post-viral fatigue syndrome and then link to the others.

I Google searched ME/CFS images, graphs and charts.[9][10] and found the following types of images to be the most interesting. They don't have to be from the data shown, and are in no particular order:

• A simple balloon depiction of the diagnostic symptoms, either CDC or NICE.[11]
• Awareness ribbon.[12]
• By sex.[13]
• Disease burden Fig.1.[14]
• Funding disparity Fig.4.[15]

Ward20 (talk) 05:52, 19 March 2024 (UTC)

Oh, I rather like that balloon depiction. Which would be in line with Femke’s suggestion #3. I think displaying that information concisely would really serve the reader who’s encountering all this for the first time. Innisfree987 (talk) 06:44, 19 March 2024 (UTC)

I'll make two (ugly) paint mock-ups with the balloons with and without some type of icon. I like icons, but I do realise that the choice of them is rather subjective. —Femke 🐦 (talk) 17:32, 19 March 2024 (UTC)

Thank you so much for doing that! Innisfree987 (talk) 18:39, 19 March 2024 (UTC)

Yes. —Femke 🐦 has done a great job leading the effort and put in a lot/most of the work to overhaul the article. Ward20 (talk) 22:37, 19 March 2024 (UTC)

Ugly paint drawing - first attempt

Ugly first draft

My first attempt would be the following. Don't respond to the "design bit" yet. . I would like feedback on:

1. The choice of images. PEM is particular is very broad. I've gone back to the initial ME description by Ramsay focussing on the muscle part of PEM (muscle fatiguability with long restoration time). I think I'd prefer a bed instead of zzz, but was lazy. Brain fog images online often have a cloud in the brain, but that depicts dreaminess for me.
2. The choice of words. Two ones I'm least sure about:
   1. Severe fatigue --> It may weaker than debilitating fatiguability that NICE uses, but that's horrible jargon
   2. Worsening after activity --> PEM is a poor word choice for PESE, and jargon. I think this captures it best in 3 words or less..

If I fail in Inkscape myself, I may see if I can introduce a friend to Wikipedia who is a graphic designer to make something better; maybe in the style inspired by the Cleveland clinic. —Femke 🐦 (talk) 19:59, 20 March 2024 (UTC)

I think worsening after activity is a pretty good way to dejargon PEM/PESE! Could severe fatigue be something like easily fatigued? Just brainstorming, not wedded. I realize it’s not a noun tho. And maybe understates the case. Innisfree987 (talk) 22:48, 20 March 2024 (UTC)

Rather than use the battery icon with fatigue, I would use it with "reduced ability or function". Fatigue is one thing, but the overall illness impact on the "significant reduction of functional ability" is more important IMO. That is a major criteria in both CDC and NICE and fatigue is kind of tacked on after. Could also use lasting or lengthy as a further modifier?

Alternatly, brainstorming: "debilitating fatigue" or "overwhelming fatigue" or "profound fatigue" or "draining fatigue" or "exhausting fatigue" or "exhaustion" or "debilitating exhaustion". Could also use lasting or lengthy as a further modifier?

More brainstorming: "sleep disruption" or "sleep disturbance" or "disrupted sleep".

I like the image of weakness describing PEM.

Ward20 (talk) 23:59, 20 March 2024 (UTC)

I'm very happy with profound fatigue, that captures the fatigue better without resorting to jargon.

In the IOM criteria, fatigue is tacked on after: A substantial reduction or impairment in the ability to engage in pre-illness levels of activity (...) that is accompanied by fatigue meeting four criteria

NICE didn't quite like that (Evidence D p49). They separate symptoms (debilitating fatigue, PEM, Unrefreshing sleep and cognitive difficulties, Box 2) from impact (these together most cause significantly reduced "ability to engage in occupational, educational, social or personal activities".)

Can you explain better why disrupted sleep is the better option? I believe that unrefreshing sleep (from NICE) captures a wider set of problems. Not only the sleep quantity (which can be disrupted) but also the quality (sleep 9 hours, still feel shit). —Femke 🐦 (talk) 17:14, 22 March 2024 (UTC)

I like profound fatigue over severe fatigue because it sounds more abnormal, which is more correct.

You're right about NICE Evidence D p49, and NICE Guidance ng206 [16] on pg 11 agrees also. Like I explained, reduced activity levels seemed to me a more important criteria that encompassed a number of symptoms. The way different sources present it, it seems correct either way. Either would be OK with me. Although, it seems if using NICE criteria, another box or balloon should be added for "reduced activity level".

I thought Sleep Problems was too vague. "Unrefreshing" does capture the sleep quality better, but still sounds like a normal occurrence, and not like "(sleep 9 hours, still feel shit)", which is an excellent depiction. To me "disrupted" sounded like a more abnormal occurrence. There are so many different persistent issues with sleep that are abnormal, it's hard to capture in simple terms. That's the best response I have right now. If I think of alternative wording I will add later.Ward20 (talk) 23:36, 22 March 2024 (UTC)

I'm happy to compromise on disrupted sleep, as some sources do use this terminology.

In terms of adding another box, this will likely make the text smaller and pose a problem for accessibility. The infobox figure is rather small. More importantly, within the NICE diagnostic criteria, the functional impairment is named in a list of (1) illness duration (2) functional impairment and (3) exclusionary conditions. To me, it doesn't logically fit into a simple figure of main symptoms. —Femke 🐦 (talk) 13:16, 23 March 2024 (UTC)

Excellent point about the space and the way NICE presents their main symptoms. Maybe the infobox caption should read:

Symptoms, NICE criteria: Minimum duration; adults 6 wks., children 4 wks., significantly diminishes abilities, not caused by a different illness.[17]

This might also cause some confusion between the NICE definition in the infobox and the CDC definition in the Signs and symptoms section. Maybe change the section to the NICE criteria. Ward20 (talk) 18:25, 23 March 2024 (UTC)

I think it's good to mention NICE criteria. One of the complications there is that they distinguish between suspecting ME/CFS (6 weeks), and diagnosing it (3 months). I think the 3 months makes more sense to mention, partially because 6 weeks is so different from most other criteria. I like mentioning both duration + impact in the caption, but I think exclusionary conditions are too much detail?

About the signs and symptoms section, we can also not repeat the CDC definition in that section. We already talk about this in prose in the diagnostic criteria section, where it fits more logically. This is similar to the strategy at fibromyalgia. —Femke 🐦 (talk) 18:33, 23 March 2024 (UTC)

Good suggestions, and I like the way you worded the durations. The 6 and 4 weeks is important since the earlier the treatment, the better the chances of improvement. This fits in two lines in the present infobox:

• Symptoms, NICE criteria: Suspect in adults at 6 wks., children 4 wks. Diagnosis 3 mos.[18] Ward20 (talk) 19:19, 23 March 2024 (UTC)

Final image

. I think it's an improvement over what's there now, right? —Femke 🐦 (talk) 19:53, 14 April 2024 (UTC)

I quite like it. Feel free to gloss over my request since I’m late to the debate, but the only thing I would change is the image for PEM, I think it narrows pem down too much and fails to capture how broad it is. Maybe something ressembling a downwards graph could work better, think of this emoji 📉 (with maybe a flattening at the bottom). YannLK (talk) 20:05, 14 April 2024 (UTC)

Yes I tjhink so. I like the all caps captions similar to the 1st image above because it is easier to read and is more aesthetically pleasing. Also, a minor point, I missed the black fog in the head at first because the black on blue blends in a bit (but I have old eyes). Is there a way to make that more noticeable? Ward20 (talk) 20:16, 14 April 2024 (UTC)

Brilliant. I've asked for permission to overwrite the file on Commons, but what I've done so far is:

• Make the blue slightly lighter so that the brain fog is clear
• Make the font size larger (if that still doesn't work, we can always go for capitals). For me, it's less pleasing in caps, but I take your point on readability
• Make the image more square (which fits better in the infobox).

I like the idea of a crash, but I wonder if that doesn't make PEM too abstract. With the weakness as an element of PEM, I feel like it implies other elements too? You're typically only weak / frail when you're ill. —Femke 🐦 (talk) 16:46, 16 April 2024 (UTC)

I've put the image in the article, as it's an improvement over what was there before. Of course happy to continue tweaking it. My current thoughts:

• The text is still on the small side. I've increased the font size and cut off the empty space on the sides (infobox padding is more than enough). Should I go back to caps?
• I can make a derivative work with the crash as YannLK proposed, and see who prefers what?
• I can add the PEM abbreviation to the second image? Or reword as "crashes" after activity?

