This is an archive of past discussions about Myalgic encephalomyelitis. Do not edit the contents of this page. If you wish to start a new discussion or revive an old one, please do so on the current talk page.
Current image: Brain imaging, comparing adolescents with CFS and healthy controls showing abnormal network activity in regions of the brain
We currently show a brain image that is very difficult to understand. The 2016 primary study uses an unrepresentative definition of CFS, only requiring fatigue (so broader than Fukuda).
Proposed image: a change in maximum oxygen intake between an exercise test on two consequetive days; a comparison between people with ME/CFS and people with idiopathic chronic fatigue.
I'd like to replace it with an image of a 2-day CPET. Commons has a few images based on primary data. Here, we do have a few more recent reviews explaining these results, for instance the 2024 BMJ practice guidelines. What do you guys think? Maybe the right halve of the image here. The results are a bit different from what MEDRS describe, in the sense that the comparison group is ICF, rather than healthy controls.
The question: Are images (1) subject to the same MEDRS criteria? (2) okay if they give an example of a finding detailed in MEDRS sources? (3) not subject to medrs sourcing requirements? —Femke 🐦 (talk) 17:12, 27 January 2024 (UTC).
Generally speaking, the purpose of an image is to illustrate existing article content. That illustration can certainly be an example rather than a universal (this apple, not all apples).
The level of comprehension for the first image here is likely to be approximately "Something about their brains is different", which is not entirely a bad thing. Whichever image you choose (or if you decide to use both), I'd suggest keeping the captions simple and direct. Perhaps as simple as "Research has found differences in the brain network activity", without mentioning the age of the study participants, control groups, or anything "technical". The second image could have a caption that says something like "When they exercise two days in a row, ME/CFS people get worse on the second day." (Or whatever the point of the illustration is.) WhatamIdoing (talk) 23:27, 9 February 2024 (UTC)
Rewrite of history section
While I always prefer to write sections collaboratively, I decided to rewrite this in one go, as there was significant WP:COPYVIO, which I didn't want to keep on the page for longer than necessary. I think it's okay 4 out of 5 paragraphs are mostly based on the IOM report, since that is an excellent and neutral history of ME and CFS. Very happy to get feedback on that or any other part of the rewrite.
I'm aware of overlap with the controversy section. I may rewrite that too at some point, but I think you can't write a history of ME/CFS without the psychological controversy. —Femke 🐦 (talk) 19:59, 5 February 2024 (UTC)
The IOM report does not include these details, at least around the antibody titer. Can you ensure the text matches the source? Or find another secondary source on the history? —Femke 🐦 (talk) 21:08, 5 February 2024 (UTC)
I think the article is close to meeting the GA criteria now. I hope to bring the article up to FA level, and want to make sure the article is at least comprehensive before nominating for GA, so that we can get feedback on the entire article. Two questions for talk page watchers:
On my to-do list before I nominate is a rewrite of three bits:
The causes section, and non-viral triggers like stress, pregnancy and mold. Done
The neuro-inflammation paragraph (which relies too much on an older work for NPOV)
The research section, which has overlap with the pathophysiology section and for which the James Lund Alliance paper is better than the MPDI journal. The NIH research roadmap (to be published in May), will allow for an ever better section likely.
Finish the signs and symptoms section with description of debilitating fatigue, pain and sleep problems. Done
Thank you for the opportunity to participate and I will do what I can, although my time to edit is a bit spotty at the moment. I just did a reread and besides what has been listed I would suggest:
Revisit the time for diagnosis. It is somewhat incomplete in the article and the literature is murkey because CDC says six months, NICE says three months and to treat as soon as possible for children. Other sources say prompt appropriate treatment can reduce the scope of the illness and even improve prognosis. I think it's an important aspect to present properly in the article.
The article uses treatment and management interchangeably and it could be somewhat confusing to the reader. I have some difficulty conceptionally with it in the article, but sometimes I'm over-analytical.
I think the controversy section needs some rework. The pace trial was arguably as controversial as XMRV. The controversy sub article is quite well done, but there's been such an amount of controversy it may take consensus about how much to cover. I like how the sub article presents the items under tiles such as Recognition, Contrasting viewpoints, XMRV retrovirus, PACE trial, Support for patients and Historical perceptions. I suggest bringing research funding under controversy. I suggest adding the conflict of interest of the disability benefit government programs and insurance companies over the definitions and classification of the illness that reduced financial disbursements.
That's really useful. I will definitely include more about delays in diagnosis. I've recently added it to the prognosis section, and will also add it to the diagnosis section from that angle.
I think we are shooting ourselves in the foot with our section on proposed treatments. The suggested headings in WP:MEDORDER are either management or treatment, where management is preferred over treatment for chronic conditions. I do not believe it is quite neutral to put graded exercise therapy in the table of contents, as people might easily skip over the work proposed, and believe GET is a treatment option recommended in clinical guidelines.
Conversely, people only reading the cognitive behaviour therapy may come away with a very negative idea about CBT in general, rather than the more nuanced view found in the management section (useful for coping and insomnia).
Your suggestion to put the pace trial in the controversy section may resolve our disagreement from before: that way we can give due attention to graded exercise therapy, without suggesting the therapy is still included in clinical guidelines. —Femke 🐦 (talk) 13:28, 11 February 2024 (UTC)
About the PACE trial, more mainstream sources discuss the methodological flaws in the trial [2], the Freedom of information requests, and how scientists were reprimanded by the tribunal for exaggerating harassment f.i. [3]. I've seen a conflict-of-interest angle from patient organisations and more niche scientific journals, but I find the sources insufficient from a BLP point of view. When we make strong accusations about living people, the sources need to be due without a doubt.
The BLP policy also covers talk pages by the way. This means that you should always use of high-quality source when discussing these issues even on talk. Of course you didn't name names here, but they are not too hard to guess. —Femke 🐦 (talk) 17:15, 11 February 2024 (UTC)
No, I wasn't thinking about individual conflict of interest, More about CoI of Government and insurance agency's historical denial of disability claims based on a lack of a conclusive test. Also, denial and time limits on payments (usually 24 months) by claiming the illness is a mental disorder. This material has some coverage in the controversy sub article.
Ah, that makes sense, sorry for the misunderstanding. I don't think there is a lot of controversy over this in media. A better location may be in the social and economic impact subsection instead. This is going to be really tough to write from a global perspective, as the US has a "unique" health care system, so results from the US cannot be assumed to be generalisible. —Femke 🐦 (talk) 17:55, 12 February 2024 (UTC)
I misread your point about time for diagnosis. I've added a sentence about delays in diagnosis, but that wasn't what you meant.
The way to incorporate this is to change from bullet points with intricate details of the diagnostic criteria, to an assessment on how they are different. For instance, which are research vs clinical diagnostic criteria, and how does that impact their formulation (clinical criteria will have an earlier presumtive diagnosis, given that you don't want to withhold care while investigating). The 2024 BMJ source gives some nice pointers here. Maybe I'll cultivate some patience and rewrite this too before a GA nom. —Femke 🐦 (talk) 19:58, 21 February 2024 (UTC)
Controversy section
My proposed rewrite of the controversy section. I've decreased the overlap with the history section, and have increased overlap with the "proposed treatments" section, in the hope we can move towards removing that section. I have also removed the mentiono of the newsweek article, which is old news, and included a summary of the PACE controversy.
We didn't have an article on outcome switching yet, which I remedied yesterday. I'm quite shocked to see how common it is, and how often study authors defend the practice when called out on it.
ME/CFS is a contested illness, with debates mainly revolving around the cause of the illness and treatments.[1] Historically, there was a heated discussion whether the condition was psychological or neurological.Lim and Son Professionals who subscribed to the psychological model had frequent conflicts with patients, who believed their illness to be organic.[2] While ME/CFS is now generally believed to be a multisystem neuroimmune condition,Lim and Son a subset of professionals still see the condition as psychosomatic, or an "illness-without-disease".[2]
In 2009, the journal Science[3] published a study that identified the XMRV retrovirus in a population of people with CFS. Other studies failed to reproduce this finding,[4][5][6] and in 2011, the editor of Science formally retracted its XMRV paper[7] while the Proceedings of the National Academy of Sciences similarly retracted a 2010 paper which had appeared to support the finding of a connection between XMRV and CFS.[8]
Treatments based on behavioural and psychological models of the illness have been the subject of much contention. The largest clinical trial on behavioural interventions, the 2011 PACE trial, concluded that graded exercise therapy and CBT are moderately effective. The trial drew heavy criticism.[1] The study authors changed the definition of recovery during the trial, which led some patients to be classified as recovered at the start of the trial. A reanalysis under the original protocol showed no significant difference in recovery rate between treatment groups and controls.[9]
Open questions:
I don't like how the second paragraph flows. Maybe we can summarise this further, since it's 15 years ago? But how to connect that sentence to other text?
I don't the 2013 Speight article is sufficiently reliable, will add something about patients being disbelieved to social impact section. Does that work? I found a recent scoping review on internet use that talks about this; mainly about people not being believed by their community. The doctor-patient section already talks about how doctors disbelieve patients.
References
^ abBlease C, Geraghty KJ (September 2018). "Are ME/CFS Patient Organizations "Militant"? : Patient Protest in a Medical Controversy". Journal of Bioethical Inquiry. 15 (3): 393–401. doi:10.1007/s11673-018-9866-5. PMID29971693.
^ abO'Leary D (December 2020). "A concerning display of medical indifference: reply to 'Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox'". Medical Humanities. 46 (4): e4. doi:10.1136/medhum-2019-011743. PMID32601171.
