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Toward a new move request

It's been around 9 months since the last move request, which closed as no consensus. I think enough time has now passed to see if a new consensus has formed in favour of a rename. Imo, the rest of 2023 saw a further cementing of the compromise ME/CFS name in MEDRS sourcing. I think it's easiest to propose only the option of myalgic encephalomyelitis/chronic fatigue syndrome, but I'm also open to a 1a (myalgic encephalomyelitis/chronic fatigue syndrome), 1b (ME/CFS), 2 (status quo) type of move request. What do you guys think? —Femke 🐦 (talk) 17:45, 3 January 2024 (UTC)[reply]

Having 3 options is more likely to be productive. We should recognize that most people who favor a move will be okay with either ME/CFS or Myalgic encephalomyelitis/chronic fatigue syndrome, but may also debate between them. If the consensus is to move, we shouldn't get hung up on which alternative to use. This isn't a first-past-the-post election so similar alternatives shouldn't be allowed to play spoiler.
People from the Skepticism project are likely to come in, and some of them will give opinions we disagree with, but hey, the entire point of move discussions is to solicit diverse opinions.
I think it's reasonable to make another move request. It wasn't long ago, but the results were quite narrow last time: 7 to 6. Most supporters argued based on the Manual of Style and opponents argued based on the complexity of the term and lack of proven neuroinflammation. Enough new research (and media) cementing the new term in common use has come out since then that there's a chance of getting a different result.
This time, you do the honors. After my requested move failed, I decided not to start another request for a long time because I'd rather focus my efforts on making changes everyone wants over debating. I'll express my support. The Quirky Kitty (talk) 07:28, 8 January 2024 (UTC)[reply]
I'll do "the honours" either this weekend, or in three weeks, as I'm anticipating requiring some rest after next. Will do three options. —Femke 🐦 (talk) 19:43, 10 January 2024 (UTC)[reply]
Thank you! YannLK (talk) 19:15, 18 January 2024 (UTC)[reply]

Inclusion of Very Severe Patients

I really like the direction this page has taken and I feel it has really improved in the past year. One thing I want to comment on is the lack of acknowledgment of very severe cases, such as unable to speak or communicate in any way, and unable to tolerate slightest light or sound. One prominent example of a patient like this is Whitney Dafoe. I know there exists very little research on these cases and they can be so shocking some PCP’s deny their existence but they do exist and more commonly than most realise. It would be nice to have more mention of them. YannLK (talk) 19:12, 18 January 2024 (UTC)[reply]

Fully agree. After the article rename request (launching tomorrow), I plan to propose a full rewrite of signs and symptoms, which would include a description of this group of people (under a subsection "grades of severity" or something). In management, I'd like to add a section on (family) caregivers, focusing on severe and very severe cases. What are PCP? —Femke 🐦 (talk) 20:34, 18 January 2024 (UTC)[reply]
Sounds great. PCP abbreviates primary care provider. Innisfree987 (talk) 00:46, 19 January 2024 (UTC)[reply]
Strong support. There is very limited coverage of very severe ME/CFS and no mention of death from it, which is rare but occurs. We should add what can be supported by reliable sources. The Quirky Kitty (talk) 06:40, 19 January 2024 (UTC)[reply]

Requested move 19 January 2024

The following is a closed discussion of a requested move. Please do not modify it. Subsequent comments should be made in a new section on the talk page. Editors desiring to contest the closing decision should consider a move review after discussing it on the closer's talk page. No further edits should be made to this discussion.

The result of the move request was: moved. Clear consensus to move somewhere. No consensus on whether to move to Myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, with most editors appearing to have no preference on this question.

Given the extent of participation, I don't think that a relist will solve this, and so I am closing per WP:NOGOODOPTIONS, and moving this article to Myalgic encephalomyelitis/chronic fatigue syndrome as the title that is closest to the current title.