—Femke 🐦 (talk) 19:32, 17 April 2024 (UTC)

Hadn't been following this thread at all (apologies), just popping by to say I love the new image. Articles like this are always challenging to illustrate. This is a big leap forward from the prior image, which I'm guessing most readers would just skim by (which is not to cast shade on that image, it's just challenging to illustrate something meaningful about diseases without clear surface symptoms!). Ajpolino (talk) 21:45, 17 April 2024 (UTC)

The road to FAC

I think the article is shaping up nicely for a featured article candidacy in say July. What would you guys say are the main areas we need to work on still, now that the copy-edit is complete? I'd say:

1. Remove the notable cases section? I don't know any of the people there, so they're not that notable (or I'm a cultural barbarian). They're exclusively US examples, and they seem to be people popular like 10 to 30 years ago. We either fully rewrite this, or omit it altogether. Within advocacy, we already mention Nightingale's possible ME/CFS.
2. Citation formatting. All the papers are consistently formatted, but the reports not yet. I can simplify this talk by replacing some more older reports with newer ones (BMJ 2022->2024, remove the 2012 consensus primer). This is the part of FAC I dislike the most, so if anybody wants to volunteer, I'd be over the moon.

Once we're mostly happy, I plan to ask some of the more experienced medical editors to do a WP:Peer review of the article. —Femke 🐦 (talk) 18:46, 27 March 2024 (UTC)

1. I !vote to remove it. Cases that are truly notable likely belong in the history section, but as I think I've said before at some point, such cases should likely be at or near Phineas Gage-levels of repute to really qualify. Neither of the two authors seem to reach that threshold, and I personally do not believe that a two episode story arc of even a popular TV-series is sufficient in itself. Draken Bowser (talk) 19:44, 27 March 2024 (UTC)

1. If re-added in the future here are a few names to consider: Cher, Blake Edwards, Morgan Fairchild, Keith Jarrett, Stevie Nicks, Michelle Akers, Ricky Carmichael.

alternately, it could be simply a link to the article of notable people:

=== Notable cases ===

Main article: List of people with ME/CFS

Ward20 (talk) 05:58, 28 March 2024 (UTC) Of this group, only Cher is famous outside of the US, right? I don't know any of the others, and they're all American, so that we would have another section with systemic bias. —Femke 🐦 (talk) 08:01, 28 March 2024 (UTC)

Description of debilitating fatigue

Reformatting by Femke, splitting into sections

• I'm having problems with thr second sentence in the Debilitating fatigue section:

"People with ME/CFS experience debilitating fatigue, which is made worse by activity. However, it is not caused by cognitive, physical, social, or emotional overexertion."

I think it needs reworking because those issues can cause debilitating fatigue in people with ME/CFS, but people without ME/CFS experience normal fatigue from those. I don't believe I had a hand in writing that paragraph so I'm not sure what the editor wanted. Not sure how to tackle it. Ward20 (talk) 05:58, 28 March 2024 (UTC)

I've corrected the page number. This is based on NICE's main description of ME/CFS, which says: Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest. The way I interpret this is that fatigue must also be present outside of PEM. Only PEM-type fatigue is really amenable to resting and not caused by "overexertion"). The word 'excessive exertion' seems to mean something that would be excessive to a healthy person. In the IOM criteria this is worded as fatigue ... not the result of ongoing or unusual excessive exertion. Happy to consider wording that makes this more clear. —Femke 🐦 (talk) 08:01, 28 March 2024 (UTC)

The issue I believe is that if I look at the two sentences as an illness sign the meaning is more clear than if I interpret them as a symptom. Additionally, NICE and CDC appears to distinguish the fatigue a bit differently. NICE links it with PEM and CDC with impaired ability. However, when I follow the link for the NICE fatigue definition[19], the two are more consistent. This is my suggestion to help clarify: However, this fatigue is very different than the typical fatigue caused by excessive or extreme mental, physical, societal, or emotional overexertion which does not indicate the illness. It's kind of belt and suspenders, but it's an important point. Ward20 (talk) 19:45, 28 March 2024 (UTC)

Hah, I see where you're coming from: This is a symptom description, not a diagnosis description, so we should focus on describing what the fatigue feels like.. Your wording seems a bit ambiguous. It could mean the fatigue is different from what healthy people experience after overexertion. I've heard people describe ME/CFS fatigue as similar to just having finished a marathon, but then constantly. Of course, it's more severe for the 25%.

The NICE evidence D doesn't give us much more to go on. The description in the German guidelines are also very similar: "The fatigue is not the result of sustained or excessive effort and cannot be significantly alleviated by rest." The German description does make the impairment from fatigue more clear by giving an example (people can only stand for minutes). Would that work instead? —Femke 🐦 (talk) 20:24, 29 March 2024 (UTC)

P.S. translation with ChatGPT is quite efficient. In DeepL, you have to manually fix the formatting with extra enters. ChatGPT can do that for you. —Femke 🐦 (talk) 20:25, 29 March 2024 (UTC)

The fatigue is different from what healthy people experience after overexertion, very different. The last 2 sentences in the article "Debilitating fatigue" section does describe ME/CFS fatigue.[20] "Particularly in the initial period of illness, this fatigue is described as "flu-like". People with ME/CFS may feel restless and describe their experience as "wired but tired". When starting an activity, muscle strength may drop rapidly, which can lead to sudden weakness, difficulty with coordination, and clumsiness."

The NICE wording "Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion..." is stating (under the section suspecting ME/CFS) that a diagnosis would not count a fatigue "caused by excessive cognitive, physical, emotional or social exertion" because it is different from ME/CFS fatigue. Unfortunately, they don't describe that very well. Ward20 (talk) 03:40, 30 March 2024 (UTC)

It seems you left a paragraph unsourced. This means that part of the article doesn't meet the WP:GA? criteria.

Overall, if NICE, IQWig and CDC state this unclearly, we need to find another high-quality reliable source that does state this clearly. I'm still not convinced the fatigue in ME/CFS is much different in quality to what is experienced by extreme overexertion in healthy people, except in the early period. —Femke 🐦 (talk) 08:58, 30 March 2024 (UTC)

Sorry about leaving out sourcing on the paragraph. But I do believe fatigue is differentiated, not well, but sufficiently, by the context in the NICE guideline, Box 2 Symptoms for suspecting ME/CFS [21]. NICE links/states the description of ME/CFS fatigue in Terms used in this guideline,[22] and then states that ME/CFS fatigue "is not caused by excessive cognitive, physical, emotional or social exertion". This only makes sense in the context of a sign, not a symptom. If someone with ME/CFS were to overexert they do experience ME/CFS fatigue symptoms. The NICE wording must be saying fatigue "caused by excessive cognitive, physical, emotional or social exertion", in persons without the illness, is different from ME/CFS fatigue. I don't see any other interpretation.

Other sources for the purpose of interpreting the nice guideline for the talk page, not necessarily the article:

"The fatigue in patients suffering ME/CFS is more intense and different from usual tiredness related to physical exercise. It may combine cognitive and physical exhaustion, weakness, heaviness, general malaise, light headedness, and sleepiness. These characteristics are the main tool that the primary care physician has to be able to differentiate ME/CFS from other common causes of fatigue, including fatigue associated with cancer."[23] Cited by 92 Medline journal articles, which is very good.

"The unbearable physical and mental fatigue can remain in the ME/CFS patients for decades."[24] Very high Impact Factor.

The removed sentence may not be the best wording, but the present sentence lacks critical context from the NICE guideline, IMO. Ward20 (talk) 12:33, 30 March 2024 (UTC)

I'm getting a bit confused. Let me try to give a few statements I think we both agree on, and where we may possibly disagree:

1. PwME experience fatigue even when they don't experience PEM
2. The fatigue is made worse my PEM
3. The fatigue experienced in ME/CFS is worse than the usual tiredness after (normal) physical activity.
4. A sign is something a third person observes. A sign of ME/CFS fatigue may be people walking unsteadily, as they don't have the energy to walk normally.

Now things I believe you may disagree on:

1. When NICE talks about overexertion, they mean the type of activity that causes bad effects in healthy people. Like running a marathon when completely untrained.
2. The NICE statement is about the fact that pwME have very intense fatigue without having done anything crazy (like running a marathon untrained). It's more akin to a differential diagnosis (excluding crazy overexertion as cause), than about a description of fatigue.
3. We should be careful with citing MDPI journals. If a journal with more rigorous peer review is available, or a clinical guideline, they should typically be preferred over an MPDI journal, unless there is a good reason to make an exception.

Can you indicate if this is indeed a good description of our agreement/disagreement? I'll hold off crafting a compromise till I understand what we both think. —Femke 🐦 (talk) 16:06, 30 March 2024 (UTC)

Where we might agree; #1-3. Agree. #4. Mostly agree, the third person is normally a doctor and/or someone involved in making the diagnosis.

