Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

Please do not change ME/CFS to CFS indiscriminately

I believe following the convention that if the specific material in the article comes from a review that names it ME/CFS, that's the term that should be used for that specific material. If the review calls it CFS, it should be called CFS for that particular material. That way the article can reflect current nomenclature used in the journal articles. The nomenclature has been gradually changing over time. Thank you. Ward20 (talk) 07:32, 4 February 2023 (UTC)

I drafted those paragraphs using the term ME/CFS because I don't like the term CFS. I was under the impression the consensus was to use only CFS, so I intended to change it to CFS before publishing, not wanting to rock the boat. Instead, I forgot and caught it later.

I prefer ME/CFS to CFS, but I'm very uninterested in sparking a naming debate. Following the sources is a good interim step, and I intend do that from now on (but I might forget). The Quirky Kitty (talk) 09:08, 4 February 2023 (UTC)

I believe following the lead of the nomenclature for the specific material from the cite is the best NPOV. Ward20 (talk) 07:14, 5 February 2023 (UTC)

In my judgment, the name of the article should clearly be “ME/CFS” at this point since that’s what the majority of review articles, authoritative texts (Harrison’s etc.), NGOs and particularly authoritative public health sources (eg CDC, NIH, FDA, WHO inc. ICD) have denominated it for quite a while. JustinReilly (talk) 08:05, 10 April 2023 (UTC)

You mention some other acronyms; for each of these, the wikipedia article spells it out in the title:

• CDC: Centers for Disease Control and Prevention
• NIH: National Institutes of Health
• FDA: Food and Drug Administration
• WHO: World Health Organization
• ICD: International Classification of Diseases

That's not because the acronyms are problematic or less commonly used; that's because the spelled-out names are better titles in a general encyclopedia. I think that goes for ME/CFS too. (The case is not clear-cut; e.g., the article on the North Atlantic Treaty Organization is titled just NATO.) Nø (talk) 10:19, 10 April 2023 (UTC)

Sorry, I meant I think the title should be changed to “Myalgic encephomyelitis/ chronic fatigue syndrome,” I was just too lazy to spell it out… 😊 JustinReilly (talk) 18:12, 10 April 2023 (UTC)

PS. Renaming to Myalgic encephalomyelitis seems like a good idea to me.

Myalgic Encephalomyelitis is the name

Myalgic Encephalomyelitis is the original and proper name for the illness that should not be known as “Chronic Fatigue syndrome.” Chronic fatigue is one of the most common symptoms of Myalgic Encephalomyelitis but there are hundreds of symptoms of M.E. and hundreds of other illnesses that include chronic fatigue as a symptom. The HALLMARK symptom of Myalgic Encephalomyelitis is Post Exertional Malaise (PEM). PEM occurs in people with ME when they have used more energy than is available to their bodies. This is not regulated by caloric intake, because the energy depletion is on the cellular level. Human cells have mitochondria, these mitochondria regulate energy within each cell. Myalgic Encephalomyelitis and PEM indicates that there is disfunction in the mitochondria. This is an over-simplification because my only credentials are first year biology, and the diagnosis of both Myalgic Encephalomyelitis and Fibromyalgia. There are plenty of sources for this information like the Bateman Horne Centre, drricarseneau.com, NIH?NHS? Complex Chronic Diseases Program at BC Women’s Hospital, to name a few. 2604:3D08:3684:E300:B4CF:F93E:F2B9:6E8B (talk) 01:01, 7 February 2023 (UTC)

In my judgment, the name of the article should clearly be “ME/CFS” at this point since that’s what the majority of review articles, authoritative texts (Harrison’s etc.), NGOs and particularly authoritative public health sources (eg CDC, NIH, FDA, WHO inc. ICD) have denominated it for quite a while. JustinReilly (talk) 08:04, 10 April 2023 (UTC)

Seconding this. ME/CFS is used in the vast majority of recent and reliable sources. The article should be moved to "Myalgic encephalomyelitis/chronic fatigue syndrome". (It's legal to have slashes in main namespace page titles by the way) The Quirky Kitty (talk) 00:38, 11 April 2023 (UTC)

Not sure this is going to fly. Following many years of acrimony following the initial split of the page, one of the first of the more recent attempts ME/CFS or CFS/ME?, 4-2018 was flatly rejected by editor @Roxy the dog who stated "It should not be called ME as no myelitis has been demonstrated."