Editors who disagree with this decision should feel free to open a new move request at any time. (closed by non-admin page mover) BilledMammal (talk) 16:58, 27 January 2024 (UTC)[reply]


Chronic fatigue syndrome → ? – -->

The title guideline for medical articles states: The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources. Since the last since the last requested move, ME/CFS has seen further cementing as the common name in our top sources:

CFS seems to be used mostly still in alternative medicine and by some psychologists (see my analysis of 2023 PubMED reviews). It has fallen out of use due to concerns with neutrality (WP:NPOVNAME) as trivialising (as it often triggers the response "everybody is tired") and with being simplistic (it refers to a single unspecific symptom of ME/CFS: fatigue) —Femke 🐦 (talk) 19:55, 19 January 2024 (UTC)[reply]

The general guidelines tell us, Generally, article titles are based on what the subject is called in reliable sources. Under this criterion, ME/CFS is a much better option. The guidelines also say to consider precision, among other points, and ME/CFS is much more precise. CFS is easily conflated with chronic fatigue.
The medical guidelines say, The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name) or an historical eponym that has been superseded. This strongly favors ME/CFS. They also recommend using the ICD-10 and DSM-5 for resolving regional naming disputes, though it's broadly applicable here. The ICD-10 uses ME and post-viral fatigue syndrome (Source), while the American ICD-10-CM seems to use ME/CFS first. (Source)
And as @Femke noted, CFS is a less neutral term, as it is commonly used by people who deny the scientific consensus that ME/CFS is a serious biological condition. Further, most patients consider it trivializing.
Considering these things, let's move to 1a or 1b. I will think about whether I prefer Myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS.
I prefer ME/CFS to the acronym spelled out. ME/CFS is concise, spelled out is unwieldy. ME/CFS is distinct enough that it won't be confused with other things like MS could. As @Innisfree987 explained, it's more like HIV/AIDS. So I prefer 1b to 1a, but I strongly prefer both over the status quo. I wouldn't be disappointed at all if we went with the longer title. The Quirky Kitty (talk) 08:46, 23 January 2024 (UTC)[reply]
Support 1a or 1b. Difficult to favor one over the other but ultimately it should be what most closely reflects the highest quality sources within the bounds of medical accuracy, I would think. There are any number of loopholes where one guideline conflicts with another, but this move is long overdue. I still can't fathom that editors successfully argued against this proposal as late as a year ago, but hopefully that's in the past even though I do still wonder if we'd have seen a similar course of inaction on any other medical illness. I won't belabor the point but the CDC is arguably the most significant entity in the larger discussion and the relevant section of their website changed from "CFS" to "ME/CFS" in July 2017.
My personal preference is not relevant here but I believe @The Quirky Kitty's reply above mine offers a logical and reasonable argument for 1b. NeurastheniaMilkshake (talk) 04:44, 26 January 2024 (UTC)[reply]
I'm most surprised that we've gone from roughly 50-50 to unanimous support. The Quirky Kitty (talk) 06:48, 26 January 2024 (UTC)[reply]


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.

Proposed restructuring signs and symptoms

I propose we restructure the signs and symptoms into these subheadings:

  1. Core symptoms. Similar to what there is now, but without the sole focus on CDC (also including NICE). The key reason to change this is that the core symptoms are now written from a diagnostic perspective, rather than descriptive. This means we don't have many words to describe PEM for instance.
  2. Other commons symptoms. Mostly the same, but will see if I can rewrite a bit more into prose
  3. Severity: see my proposed text below. I've copied about half of 'physical functioning' into that section. The text in physical functioning is about overall disability, which is caused both by physical and cognitive symptoms. Most of the text I deleted was either very old or duplicative. The sentence about pain should be updated and moved to "other common symptoms".
    1. Q1: should we include the results from the SF36? It may be overly technical?
    2. Q2: where does school absence go?
    3. Q3: is the Healthcare journal about severe, very severe patients sufficiently reliable? It's the best source I could find, but it's an MPDI journal. According to Scopus is ranks the 59 percentile in the category Health Policy.. I don't think the content is very surprising or requiring a top source, but would like some input.
  4. Onset: mostly as is, but I think the sentence about viral onset percentages is outdated, as maybe half of people with ME/CFS got it after a COVID infection. The current numbers are also based on Fukuda (at least the IOM citation is). The 2024 BMJ Practice Guideline says 66 to 90% have viral onset, and that's more like what I've been reading in recent sources.
  5. I may add a comorbidities section here too later, in which I describe common comorbidities like connective tissue syndromes/fibro, but also secondary anxiety and depression. This would also be the section where I can introduce minority/historical views (anxiety&depression as symptom, or anxiety&depression as a sign of psychological co-cause).