Where we might disagree:

1. Somewhat disagree, but it is somewhat subjective. NICE uses "excessive exertion"[25] which I interpret as exertion a person is not used to, and not always bad. NICE; "profound fatigue that is unlike normal tiredness"[26] CDC; "The fatigue of ME/CFS:...Is not a result of unusually difficult activity."[27]

Normal fatigue is not bad per se, but may become chronic with chronic sustained exertion, however this fatigue normally resolves with rest as far as I know. Abnormal fatigue after a marathon when completely untrained (a form of Overtraining Syndrome?)[28] mostly resolves after proper medical care and rest. Fatigue symptoms, although similar, do not appear to match entirely, especially with disproportionate disability after activity, and duration of fatigue.

Fatigue from other illnesses can be similar, and difficult to differentiate, but I don't believe that is relevant on this discussion.

2. Agree

3. Somewhat agree, I try not to use MPDI journals in articles, I have to admit I mistook the Cells publication[29] (IF 6.7 which is respectable), for Cell[30] IF 67. And the other MPDI source[31] (Cited by 92 Medline journal articles is impressive, and I might argue, based on that, for an exception.) There is a long history, on this talk page, of using both those metrics for source inclusion. Maybe that's not appropriate? Also, the talk page is somewhat different than article sourcing when trying to interpret source wording among editors, IMO. Ward20 (talk) 01:42, 31 March 2024 (UTC)

Okay, we were closer in agreement than I thought. I've added the description from IQWig (it's different than in other illnesses with fatigue, as more profound & longer duration). Does this work? —Femke 🐦 (talk) 19:18, 31 March 2024 (UTC)

Pre-FAC comments from Ajpolino

Hi all, Femke asked if I could review the article with an eye towards getting it through FAC. I'll post comments as I go. I'll start with the "well-written" criterion because it's the easiest one to assess, and will add comments on the other criteria as I go. I've just made it through Signs & symptoms so far. I do think the FAC folks are sticklers for prose (no doubt because everyone can assess it) so apologies for the number of comments. Of course, these are just my opinions:

1a. Well-Written:

• Lead - People with ME/CFS experience delayed worsening of the illness after minor physical or mental activity, which is the hallmark symptom of the illness - confusing to read for two reasons: (1) delayed worsening? Can we be more clear about what that means? (2) "worsening of the illness" is not very meaningful since I don't yet know what the illness is like.

  I agree. Taking inspiration from your your December suggestion, I propose Minor physical or mental activity worsens symptoms, usually after a delay of hours to days, and recovery from these characteristic crashes can take days to weeks.. In the linked discussion, there was a no consensus for putting this symptom last (2 vs 2). We didn't talk about how the last sentence in a paragraph is usually the second-most read one by people skimming the text. So, putting it last will increase rather than decrease the attention for this sentence. —Femke 🐦 (talk) 19:48, 31 March 2024 (UTC)

  I'm good with changing the wording and also moving the sentence below the other symptoms for context. Ward20 (talk) 23:40, 31 March 2024 (UTC)

It is important to mention in the lead that PEM does not only lead to worsening of symptoms but also worsening of functional capacity (PEM threshold), which in itself is usually more disabling. I think "delayed worsening of the illness" captures this well, but obviously I understand this phrasing has problems. I Would be against only referring to worsening of symptoms

I think it is also important to mention that there is no set time that "crashes" improve, most last days or weeks, but they can last months or years, the phrasing "days, weeks, months or longer" works well for this case.

Also not experienced with talk page, sorry if I did something wrong formatting wise! YannLK (talk) 18:36, 4 April 2024 (UTC)

• Lead - Other core symptoms... and sleep disturbances I gather you mean this as "Symptoms are A, B, and C". It could also be read "Symptoms are A, and B that does not improve with A and B. It can be made bullet proof by just rearranging the list items.
• Lead - Further common symptoms... issues and pain same as above. This one's a bit harder to fix, but I'm sure you can figure something out.
• Lead - The root cause(s) of the disease are unknown, and the mechanisms are not fully understood besides being redundant, "the mechanisms are not fully understood" is basically another version of further research is needed.

  The distinction I tried to make here is between what triggers the illness and the pathophysiology of the once people are ill. Upon reflection, I don't think the 2018 CDC source is the best. With COVID-19 triggering ME/CFS, newer sources may describe the uncertainty around the cause differently. I'll have a dig. —Femke 🐦 (talk) 08:02, 31 March 2024 (UTC)

• Lead - for instance, after mononucleosis. is mononucleosis a particularly common trigger? If not, it can be cut. We can think of flu-like illnesses (the flu comes to mind) without an example. If yes, reword to make that clear.

  Yes, it is likely the most common trigger (at least before COVID, we don't have data yet comparing COVID and mono case numbers). —Femke 🐦 (talk) 08:02, 31 March 2024 (UTC)

• Lead - A genetic component is suspected reword per MOS:WEASEL

  I disagree here. I think this is a good way to indicate that no appropriately sized GWAS has been completed, but that there is good indirect evidence via relative risk for family members. Attributing this would not make much sense, given that I don't think this is controversial. —Femke 🐦 (talk) 10:46, 31 March 2024 (UTC)

  Agree with —Femke 🐦. Ward20 (talk) 11:59, 31 March 2024 (UTC)

• Lead - because no confirmed diagnostic unless there are "unconfirmed" tests you're explicitly excluding here.

  Removed. There are unconfirmed tests out there, but not ones that are close to being confirmed I don't think. —Femke 🐦 (talk) 10:46, 31 March 2024 (UTC)

• Lead - Symptoms and severity of the illness can fluctuate significantly over time feels like this should be at the end of paragraph one? Ditto About a quarter... can cause social isolation. All seem to be about symptoms rather than recovery.

  The second example has moved repeatedly between paragraph 1 and 3. User:Ward20, can we use this as a WP:third opinion and move it back to paragraph 1? For the first example, that is a symptom description when talking about short-term fluctuations, and related to remission when talking about longer-term fluctuations. As it's written now, it feels more short-term, but I wonder if we can restore wording that makes it relate to remission. —Femke 🐦 (talk) 08:09, 31 March 2024 (UTC)

  I agree it makes sense to move it back to paragraph 1, at least short term, and have no objection to edit as necessary. Ward20 (talk) 08:33, 31 March 2024 (UTC)

  Wdym, at least short-term? It would be good if we can really find a stable version here. —Femke 🐦 (talk) 10:32, 31 March 2024 (UTC)

  Ah. I didn't examine the issue close enough. The fluctuating part of the illness is actually not a diagnostic sign or major symptom such as those described in the first paragraph. Yes, a stable change is better, but just swapping it into the first paragraph seems to be a mismatch. How about dropping the first two words, The severity of the illness can fluctuate significantly over time... This fits the third paragraph better and leave it where it is? I would leave About a quarter... where it is also. Ward20 (talk) 11:51, 31 March 2024 (UTC)

  How do you suggest we balance the paragraphs instead? Our third paragraph has no focus at the moment really (prognosis, epidemiology, illness impact and management). My preference is to move some of the text to the first paragraph, but I'm happy to rescope the slightly odd fourth paragraph too. —Femke 🐦 (talk) 12:47, 31 March 2024 (UTC)

  I agree there could be better balance and focus but I don't have ideas about how to fix them at the moment. Ward20 (talk) 22:58, 14 April 2024 (UTC)

• Lead - Before the COVID-19 pandemic... surprising to read. I assumed the next sentence would tell me what happened during/after(?) the covid pandemic, but it didn't. Is there some reason to make this distinction?

  About 15-50% of people with long COVID meet the diagnostic criteria of ME/CFS. Sources are a bit contradictory in saying whether these people have ME/CFS, or whether the two should be considered separately. If they have ME/CFS, an OR back-of-the-envelope calculation would conclude that 50% to 95% of people with ME/CFS developed it after a COVID infection. I've added the ambiguous text often found in sources to the lead (saying that people meet the criteria, rather than that they have it). The cited source says is one that says they do have ME/CFS. —Femke 🐦 (talk) 09:09, 31 March 2024 (UTC)

• Lead - comparable diseases I assume you mean diseases of comparable impact? Is there a way to make that clearer? Prostate cancer and testicular cancer are "comparable" diseases in many ways (invasive cancers of the male urogenital tract), but they're funded unequally because prostate cancer kills ~50 times more people.

  I've changed it to diseases of comparable impact, good suggestion. I tried to avoid jargon like "comparable disease burden". Most comparison are made per DALY/QALY, but a comparison with multiple sclerosis is also common, as symptomatology overlaps quite a bit. —Femke 🐦 (talk) 10:37, 31 March 2024 (UTC)

arbitrary break for editing 1

• Classification - Even though... neuroimmune condition seems like it should go after the ICD-11/ICD-10 info (also I'd flip the order of the ICD-10 and ICD-11 material). I.e. move the "official classification" stuff together.

   Done

• Signs & symptoms - The illness causes debilitating fatigue, sleep problems, and a pattern of getting worse after even mild activity. Similar to the first point, can you clarify this? Do just the fatigue and sleep problems worsen? Everything?