I concur with the changes above and with reworking the XMRV part. I do have a couple of suggestions.
The sentence, "The study authors changed the definition of recovery during the trial, which led some patients to be classified as recovered at the start of the trial" might be clearer with wording similar to, "The study authors changed the definition of recovery during the trial, which increased the number of recovered patients at the conclusion of study. Due to the changed recovery definition, some patients met the recovery criteria at the start of the intervention."
A condensed XMRV section could be included in the paragraph along with material about viruses similar to: "Human herpesviruses, Ross River virus, Enteroviruses, and Human parvovirus B19 have long been associated with ME/CFS in studies, but none of these viruses could be associated with a majority of patients. These viruses may cause illness in patient subgroups, or they might be hit-and-run triggers for ME/CFS.[4] One viral study caused considerable controversy by establishing a causal relationship between ME/CFS and the retrovirus XMRV.[5] Some with the illness began taking AIDS drugs[6], and national blood supplies were suspected to be tainted with the retrovirus. After several years of study, the XMRV findings were determined to be the result of contamination of the testing materials.[7]"Ward20 (talk) 07:07, 21 February 2024 (UTC)
I've asked chatgpt to reword more concisely (I erred in the opposite direction), and we came up with The study authors changed the criteria for recovery, leading to more recovered patients by the end of the trial. Some patients even met the criteria at the intervention's outset.
As for the XMRV study, the Panelli study is primary and published in a Frontiers journal, so not great. Which is a shame, as your text is excellent. The Rasa study is a great addition to the 'viral and other infections' subsection, where I've added it to replace a source with WP:Integrity issues. I think we'd need a shorter introduction into that section, something like: "The possible role of chronic viral infection in ME/CFS has been a subject of debate" (cite Rasa).. The only thing we still need a high-quality reliable source for the XMRV stuff. —Femke 🐦 (talk) 19:32, 21 February 2024 (UTC)
Added secondary sources for the XMRV material. I think that the last sentence about PACE should be a bit more specific, After the change, some patients even met the criteria at the intervention's outset.Ward20 (talk) 04:26, 22 February 2024 (UTC)
Treatment section, revisited
Now that our management section is in a reasonable condition, and we discuss former treatments in the controversy section, I'd like to reopen the discussion of bringing the article more in line with WP:MEDORDER. Medorder suggests that management is typically the best option when talking about chronic illnesses. The key reasons I would like to follow MEDORDER here are:
I think having proposed treatments is not neutral. People may come away with the idea these are actual treatments, or close to being approved. CBT as treatment and GET are controversial and better discussed in context of non-controversial talking therapy and exercise / in the controversy section. In Wikiwand, the AI sometimes summarises the article as supporting GET and CBT as treatment, which a sloppy / brainfogged reader will likely do to.
Ampligen is considered "emerging" per the BMJ source, not mentioned in 2021 Mayo, not mentioned in the main NICE guidelines, mentioned as one of many drugs in their pharmaceutical evidence review, and also one among many in the German HTA. I would like to move it to the research section, making that a full sentence, rather than a short sentence. Putting it in its own subsection is undue weight.
This study came out today: "Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics" [8]. It's in a special issue focusing on ME/CFS in MDPI's Journal of Clinical Medicine. I know that some MDPI journals are viewed as deserving of a better reputation than it's carried, or at least some titles. I haven't had a chance to look at this, and as it may be considered a primary source, it may well not merit consideration for the article, at least at this point. But while I have seen a number of ME/CFS publications in this and other MDPI journals over the past couple of years, I was wondering if that was raising the credibility of the journal(s), or reducing the potential impact of the papers themselves considerably.
But, seeing the CDC--well, it's part of the Multi-Center ME/CFS outfit that's been going for some time, and the first several authors are CDC--choose to publish this here is something I'm curious about. Lead author is Elizabeth Unger, head of the ME/CFS division at CDC for over a decade. Does any of this matter? I've seen so much very specific MEDRS-related criticism when it comes to journals with questionable histories, as well as rebukes of criticisms of the CDC over the years. If it strikes anyone as meaningful...should it be brought to the attention of those on WP who render judgments on these matters? NeurastheniaMilkshake (talk) 07:04, 29 February 2024 (UTC)
Cool study. Like you said, it's a primary source, and therefore we should not cite it. Generally, about the reliability of MPDI and Frontiers journals: guidelines already says we should evaluate them case-by-case. For instance, we have cited MPDI journals when they reported the results from the EUROMENE consortium, as these are published in the better MPDI journals, are from a highly-regarded consortium, and importantly, are frequently cited by sources we consider highly reliable. Scopus provides a ranking of journals, with the Journal of Clinical medicine ranking 137/830 in the category of general medicine. If it's top 50%, it's usually fine, even though the more controversial a statement, the stronger our sourcing needs to be. Special issues typically bring their own issues: normal editors are replaced by invited editors, who may not have the same standards in accepting papers. I believe current guidelines strike a good balance between caution, and flexibility. —Femke 🐦 (talk) 08:20, 29 February 2024 (UTC)
Thanks for calling attention to the study. After reading it, my impression is the same as Dr. Bateman's. "Bateman says the study was well executed and comprehensive, but she doesn't see anything groundbreaking. However, she's hopeful the data will serve as a "foundation" for future research."[9]Ward20 (talk) 23:45, 1 March 2024 (UTC)
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)
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)
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.
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.
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)
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:
"unavaible" (sic),
use of curly apostrophe instead of the straight one in violation of the Manual of style ("people’s")
"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.
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)
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)
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:
pacing and activity management
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.
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-infectionMaxim 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)
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:
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 PMID16272188 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)
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)
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.[11] The citation[12] uses "standing", not "standing up", and in another source,[13] "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)
Lead, illness impact material
Two sentences switched position here.[14],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)
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
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.[1]: 3 ME/CFS negatively impacts social lives, and can be isolating.[2]
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.
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)
"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."
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)
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.
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)
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)
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:
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.
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.
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:
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[16], 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.[17]"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[18]. NICE links/states the description of ME/CFS fatigue in Terms used in this guideline,[19] 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."[20] 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."[21] 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:
PwME experience fatigue even when they don't experience PEM
The fatigue is made worse my PEM
The fatigue experienced in ME/CFS is worse than the usual tiredness after (normal) physical activity.
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:
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.
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.
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"[22] which I interpret as exertion a person is not used to, and not always bad. NICE; "profound fatigue that is unlike normal tiredness"[23] CDC; "The fatigue of ME/CFS:...Is not a result of unusually difficult activity."[24]
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?)[25] 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[26] (IF 6.7 which is respectable), for Cell[27] IF 67. And the other MPDI source[28] (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)
"unpredictably in nature and severity over a day, week or longer.[30] 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)
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)
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)
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)
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)
Post-exertional malaise (PEM) is a necessary attribute of ME/CFS, lack of PEM excludes ME/CFS
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:
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 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)
Well, CDC defers to IOM which states PEM and three other symptoms are required[31]. NICE is a bit more nuanced talking about suspected ME/CFS and PEM and three other symptoms should be present [32] 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)
Lead image
The lead image is not great. I see the following disadvantages:
It's not accessible/readable. There is too much text
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:
No image in lead
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 [33]. 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.
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 [34], but I would propose we use names too.
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.[35][36] 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.[37]
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)
My first attempt would be the following. Don't respond to the "design bit" yet. . I would like feedback on:
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.
The choice of words. Two ones I'm least sure about:
Severe fatigue --> It may weaker than debilitating fatiguability that NICE uses, but that's horrible jargon
Worsening after activity --> PEM is a poor word choice for PESE, and jargon. I think this captures it best in 3 words or less..
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'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 [42] 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.[43]
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:
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?
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)
WASF3
Hey @Sciencewatcher I noticed you removed the WASF3 findings because they were “remove speculation based on single study from one patient”.
I agree with you that these findings should not be claimed as fact, because they have indeed only been found in one study.
However your statement that it is based on a single patient is false. As per the abstract of the study “Expanding on our findings, skeletal muscle biopsy samples obtained from a cohort of patients with ME/CFS showed increased WASF3 protein levels”
This finding potentially explains a mechanism behind the disease, and is one of the main findings to do so. It was first found in one patient then confirmed in a cohort of patients. If we include the caveat that it is a single study, that the findings need confirmation, it may still be worth a quick mention in the pathophysiology section. Or even in the research section. Wonder what you (and others) think? YannLK (talk) 10:21, 20 April 2024 (UTC)
I'm weakly leaning include here. Both high-quality reviews on pathophysiology that have come out since the paper was published dedidate space to the findings. BMJ a long sentence, Annesley a full paragraph. The Annesley et al paper uses few caveats (WASF3 was identified in muscle cells, rather than a single study with a low number of participants found.. ). It was one of those rare papers that delved really deep into the matter (mouse model, testing medication in vitro, etc etc). —Femke 🐦 (talk) 11:28, 20 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 removed both and replaced it with some text about how the patient- doctor relationship changes when patients learn more about their illness. —Femke 🐦 (talk) 08:47, 21 April 2024 (UTC)
Confusing graphic
One of the images compares the subject of the article with "ICF" , an acronym never covered in the article. I had to click on the image and go to commons to find out you mean Idiopathic chronic fatigue. (t · c) buidhe23:16, 22 April 2024 (UTC)
The 3rd paragraph has redundancy, saying that ME affects health
That sentence fits better in either social impact or symptoms. The symptom paragraph is already quite full, with some requests to describe PEM better (more words(?)).