Proposed text

Severity

ME/CFS often causes significant disability, but the degree varies greatly.[1] People with ME/CFS can be divided into four categories of severity:(NICE page 95)[2]: 10 

Roughly a quarter of people with ME/CFS fall in the mild category, half in the moderate or moderate-to-severe category.[3] The final quarter fall in the severe or very severe category.[4]: 3  Severity may change over time, with periods of worsening, improvement or remission sometimes occurring.[5] Persons who feel better for a period may overextend their activities, triggering post-exertional malaise and a worsening of symptoms.[6]

People with severe and very severe ME/CFS experience more or more severe symptoms. They may face severe weakness and may be unable to move at times. They can lose the ability to speak or swallow, or lose the ability to communicate completely due to cognitive issues. The activities that can trigger post-exertional malaise in these patients are very minor, such as sitting or going to the toilet. They can further experience hypersensitivities to touch, light, sound, and smells, and experience severe pain.[7]

Results of a study on quality of life of people with ME/CFS, showing it to be lower than in 20 other chronic conditions

People with ME/CFS have decreased quality of life according to the SF-36 questionnaire, especially in the domains of vitality, physical functioning, general health, physical role, and social functioning. However, their scores in the "role emotional" and mental health domains were not substantially lower than healthy controls.[8] A 2015 study found that people with ME/CFS had lower health-related quality of life than 20 other medical conditions, including multiple sclerosis, kidney failure, and lung cancer.[9]

If useful, I can remake the graph in a more accessible format. I can remove the illness codes and remove the mean values (so only displaying the median). That way, the font size can be made adequate. —Femke 🐦 (talk) 09:37, 21 January 2024 (UTC) —Femke 🐦 (talk) 09:37, 21 January 2024 (UTC)[reply]

Proposed text looks good to me.
(3)
Q1 I support include, it can always be reworked later, if need be.
Q2 I would say the Epidemiology section.
Q3 Could double cite this paragraph. NICE guideline NG206 supports all but the PEM sentence. Ward20 (talk) 06:02, 22 January 2024 (UTC)[reply]
I've got a new plan: it's too subjective how to distinguish "core sypmtoms" and "other common symptoms" given that diagnostic criteria vary so much. Instead, I'd like to describe 6 main symptoms in a separate heading: debilitating fatigue, PEM, sleep disturbances cognitive dysfunction, orthostatic intolerance and pain. A seventh subheading would be for "other common symptoms". Does that make sense too?
I'll suggest some other changes to ensure our structure doesn't become overwhelming (to still meet WP:FACRITERIA 2b) in the history section. A comorbidities section could be level 2, just like fibromyalgia if we want it. —Femke 🐦 (talk) 17:08, 30 January 2024 (UTC)[reply]

References

  1. ^ "Presentation and Clinical Course of ME/CFS". U.S. Centers for Disease Control and Prevention (CDC). 19 November 2019. Archived from the original on 28 July 2020. Retrieved 11 July 2020.
  2. ^ Baraniuk JN, Marshall-Gradisnik S, Eaton-Fitch N (January 2024). BMJ Best Practice: Myalgic encephalomyelitis (Chronic fatigue syndrome) (PDF). BMJ Publishing Group. Retrieved 19 January 2024.
  3. ^ Grach SL, Seltzer J, Chon TY, Ganesh R (October 2023). "Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Mayo Clinic Proceedings. 98 (10): 1544–1551. doi:10.1016/j.mayocp.2023.07.032. PMID 37793728. S2CID 263665180.
  4. ^ Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG) (17 April 2023). Myalgische Enzephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Aktueller Kenntnisstand [Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): current state of knowledge] (PDF) (in German). Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen. ISSN 1864-2500.
  5. ^ "Presentation and Clinical Course of ME/CFS". U.S. Centers for Disease Control and Prevention (CDC). 19 November 2019. Archived from the original on 28 July 2020. Retrieved 11 July 2020.
  6. ^ "Treating the Most Disruptive Symptoms First and Preventing Worsening of Symptoms". U.S. Centers for Disease Control and Prevention (CDC). 19 November 2019. Archived from the original on 7 August 2020. Retrieved 19 August 2020.
  7. ^ Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L (October 2021). "Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Healthcare (Basel, Switzerland). 9 (10). doi:10.3390/healthcare9101331. PMC 8544443. PMID 34683011.((cite journal)): CS1 maint: unflagged free DOI (link)
  8. ^ Unger ER, Lin JS, Brimmer DJ, Lapp CW, Komaroff AL, Nath A, et al. (December 2016). "CDC Grand Rounds: Chronic Fatigue Syndrome - Advancing Research and Clinical Education" (PDF). MMWR. Morbidity and Mortality Weekly Report. 65 (50–51): 1434–1438. doi:10.15585/mmwr.mm655051a4. PMID 28033311. Archived (PDF) from the original on 6 January 2017. Retrieved 5 January 2017. The highest prevalence of illness is in persons aged 40–50 years...
  9. ^ Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L (6 July 2015). Furlan R (ed.). "The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)". PLOS ONE. 10 (7): e0132421. Bibcode:2015PLoSO..1032421F. doi:10.1371/journal.pone.0132421. PMC 4492975. PMID 26147503.