   Done. —Femke 🐦 (talk) 16:08, 4 April 2024 (UTC)

• Signs & symptoms - Consider glossing "orthostatic intolerance", most people won't be familiar I suspect.

•  Done

• Signs & symptoms - the exact symptoms required... can be confirmed. seems unnecessary here. We'll get to it in the Diagnosis section.

  Given the high variation is the diagnostic criteria, I think it's good to signpost readers here. It's done similarly in dementia with Lewy bodies. —Femke 🐦 (talk) 16:08, 4 April 2024 (UTC)

   Done. Should be better. Ward20 (talk) 23:12, 14 April 2024 (UTC)

• Signs & symptoms - lead to sudden weakness, difficulty with coordination, and clumsiness - reorder (do they have difficulty with A, and B? Or do they have sudden A, B, and C).

  Reshuffled. I'm pretty sure the sudden should only refer to weakness, but the source is equally ambiguous. —Femke 🐦 (talk) 11:00, 31 March 2024 (UTC)

• Signs & symptoms - Persons is an uncommon plural. I know people have uncommon reasons for using it, but I admit I'm not much familiar with them. Is there a reason to use it here?

  Rewritten. Dutchism. Apparently, it's used in legal and formal texts to emphasize individuality. —Femke 🐦 (talk) 08:09, 31 March 2024 (UTC)

• Signs & symptoms - Persons with the illness experience... "physically drained" I don't feel the quote sentence adds anything to my understanding that I didn't already pick up from the rest of the section. I'd cut it (or reformulate so it adds something about the condition that medical terms can't cover).

  Agree; I've cut it. —Femke 🐦 (talk) 19:06, 31 March 2024 (UTC)

• Signs & symptoms - Accompanying cognitive fatigue also decreases the ability to function as they had pre-illness. should this be in the "cognitive dysfunction" subsection below?

  Reworded to overlap less. Cognitive fatigue is quite central in the description of fatigue in ME/CFS, but the impact of cognitive difficulties more broadly can be described in that section. —Femke 🐦 (talk) 19:06, 31 March 2024 (UTC)

• Signs & symptoms - The PEM subsection mentions several symptoms that are introduced later in the section. Should that subsection be moved later? Honestly, I think the repetitiveness would be most easily reduced by merging several subsections instead of splitting each major symptom into its own subsection, but I'll leave that as a gentle suggestion for you to consider.
• Signs & symptoms - "crashes" or flare-ups should both be in quotation marks?

   Done. —Femke 🐦 (talk) 19:06, 31 March 2024 (UTC)

• Signs & symptoms - might foreshadow a prolonged relapse Not sure I understand what this means. When I think "relapse" I think of disease returning, but in this context when someone has PEM hasn't their disease already returned?

  Our Wikipedia article relapse is quite poor to clarify. The Oxford dictionary says: (of a sick or injured person) deteriorate after a period of improvement.. A relapse here usually means somebody going (back) from mild to moderate, or from moderate to severe. —Femke 🐦 (talk) 19:06, 31 March 2024 (UTC)

• Signs & symptoms - All types... or emotional suggest shortening to just "Physical, cognitive, social, or emotional events can all trigger PEM."
• Signs & symptoms - Examples are... a shower I don't think the examples are helpful.

  I find them helpful, as PEM is such an unfamiliar symptom. —Femke 🐦 (talk) 08:02, 14 April 2024 (UTC)

  Agree with —Femke 🐦 Ward20 (talk) 13:06, 14 April 2024 (UTC)

• Signs & symptoms - The amount of activity... after activity - can we split that into two sentences?

   Done. —Femke 🐦 (talk) 13:43, 31 March 2024 (UTC)

• Signs & symptoms - reversed cycle of wakefulness and sleep I don't think I know what this means.

   Done, rephrased as "a pattern of sleeping during the day and being awake at night" and linked to sleep inversion. —Femke 🐦 (talk) 13:34, 31 March 2024 (UTC)

• Signs & symptoms - Sleep is often described as unrefreshing largely redundant to However, even a full night's sleep is typically non-restorative below. I'd suggest cutting the first sentence as I think things flow nicely with just the second.

   Done. —Femke 🐦 (talk) 11:00, 31 March 2024 (UTC)

• Signs & symptoms - I don't have access to the source, but is Sleep apnoea may be present as a co-occurring condition important? Are they particularly likely to co-occur?

  Probably? It's mentioned in multiple of the top sources. I've moved to differential diagnosis. —Femke 🐦 (talk) 08:02, 14 April 2024 (UTC)

• Signs & symptoms - this is a fine line of course, but my personal opinion FWIW is that However, many diagnostic criteria state that sleep disorders must be excluded before a diagnosis of ME/CFS is confirmed. is unnecessary here and is best left to the Diagnosis section.

  Moved. —Femke 🐦 (talk) 08:02, 14 April 2024 (UTC)

• Signs & symptoms - a small thing but in 50-80%... are estimated to have... with cognition I presume it's the 50-80% number that's the estimate? If so, I think the sentence is clearer if you say something like "An estimated 50-80%..." or "Up to 80%...". Current wording sounds like they're estimated to have cognition problems.

   Done. —Femke 🐦 (talk) 13:52, 31 March 2024 (UTC)

• Signs & symptoms - Simple and complex information-processing speed and working memory functions, over long time periods, are moderately to extensively impaired. had to read this twice to comprehend it. Could we simplify it? "Information-processing speed and working memory can be extensively impaired"?

   Done. —Femke 🐦 (talk) 13:52, 31 March 2024 (UTC)

• Signs & symptoms - These deficits are generally consistent with the patient's perspective - I'm not sure what this is supposed to mean.

  Removed. —Femke 🐦 (talk) 14:49, 31 March 2024 (UTC)

• Signs & symptoms - do not appear to be significantly altered is scientist speak. In the normal world we'd say "are not altered" or something to that effect.

   Done. —Femke 🐦 (talk) 14:49, 31 March 2024 (UTC)

• Signs & symptoms - Patients who report... language-processing complaints - the two halves of this sentence don't build on each other. Perhaps they should be separated? Also MEDMOS recommends against using "patients". It's not a strict rule, per se, but I feel "patient" rings of medical literature instead of general encyclopedia.

•  Done. Have removed patients where there is not necessarily a treating doctor throughout. I've rewritten and condensed this whole subsection. The papers are all based exclusevely on older criteria, so I didn't want to go in too much detail, as it's not quite clear if these deficits are similar with modern criteria. Some of the framing in the 2016 paper in particular shows its age, and there were some text-source integrity issues. Had avoided rewriting this, as it the source material is tough to digest. —Femke 🐦 (talk) 14:49, 31 March 2024 (UTC)

• Signs & symptoms - Symptoms, which include nausea, ...by the upright posture. should the two symptom lists be merged?

  We've got a lot of lists already: it thought a 5-item list is quite difficult to parse. —Femke 🐦 (talk) 18:46, 31 March 2024 (UTC)

• Signs & symptoms - may also be present, are also described this language also feels very medical textbook to me. I'd suggest rewording.

   Done. I wanted to vary on "people with ME/CFS". Dementia with Lewy bodies also uses "individuals with .. ", so have replaced it with that term. I'm not too keen on using "they", as it feels like the reader definitely doesn't have the illness. —Femke 🐦 (talk) 18:46, 31 March 2024 (UTC)

• Signs & symptoms - PEM frequently makes pain worse isn't this true of all the symptoms?
• Signs & symptoms - Normally, exercise has the opposite effect, making people less sensitive to pain. I get the contrast you're trying to draw here, but I don't think this is worth stating.

   Removed —Femke 🐦 (talk) 08:02, 14 April 2024 (UTC)

• Signs & symptoms - Many, but not all, people with ME/CFS further report... suggest turning this list into a sentence. I feel bulleted lists draw a lot of reader attention, which in this case isn't merited. No rule about that of course, it's just my personal feeling, and could be a me problem.

   Done. Also done in a similar situation in diagnosis (where I removed the list completely, and replaced it by different prose). —Femke 🐦 (talk) 16:18, 1 April 2024 (UTC)

• Signs & symptoms - can be divided into is this a common division scheme (if so, say so) or is this Wikipedia's division scheme (if so, I advise against doing this)?

  It's a common division scheme, but not a universal one. For instance, the BMJ Best Practice guide introduces it as "A severity spectrum to ME/CFS has been proposed as follows". It's from the 2003 criteria, but has seen quite some use outside of them. NICE and Mayo use the classification mostly as a given fact, so will follow them. I've changed it to are divided. —Femke 🐦 (talk) 15:55, 31 March 2024 (UTC)

• Signs & symptoms - results in a large reduction in filler words. Maybe replace with "impedes"?

   Done. —Femke 🐦 (talk) 15:55, 31 March 2024 (UTC)

• Signs & symptoms - into the moderate-to-severe category "categories"?