The 3rd paragraph is too long compared to 4
The controversy sentence feels like it isn't connected (see #Controversy in lead)
The controversy sentence is bit wordy.
I propose the following rewrite:
The severity of the illness can fluctuate over time, but full recovery is uncommon.[1]About a quarter of patients are severely affected and unable to leave their bed or home. ME/CFS negatively impacts people's health and abilities and can cause social isolation. Treatment is aimed at relieving symptoms, as no therapies or medications are approved to treat the condition.: 29 Pacing one's activities to avoid flare-ups may help manage symptoms, and counselling may aid in coping with the illness.[2] Before the COVID-19 pandemic, ME/CFS affected roughly one in every 150 people, although estimates vary widely due to differing definitions used in studies.[3] However, many people with long COVID fit ME/CFS diagnostic criteria.[4] ME/CFS occurs 1.5 to 2 times asmore often in women as in men.[3] It most commonly affects adults between ages 40 and 60 but can occur at other ages, including childhood.[5]
ME/CFS has a large social and economic impact. About a quarter of individuals are severely affected and unable to leave their bed or home.[6]: 3 The disease can also be socially isolating.[7] People with ME/CFS often face stigma in healthcare settings and care is complicated by controversies around the cause and potential treaments of the illness.[8] Clinicians may be unfamiliar with ME/CFS, as it is often not covered in medical school.[4] Historical research funding for ME/CFS has been far below that of diseases with comparable impact.[9]
Clean version of the newly proposed text
The severity of the illness can fluctuate over time, but full recovery is uncommon.[1] Treatment is aimed at relieving symptoms, as no therapies or medications are approved to treat the condition.: 29 Pacing one's activities to avoid flare-ups may help manage symptoms, and counselling may aid in coping with the illness.[2] Before the COVID-19 pandemic, ME/CFS affected roughly one in every 150 people, although estimates varied widely.[3] However, many people with long COVID fit ME/CFS diagnostic criteria.[4] ME/CFS occurs more often in women as in men. It most commonly affects adults between ages 40 and 60 but can occur at other ages, including childhood.[5]
ME/CFS has a large social and economic impact. About a quarter of individuals are severely affected and unable to leave their bed or home.[6]: 3 The disease can also be socially isolating.[7] People with ME/CFS often face stigma in healthcare settings and care is complicated by controversies around the cause and potential treaments of the illness.[8] Clinicians may be unfamiliar with ME/CFS, as it is often not covered in medical school.[4] Historical research funding for ME/CFS has been far below that of diseases with comparable impact.[9]
^ ab"Treatment of ME/CFS". Centers for Disease Control and Prevention. 28 January 2021. Archived from the original on 20 March 2021. Retrieved 9 October 2023. This article incorporates text from this source, which is in the public domain.
^ abInstitut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG) (17 April 2023). Myalgische Enzephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Aktueller Kenntnisstand [Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): current state of knowledge] (PDF) (in German). Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen. ISSN1864-2500. Archived(PDF) from the original on 2 November 2023. Retrieved 8 November 2023.
^ abO'Leary D (December 2020). "A concerning display of medical indifference: reply to 'Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox'". Medical Humanities. 46 (4): e4. doi:10.1136/medhum-2019-011743. PMID32601171. S2CID220253462.
" 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)
“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)
Your addition to myalgic encephalomyelitis/chronic fatigue syndrome has been removed or altered, as it appears to closely paraphrase a copyrighted source. Limited close paraphrasing or quotation is appropriate within reason, so long as the material is clearly attributed in the text. However, longer paraphrases which are not attributed to their source may constitute copyright violation or plagiarism, and are not acceptable on Wikipedia. Such content cannot be hosted here for legal reasons; please do not post it on any page, even if you plan to fix it later. You may use external websites or printed material as a source of information, but not as a source of sentences. This part is crucial: say it in your own words.
If you own the copyright to the text, and you want to allow Wikipedia to use it — which means allowing other people to modify it — then you must verify that externally by one of the processes explained at Wikipedia:Donating copyrighted materials. If you are not the owner of the copyright but have permission from that owner, see Wikipedia:Requesting copyright permission. Wikipedia takes copyright violations very seriously and persistent violators will be blocked from editing. This is the second time I've removed closely paraphrased text from you. One tip I find useful is that you should very rarely have more than 3 words in a row the same as the source. If you copy over more words, it's likely not allowed.—Femke 🐦 (talk) 19:13, 24 April 2024 (UTC)
Feel free to edit. I thought it best to include all of the factors affecting prognosis, as there would otherwise likely be pushback, but maybe it would be better to quote it? Anyway, feel free to update it yourself as you see fit. Currently the article has no mention of actual recovery/improvement rates, or of the factors affecting prognosis, so it needs updated to address that. sciencewatcher (talk) 20:27, 24 April 2024 (UTC)
User:sciencewatcher: please don't put user warnings here. A discussion was opened on the prognosis already a few days ago below. (feel free to remove this message after moving the message back). —Femke 🐦 (talk) 07:00, 26 April 2024 (UTC)
Oh, I didn't notice that new discussion. Generally it's better if you revert something like this to discuss on the article talk page rather than a user talk page, which is why I moved the discussion here, as it pertains to the article. sciencewatcher (talk) 16:54, 26 April 2024 (UTC)
As this was a conduct issue (copyright violations), it was more appropriate on your user page. In general, quoting should only be done when you cannot paraphrase properly (WP:Wikivoice). In this case, there were plenty of opportunities to paraphrase, for instance by integrating it in the existing text. —Femke 🐦 (talk) 07:45, 27 April 2024 (UTC)
Recent prognosis BMJ edit
There was a recent prognosis edit that goes quite against the idea of the article, for example saying that a physical attribution to the illness worsens prognosis. Given the illness is physical, that sentence seems to imply the illness isn’t.
I’m not able to access BMJ to check the claims but I thought the prognosis section was good as it was, given the history of contradictory findings. Additionally, saying most patients improve with treatment is interesting given there are no approved treatments, only symptom management. I assume this sentence refers to older GET and CBT studies, which the 2021 NICE guidelines rated as poor or very poor quality. YannLK (talk) 18:23, 24 April 2024 (UTC)
A discussion can still be useful, even when something is deleted, to assess whether there is consensus for inclusion. I removed the sentences as there was close paraphrasing from the source.
I'm a bit surprised with the inclusion of a 1997 study in the BMJ source, which doesn't feel like it's in line with the rest of the source. The 1997 papers does not quite make clear if any of the CFS studies assess "faulty attribution" of CFS as a physical illness, as it makes a statement about chronic fatigue and CFS together. And of course, what was called CFS then included people that do not have ME/CFS according to modern definitions. —Femke 🐦 (talk) 19:23, 24 April 2024 (UTC)
Well, as per wikipedia policies, we shouldn't be second-guessing the secondary source (which is the one you used). It's certainly an important point, as many studies have shown the same finding, and patients report the same. It's not saying that there aren't physical symptoms (as we know there are). It's saying that the belief that the illness is caused by some kind of physical damage in the body is harmful to recovery. sciencewatcher (talk) 17:01, 26 April 2024 (UTC)
I mean if it is prominent in and in most recent high quality reviews, we should include it as per wikipedia policy.
However in my personal opinion it isn’t measuring what you think it is. People who have more severe ME/CFS, people who have had ME/CFS for longer, and people who have more physical symptoms will all probably be more likely to say the cause of the disease is physical. All these above factors are much more likely to affect prognosis then a psychological belief (given the illness is in itself physical). YannLK (talk) 17:47, 26 April 2024 (UTC)
The key policy we look at when deciding whether to include a claim is whether it's WP:DUE. That is, whether it gets mentioned in multiple high-quality reliable sources. Especially for WP:Exceptional claims like this. If a source claims that people who correctly identify their cause of illness have less chance of recovery, that is an exceptional claim.
In this case, the BMJ source is the only one of our top sources mentioning it (so I'd argue, WP:UNDUE). The underlying source is weak. It's an analysis of between 0 and 5 primary sources on CFS (review doesn't say), as defined more closely to idiopathic chronic fatigue than ME/CFS. While sciencewatcher is correct we should be careful to avoid WP:original research (OR), a critical reading of a source does not have to constitute OR.
I also note that sciencewatcher themselves has engaged critically with the literature, for which I gave thanks, when they removed "severe" in front of psychological stress. Iirc correctly, IQWiG said severe stress could potentially trigger ME/CFS, whereas the underlying source said that normal stress, often during an infection, was a (co-)trigger. —Femke 🐦 (talk) 18:41, 26 April 2024 (UTC)
The claim in question has been replicated by multiple studies and is included in many reviews, and supports the experience of patients themselves (who had very physical symptoms), and it's very important as it is a factor that determines recovery prognosis. Again, it's just a confusion over what this means. It doesn't mean the illness isn't physical, it just means that the belief that your body is permanently damaged is detrimental to recovery. Perhaps it would be good to clarify that in the article, if there are good sources explaining it, as it seems to be a common point of confusion. — Preceding unsigned comment added by Sciencewatcher (talk • contribs) 19:29, 26 April 2024 (UTC)
See for example Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review (https://www.mdpi.com/2075-4418/9/3/91) which has 206 citations. "The attribution of CFS to a physical cause and poor control over the symptoms have been associated with worse outcomes in those patients". sciencewatcher (talk) 20:37, 26 April 2024 (UTC)
The old sources do not describe it like that ("permanently damaged"). That would be a less exceptional claim. It makes common sense that one needs to experiment with the limits of PEM over time, and that some can get in a virtuous cycle of getting more fit in periods PEM is not as bad.