A subsequent attempt one year later Time To Change Page Name to ME, 9-2019 @Jfdwolff pointed out that "actual evidence of encephalomyelitis has never been consistently found," while @Roxy the dog reiterated "But it isn’t encephalomyelitis, and so it shouldn’t use that name." A list was produced of public health agencies that have incorporated ME into their nomenclature, but this was rejected by @Global Cerebral Ischemia as cherry-picking, given that CFS was apparently the more prominent term that one would encounter via a Google search. Also, "I get the sense that individuals who suffer from this condition want a name change because ME sounds more "medico-scientific...I freely admit that I personally think this is misleading (since there is no unambiguous evidence of an actual "encephalomyelitis,"

Another year passes,, and a discussion First Sentences: Discussion, 5-2020 on re-working the beginning of the page prompted @JzG contention that "I am pretty clear what all this is supposed to mean: refactoring the article to reflect the belief that CFS is really and only "myalgic encephalomyelitis" despite the lack of convincing pathology to show that it is encephalomyelitis. You know, exactly what the "ME" activists have been trying to do here for well over a decade."

Not long afterward, an effort was made Research published since 2015 shows a gradual change in direction, 5-2020 to demonstrate that over the past several years there had been a major shift in the scientific literature. A notable response featured @JzG weighing in again: "it's pretty clear that CDC has been lobbied hard by the "ME" community. It's extremely rare for them to adopt a term like "myalgic encephalomyelitis" when, as they state, there is actually no known cause, no diagnostic or pathological test, and no evidence that it is a form of encephalomyelitis."

As the CDC had firmly resisted such lobbying for decades, this doesn't seem logical, but this is not a forum, after all.

Immediately afterward a mention of this article Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome, 7-2019 here Update on the pathology of ME/CFS, 5-2020 which was dismissed by @JzG as "Viewpoint". That is, an opinion piece. Meanwhile there remains no evidence that CFS is a form of encephalomyelitis."

So, regardless of what anyone else, like the CDC, NIH, or NICE happens to call it, I am a bit skeptical that will matter here. I'm a bit surprised that what public health agencies label illnesses doesn't seem to matter, whereas editors' personal opinions do. I thought I'd read somewhere that Wikipedia's mission was to reflect not 'truth,' but that which was verifiable. Not on this topic apparently.

As a final aside, even the updates Hallmark symptom is post-exertional malaise, 7-2020 towards having the page reflect what's been consistently described as the defining feature of the illness? "All of which is irrelevant," according to @Alexbrn.

Anyone who reads the early talk archives for this page can see that there was a long history of contentiousness, which includes some behavior from ME advocates that could, in my view, be reasonably described as hostile. In the recent past? The scientific review process has led to significant reappraisal and redefinition, not in the realm of Beall's list, but at entities like the CDC and NICE, among others. Seemingly every adjustment has been contested. Curious if you have any thoughts @The Quirky Kitty

NeurastheniaMilkshake (talk) 05:03, 11 April 2023 (UTC)

All of those are three or more years old at this point. Weighing in as a third vote in favor of ME/CFS as the consensus name in science at this point. Innisfree987 (talk) 05:22, 11 April 2023 (UTC)

Really? - Roxy the dog 05:35, 11 April 2023 (UTC)

Yes that is my understanding of current usage in high-quality sources (like the ones recommended in the standard health sources template at the top of this page). Innisfree987 (talk) 06:33, 11 April 2023 (UTC)

Debating the debate

I've seen the archived discussions, and avoided stepping on the third rail lest we go in circles again. But when a new discussion developed, I added my opinion. It's reasonable to have another discussion. The last one was almost 3 years ago and much has changed since then. The new NICE guideline came out, many sources have been published, long Covid raised interest, and ME/CFS has become entrenched over CFS for long enough that recentism is much less a concern. Wikipedia tells us consensus can change and only to abandon discussions when the outcome is almost guaranteed, which isn't the case here.