   Done. —Femke 🐦 (talk) 15:55, 31 March 2024 (UTC)

• Signs & symptoms - They can further experience... severe pain another confusing list

  reshuffled, hopefully clearer. —Femke 🐦 (talk) 15:55, 5 April 2024 (UTC)

• Signs & symptoms - A 2015 study... and lung cancer is this due? I get it, ME/CFS very bad. But anyone who got this far in the article already knows that. And this is just one study of ~100 Danish volunteers compared to historical measurements from another study a few years earlier. I'm not saying it isn't valuable, but we're giving it an awful lot of prominence here. Too much?

   Done. Replaced material from primary source study with material from stronger source about disability.Ward20 (talk) 08:49, 31 March 2024 (UTC)

arbitrary break for editing 2

• Causes - Personal preference perhaps, but I'd open the section with ME/CFS is a biological disease... psychological condition..

  Agree YannLK — Preceding undated comment added 14:15, 14 April 2024 (UTC)

• Causes - Much of the opening material The cause of ME/CFS... 10% of cases as a trigger seems redundant. I'd suggest moving some to Signs & symptoms (The onset of ME/CFS... known infection is useful context for framing the ME/CFS experience) and merging some down into the dedicated Viral infections subsection (Estimates differ on... cases as a trigger.

• Causes - If you're not going to split up the material referenced above, It often starts after a viral infection and it often follows an episode of infectious-like symptoms of a known infection are redundant.
• Causes - Is Q-fever a particularly common trigger (in which case tweak the wording to indicate that) or just an example of a bacterial infection (in which case I'd suggest cutting the example; I don't think it will resonate with most readers).

  it's more common in Australia. Was one of the early pathogens that was could positively be. identified for causing symptoms, and helps the article not being US & UK centered. (Now thinking it may be outdated and better to cut.) Ward20 (talk) 20:06, 2 April 2024 (UTC)

  It resonated with me as there was a Q-fever epidemic in the Netherlands, which caused quite some political upheaval as long- term effects were initially downplayed. I'm leaning towards keeping it, given it was also important in Australia. —Femke 🐦 (talk) 09:59, 6 April 2024 (UTC)

   Done Leans toward keep then. Ward20 (talk) 03:29, 12 April 2024 (UTC)

• Causes#Risk factors - gently suggest condensing the discussion of women:men ratios More women than men... women than in men to something like "... occurs up to four times more often in..." or "between 1.5 to 4 times as many..." as I don't think calling out the differences between some meta-analysis and wherever CDC got their number is particularly interesting.

   Done and moved to epidemiology, as there was a bit of redundancy. —Femke 🐦 (talk) 10:01, 6 April 2024 (UTC)

• Causes#Risk factors - It used to be thought that ME/CFS was more common among those with higher incomes. could probably be cut? Reads like you're stuck on an academic dispute that's now settled.

  Probably either cut or expanded, it's complicated. In the 80s, when large clusters occurred, most doctors did not know adout the illness. It took large resources to get diagnosed. The media started talking about "yuppie flu" and "burnout". Years later, when community surveillance by telephone was conducted, the understanding changed. However, patients still encounter physicians lack of understanding, and many more people remain undiagnosed than diagnosed. Ward20 (talk) 19:54, 2 April 2024 (UTC)

• Causes#Risk factors - relatives appear to be more like to get "appear to be" is classic academic writing. You could arguablu put it before every fact in an article. But instead, we typically just say "are".
• Causes#Viral infections - Highlighting Borna disease virus seems kind of silly. At a quick Google it seems to cause extremely little human disease (unless it goes by an alternative name I didn't think to check?). ECDC says human infections were first demonstrated in 2015, and have effected just a handful of people in close contact with squirrels.

   Done removed the sentence. The odd thing is that the primary research cited in the review all came before 2015. All the papers do seem to talk about the same virus. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)

• Causes#Viral infections - Could you move up the fact that infectious mononucleolsis is caused by EBV? You note it at the last mention of EBV in the section. It would be helpful context even just a few sentences earlier.

   Done. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)

• Pathophysiology - Evidence points to abnormalities... in some people with ME/CFS is another scientist-ism. We might more typically say something like "Some people with ME/CFS have abnormalities...".

   Done.

• Diagnosis#Diagnostic criteria - Multiple research and clinical criteria exist... what does the "research" part mean? Would just "Multiple clinical criteria..." work?

  There is a muddled distinction between research and clinical criteria. Research criteria are typically strict (like CCC), to ensure a more homogeneous population, whereas clinical definitions like NICE and IOM are more inclusive, to not deny care. To make things complicated, clinical definitions are often used in research, which makes research difficult to interpret. I'll see if I can find a good source explaining more on this. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)

• Diagnosis#Diagnostic criteria - Would it be undue to give us the list of eight symptoms that are options for a Fukuda diagnosis? Reading "four out of eight other symptoms" my brain wanted to know more.

  Since the Fukuda criteria are often considered as outdated and were largely used by researchers who claimed ME/CFS was at least in part psychological I think the idea is to not give it too much space in the article. User:yannlk — Preceding undated comment added 00:08, 14 April 2024 (UTC)

  I prefer not to either, as these criteria are on their way out.. Most of the secondary sources don't mention all eight symptoms. —Femke 🐦 (talk) 08:09, 14 April 2024 (UTC)

• Diagnosis#Diagnostic criteria - The tone is a bit odd in While used frequently... least moderate severity. Are these really "limitations" or just characteristics? Reads as if this is a Wikipedia editor's opinion. If there's due criticism that Fukuda is misguided, can we rephrase to make that clear?

  I've explained why these are considered limitations, and removed the second limitation as it's not unique to Fukuda. Sources differ in saying "Fukuda is critizised" vs "Fukuda has limitations". I think saying it's criticised may lead to people asking "by whom?". —Femke 🐦 (talk) 08:09, 14 April 2024 (UTC)

• Diagnosis#Diagnostic criteria - At the beginning I was promised at least five sets of criteria: NICE, IOM, ICC, CCC, CDC. I got CDC, CCC (the strict one), and IOM (for lazy clinicians), but only very brief callouts for ICC (similar to CCC) and NICE (IOM lite?). Is this intended based on the importance of the latter two criteria?

  ICC is definitely less used than CCC, so that was intentional. For NICE, the brevity was due to the fact that it's very similar to IOM. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)

• Diagnosis#Diagnostic criteria - I usually like my medicine articles short and sweet, but I admit I left this section feeling like I could've used more detail. I don't know much about the topic, but I'm surprised more coverage of diagnostic criteria isn't due for a mysterious syndrome that folks have struggled so mightily to characterize. Are some of the criteria sets more popular than others? Is the one I'm likely to be diagnosed by entirely dependent on geography?

  Per above, I'll make the distinction between research and clinical definitions more clear in the text. There is a geographic bias yeah, with NICE used in the UK, IOM in the US, and a mixture in Europe, including a variation of Fukuda which does require PEM. New Zealand has started recommending IOM's criteria iirc.

• Diagnosis#Diagnostic criteria - The two halves of Separate diagnostic criteria... for children too. seem redundant. I get the distinction, but it doesn't seem important.

   Done

• Diagnosis#Clinical assessment - Screening can be done using the DePaul... do sources support something stronger than "can be done"? Like "are often done" or "typically relies on"?

  Unfortunately not no. The common data elements initiative from the NINDS) has said a paper is in development, which may talk about this. The IOM still had a massive list of questionnaires, but most of these have since fallen in disuse. BMJ only talks about this questionnaire, and the NINDS highlight this one most. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)

• Diagnosis#Clinical assessment - Distinctive elements of PEM... delayed response redundant to the Signs & symptoms section. Can be merged up there.
• Diagnosis#Differential diagnosis - as ME/CFS and should... "should" smacks of a clinical guideline, which we are not. Aim to describe, not recommend. This is one of the examples at MEDMOS:Wrong audience.

   Done. Ward20 (talk) 01:12, 4 April 2024 (UTC)

• Management - Is there a better wikilink for "well-being evaluations"?

  I couldn't find a better target, so removed the link altogether. —Femke 🐦 (talk) 15:49, 5 April 2024 (UTC)

• Management#Pacing - Thus, the principle behind... exacerbation of symptoms. This summary was unnecessary (no doubt because the prior material was written so clearly!)

  Rewritten by Ward. —Femke 🐦 (talk) 15:49, 5 April 2024 (UTC)

   Done. Seems stable now. Ward20 (talk) 23:08, 14 April 2024 (UTC)

• Management#Pacing - Those whose illness appears stable... have exceeded their limits. reads oddly didactic. Can you shorten it, or massage it to be about how folks' pacing limits can shift over time?