The 2019 review does not meet the criteria for a high-quality reliable source imo. It's only just within WP:MEDDATE. More concerning, it's published in a special issue of an MDPI journal. Normally, the better MDPI journals can be just acceptable, but peer review is much more hit-and-miss in special issues [45] .
The 2019 review relies again on a 2005 review that assesses what they understood as CFS in 2005. I.e., the cardinal symptom of PEM wasn't mandatory. —Femke 🐦 (talk) 07:39, 27 April 2024 (UTC)
I've been in contact with the BMJ editor about the apparent contradiction in the source: they indicate it was a weird statement and that their next update in ~July will no longer say this. —Femke 🐦 (talk) 16:26, 3 May 2024 (UTC)
Diagnostic criteria, image
New proposed image: ME/CFS symptoms according five common criteria sets.Old lead image: A comparison of a large set of diagnostic criteria for ME/CFS.
I had hope that by moving the old lead image into the body, the text would become sufficiently large to read. It's not. I've made a new one based on the IQWiG report (page 13). I'm showing both at upright=1.35 here.
Three questions:
I think this type of information cannot be copyrighted, but would like a second opinion here. @The Quirky Kitty; can you confirm this is okay? There is maybe a bit of "creativity" here, in the sense that IQWiG had to do some symptom mapping (like myalgia --> pain, PENE -> PEM).
Is the new graph better than the old?
Any changes desired? I've made it in PowerPoint, but Powerpoints design features seem sufficiently rich for requests.
Asked at the CCI Discord channel, where I was told that the row order is somewhat creative, so will rejig the graph a bit. Have requested deletion for the file on Commons. Bit of a linguistic question: in German (and Dutch), the same word is used for ache and pain (Schmerz / pijn). Do people consider a headache a type of pain? I've translated Schmerz as pain, but maybe a better translation would be pain or headache (the other two pain categories are joint and muscle pain). —Femke 🐦 (talk) 20:29, 3 May 2024 (UTC)
I hesitate to speak for the anglophone world, but I think most would answer your question "yes, headache is a type of pain". At the same time, I think most people would read "Pain" (the standalone word) to refer to bodily pain. Because of that, "Pain or headache" would not look odd (and might be more clear). Ajpolino (talk) 21:01, 3 May 2024 (UTC)
There were plenty of CPD/CME courses/modules/resources which were for HCPs as a whole, rather than just doctors, but they didn't go into the current lack of knowledge and education.
Either/both of those work for you?
While the current reference does discuss the lack of education in 'medical schools' and the lack of knowledge of 'clinicians' in the same context, one of those is being misused. Either they were referring to all clinicians, and so should not have referred to medical schools specifically, or they just meant doctors. Either way, as we're not directly quoting them, do we need to repeat their mistake? Ilike2burnthing (talk) 08:33, 5 May 2024 (UTC)
I think the word clinician has multiple meanings. There is the wide meaning, which includes nurses (as Wikipedia defines it for instance), and a more strict meaning, which is about doctors (Oxford dictionary). I'm not a native speaker or expert here, so I'm not sure which is more common. The research the Davis et al study cites is specifically about US medical schools.
You're probably right there is a gap in the education of other medical professions too, but I'm not sure any research is done to verify that.
Of the two sources you give, the paper is a Frontiers paper, which I typically want to avoid for quality purposes. The other one may be more appropriate. We could add it to the body of the article? I think specifying both undergraduate and postgrad education is a bit too much detail, but adding that it's there is a gap not only for doctors but health care professionals in general may be good. —Femke 🐦 (talk) 09:07, 5 May 2024 (UTC)
Yes, my use of the word 'mistake' above is not correct, there are different meanings for the same word. I personally think that using 'clinician' to purely mean 'doctor' is too narrow and gatekeeping, but that doesn't negate that not everyone will use it the same way.
In this case though, given the Wiki definition of clinicians, that we're not directly quoting the study, and that they are specifically referring to medical schools, I feel this should be changed to 'doctors', at the very least to avoid confusion.
I could link to the results of a survey of primary care HCPs and their knowledge of ME, by the charity Hope 4 ME & Fibro Northern Ireland, but it's small in scale and definitely not peer-reviewed.
While there are some similar large-scale studies/surveys found on the Controversies related to ME/CFS page, these again lean heavily into GPs and other doctors.
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)
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.
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 - 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)
Just one gentle follow-up: If that's what you want to get across I might say something like "ME/CFS can run in families, though the genes that contribute to ME/CFS risk are not known." Your call of course. Ajpolino (talk) 21:10, 20 April 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)
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?
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).
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?
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).
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.
Given that PEM is the cardinal symptoms, I would like to keep it first. Thanks to your comments, the symptoms cover 8 paragraphs, which is still a bit too much for merging the subsections all together. I can't think of a good grouping, given that the diagnostic criteria differ on core and supportive syptoms. —Femke 🐦 (talk) 12:38, 5 May 2024 (UTC)
Signs & symptoms - "crashes" or flare-ups should both be in quotation marks?
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."
I think there is added value to emphasizing energy, as this may not be an immediate association with social or emotional activities. —Femke 🐦 (talk) 12:38, 5 May 2024 (UTC)
Signs & symptoms - Examples are... a shower I don't think the examples are helpful.
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.
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?
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.
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.
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"?
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.
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?
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.
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"?
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?
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.
Split up: which means I've retained some redundancy, but it's more spread out as not all readers read the entire article. —Femke 🐦 (talk) 13:05, 5 May 2024 (UTC)
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)
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.
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.
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)
It's more muddled than I thought. In an ideal world, sources describe that research criteria are supposed to be more strict. But other sources explain that in ME/CFS, the opposite is true. Have added a paragraph that avoids talking about this.
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.
I've added a paragraph with the trade-offs of these criteria. I can't find sources explicitly about where which criteria are used most. Historically, Fukuda was the most popular. Sources still say it is, but citing primary sources that predate the uptake of IOM and predate the creation of NICE's criteria. Given that most HQRS are critical of Fukuda, and primary sources I read now often use IOM + CCC, I'm reluctant to make that claim here. Does it work like this? —Femke 🐦 (talk) 10:39, 5 May 2024 (UTC)
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.
Management#Pacing - Thus, the principle behind... exacerbation of symptoms. This summary was unnecessary (no doubt because the prior material was written so clearly!)
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?
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?
I've removed the older statement (which was not really from 2015, it was a 2015 report citing a 2006 report citing 1998/1999 studies). Since the % undiagnosed is also from that period, I don't think it's reliable anymore despite still being cited. According to the 2021-2022 survey 1.3% said the'd been diagnosed with CFS or ME and still had it, which is lower than epidemiological estimates of prevalence. Which either implies overdiagnosis, wrong estimates of prevalance, or early COVID effects... —Femke 🐦 (talk) 19:40, 3 May 2024 (UTC)
Society & culture#Controversy - One viral study caused mildly confusing since the adjective "viral" has two meanings now in the internet age.
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)
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.
Removed that entire paragraph. I could cite some to [46] this paper, but the paper itself was more interesting, talking about the nature of patient advocacy. —Femke 🐦 (talk) 19:44, 2 May 2024 (UTC)
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.
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.
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.
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.
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.
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)
It's one of those papers which says "we argue that". So, not quite as strong and direct as the existing sources. In a week's time, the new NIH report will be out, which may contain a statement in this vein. —Femke 🐦 (talk) 16:52, 3 May 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.
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.
I've moved the cite to only cover one sentence. Source is cited decently, and Scopus says it's a top 20% source for general medicine.
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?
It was legit, but removed / replaced anyway, as I want to keep some of the other MPDI/Frontiers sources, and hadn't realised how many of them we had included. —Femke 🐦 (talk) 18:57, 20 April 2024 (UTC)
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.
That's embarrasing, I hadn't seen they were independent researchers. I've replaced with two other sources. I'm not sure to what extend MEDRS sourcing is needed here and if a commentary counts as MEDRS. As in: the fact they engaged in odd outcome switching is not a medical claim, but the statistical reanalysis might be. —Femke 🐦 (talk) 16:56, 19 April 2024 (UTC)
Removed both. Tate looked quite iffy. Will see if I need to pad the section in a few weeks when the big NIH research priorities report comes out. —Femke 🐦 (talk) 11:57, 20 April 2024 (UTC)
Diagnosis of ME/CFS (CDC, ref 55) is updated since the reference was written. Check info and update.
Bansal 2016 is nearly 8 years old and the info it cites is fully covered by the CDC source. Suggest removal?
Done
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.
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?
Is Radford and Chowdhury 2016 (ref 103) reliable? I'm unfamiliar with the organizations, and as you point out, they misspelled their own title.
I've double cited it with a scientific study. Slightly less detail in that study, but the fact they cite the report does give it credence. —Femke 🐦 (talk) 19:44, 2 May 2024 (UTC)
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)
"Core" symptoms was in the lead to differentiate mandatory primary symptoms for diagnosis using the IOM and NICE definitions. The mandatory symptoms are not fully delineated until the Diagnostic criteria section. Should the mandatory symptoms be more clearly characterized as such in the lead or as it presently is?