Deconditioning

I've added a link to this article to the see also section at deconditioning. However, if anyone has the time and sources, it might be better to provide context for its inclusion by adding one or two sentences explaining that deconditioning can complicate ME/CFS but isn't a recognised cause. Little pob (talk) 12:35, 23 January 2024 (UTC)[reply]

Given that deconditioning plays a role in almost any severe disease, I'm uncomfortable with adding it there without context. —Femke 🐦 (talk) 17:16, 26 January 2024 (UTC)[reply]
Thanks for bringing it here for discussion. I agree with Femke and so have removed it for now. That’s a very brief article which IMO would need a great deal of expansion before the secondary effects of deconditioning on ME could be mentioned without a significant issue of undue weight. That is, if the topic were ever significant enough to the medical phenomenon of deconditioning to rate a mention—I’m not sure it is. Innisfree987 (talk) 17:59, 26 January 2024 (UTC)[reply]
I think the way to Wikipedia:Build the web to that page is to include a sourced statement, probably in the ==Management== section, that says many people with ME/CFS have to find a balance of activity that will not trigger a flareup while also preventing deconditioning and other problems associated with activity limitations. "As with any other chronic disease" might be a fair way to frame that. WhatamIdoing (talk) 21:20, 28 January 2024 (UTC)[reply]

Images in pathophysiology

Brain imaging, comparing adolescents with CFS and healthy controls showing abnormal network activity in regions of the brain.
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).[reply]

@WhatamIdoing: would you be able to advice? —Femke 🐦 (talk) 20:47, 9 February 2024 (UTC)[reply]
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)[reply]

Followup on article move/renaming

There are a number of subpages for which corresponding moves may be appropriate, as well as the category "Chronic Fatigue Syndrome" itself? If this is a prudent move forward, it looks like there would be about five or so within the category that would look to qualify, in order to maintain consistency (I'd think Treatment, History, Clinical Descriptions, Controversies, and People with CFS). Not sure about the template; but likely no reason to bother with the CFSAC page. Thoughts?

Category:Chronic fatigue syndrome

NeurastheniaMilkshake (talk) 18:10, 27 January 2024 (UTC)[reply]