   Done. Reduced it to one sentence is that good enough? Ward20 (talk) 22:16, 4 April 2024 (UTC) Rewritten. Ward20 (talk) 17:00, 5 April 2024 (UTC)

• Management#Exercise - while not interfering with everyday tasks or lead to an increase verb agreement. "Leading" would fix it.

   Done. —Femke 🐦 (talk) 15:49, 5 April 2024 (UTC)

• Management#Counseling - NICE removed their recommendation for this treatment in 2021. yikes. A low-evidence treatment recommended into 2021. I wish I was more surprised.
• Epidemiology - Seems odd to include American estimates for 2015 and 2021-22. I get the former one had the "% undiagnosed" estimate, which is nice to have. But could these be condensed?
• Society & culture#Controversy - One viral study caused mildly confusing since the adjective "viral" has two meanings now in the internet age.

   Done. —Femke 🐦 (talk) 08:49, 7 April 2024 (UTC)

• Research#Research directions - and a Raman microscopy unintentional "a"?

   Done. —Femke 🐦 (talk) 08:49, 7 April 2024 (UTC)

Source review

1c. Well-researched:

• it has been classified as a neuroimmune condition - I'm not sure this is actually a problem, and maybe I just have an overly medical definition of "to classify" in my head, but I think the source is saying the disease could or even should be classified as a neuroimmune disease. But it seems strong to say "it has been classified" that way and to cite this article. The article doesn't really dwell on classifications, it discusses a variety of involved body systems.

  I've reworded, but I feel I'm still missing something. There is another source that may be useful here: https://www.mdpi.com/1648-9144/57/10/1030. This source discusses more directly if ME/CFS is neurological, and talks a bit about the historical controversy around this (apparently, in 2011, UK neurologists didn't really think it was neurological). I've not found sources talk too explicilty about whether this controversy is now resolved.. Sources are probably saying it's neurological, neuro-immune or multi-system in equal proportions. —Femke 🐦 (talk) 11:38, 31 March 2024 (UTC)

• This is called... "vague discomfort" - I don't see the bit about malaise being outdated in the source. Also a smaller thing the source says PEM "may also be referred to as" post-exertional symptom exacerbation. Not quite the same thing as what we say, which is that it's "more accurately" referred to as that. Both the "more accurately" and "may be outdated" in Wikipedia's voice feel like we're editorializing. If these opinions belong to sources, that should be made clear.

  Ouch, it seems like we were too aggressive in making the NICE citations consistent, and accidently merged away the accompanying evidence reviews (which are separate documents). I've fixed errors from March 9 and March 11, but I thought I had cited more evidence review documents.. So bear with me. —Femke 🐦 (talk) 07:50, 31 March 2024 (UTC)

Shall we put a ( Done) after the item, if we believe the issue is addressed? Ward20 (talk) 05:48, 31 March 2024 (UTC)

Sure you can put a {{done}} marker or just strike through them. Whatever is easiest for you to keep track of works for me. Ajpolino (talk) 15:29, 31 March 2024 (UTC)

• Pathophysiology - However, cytokines are often short-lived, so it is difficult to measure them. A small thing, but I don't think that's an exact match for what the source says "[Cytokines and other circulating things]... are transient or variable and therefore often unstable as diagnostic targets." They're easy to measure (which is why studies measure them even when it's an imperfect readout) but levels can fluctuate quickly and for a variety of reasons.

  Yeah, that was poorly worded. I've removed it altogether as it was likely to much "science speak", and other sources don't emphasize uncertainty that much. —Femke 🐦 (talk) 08:49, 7 April 2024 (UTC)

• Pathophysiology - have lower performance and heart rate compared to healthy controls on the first test. I'm surprised the folks with ME/CFS have lower heart rate (since I'd imagine their body is more taxed by the test), though I'm no exercise physiologist. Could you point out where in the source it says that?

  @The Quirky Kitty: did you mean work rate rather than heart rate here? I don't think the source supports heart rate, even though other reviews do (e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6824690/). There seems to be some autonomic nervous system dysfunction that causes this. BMJ reports on it, so I think it's due (the BMJ mentions it twice , and twice they make a mistake, calling it chronotropic intolerance, rather than incompetence and contradicting themselves later, but contradicts itself). —Femke 🐦 (talk) 16:37, 3 April 2024 (UTC)

  I've removed heart rate, and added a sentence about chronotropic incompetence elsewhere, as it's found on first day of CPET already and more linked to neurology than metabolism. There were more apparent discrepancies with the source, so added a second source which should cover all. —Femke 🐦 (talk) 10:37, 14 April 2024 (UTC)

• Management#Pacing and energy envelope - Use of a heart-rate monitor... is recommended by a number of patient groups seems an imperfect match with the cited source MEA Summary.
• Advocacy - Advocacy and research organisations include... this is probably not a big deal, but if you could find a reliable source that lists important ME/CFS advocacy and research organizations, that would be preferable to what we have now, which is just linking each organization's website as a "reference". Anyone can make a website and claim they're an advocacy organization (e.g. The National Vaccine Information Center claims to be an advocacy organization, but it's actually an anti-vaccine conspiracy group). Having a reliable reference that says "these are the true impactful organizations in the ME/CFS space" would be a reliability boost.

  1c (cont.) Source review, I'll link each in case the numbers change:

• CDC refs 3, 12, 19, 29, and 42 have been updated by the CDC. Make sure the info still checks out and add the new date to the reference.

   Done. —Femke 🐦 (talk) 11:23, 13 April 2024 (UTC)

• ref 6 may have changed? The CDC's date at the bottom of the page doesn't match the one in the reference here.

  I've removed it altogether, as it was showing its age. —Femke 🐦 (talk) 11:23, 13 April 2024 (UTC)

• What is ref 7 and how do we know it's reliable? Alternatively since it only sources the infobox, perhaps it can be removed/replaced.

•  Done. Removed. Despite its unprofessional look, it was influential, but too old now. —Femke 🐦 (talk) 08:00, 13 April 2024 (UTC)

• Ref 23 - In the ICD-10, the code... people often use {{efn}} to accomplish this so an interested reader has a slightly stronger visual cue that there's more info there.

  I've reverted and restored it to the main text as ICD-10 is still in use in many countries. —Femke 🐦 (talk) 13:52, 13 April 2024 (UTC)

• Christley, et al. 2013 (ref 31) have you seen a more recent source for this 80% number? Per WP:MEDDATE we tend to look for sources in the last five years to anchor us in the fast-changing biomedical world. This isn't the world's most controversial claim, but I imagine others have written on the topic since.

  I hadn't replaced it as I couldn't find the claim in the newer papers (mostly due to a lack of reviews on the topic). Removed as the review which spawned this number didn't contain the "serious" qualifier, and also contained slightly different numbers. —Femke 🐦 (talk) 12:37, 13 April 2024 (UTC)

• Aoun Sebaiti, et al. (2022) (ref 32) - Folks at FAC are real sticklers for consistent reference formatting (I suspect because it's something that's easy to assess). This one has eight authors without an "et al." Your others all go six authors, et al.
  • Ditto Rasa, et al. (2018) and Mohamed, et al. (2023). Check the rest there might be a few others. Sorry to bring up something so trivial.
  •  Done. I think I've got them all. —Femke 🐦 (talk) 15:41, 13 April 2024 (UTC)
• Ditto Cvejic, et al. 2016 (ref 33). This seems like the kind of thing others would've written about more recently (I hope).

  We have the 2022 Scientific report paper, which is not the best-written source. BMJ just says there are problems with attention, memory and reaction speed. IQWig has a short symptom description, but I think Cvejic is still the better source. —Femke 🐦 (talk) 13:44, 13 April 2024 (UTC)

• Nijs, et al. 2012 (ref 34) is an odd source for a broad claim. I don't really doubt the claim, but perhaps you can find a better source? The sentence can probably be cut without losing much as well, if you prefer.

   Done. Removed. —Femke 🐦 (talk) 12:28, 13 April 2024 (UTC)

• Unger, et al. 2016 (ref 38) - I don't have a problem with this 2016 paper being used in general. But "The cause of ME/CFS is unknown" (and the next three uses, all in the same paragraph) should be cited to something more recent. The last use of it can be cut, the CDC source has the same info.
• Refs 19 and 88 (CDC/Epidemiology) are the same.

   Done. —Femke 🐦 (talk) 11:23, 13 April 2024 (UTC)

• Ref 39 is only barely outside MEDDATE's prescription, and would normally be fine. But since it's only citing ME/CFS is a biological disease, not a psychiatric or psychological condition, I imagine it can be easily replaced with something more recent.

  More recent reviews imply this, but don't state it explicitly (at least, the 5 top sources I've used most). This may be because the debate has been resolved for a while now? —Femke 🐦 (talk) 11:23, 13 April 2024 (UTC)

  [32] @ —Femke 🐦 Not boilerplate explicit, but I believe this review would qualify as supporting the wording. It's a judgement call. Ward20 (talk) 13:24, 14 April 2024 (UTC)

• Can Tanaka, et al. 2015 (ref 51) be replaced with something more recent?