Easy was replaced by "routine" concerning tasks in the lead. I believe routine is more effective because it better captures what a person used to be able to do before the illness. Easy is somewhat subjective. Easy kind of works, but if you think about a person's daily strenuous exercise program, or for example, math modeling of mechanisms in an engineering profession, it doesn't quite fit. Those are real world examples. Ward20 (talk) 00:25, 14 May 2024 (UTC)
I offered these edits as a suggestion. I deleted "core" because readers who only read the Lead (and there are many of them) will not have a clue as to what it means. I'm not fussed about "routine" but for the Lead, I prefer "easy". The Lead should be a stand-alone summary of the article.Graham Beards (talk) 06:24, 14 May 2024 (UTC)
I believe it would be difficult to present in the infobox. Rather than the wording:
Other symptoms are a greatly reduced ability to do tasks that were previously easy, severe fatigue that does not improve much with rest, and sleep disturbances.
Propose:
Other indications of the illness are a greatly reduced ability to do tasks that were previously accomplished without difficulty, severe fatigue that does not improve much with rest, and sleep disturbances.
You're right that it's not easy to present this in the infobox.
The proposed wording here however is really poor for readability. I'm always passionate about making articles accessible for a non-academic audience, but even more so here, as pwME may have too much brain fog to read sentences with a similar difficulty as a scientific paper. —Femke 🐦 (talk) 06:04, 19 May 2024 (UTC)
OK, I see that non-academic audience readability is important, but if it goes too simplistic it might lose some relevance to the definition. However, presently the primary symptoms are prefaced with "Other symptoms..." and the optional or less common symptoms are prefaced with "Further common symptoms..." Seems like the primary symptoms should be emphasized. Maybe "Required symptoms for diagnosis..." rather than "Other symptoms..."? Or do you think the issue is that presenting the symptoms for diagnosis is too complex in the paragraph? Ward20 (talk) 11:33, 19 May 2024 (UTC)
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness. People are much less able to perform tasks they could do prior to the illness, and they have severe fatigue that does not improve much with rest. They have sleep disturbances and problems with memory or concentration. Other common symptoms include pain, and dizziness or nausea when sitting or standing.[1] People with ME/CFS also experience delayed worsening of the illness hours or days after minor physical or mental activity, which is the distinctive symptom of the illness.[2]
^Cite error: The named reference IQWiG-2023 was invoked but never defined (see the help page).
Pre-FAC comments from Graham Beards
I have made a few edits, which I hope are improvements. I have a short list of comments:
The long blue links are distracting. Is it possible to limit them to a few words or less?
There's a paragraph on the cause(s) under classification, which seems out of place.
The link to Diagnostic criteria under diagnosis is not needed (and we never use "see below").
I am not sure what is meant by "energy production".
There are 58 occurrences of "people with" which gets a little distracting.
Having said that, I saw at least one use of "patients", which we avoid.
Anti nuclear antibodies are used to diagnose conditions other than lupus. The current wording gives the wrong impression. Do we need to single out lupus?
agreed, although some may be difficult to shorten, e.g. `sleeping during the day and being awake at night` linking to 'sleep inversion'
if you're referring to the paragraph beginning 'The cause of the illness', it is about the classification being based on symptoms rather than the cause
yea, remove it
'produce energy' and 'energy production' are used in the two references, may give an idea of how to rephrase
agreed, but other than occasionally switching it for something like 'those with', I don't know how else you'd phrase it
misuse of the word 'patient(s)' appears multiple times under 'society and culture'
I don't have access, but I'm assuming the reference only mentions lupus. Can anyone confirm? Also, the archive link for that reference is a login page, so that would need updated.
while not a fan myself, it's taken from the 'spoon theory' page. Perhaps @Femke would be able to design a graphic, like for the symptoms?
I think it's all good. Commenting and seeking consensus has been working well here. I agree with the above. I have been dubious about the spoons image too. I suggest an image of a heart monitor there instead because it mentions that in the section. Ward20 (talk) 14:28, 13 May 2024 (UTC)
A bit of an explanation for Ilike2burnthing: we're preparing the article for a featured article candidacy (to get a star at the top right of a page like Earth). I've asked a couple of medical editors to comment, given that I don't have a medical background and they'll be able to catch mistakes I can't catch myself easily (and because they're better at prose too). That said, always open to more suggestions! —Femke 🐦 (talk) 19:20, 13 May 2024 (UTC)
Thanks Graham, this is incredibly useful !!
long blue links: I've managed to pair down roughly half of these links hiding jargon. Need to recalibrate now that the link colours have become more jarring in V22, and avoid long links. Also did another round of duplicate link removal. There is one that I'm not quite certain on:
I don't want to say post-exertional malaise in the lead, as I dislike such jargon. In the proposed first paragraph above, I've made this even worse.
Given that the classification is intricately linked to putative cause, it is difficult to seperate, but open to suggestions.
Is energy metabolism clearer? The Annesley paper does describes it as energy production.
Have reduced it to 40 and made sure it wasn't repeated within the same paragraph and as the start of two subsequent paragraphs.
I've removed more instances of patient. The remaining instances are specifically about individuals in their role as patients (i.e. interaction with a health care professional). Hope that's okay?
PEM is linked as the text worsening of the illness in the opening paragraph of the page. It is also linked as post-exertional malaise in the opening paragraph of the Signs and symptoms section (where the initialism PEM is not used), and then again as post-exertional malaise in the first paragraph of the Post-exertional malaise sub-section (where the initialism PEM is used).
There are also 3 later uses of the term in full, rather than just PEM, under the Management and Society and culture sections.
Can these be reduced as appropriate? I'm not familiar enough with wiki standards to know whether links get repeated if the text is different, or if full terms and their initialisms are repeated in each section, so I'll leave that to you. Ilike2burnthing (talk) 17:57, 19 May 2024 (UTC)
The linking rule is once in the lead, and max once per section at first mention. I'm aware I've slightly overlinked, but I dislike not linking a concept in its actual subheading.
I've replaced the post-exertional malaise with PEM in Management and Society. I've added another link to PEM in the management section, as it's difficult jargon and key to understanding management. —Femke 🐦 (talk) 19:17, 19 May 2024 (UTC)
Hello @Ilike2burnthing. Thanks for trying to improve this article :).
I noticed you made some changes to clarify text on fatigue not being caused by overexertion. I think the difficulty here is that sources are not very explicity that this overexertion is defined as overexertion for healthy people. The fatigue occurs after normal exertion, not something unusually streneous. I hope that adding the word "unusual" from the IOM definition works to make this clear, but if not, I'm open to other wording as long as it's supported by a good source. —Femke 🐦 (talk) 07:03, 12 May 2024 (UTC)
Regarding what 'excessive' or 'unusually difficult' mean, whether it's in reference to a healthy person or someone with M.E., I don't think it really matters here. If it's excessive for the person with M.E. as they are now, then it will make their symptoms worse. If it's excessive for a healthy person, then it will definitely make their symptoms worse.
If it helps though, I've generally seen any mention of symptoms be put in the context of, or compared to, the person with M.E. at their 'pre-illness levels':
- "significantly reduced from pre-illness levels" - NICE2021 pg11
- "Greatly lowered ability to do activities that were usual before the illness." - CDCsym2021
However, I don't think that's where the confusion here is coming from, rather that it can be read to mean overexertion does not cause fatigue for people with M.E.. The current phrasing could potentially be restructured similarly to the CDC's to reduce that confusion:
-----
People with ME/CFS experience debilitating fatigue, which is:
- made worse by activity
- not caused by unusual cognitive, physical, social, or emotional overexertion
The reason I had added 'newly', and clarified 'rather exacerbated by it', in my contribution, was to make it clear that there is always a baseline of fatigue, and that these types of exertion can worsen symptoms.
This may be clearer:
People with ME/CFS experience constant debilitating fatigue, which is not eased much by rest or sleep. While this is not caused by cognitive, physical, social, or emotional overexertion, it is worsened by it.[1][2]: 12 Ilike2burnthing (talk) 08:41, 12 May 2024 (UTC)
People with ME/CFS experience persistent debilitating fatigue, which is made worse by normal activity, and is not from excessive strenuous exertion a healthy person would experience.[1][2]: 12 Ward20 (talk) 09:46, 12 May 2024 (UTC)
I think we're getting close. For diagnosis under many criteria (including IOM), fatigue needs to be present at least half of the time and be at least of moderate intensity. So for people with mild ME/CFS, fatigue is not necessarily constant. I think the text is not making clear that everyday activities can cause fatigue in ME/CFS, rather than only overexertion.
The problem with Ward's text is that the sources do not make explicit that it's a comparison to healthy people. Do we have other sources that make this explicit? We can also move closer to IOM and say "is not the result of ongoing excessive exertion"
Proposed text: People with ME/CFS experience debilitating fatigue. While it is made worse by activity, it is not the result of overexertion. (same sources). —Femke 🐦 (talk) 10:49, 12 May 2024 (UTC)
Sleep/rest not being restorative is an important part of the definition, so I think that needs added back in. I also think it needs to be clear that stressors can be mental/social/emotional, not just physical; while that's not excluded by the use of the word 'activity', many people will assume it just means physical.