Here, we can be a bit inconsistent and use ME/CFS? The page names would otherwise become quite large. For the category, the name full-out would work best for consistency? —Femke 🐦 (talk) 18:13, 27 January 2024 (UTC)[reply]
I hadn't even thought about that aspect of it. You're probably right. I just wanted to address that further steps might be suitable. Unless there's a strongly worded guideline mandating absolute consistency, using ME/CFS on the subpages certainly makes sense style-wise. In a case like this do there have to be further submissions of move requests? Individually for each page or one for the group? NeurastheniaMilkshake (talk) 18:24, 27 January 2024 (UTC)[reply]
We can do this boldly depending on input here, or list all of the articles in a single move request.
The title policy puts quite strong emphasis on consistency, so this would be an WP:Ignore all rules invocation, based on usability. The title of this article is already a bit unwieldy, which would only get worse with the subtopics. —Femke 🐦 (talk) 18:37, 27 January 2024 (UTC)[reply]
Yes, those article titles would be far too long without abbreviating to ME/CFS. The Quirky Kitty (talk) 20:12, 27 January 2024 (UTC)[reply]
I say go for it. This is unlikely to generate controversy. Ajpolino (talk) 20:13, 27 January 2024 (UTC)[reply]
In that case, I went ahead and moved the pages with "chronic fatigue syndrome" in the title. The Quirky Kitty (talk) 08:46, 28 January 2024 (UTC)[reply]
I edited "Template:Chronic fatigue syndrome" to agree with the new term, but "Category:Myalgic encephalomyelitis/chronic fatigue syndrome" doesn't work correctly and I don't know how to fix that. Ward20 (talk) 03:14, 29 January 2024 (UTC)[reply]
I'm listing it at Wikipedia:Categories for discussion/Speedy, which is a process I'd never heard of before. Should be moved in 2 days if there are no objections. —Femke 🐦 (talk) 20:14, 5 February 2024 (UTC)[reply]

Spacing on title

Alalch E., could you please pause all the moves and edits you’re making to insert spaces in this page title and the many pages that link to it? It took more than a year to get consensus on the move and you unilaterally changed it to an option that was not on the table and does not actually reflect the literature. I would appreciate it if you sought consensus first. Innisfree987 (talk) 19:48, 28 January 2024 (UTC)[reply]

Mayo, CDC, NIH, NICE for just a few examples that do not use spaces the way you have inserted them. Innisfree987 (talk) 19:52, 28 January 2024 (UTC)[reply]
Additionally the section of the MOS you cited says, ”A spaced slash may be used”, rather than should or must be used. Innisfree987 (talk) 19:55, 28 January 2024 (UTC)[reply]
This is the same option, it isn't different in terms of naming, and the difference is a minor orthogrpahical issue. For some reason, these institutions have found it appropriate not to use the spaced slash. This doesn't obligate us to replicate their suboptimal use of punctuation. They are doctors, healthcare professionals, and administrators, and we are encyclopedia writers. We understand better than them how best to use the slash to the maximal benefit of our readers. I'm done with all of the edits of this type, and this is now being discussed at Wikipedia talk:Manual of Style#Spaced slashes. You may revert my move, but please, perhaps, give it several days, to see how that discussion develops. Sincerely. —Alalch E. 19:58, 28 January 2024 (UTC)[reply]
@Alalch E., could you please revert all your moves until there is consensus? I had just happened on that discussion and am very disheartened you saw fit to impose your version before it was resolved. Innisfree987 (talk) 20:00, 28 January 2024 (UTC)[reply]
Don't be disheartened, I get what you're saying. There was only one WP:MOVE, that is, of this article, which I will self-revert (edit: see Special:Diff/1200116569), which is the same as if you had done it. For that issue, I might start an RM, depending on how the above linked discussion progresses. All of my other edits relating to this today, were not moves, but were changes of article wikitext, many of which fixed multiple issues in the same edit. If there is sufficient clarity over the course of several days that the unspaced slash version is preferred, I will revise those edits, meaning incrementally improve upon them, to bring those articles to the state more desired by the community. Many of them were removing unnecessary piping, for example, and I will not revert those edits entirely. But, at any time, you can go ahead, and make yourself those changes which I will have made at a certain point in the future. I will make them myself, I promise, under the above condition. But I don't agree that these would be good changes, and stand by the spaced slash version, as significantly clearer to the reader. —Alalch E. 20:08, 28 January 2024 (UTC)[reply]
There are thousands of research articles or major media articles using the ME/CFS terminology now, but I've never seen any use spaces between the /. The Wikipedia article should use what is generally accepted practice and not reinvent the wheel. Ward20 (talk) 18:09, 30 January 2024 (UTC)[reply]
@Innisfree987: I went over my Jan. 28 edits and did the thing, just to let you know.—Alalch E. 11:35, 4 February 2024 (UTC)[reply]

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)[reply]