   Done; newer source supports this too. —Femke 🐦 (talk) 13:25, 13 April 2024 (UTC)

• Ditto van Cauwenbergh 2014 (ref 53, also its URL isn't currently working for me), Nijs 2014 (ref 55), Armstrong 2014 (ref 56), Morris 2013 (ref 57), and Morris 2014 (ref 58). Each ~10 years old and used just once. None cite particularly controversial claims, but since they're on the evolving topic of where ME/CFS comes from, it'd be nice to show that current theories are being represented.

  I've removed all but Nijs (2014). Given how key PEM is to the disease, and given that there is quite a lot of primary research being published in this direction, I think the article is stronger with this. I've got 2 good overview sources on pathophysiology. The BMJ source does not discuss this. The Long COVID / ME/CFS comparison paper, which mentions some of these issues in a more narrative sense with less detail. —Femke 🐦 (talk) 08:48, 14 April 2024 (UTC)

• Sotzny, et al. 2018 (ref 59) has an "et al." in the author list when it looks like one isn't warranted. Glancing at the cite template, I don't really understand why it was generated. I think |collaboration= is making it act funny.

  As there were 7 authors, I've omitted the last author. —Femke 🐦 (talk) 07:13, 14 April 2024 (UTC)

• Lim et al. 2019 (ref 51) is from MDPI which has a poor reputation. You're not referencing anything particularly controversial here, but be choosy about where you use MDPI journals, and be prepared to justify each use.
• Ditto Nacul, et al. 2021 (ref 60) and Pheby, et al. 2020 (ref 96), the EUROMENE sources. Assuming that's a legit consortium since it has a fancy name?
• Ditto Vink and Vink-Niese 2022 (ref 102). Independent researchers are rarely taken seriously in modern biomedical research. That said, I've heard little bits of the PACE trial murmurings from afar and gather this is an unusual situation. As above, if this is really a good source, just be prepared to justify it.
• Ditto Tate, et al. 2023 (ref 112) and Missailidis, et al. 2019 (ref 113).
• Diagnosis of ME/CFS (CDC, ref 55) is updated since the reference was written. Check info and update.

  Done. —Femke 🐦 (talk) 17:12, 18 April 2024 (UTC)

• Bansal 2016 is nearly 8 years old and the info it cites is fully covered by the CDC source. Suggest removal?
• Hakim, et al. 2017 (ref 61) - the URL leads to the wrong place. If highlighting a more lay-friendly summary was intentional there used to be a {{{lay-source}}} parameter in cite journal, but it was recently removed. You can accomplish the same within the <ref></ref> brackets if you wish, but make it more clear that the summary is separate from the article.
• Monitoring the Use... (CDC, ref 64) has an overlong ref title and the wrong date.

  Done. —Femke 🐦 (talk) 17:12, 18 April 2024 (UTC)

• Nielson, et al. 2013 is a bit old to be citing for "and is now commonly used...".
• Castro-Marrero, et al. 2017 (ref 74) isn't that old, but it seems like the material it references is also supported by the adjacent CDC source (2021).
• Prognosis (CDC, ref 75) has the wrong year.

  Done. —Femke 🐦 (talk) 17:12, 18 April 2024 (UTC)

• ME/CFS in Children (CDC, ref 77) - Why the quote in the ref? My personal preference would be removing it, but I won't demand it.

  Removed. —Femke 🐦 (talk) 17:12, 18 April 2024 (UTC)

• I didn't look into this, but is something weird with Bowen, et al. 2005 (ref 97)? It's reference "In a 2006 survey..." but the paper was published in 2005. Typo or am I misunderstanding something?

  Weird yeah, removed as per discussion below. —Femke 🐦 (talk) 17:12, 18 April 2024 (UTC)

• Blease and Geraghty 2018, I think the quote within the title should be in single quotes per Wikipedia:Manual_of_Style#For_a_quotation_within_a_quotation.

  Trust you on this, done. —Femke 🐦 (talk) 17:12, 18 April 2024 (UTC)

• Is Radford and Chowdhury 2016 (ref 103) reliable? I'm unfamiliar with the organizations, and as you point out, they misspelled their own title.

Made it through a first time, thanks for the interesting read! I'll probably be largely unavailable this weekend, but will be back at it next week. Hoping to spotcheck some sources, take a look at the images, and read a couple papers to get a sense of the article's "comprehensiveness". Sorry I'm so slow. Just working it into the time I have. No need to wait on me for anything if you want to get more opinions, etc. Ajpolino (talk) 17:09, 5 April 2024 (UTC)

Thank you for the incredibly detailed review! I hadn't noticed how much my writing style had revered to overly sciency: maybe I've got a bit less confidence compared to my normal field. No hurry at all: I'm on holiday at the moment, so only doing a bit of phone editing. —Femke 🐦 (talk) 15:38, 7 April 2024 (UTC)

illness can fluctuate significantly[33]

"unpredictably in nature and severity over a day, week or longer.[34] pg 9, that seems to fluctuate significantly, for multiple reasons, IMO. Also, the citation could go to the end of the sentence so it isn't in the middle. Ward20 (talk) 23:18, 1 April 2024 (UTC)

Order of Symptoms

In signs and symptoms "fatigue" is first before "PEM".

I personally think PEM should go first as it is the defining symptom (or meta-symptom) of the disease, the one which leads to significant functional limitation, and the one most readers will not be familiar with unlike "fatigue". Additionally, focus on fatigue, while a debilitating symptom, is often overstated as a result of the (mostly failed) attempts to rebrand ME/CFS as a broad "general fatiguing condition': "Chronic Fatigue Syndrome". YannLK (talk) 21:14, 5 April 2024 (UTC)

rarity of recovery

" full recovery is rare." I looked into the source materials and while there is the claim of 5% in a systematic review, there's also a huge discrepancy between the data, some claim over 90% some under 5%. The lack of unified definition for decades, the long duration of the illness and underdiagnosing all contribute to the fact, that we just don't know the recovery rates, it is misleading to claim it rare, there's evidence of both and it largely depends on age (in teenagers some studies cite it upwards of 95%). MikeMatyMatta (talk) 16:43, 9 April 2024 (UTC)

Most of the evidence that shows it not being rare uses very outdated diagnostic criteria of which only a small percentage have what we would now consider as ME/CFS. Ie. the fukuda 1994 criteria will pick up a lot of people who have depression and other causes of “chronic fatigue” and similar symptoms while not requiring PEM. YannLK (talk) 18:23, 11 April 2024 (UTC)

The ref we use for it being rare uses the same outdated criteria, and is based on the 19 year old Cairns review. That review gives a 5% figure for untreated CFS, and 23.5% with secondary care. We should either remove that completely, or give more details to make it NPOV. sciencewatcher (talk) 16:40, 12 April 2024 (UTC)

This study published in 2022 of 168 patients over a 9 year period uses ICC and finds similar results: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9600584/ .

“Recovery and improvement rates were 8.3% and 4.8%, respectively. [..] The study findings confirmed the poor prognosis of ME/CFS” YannLK (talk) 17:11, 12 April 2024 (UTC)

That is just for their single study, but they do review other studies and say the recovery rate ranges from 0-8% and improvement ranges 17-64%. Strangely they cite Cairns in the 0-8% range for recovery even though Cairns gives a range of 0-31%. They also give factors that influence prognosis: "A worse prognosis was reported in ME/CFS patients with comorbid fibromyalgia [30], and some studies [16,25], but not others [13,19], showed that psychiatric comorbidity is predictive of poor CFS outcome.

Other factors, such as life stressors [31,32], female gender [32,33], and lower socioeconomic status [34] were also reported as being predictors of outcomes." sciencewatcher (talk) 19:31, 12 April 2024 (UTC)

Yes, as far as I know, there has been a history of consistently contradictory findings on the factors which influence prognosis. YannLK (talk) 19:37, 12 April 2024 (UTC)

I've weakened the statement to uncommon. Not all of our top sources make any type of claim on prognosis. NICE says some recover, most don't. BMJ says <10% for adults, but more for adolescents. From long COVID research, it's becoming clear that there is quite a high recovery rate in adults between 3 and 6 months (like 1/3 recovers), before recovery plateaus; so there might be higher recovery rates if diagnosis isn't delayed as much. —Femke 🐦 (talk) 13:35, 13 April 2024 (UTC)

Post-exertional malaise (PEM) is a necessary attribute of ME/CFS, lack of PEM excludes ME/CFS

According to the 2015 diagnostic criteria for ME/CFS by the Institute of Medicine (now the National Academy of Medicine) described at https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html, three symptoms and at least one of two additional manifestations are required for diagnosis. The three required symptoms are:

• A substantial reduction or impairment in the ability to engage in pre-illness levels of activity that lasts for more than 6 months, is accompanied by fatigue that is often profound, of new onset, not the result of ongoing or unusual excessive exertion, and not substantially alleviated by rest.
• Post-exertional malaise (PEM) — worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness. PEM often puts the patient in relapse that may last days, weeks, or even longer.
• Unrefreshing sleep.