Naming

The name ME/CFS most closely aligns with Wikipedia's guidelines, and the counterarguments that patients advocates pushed ME/CFS and that neuroinflammation hasn't been demonstrated are comparatively weak. Article titles and the medical manual of style tell us to use to follow reliable sources and editor consensus.

General Naming Guidelines

Namely, the guidelines tell us, "Generally, article titles are based on what the subject is called in reliable sources." As the great majority of reviews and guidelines say ME/CFS, this criterion strongly favors that. They recommend 5 other criteria:

• Recognizability: As ME/CFS contains CFS, it's marginally less recognizable than bare CFS.
• Naturalness: Both ME/CFS are in common use on the Web and social media, but CFS may be more common among those less familiar. Slightly favors CFS?
• Precision: As chronic fatigue syndrome is often equated with generic chronic fatigue, and implies nothing about other symptoms (especially PEM), ME/CFS does much better here.
• Concision: CFS has a clear advantage in this area.
• Consistency: Referring to the medical manual of style, ME/CFS would be strongly preferred.

Medical Naming Guidelines

They 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. Further, they give guidance for when there are regional name disputes, which could be broadly applicable here: "Diseases—The World Health Organization, International Statistical Classification of Diseases and Related Health Problems (ICD-10) or the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)."

What does the ICD-10 use? Post-viral fatigue syndrome and ME (Source). The ICD-10-CM (American version) seems to use ME/CFS first (Source).

Evaluating counteraguments

Lack of demonstrated neuroinflammation: Many medical names have some degree of anachronism or inaccuracy. For example, influenza, autism, and the Spanish flu. Thus it's difficult to dispute the use of an established term on the basis of accuracy.

Health agencies being biased by patient advocates: Regardless of who originates an idea, the output of agencies is still carefully edited and reviewed by experts. After all, every popular idea started out as fringe or obscure before gaining acceptance. And use of ME/CFS is common across agencies and publications. The Quirky Kitty (talk) 07:53, 11 April 2023 (UTC)

The problem is that there is still no evidence that it's a form of encephalomyelitis. I know that some patients hate the term CFS, but that's what it is. Guy (help! - typo?) 09:52, 11 April 2023 (UTC)

Hard for me to see how a Wikipedia editor’s personal view of a name’s legitimacy is any more germane than patients’—ie, not at all. We follow reliable scientific sources. No? Innisfree987 (talk) 10:47, 11 April 2023 (UTC)

Thank you for responding, @The Quirky Kitty. I wish I could say I'm surprised at some of the response given these guidelines, i.e. Wikipedia:Verifiability, not truth, but the double standards employed on this topic must have existed for so long for some reason or another. I thank you for your diligence and hard work in working on this page. For the most part, the sources that have redefined the condition should have long been deemed credible enough to support the edits you have worked on. Along with others, of course, but so many worked so hard for so long, only to see so much of their work dismissed. Sometimes appropriately, too often insultingly. I'll refrain from getting any more personal about this or that editor. I never thought the name issue was of primary importance, actually. I just think it's a fiasco that it's hard to think of another topic where sources that were at one point unquestioned, have seen their re-naming of an illness ignored by this website for nearly six years, because this or that editor says they have no basis for doing so. NeurastheniaMilkshake (talk) 12:22, 11 April 2023 (UTC)

What does the ICD-10 use? ICD-10 is no longer maintained, and we should be looking at ICD-11. Whilst that also lists CFS and ME as inclusion terms at postviral fatigue syndrome,[1] such inclusions are not always synonyms.[2] WHO briefly explain their classification choices for CFS in ICD-11 here. Given the resistance displayed, a name change will probably have to go down the formal WP:RM route. Little pob (talk) 13:00, 11 April 2023 (UTC)

Thanks for pointing out the ICD-11.