Added some detail changes. May be too technical for some readers, I don't know. Ward20 (talk) 21:01, 5 February 2024 (UTC)[reply]
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)[reply]
Added source[1] pg 155-158. I can probably find another if the John Hopkins University press book is not sufficient. Ward20 (talk) 02:18, 6 February 2024 (UTC)[reply]
I'm very happy with your revisions. The new history section covers everything important. The Quirky Kitty (talk) 03:07, 10 February 2024 (UTC)[reply]

Steps before GA nomination

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:

  1. The causes section, and non-viral triggers like stress, pregnancy and mold.  Done
  2. The neuro-inflammation paragraph (which relies too much on an older work for NPOV)
  3. 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.
  4. Finish the signs and symptoms section with description of debilitating fatigue, pain and sleep problems.  Done

What else should we tackle before a nomination? —Femke 🐦 (talk) 13:58, 10 February 2024 (UTC)[reply]

I would be honored be nominate this article with you. The Quirky Kitty (talk) 14:06, 10 February 2024 (UTC)[reply]
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.
Ward20 (talk) 10:24, 11 February 2024 (UTC)[reply]
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)[reply]
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)[reply]
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.
I just did a quick Google search and a large amount lawyer websites appeared. To my surprise, some actually stated that some disability insurance policies now have exemptions to coverage or time limitations on coverage (24 months) if you're diagnosed with chronic fatigue syndrome, similar to diagnosis for a mental disorder. "The evolution of denying fibromyalgia and chronic fatigue syndrome claims in group long term disability policies". I don't expect that is a good reliable source, but I will dig into the matter further to look for scholarly articles. Ward20 (talk) 22:31, 11 February 2024 (UTC)[reply]
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)[reply]
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)[reply]

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:


References

  1. ^ a b Blease 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. PMID 29971693.
  2. ^ a b O'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. PMID 32601171.
  3. ^ Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, et al. (October 2009). "Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome". Science. 326 (5952): 585–589. Bibcode:2009Sci...326..585L. doi:10.1126/science.1179052. PMC 3073172. PMID 19815723. (Retracted, see doi:10.1126/science.334.6063.1636-a)
  4. ^ Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, et al. (January 2010). Nixon DF (ed.). "Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome". PLOS ONE. 5 (1): e8519. Bibcode:2010PLoSO...5.8519E. doi:10.1371/journal.pone.0008519. PMC 2795199. PMID 20066031.
  5. ^ Groom HC, Boucherit VC, Makinson K, Randal E, Baptista S, Hagan S, et al. (February 2010). "Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome". Retrovirology. 7 (1): 10. doi:10.1186/1742-4690-7-10. PMC 2839973. PMID 20156349.
  6. ^ van Kuppeveld FJ, de Jong AS, Lanke KH, Verhaegh GW, Melchers WJ, Swanink CM, et al. (February 2010). "Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort". BMJ. 340: c1018. doi:10.1136/bmj.c1018. PMC 2829122. PMID 20185493.
  7. ^ Alberts B (December 2011). "Retraction". Science. 334 (6063): 1636. Bibcode:2011Sci...334.1636A. doi:10.1126/science.334.6063.1636-a. PMID 22194552.
  8. ^ Lo SC, Pripuzova N, Li B, Komaroff AL, Hung GC, Wang R, Alter HJ (January 2012). "Retraction for Lo et al., Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors". Proceedings of the National Academy of Sciences of the United States of America. 109 (1): 346. Bibcode:2012PNAS..109..346.. doi:10.1073/pnas.1119641109. PMC 3252929. PMID 22203980.
  9. ^ Vink M, Vink-Niese A (May 2022). "The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS". Healthcare (Basel, Switzerland). 10 (5). doi:10.3390/healthcare10050898. PMC 9141828. PMID 35628033.((cite journal)): CS1 maint: unflagged free DOI (link)

—Femke 🐦 (talk) 19:40, 18 February 2024 (UTC)[reply]

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)[reply]
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)[reply]
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)[reply]

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:

—Femke 🐦 (talk) 18:54, 23 February 2024 (UTC)[reply]

If that makes the present status of those issues clearer to understand I concur. Ward20 (talk) 04:40, 25 February 2024 (UTC)[reply]

MEDRS question: CDC publishing in MDPI

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)[reply]

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)[reply]
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)[reply]

Lead sentence on isolation

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

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

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

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

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

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

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

to

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

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

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

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

Then I'm confused about GA1[10],

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

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

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)[reply]

References

  1. ^ Cite error: The named reference IQWiG-2023 was invoked but never defined (see the help page).
  2. ^ Shortland, Diane; Fazil, Qulsom; Lavis, Anna; Hallett, Nutmeg (2024-04-02). "A systematic scoping review of how people with ME/CFS use the internet". Fatigue: Biomedicine, Health & Behavior. 12 (2): 142–176. doi:10.1080/21641846.2024.2303887. ISSN 2164-1846.