People with ME/CFS experience debilitating fatigue which, depending on severity, can be constant. It is not relieved by sleep or rest. While it is made worse by physical, mental, emotional, and social activity, it is not the result of overexertion.Ilike2burnthing (talk) 16:23, 12 May 2024 (UTC)
People with ME/CFS experience persistent debilitating fatigue, which is made worse by normal activity and is not a result from ongoing overexertion.[50][2]: 12 One could argue a comparison to a healthy state is reasonable due to the pre-illness stipulation from the cite, but I understand wanting it to be completely explicit. By citing the CDC page that uses the IOM definition, the wording "ongoing overexertion" is well supported and descriptive since patients cannot tolerate "ongoing overexertion". "Persistent" is a good adjective for a > 3-6 month long fatigue symptom. Ward20 (talk) 00:15, 13 May 2024 (UTC)
People with ME/CFS experience persistent debilitating fatigue, which is made worse by normal physical, mental, emotional, and social activity, and is not a result of ongoing overexertion. It is not relieved by sleep or rest. (+ sources)
"The fatigue of ME/CFS is so extreme that people are unable to participate in routine activities that were possible before becoming ill, such as work, school, social life and/or personal life. The debilitating fatigue of ME/CFS is worsened by activity and is:
not caused by excessive cognitive, physical, emotional or social exertion,
not significantly relieved by rest,
would not have been present before the illness.
[...] The worsening of symptoms can follow minimal cognitive, physical, emotional or social activity or activity that would previously have been tolerated."
^ abcCite error: The named reference CDCsym2021 was invoked but never defined (see the help page).
^ abcdCite error: The named reference NICE2021 was invoked but never defined (see the help page).
A couple of remarks regarding content
I wrote down some comments regarding the current content of the page. I am new to Wikipedia editing but know the ME/CFS literature quite well. I thought it would be better to post my remarks here rather than trying to change the text directly. Most comments are about minor issues: because of the excellent work of the editors the page is already rather good.
‘People with ME/CFS experience delayed worsening of the illness’
I would mention some symptoms first and then explain PEM afterwards. For example: People with ME/CFS experience severe fatigue, unrefreshing sleep, and problems with memory or concentration. A delayed worsening of the illness after minor physical or mental activity, is considered the hallmark symptom of the illness. Other common symptoms include …
‘severe fatigue that does not improve much with rest’
Perhaps write: ‘severe fatigue that is not relieved with rest.’
Done something similar (relieved is a slightly more difficult word).
‘In some people, physical trauma or psychological stress may also act as a trigger. [10]’
I doubt there is reliable evidence for these triggers while this sentence gives the impression that there is. For infectious triggers we have good longitudinal studies showing increased incidence following, for example, EBV-infection. For stress or physical trauma, the evidence is merely anecdotal as far as I’m aware. Could perhaps be rephrased to: “some people with ME/CFS report that…” to better reflect the underlying weak evidence of the claim.
I've removed this, as you're not the first one to object. The new CDC page now puts much more emphasis on infection as well. —Femke 🐦 (talk) 18:22, 18 May 2024 (UTC)
‘In the ICD-10, the code for ME/CFS listed only (benign) ME, and there was no mention of CFS; clinicians often used diagnostic codes for fatigue and malaise, or fatigue syndrome, for people with CFS’
In ICD-10 volume 3, CFS was included in the Alphabetical Index, where it is coded to the G93.3 Postviral fatigue syndrome concept title term. I think that is why, if you search the ICD-10 browser and type in ‘chronic fatigue syndrome’ you are directed to G93.3.
https://dxrevisionwatch.com/icd-11-me-cfs/
In the ICD-10-CM (US clinical modification) CFS was temporarily listed under code R53.82 (perhaps this is what the Lim et al. 2020 review meant) but this has now been changed. It is now listed under G93.32 https://www.meaction.net/2022/10/06/new-mecfs-codes-in-us-icd-10-cm/
Removed the sentence. I know the ICD-10 is still used in many countries, but given the murkiness here, might be best to remove text rather than bore readers with the intricacies. —Femke 🐦 (talk) 09:55, 25 May 2024 (UTC)
‘All types of activities that require energy can trigger PEM’
I think the text on PEM focuses too much on activity as a trigger, rather than exertion and exceeding one’s energy budget. For example, being in a noisy, bright space with too many stimuli can also cause PEM even if the patient is lying still and doing no activity (e.g. a hospital visit). On the other hand, some activities may not cause PEM if people manage to stay within their 'energy envelope’. The current text might be misinterpreted as if people with ME/CFS experience PEM after each minor activity, which certainly isn’t the case. It mainly tends to happen if you exceed a certain energy expenditure, while activities below that threshold may not cause PEM. The whole point of pacing, after all, is trying to stay as active as possible and avoiding PEM by staying just beneath that threshold.
I've added the example of the stimulating environment. In the main descriptions of PEM I'm relying on (NICE, BMJ, IQWiG, CDC), the energy envelope aspect isn't mentioned. Happy to add it if you know of a good source though. —Femke 🐦 (talk) 19:17, 23 May 2024 (UTC)
‘The decline often presents 12 to 48 hours after the activity’
Not clear what decline refers to. Perhaps change to: ‘The onset of PEM is often delayed by…’
Sleep problems
I think ‘unrefreshing sleep’ - waking up unrefreshed even after a good night sleep - is the most commonly used term and symptom in this area so perhaps move that up higher. I think that the IOM and Fukuda criteria only mention unrefreshing sleep and not sleep disturbances.
I've changed the introduction to use the words unrefreshing sleep, making clear this is the overarching problem, and that specific sleep disorders can sometimes explain it. —Femke 🐦 (talk) 13:11, 19 May 2024 (UTC)
Cognitive dysfunction
The text seems to describe results of cognitive tests. I would describe the symptoms more from the perspective of how patients experience it. For example: ‘Most people with ME/CFS have trouble concentrating, remembering things, or paying attention to details.’
‘Postural orthostatic tachycardia syndrome (POTS), an excessive increase in heart rate
after standing up, is the most common form of orthostatic intolerance in ME/CFS’
I see various issues in this statement. Postural orthostatic tachycardia is an objective measurement, a potential explanation of OI in terms of hemodynamics. But you can have POT without symptoms and some ME/CFS studies found that POT poorly explains OI or that ME/CFS patients do not have increased POT rates compared to controls. I would rephrase this to: ‘Several studies reported an increased prevalence of postural orthostatic tachycardia in ME/CFS, although others could not replicate this finding.’
Sources seem to describe it consistently as a "form" of orthostatic intolerance, so I think that's fine. I've removed the claim it's the most common form of orthostatic intolerance, thgouh. I couldn't find a secondary source which supported your suggested text. The NIH report comes closest, stating: "It was noted that most research on dysautonomia issues in ME/CFS has focused on POTS, even though the incidence of POTS in individuals with ME/CFS varies widely in studies. Other forms of orthostatic intolerances should be investigated more closely in future research." —Femke 🐦 (talk) 11:56, 25 May 2024 (UTC)
‘People may also become allergic or sensitive to foods, lights, noise, smells or chemicals.’
Perhaps change to ‘People may also develop new food intolerances and become sensitive to lights, noise, smells or chemicals.’ Sensitivity to light and noise seems like quite a characteristic feature of the illness, especially in patients with severe ME. Perhaps somewhere on the page (in the symptoms section or severity section) it could receive more attention with an explanation that some patients wear earplugs and sunglasses to help cope with these symptoms?
changed the text so that it no longer implies that people become allergic to lights etc. The aids and adaptations part of management mentions the adaptations to hypersensitivity. Femke (alt) (talk) 12:13, 23 May 2024 (UTC)
‘Moderate severity impedes activities of daily living (self-care activities, such as feeding and washing oneself)’
Problems with self-care such as feeding and washing is more typical of severe ME. Patients with moderate have to cut back on social activities and may need help with household tasks such as cooking and cleaning. They are often homebound (rarely able to leave the house). Patients with severe ME are (mostly) bedbound, so mentioning homebound in this category understates their disability. For Very Severe I would mention that patients need help with personal hygiene and eating such as requiring tube feeding. The ICC primer has some ambiguities (that conflict with statements in the ICC paper), perhaps the NICE guideline is a better source for the severity descriptions.
I've given a better ADL example for moderate (cooking). I know there are a few severity gradings out there, but I'm following the one that seems most common, which defines severe as homebound, rather than bedbound (which is very severe). This is for instance how NICE, BMJ and CDC define it.
Perhaps it would help to add another sentence to the severe and very severe categories. For example, based on the NICE descriptions: People with severe ME/CFS are homebound and can do only limited activities of daily living such as washing their face or cleaning their teeth. They need to rest in bed most of the time and are often very sensitive to light and sound. With very severe ME/CFS, people are mostly bedbound and cannot independently care for themselves. Some may need to be tube fed. --Odobert (talk) 15:54, 25 May 2024 (UTC)
I've expanded on the severe category (most of time in bed / wheel-chair dependent). Two paragraphs down I'm talking more about the type of symptoms that are associated with severe / very severe ME/CFS. —Femke 🐦 (talk) 17:57, 25 May 2024 (UTC)
Risk Factors - ‘women are more likely to develop it than men.’
The difference is quite stark compared to other risk factors mentioned. DecodeME found 83% of patients are women, prevalence studies also find more than 75% are women, so perhaps this should receive some more emphasis.
In the epidimiology section we do have the numbers. It might be that the gender discrepancy is smaller for CFS than for ME/CFS. Or community-based samples have fewer women compared to diagnosed people with the illness. The epidemiological paper says it's 1.5-2x more common in women, and CDC says up to 4x as common. —Femke 🐦 (talk) 16:36, 22 May 2024 (UTC)
‘Those with a family history of neurological or autoimmune diseases also seem to be at increased risk, as do those with pre-existing neurological, autoimmune, or multisystem diseases.’