A name change will definitely require a requested move. In fact I'd like to formally propose one but I don't know the best way to given that a discussion is already in progress. Should I do it now or wait until this discussion slows down? The Quirky Kitty (talk) 23:40, 11 April 2023 (UTC)

Probably worth dropping a post at the RM talk page. If nothing else it'll hopefully get more voices in the conversation. Little pob (talk) 09:32, 12 April 2023 (UTC)

Thanks for the tip. I left a message at Wikipedia talk:Requested moves. The Quirky Kitty (talk) 21:20, 12 April 2023 (UTC)

They said to reference the previous discussion. The Quirky Kitty (talk) 08:43, 15 April 2023 (UTC)

Page break for editing purposes

I was actually inclined to agree with ME/CFS, but now looking at ICD-11, it's clear that would be a mistake. I agree that the plain, unambiguous fact that there is no actual evidence for encephalomyelitis is irrelevant and that what's at issue here is the recognized medical name used in high quality sources. I think the context provided by WHO in ICD-11 is very much appreciated: "In response to the proposals, WHO conducted an extensive literature review of research relating to chronic fatigue. The review found that there remains insufficient evidence to classify chronic fatigue as an infectious disease, at this time. The review also confirmed the lack of consensus on a reliable diagnostic pattern of symptoms, the continued debate about etiology and the absence of any uniform or reliable treatment. The only constant in the studies reviewed was the lead symptom of ‘fatigue’, persistent over time." It is my personal belief that the terminology "myalgic encephalomyelitis" has no scientific basis and its use is the result of lobbying by advocacy groups to give CFS a more "medico-scientific" name. I think it's wrong to believe that patients with CFS cannot be provided adequate care without distorting biomedical reality in an effort to alter opinion among the public and healthcare providers. ICD-11 makes it clear that the scientific or recognized medical name has not yet been determined. Global Cerebral Ischemia (talk) 03:27, 12 April 2023 (UTC)

Patients & patient groups clamoring for ME over CFS because it's more science-y has accomplished exactly what since 1988? If you believe their lobbying is what led CDC to officially change the name, as opposed to the emergence of the findings emphasized by the IOM report & the revised NICE guidelines, that's your choice. I happen to believe renaming this illness after a figure such as Ramsay might at least lead to energy better spent on the larger problem.

I think it might be helpful to try to determine how much credibility, if not authority, the US CDC actually holds in this arena. In October the ICD 10-CM adjusted their coding, adding G93.32 for, you guessed it, ME/CFS. And that name is what shows up whether you search for ME [3] or CFS [4]

The FAQ sheet linked above from states "WHO conducted an extensive literature review of research relating to chronic fatigue," which in ICD-10 CM is still R53.82 [5]. It also "confirmed the lack of consensus on a reliable diagnostic pattern of symptoms," which is, at least to some extent, in conflict with the IOM Report, and the case definition it produced which the CDC adopted the same day in July 2017 when they officially revised their materials and changed the name to ME/CFS. Of course, 'consensus' is...complicated, and, to be fair, there remain those whose guidance has not undergone review and subsequent revision in the manner of, say, NICE. Australia and Denmark would be examples, although DK does have that conflict between the health authorities and the government.

In any case, ICD-11's 8E49 still lists ME as well as CFS under PVFS, so I just don't see your post here as all that convincing. You people want to continue to keep this page named in a way that doesn't conform with the public health agencies you're always saying are amongst the most reliable medical sources on the face of the earth? Your sandbox, your rules. Have at it. NeurastheniaMilkshake (talk) 05:09, 12 April 2023 (UTC)

Beyond authoring the base classification (i.e. ICD-10), and giving the American government permission to adapt to the needs of the US health care system; it's not stated how much influence WHO had – if any – over ICD-10-CM's design. Regardless, ICD-10-CM is written for use in the USA and its classification of conditions should not be used in preference to WHO's versions of ICD-10 or ICD-11. CDC are an authority, but not the authority. Little pob (talk) 09:29, 12 April 2023 (UTC)

No, and I don't think they should be, nor do I think it's wise to be US-centric about this. But the term "CFS" came from them, and the most-used case definition was theirs...their authority on the name was absolute on this page to the point where the ME page went poof, essentially taking with it ICD's G93.3. So much for the authority of the WHO, hmmm?

Then one day CDC changed the name, and their authority defended zealously on this page for more than a decade vanishes just as suddenly. So if they're no longer the authority on what to call this, who is? Why? What changed? And why is it that it looks like an issue in actual control of a number of editors engaged in "Original Research," as opposed to "Verifiability" over "Truth." NeurastheniaMilkshake (talk) 10:35, 12 April 2023 (UTC)

I only chimed in because the ICD was being mentioned and now respectfully bow out. Little pob (talk) 11:16, 12 April 2023 (UTC)

Not being US-centric is a good point. Even today, British media and patients lean more towards ME and Americans CFS.