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)[reply]

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)[reply]

Nice Recommendations [11]

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)[reply]

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)[reply]

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)[reply]

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)[reply]

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

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)[reply]

This is a difficult one. The source is slightly older than ideal (2017). However, I don't see many sources that directly contradict this paper. If you look at a paper that came out two days ago (Table 1, the LC-only entries), you see multiple predictive biological factors have been found for long COVID, making it likely that these will be found in ME/CFS. But no direct comparison or contradiction..
This contrasts with how we've dealt with the issue in different locations of the article:
  • In the paragraph on onset in the cause section, we've given multiple sources for % of infectious onset. It's a bit messy, but doesn't put undue attention on the IoM numbers which included very low % too, which I guess are from BPS studies
  • In the GET paragraph, we first have a statement on the clinical guidance (GET no longer advised), and then we delve deeper saying studies disagree on whether there is a small effect or no effect.
—Femke 🐦 (talk) 18:37, 6 March 2024 (UTC)[reply]

GA Review

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


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

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


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

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

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

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

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

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

While I'm all up for a four-paragraph lead, the actual guidance is more flexible: WP:LEADLENGTH. If the lead remains manageable, an occasional 5-paragraph lead is okay if that works better with organisation. For instance, if you have 5 distinct topics to work with. —Femke 🐦 (talk) 11:19, 9 March 2024 (UTC)[reply]
Don't worry, I got it down to 4 paragraphs. The Quirky Kitty (talk) 13:20, 9 March 2024 (UTC)[reply]

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

Also, there are spelling errors:

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

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

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

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

A statement such as "ME/CFS is real" is not neutral imo, as it uses the frame of a disease which may not exist. Compare with a statement such as "climate change is real", which you see in click-baity news articles. In the scientific literature on climate denial, this is considered poor science communication, as this pre-supposed there is a (valid) disagreement on the existence of climate change.
The literature on ME/CFS clearly says ME/CFS is included in the ICD, even though it's included under the two subparts of the name. We already mention the NICE guidelines and the CDC in the next. The fact we refer to these guidelines already implies they exist, it is unnecessary to include more explicit sentences. —Femke 🐦 (talk) 11:02, 9 March 2024 (UTC)[reply]

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)[reply]

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

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

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

Maxim Masiutin (talk) 19:46, 8 March 2024 (UTC)[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)[reply]
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)[reply]
Hello, Femke, Ward20 and The Quirky Kitty, the GA maintenance bot is not fully running today, see may be running at erratic times today Maxim Masiutin (talk) 20:13, 8 March 2024 (UTC)[reply]
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)[reply]
@The Quirky Kitty if you wish to keep them, please add a citation for the first paragraph that lacks citations. Maxim Masiutin (talk) 07:05, 9 March 2024 (UTC)[reply]
I did that, and couldn't find any other uncited statements. The Quirky Kitty (talk) 07:33, 9 March 2024 (UTC)[reply]
Thank you! I did minor edits to my initial review: they don't alternate the meaning, and are mostly technical. Maxim Masiutin (talk) 07:37, 9 March 2024 (UTC)[reply]
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)[reply]
I see that you resolved all the significant issues except the use of the following complex terms in the lead:
  1. pacing and activity management
  2. orthostatic intolerance
MOS:INTRO states the following: Make the lead section accessible to as broad an audience as possible. Where possible, avoid difficult-to-understand terminology, [...] Where uncommon terms are essential, they should be placed in context, linked, and briefly defined. The subject should be placed in a context familiar to a normal reader. Maxim Masiutin (talk) 08:09, 9 March 2024 (UTC)[reply]
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)[reply]
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.