I noticed that the Grach et al. 2023 review mentions this, but I doubt there is reliable evidence for this. The references that Grach mentions (Bakken et al. 2014 and Nacul et al. 2020) do not provide data on this. I would leave it out.
Same with the later statement: ‘based on the observation that ME/CFS sometimes occurs in outbreaks and is connected to autoimmune diseases’. The connection to autoimmune disease is far from established yet as far as I know.
‘The levels of antibodies to EBV are often higher in people with ME/CFS, indicating possible viral reactivation’
There have been some conflicting results for this. For example: ‘Patients with CFS had a quite similar EBV IgG antibody response pattern as healthy controls.’
https://pubmed.ncbi.nlm.nih.gov/28604802/
‘A consistent finding in studies is a decreased activity of natural killer cells’
Don’t think this holds up any longer, as a large multi-site study failed to replicate these findings. Many of the studies in the Eaton-Fitch review are from their own Australian research team. UK biobank also found null results.
https://pubmed.ncbi.nlm.nih.gov/37013608/
‘ME/CFS is likely not a mainly mitochondrial disorder, based on genetic evidence’
Not sure what ‘based on genetic evidence’ can refer to here as there is almost no robust genetic data for ME/CFS – perhaps best to delete it?
Removed. Based on genetic evidence seems to mean based on mitochondrial DNA evidence. As most mitochondrial genes are in the nuclear DNA, this statement seems like a stretch? The Ponting review and the NIH roadmap don't make a similar statement, and the WASF3 paper may contradict this too. —Femke 🐦 (talk) 16:36, 22 May 2024 (UTC)
- ICC Onset after infection – Mandatory
The table in the section ‘Diagnostic criteria’ says that ‘onset after infection’ is mandatory in the ICC. Don’t think this is true – could this be an error?
This was partially my error, and partially an error on the IQWiG side. I misinterpreted what they meant by "pathogen". ICC has susceptibility to infection as an optional symptom. CCC has infectious onset as an "alternative" mandatory criterion, i.e. if it's starts after infection, sleep and cognitive issues are no longer mandatory. I've corrected the Table by combining it with the table in BMJ, and have ticked the box for flu / cold symptoms on Fukuda based on the other source. How I wish sources in this space were more accurate. —Femke 🐦 (talk) 20:13, 22 May 2024 (UTC)
‘time-contingent pacing’… Individuals with stable illness may then try to carefully and flexibly increase activity and exercise using the technique. ‘
I doubt that this time-contingent pacing is used much in ME/CFS community – it seems to come from the chronic pain literature where the term pacing has different meanings. In the ME/CFS community pacing is almost always meant to be symptom-driven to contrast it with time-contingent GET. Guidelines usually have some sentences that patients can try to gradually increase their activities if their feel able to, but this is not strictly time-contingent (and is consistent with symptom-contingent pacing). I don’t understand where this statement comes as both references (Goudsmit 2012 and NICE 2021) do not propose or mention time-contingent pacing for ME/CFS patients as far as I know.
‘Most trials on pacing find positive effects’
I would delete this statement. The PACE trial found null effects for pacing compared to specialist medical care and the Norwegian trial by Pinxterhuis et al also found null results.
https://pubmed.ncbi.nlm.nih.gov/26672998/
I don't think APT from the PACE trial is that similar to pacing. For instance, people had to go back to 70% of what they thought they could do to start with, leading to unnecessary deconditioning iirc. Anyway, better to trust a review here than to rely on primary sources. —Femke 🐦 (talk) 18:22, 18 May 2024 (UTC)
Perhaps change the word 'trials' into 'studies'. The Sanal-Haves review included 17 studies but only 3 were RCTs (one of which was the PACE-trial). — Preceding unsigned comment added by Odobert (talk • contribs)
‘NICE removed their recommendation for this treatment in 2021’
It went one step further and actively warned against GET by stating: "do not offer people with ME/CFS physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS." So perhaps this could be added.
Research Funding
Lastly, two suggestions for this section.
ME/CFS was identified as a high-burden under-researched medical condition by a scoping study commission by the European Commission.
https://www.nivel.nl/sites/default/files/bestanden/1004310.pdf
Hope these comments were useful. Thanks for all the hard work that has already been put into this page! I'm happy to help improve it even further or help in finding appropriate resources and references. — Preceding unsigned comment added by Odobert (talk • contribs)
This is incredibly helpful! We're hoping to nominate this article to become featured in July and having feedback from somebody who knows the literature is amazing. Three new sources have recently dropped (the new CDC pages, the NIH roadmap and that German consensus paper), so I think they're is finally plenty of material to adress your comments above! —Femke 🐦 (talk) 18:22, 18 May 2024 (UTC)
Thank for all your hard work and due diligence @Femke! I agree with pretty much all your solutions - excellent work. For some claims (for example NK-cells) I tend to disagree with the main reviews themself so there is probably no point in discussing this further given Wikipedia's preferred approach to rely on secondary sources.
Any other way I can be of help to improve the page? I could ask others in the ME/CFS community to review the page and see if they can spot any errors or problems. On the other hand, I suspect that the content is already pretty good and the main obstacle to making it a featured article will be prose and readability for laypersons. Odobert (talk) 15:49, 25 May 2024 (UTC)
I was planning to ask one more experienced Wikipedia editor to go over the text before nominating. I'm also working with ChatGPT, asking it to identify overly difficult sentences as giving me alternative wording. About 20% of its suggestions are good :). If you spot anything that's overly jargonny, please let me know.
Move PEM to later in the paragraph, to give context of which symptoms worsen first
Make the summations more clear
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex long-term illness. People with ME/CFS experience a debilitating fatigue that does not improve much with rest, sleep disturbances and problems with memory or concentration. They can do much less than before they became ill. Further common symptoms include dizziness, nausea and pain. People with ME/CFS experience a worsening of the illness hours or days after minor physical or mental activity, which is the hallmark symptom of the illness.
I've wanted to put more emphasis on PEM by decreasing the description of orthostatic intolerance. Following NICE, I've split decrease of functioning into a separate sentence, as it's not only linked to fatigue, and to emphasize the definite onset more. Text flow is still a bit iffy, so open to more suggestions. —Femke 🐦 (talk) 11:00, 5 May 2024 (UTC)
Is there a reason why the PEM sentence is last. I feel like it removes emphasis from PEM as more “minor” and non-defining symptoms such as dizziness, sleep disturbances, nausea, pain etc. are included before. Since PEM is the hallmark symptom and the ones that helps clinicians differentiate from ME/CFS and other diseases, I would personally include it more prominently. YannLK (talk) 11:26, 5 May 2024 (UTC)
I'm trying to respond to Ajpolino's comment that it's unclear what a worsening of the illness means before the other symptoms are introduced. At least, for those unfamiliar with me/cfs. I hope that placing it as the last sentence does provide more emphasis, as people often read the first and last sentence when scanning a paragraph. —Femke 🐦 (talk) 11:35, 5 May 2024 (UTC)
That makes sense. My bad for not reading the whole context. :)
Maybe a small mention of exertional intolerance at the top could help, but it might be redundant so I’m not sure. YannLK (talk) 11:51, 5 May 2024 (UTC)
Small suggestion for third sentence. They are able to do much less than before they became ill. I believe this wording describes the disability better. Ward20 (talk) 05:39, 8 May 2024 (UTC)
I had to think about this a bit. I believe the word "debilitating" is more appropriate in the first sentence about the illness, rather than linked with fatigue. Though NICE describes fatigue that way, cognitive issues, pain, orthostatic intolerance, PEM and some of the other symptoms can be just as disabling, separately or when combined.
The other question I have is about not delineating "core" mandatory symptoms in the lead (discussed separately below also). Ward20 (talk) 01:04, 14 May 2024 (UTC)
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious long-term condition. People with ME/CFS experience a profound fatigue that does not go away with rest, sleep issues and problems with memory or concentration. They are able to do much less than before they became ill. Further common symptoms include dizziness, nausea and pain. People with ME/CFS experience a worsening of the illness hours or days after minor physical or mental activity, which forms the hallmark symptom of the illness.
I've implemented the above. I'm trying to tie in the comments from User:Odobert and User:Ward20 here, plus improve readability a bit further:
Does not go away with rest is closer to the CDC's new description ("is not relieved by rest").
Put serious in the initial description, as debilitating is too difficult a word and we describe this later with "They are able to do much less than before they became ill". Changed the adjective before fatigue into profound for the same reason.
I believe the text already implicitly makes a distinction between core and non-core symptoms. "People with ME/CFS have" implies it's true for all people. Further common symptoms implies it's a common symptom instead.
Oh, I've also put in a duration for the PEM, as I think a good description is quite key, and I managed to ce the lead to fit in more. —Femke 🐦 (talk) 13:01, 19 May 2024 (UTC)
Reviewing some newly published sourcing, I've noticed that our management section is not quite comprehensive, and I think that's because much of it can't be shoe-horned into the current structure. For instance, fibromyalgia meds and gentle massage are often tried for pain management, which can't be fitted into our current structure. The section still looks a lot like the old treatment section. I'd like to move to three subheadings:
Pacing and energy management
Symptom relief (up to one paragraph per symptom, i.e. sleep, pain, orthostatic int, gastro issues, cognitive issues, and mental health effects)
Care for people with severe ME/CFS.
This roughly corresponds to how the CDC covers it (their management page is per symptom, a separate page for caring for severe cases). The German consensus statement has two sections (pacing and symptom relief). The Mayo clinic one has 2 core section (pacing and treat symptoms). The BMJ has ongoing multidisciplenary support as first-line treatment, and pacing and symptom management as adjuncts.