At least one of the following two additional manifestations must be present:

• Cognitive impairment.
• Orthostatic intolerance.

Therefore, even if all other symptoms are present, the lack of PEM would exclude a diagnosis of ME/CFS according to these criteria.

There are different criteria proposed by different institutions, still most of them consider Post-Exertional Malaise (PEM) as a key symptom:

• The NICE guidelines https://www.nice.org.uk/guidance/ng206 https://www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management also explicitly state that PEM is a required symptom for diagnosis. According to the criteria, all of these symptoms should be present:
  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
  • Post-exertional malaise after activity in which the worsening of symptoms:
    • is often delayed in onset by hours or days
    • is disproportionate to the activity
    • has a prolonged recovery time that may last hours, days, weeks or longer.
  • Unrefreshing sleep or sleep disturbance (or both), which may include:
    • feeling exhausted, feeling flu-like and stiff on waking
    • broken or shallow sleep, altered sleep pattern or hypersomnia.
  • Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
• The ICC requires PEM as a core symptom: https://mecfssa.org/wp-content/uploads/2021/07/ICC_criteria.pdf
• Canadian Consensus Criteria (CCC) also requires PEM as a core symptom: https://www.meresearch.org.uk/canadian-criteria/
• CDC criteria, which are based on the IOM criteria, also require PEM as a core symptom: https://www.cdc.gov/me-cfs/healthcare-providers/index.html

The article only currently states that PEM is a "hallmark feature": quote: "The hallmark feature of ME/CFS is a worsening of symptoms after activity"

Can we explicitly state that the lack of PEM would exclude a diagnosis of ME/CFS, because the term "hallmark feature" is not precise enough (ambigous)? Maxim Masiutin (talk) 22:04, 9 April 2024 (UTC)

There are three symptoms that are necessary for diagnosis in most criteria sets (debilitating fatigue, PEM, sleep dysfunction). PEM is the most distinctive of the three. The way we now word it, it emphasizes PEM above the other two core symptoms. PEM is not required in Fukuda, the historically most popular criteria (Now fast losing popularity). —Femke 🐦 (talk) 15:07, 10 April 2024 (UTC)

OK, if you think that no change is required, then let it be so. It was just not evident for me, so I had to dig various sources to find out that PEM is requried for all criteria that I could find. I didn't know that PEM is not required in Fukuda. Maxim Masiutin (talk) 17:07, 10 April 2024 (UTC)

Though to be fair Fukuda is only clung onto by the minority BPS researchers and their successors but is not used by anyone else in the field (bar Brian Wollitz but I think he’s got very similar “somatoform” views to those BPS researchers.) YannLK (talk) 18:27, 11 April 2024 (UTC)

@YannLK my point is that the current Wikipedia article is not clear enough: I had to dig other sources to figure out whether lack of PEM rules out ME/CFS. I don't agree with a statement that how it is now written in Wikipedia is clear enough. Maxim Masiutin (talk) 20:21, 11 April 2024 (UTC)

Yes I was more replying to @Femke ‘s reasoning and agreeing with you. YannLK (talk) 21:41, 11 April 2024 (UTC)

Well, CDC defers to IOM which states PEM and three other symptoms are required[35]. NICE is a bit more nuanced talking about suspected ME/CFS and PEM and three other symptoms should be present [36] pgs. 11 & 15. Then on pgs 64,65 NICE acknowledges the criteria are not absolute and talk about the importance of combinations of symptoms (clinical expertise?), so there still is some uncertainty about absolute requirements for a clinical diagnosis. Ward20 (talk) 22:36, 14 April 2024 (UTC)

My understanding of guidelines of Wikipedia guidelines, as outlined in WP:DUE, WP:MEDRS, and essays such as WP:CONFLICTING, are the following. These guidelines emphasize that the current consensus should be prioritized when there is a shift in academic or general consensus over time. This ensures that the information presented is accurate and reliable. For example, if a diagnostic criterion (as published in one source) is regularly updated, but another criterion has not been updated since its last publication several years ago, the older criterion can be replaced by the newer one. This aligns with general rules of Wikipedia for medical sources, which state that a newer source of equal or higher quality supersedes an older source (WP:MEDRS). If cited, older works should be clearly identified as such and primarily used to illustrate the historical evolution of the subject mentioned in an article. If the conflict pertains to the interpretation of facts rather than the facts themselves and cannot be resolved by identifying errors in some of the conflicting sources, all significant viewpoints published by reliable sources should be included with appropriate attributions to maintain a neutral point of view. In such cases, it is the reader's prerogative to decide which source to believe, not the responsibility of Wikipedia editors. Please let us use clear and unambiguous language when representing conflicting viewpoints. This enhances the reader's comprehension and ensures that all viewpoints are fairly represented. For instance, using terms like "hallmark" can add unnecessary ambiguity. Instead, articles should clearly represent all significant viewpoints published by reliable sources in proportion to the prominence of each viewpoint. For example, instead of stating "feature Z is a hallmark of illness X", which is ambiguous, it would be more straightforward to state: "Source A asserts that the absence of feature Z excludes the diagnosis of X, whereas Source B contends that feature Z should be present in the diagnosis of X, but does not explicitly require it". This approach ensures that all viewpoints are fairly represented and understood by the reader. As you see, my concerns are justified, and they are also shared by the other Wikipedia editors, for example, by User:YannLK. Please consider eliminating the existing ambiguity in the ME/CFS article related to whether PEM is a required condition for a diagnosis of ME/MFS so that the lack of PEM rules out ME/CFS. The goal of Wikipedia is to fairly interpret sources, not to add ambiguity that forces readers to spend additional time extracting information from those sources. A reader should not have to invest hours deciphering the actual situation after reading a Wikipedia article. By ensuring clarity and precision in the presentation of information, we can enhance the user experience and uphold the integrity of Wikipedia as a reliable and accessible source of knowledge. That's why I disagreed with User:Femke who wrote that how it is currently presented is OK. I think it is very not OK and should be resolved. I would like to add a personal note to underscore the importance of this issue. I have personally spent a significant amount of time trying to understand the situation due to the ambiguous presentation of information in the article. I had to delve into the sources myself to decipher the current state of affairs. The editors who nominated the article for GA status were well aware of this ambiguity. If they had explicitly addressed this in the initial version of the article, I would not have had to spend so much time figuring it out. This is precisely what Wikipedia is for - to provide a fair and unambiguous synthesis of the sources. However, in this instance, Wikipedia did not fulfill its role. Despite my personal involvement and potential bias, I implore you to address this issue. It is crucial for Wikipedia to serve its purpose as a reliable and accessible source of information. Maxim Masiutin (talk) 05:35, 15 April 2024 (UTC)

@Maxim Masiutin. Can you collapse that and rewrite without posting a wall of text? I have limited ability to read due to long COVID and I cannot parse such a long paragraph-less text. Are you looking for a change in the lead (in addition to an image which we're working on above, which has PEM as one of the 4 symptoms, which the caption will say are all required by NICE). If so, can you propose wording?

In terms of Fukuda only being used by PBS researchers, I don't think that's true either. For instance, Jarred Younger (the neuroinflammation guy) uses Fukuda sometimes, as it's difficult to get enough volunteers if you make the criteria stricter.

The difference between suspected and confirmed ME/CFS in NICE relates timescales (6 weeks vs 3 months). For both, PEM is required in the NICE criteria. —Femke 🐦 (talk) 18:02, 16 April 2024 (UTC)

Let me collapse. The current term "hallmark" is misleading. You can keep it but explicitly write that "in all criteria except Fukuda PEM is a required condition for a ME/CFS diagnosis so that lack of PEM rules out ME/CFS" to resolve ambiguity. Maxim Masiutin (talk) 22:03, 16 April 2024 (UTC)

Controversy in lead

Shouldn’t there be some detail in the lead about the controversy around the illness other than just a link to the article about it? Thriley (talk) 04:11, 12 April 2024 (UTC)

What specific controversy are you referring to?

The fact that a large majority of researchers agree it is a biological illness, bur many clinicians dismiss it due to lack of awareness about the condition? YannLK (talk) 14:59, 12 April 2024 (UTC)

Doctor–patient relations section

It has some material about percentages of doctors perceptions in the UK based upon surveys from 2006 and 2009. I believe that's too old to rely on now that IOM, CDC and NICE has updated guidance. Ward20 (talk) 22:51, 14 April 2024 (UTC)

I've been tempted to delete those too, yeah. So be my guest :). —Femke 🐦 (talk) 18:18, 16 April 2024 (UTC)