The current discussion of old-school CBT and GET would be merged as a paragraph in pacing. It's a bit duplicative at the moment.
An article on a neurological illness should not be written like this, it doesn't read encyclopedic. Comparison with cancer? What, seriously? Most references are ME/CFS advocacy sites. If it's as serious as cancer and AIDS, how come "Doctors may be unfamiliar with ME/CFS, as it is often not fully covered in medical school" and " No specific lab tests are approved for diagnosis; while physical abnormalities can be found, no single finding is considered sufficient for diagnosis"? Overall, the article overexaggerates the illness. Necatorina (talk) 06:44, 29 June 2024 (UTC)
The article is based primarily on clinical guidelines from NICE, IqWiG, and the CDC, and on the Mayo clinic and the BMJ sources on the illness. I believe those are the best sources on the illness you can get.
The article doesn't say the illness is worse than cancer and AIDS it says the quality of life of people with the illness is worse than examined cancers and HIV/AIDS. The QoL of AIDS is quite good, given effective medication exists.
It may feel like the article describes a more serious illness than you may be familiar with because of how it's currently defined vs how it was defined 10 years ago. Now, to have even mild ME/CFS, you need a 50% reduction in functional capacity compared to pre-illness. —Femke 🐦 (talk) 06:59, 29 June 2024 (UTC)
Just to underline, the comparison on QOL is sourced to a peer-reviewed study. Meanwhile, it’s not the case that "Most references are ME/CFS advocacy sites." I only see one such reference in almost 100 sources. Innisfree987 (talk) 07:55, 29 June 2024 (UTC)
I've replaced the research charity with the CDC. In terms of the how tag, on the mortality from ME, the answer is usually malnutritution as far as I'm aware, but I'm struggling to cite this:
The original source describes the two in the same sentence, but does not make the link. It states: "This can lead to loss of ability to work, the need for care including artificial nutrition and, in very severe cases, even death."
The NASEM long COVID report also doesn't say what people die from. It just says over 5,000 have died without clarifying if they also had ME/CFS or what they died from.
Non-MEDRS, but for context, renal failure from ME has also been noted as a cause of death.
My preference is to remove the tag without using any of these sources. But open to adding something if we can of course. —Femke 🐦 (talk) 18:32, 4 July 2024 (UTC)
Severe chronic fatigue syndrome should be considered with "central idiopathic hypersomnia" possible comorbidity pathology
Severe chronic fatigue syndrome should be considered with "central idiopathic hypersomnia" possible comorbidity pathology (both are also "current scientific research pathology unknown and there are sleep disorders" diseases), both are prone to the existence of "drunk every night after sleep" this more significant characteristic, relatively rare characteristics. Moderate to mild chronic fatigue syndrome needs to consider a large number of "common diseases" and "rare diseases" in sleep disorders. Moonlight005 (talk) 04:29, 15 July 2024 (UTC)
A "severe chronic fatigue syndrome"/hypersomnia pathological hypothesis
This is an English version of the pathological hypothesis analysis of "severe chronic fatigue syndrome"/idiopathic hypersomnia, which may be more intuitive for English users.
Url:
https://zhuanlan.zhihu.com/p/690767363 or https://weibo.com/ttarticle/p/show?id=2309405033349046731031
The title of the article is as follows:
"Pathology of IH may be hyperlocalized carbon dioxide excess"、"An important subtype of idiopathic hypersomnia (also including idiopathic hypersomnia with unknown pathologies, narcolepsy type 2, hypersomnia depression, etc.) is likely to be the mathematical model and analysis of the pathology of hypothalamus and other parts controlling ultra-small vascular lesions (such as blockage) of the awakening nerve nuclei leading to excessive carbon dioxide in a small range".
This does not seem to be discussed in high-quality review articles, so I do not think it deserves a mention here. It is unclear if these links are to scientific articles or more to a blog-type article. For medical content, sources need to meet the criteria as described in WP:MEDRS, which in summary means they should be recent and secondary (a review). —Femke 🐦 (talk) 18:24, 15 July 2024 (UTC)
Thank you for your communication and I would like to further explain this pathological hypothesis. The current pathological hypotheses (or merely guesses rather than analyses) of severe chronic fatigue syndrome and idiopathic hypersomnia are basically based on infections (such as viruses, bacteria, etc.), but ignore the more common causes of brain disease such as cerebral vascular blockage, and have not made substantial progress in pathology to date. So here speculation and analysis (have a lot of analysis, specific see link) super local (beside cerebral awakening control nuclei) of small vascular lesions (further cause excessive carbon dioxide, excess carbon dioxide just become the body's natural 7 * 24 hours of endogenous real-time anesthetic) I think maybe is a very worth exploring a pathology.
As I said earlier:Severe chronic fatigue syndrome should be considered with "central idiopathic hypersomnia" possible comorbidity pathology (both are also "current scientific research pathology unknown and there are sleep disorders" diseases), both are prone to the existence of "drunk every night after sleep" this more significant characteristic, relatively rare characteristics. Moonlight005 (talk) 07:27, 16 July 2024 (UTC)
Severe chronic fatigue syndrome and idiopathic hypersomnia should both be rare conditions (it is now certain that idiopathic hypersomnia is a rare condition).
The progress in the study of rare disease pathology is often slow due to the lack of sufficient patient data and research funding.
The pathological hypothesis proposed here is put forward by a patient based on his own feelings and retrieval of papers. So far, it has been freely shared publicly for a year or two, but there is still no substantive feedback from scientific research institutions (such as leave a message for feedback or email replies). It can be seen that the pathological hypothesis of rare diseases is easily ignored, and it is expected that the patient community concerned about "severe chronic fatigue syndrome/idiopathic hypersomnia" will try to communicate this pathological hypothesis to scientific institutions so that they will try to reproduce it in animal experiments. Moonlight005 (talk) 07:38, 16 July 2024 (UTC)
If the scientific community hasn't taken note of the hypothesis, it's way too early to include it on Wikipedia. It needs to be covered in reviews, before it's considered sufficiently important to include. —Femke 🐦 (talk) 07:58, 16 July 2024 (UTC)
To convey the pathological hypothesis to the severe chronic fatigue syndrome/sleep "basic research related to the scientific research institutions, others (e.g. "Severe Chronic fatigue syndrome/idiopathic hypersomnia" related patient population) have any good Suggestions? Moonlight005 (talk) 10:07, 16 July 2024 (UTC)
As Femke said, this is not something we should currently include. We're an encyclopedia, so we base our writing on what's already been established and proven. There is certainly value in hypotheses that haven't been proven or widely recognized, but there are better places to discuss these novel ideas, like journals. The Quirky Kitty (talk) 08:41, 23 July 2024 (UTC)
Citations in the lead
Would it be reasonable to remove some of the citations in the lead per MOS:LEADCITE? I'm hesitant to make any major changes since I understand the contents of the lead could technically be considered complex/controversial enough to warrant citations.CursedWithTheAbilityToDoTheMath (talk) 03:01, 22 July 2024 (UTC)
From the perspective of having an easier ride at FAC I would be okay if somebody cuts the citations. However, this is one of those articles where the balance MOS:LEADCITE describes probably falls more towards not cutting citations further. This was historically and possibly still one of the most contested diseases out there. —Femke 🐦 (talk) 17:54, 23 July 2024 (UTC)
Historically in this article, almost every item in a sentence that hasn't been sourced has been challenged, removed, changed or tagged frequently. For the sake of having a more stable article it would probably be better to leave the citations. Ward20 (talk) 22:13, 23 July 2024 (UTC)
Unless there are any objections or further suggested improvements, I plan to nominate within the next 10 days. —Femke 🐦 (talk) 18:19, 19 July 2024 (UTC)
Suggestion Can we add G93.32 to the med resources navbox? (Please note, my browser is saying the security certificate for the external lookup site expired on 15 July 24.) Haven't boldly added as I gather the previous ICD-10-CM codes were removed following discussion that noted they had been retired/replaced. Given that the 5th characters are not present in WHO's international version of the classification, however, I feel it would have been better update G93.3 to G93.32 rather than remove it in favour of the G93.3 code within ICD-10. (If it weren't for the 5th character, I would be in total agreement for not duplicating G93.3)
Here's the markup if there's agreement to "restore": | ICD10CM = {{ICD10CM|G93.32}}
I get the same issue with my browser. Shall we wait until the website is functional before we include the link? Content-wise, I'm very happy to include it. —Femke 🐦 (talk) 19:34, 25 July 2024 (UTC)
Found out that CDC has an "official" lookup tool. Rather than wait for the "dead" service to renew their security certificates, I've changed the template to point to CDC's search function instead. Little pob (talk) 19:59, 25 July 2024 (UTC)
Done
This article incorporates text from this source, which is in the public domain.
Your addition to myalgic encephalomyelitis/chronic fatigue syndrome has been removed or altered, as it appears to closely paraphrase a copyrighted source. Limited close paraphrasing or quotation is appropriate within reason, so long as the material is clearly attributed in the text. However, longer paraphrases which are not attributed to their source may constitute copyright violation or plagiarism, and are not acceptable on Wikipedia. Such content cannot be hosted here for legal reasons; please do not post it on any page, even if you plan to fix it later. You may use external websites or printed material as a source of information, but not as a source of sentences. This part is crucial: say it in your own words.
Removed —Femke 🐦 (talk) 08:02, 14 April 2024 (UTC)
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