The WHO, if anything, leans toward CFS weakly. (Thank for pointing out that the ICD-10 is deprecated.) The ICD-11 includes both ME and CFS. The only WHO page I can find prefers CFS, but it's a brief article on coding rather than a comprehensive description or even a summary of the subject. The Quirky Kitty (talk) 21:28, 12 April 2023 (UTC)

Better WHO page dated 01/2023:

Inclusions:

chronic fatigue syndrome

myalgic encephalomyelitis

Exclusions:

Fatigue (MG22)

FYI, listed under 08 Diseases of the nervous system/8E49 Postviral fatigue syndrome. Ward20 (talk) 23:57, 12 April 2023 (UTC)

Re: ICD. Some background on WHO ICD: The Illness we now know as ME or CFS was first included in ICD in 1968 as ME at G93.3 (G was “Diseases of the Brain) and it remained there as WHO ICD’s name for the disease ever since. At some point after CDC re-named “ME” to “CFS” in the US, WHO started indexing the term “CFS” to the main term “ME,” but not including “CFS” as a code; ie “ME” was WHO ICD’s sole term for the disease, but they included “CFS” in the index (which directed people to “ME”). AFAIK, this was the case all the way until sometime in the last 5-10 years when the code was changed to the present “Post-Viral Syndrome” under Other Nervous System Diseases with “ME” and “CFS” listed as included terms (I think they might be called). Note there was never a code for “ME/CFS” and never a code for “CFS” until recently (when it was put alongside “ME” under “PVS”).

That short page on WHO re “CFS” in ICD does in itself support “CFS” and even “CF” over “ME” or “ME/CFS” as the latter two terms are not mentioned. But when taken in the overall context of WHO ICD, including the history of ME in ICD, IMO “Post-Viral Syndrome” would be the favored/indicated term, with “ME” a close second and “ME/CFS” and then “CFS” following. But because of its lack of use elsewhere, “PVS” is not a contender.

I’ll note that the shortening to “chronic fatigue,” which happens here on this WHO page on “CFS” in ICD highlights the extremely serious problem with the term “CFS,” that “CFS” very often gets shortened to just “chronic fatigue,”- in a large majority of lay press pieces especially, and in headlines almost always; and very often even in authoritative medical sources where you would hope more care would be taken. The problem of course is the conflation of “CFS” and the symptom of “chronic fatigue” and the illness “idiopathic chronic fatigue.” As is often said, this would be like renaming “Alzheimer’s Disease” to “chronic forgetfulness syndrome,” which while technically accurate would be extremely inappropriate. Reliable sources would shorten it to “chronic forgetfulness” and research quantity and quality, treatment and medical and lay understanding of the disease would resultantly seriously degrade. JustinReilly (talk) 06:58, 15 April 2023 (UTC)

In terms of media use, which affects recognizability and naturalness, there's a weak trend towards ME alone since the pandemic. For example, Understanding myalgic encephalomyelitis in Science. The Quirky Kitty (talk) 21:34, 12 April 2023 (UTC)

While there is indeed still no evidence of inflammation or encephalitis (neuroinflammation is something different), still all the high quality sources now use the term ME/CFS. It is indeed because patients prefer that (incorrect) term, but still, that is the term that is now used, so the article should probably be changed to it. I would suggest going down one of the arbitration routes if there is still disagreement on this talk page. sciencewatcher (talk) 17:41, 11 April 2023 (UTC)

Does anybody know what "frank Encephalomyelitis" is? - Roxy the dog 15:52, 11 April 2023 (UTC)

I’m assuming you’re referring to my using that term below in the topic “Mention of psychiatric causes in cognitive function section.” By “frank” I meant “clear, uncontestable, classic case.” It’s my sense that this is a use of “frank” in medicine to describe a very clear case of an illness (or of a sign). JustinReilly (talk) 16:56, 11 April 2023 (UTC)

I apologise. I thought you used it in this thread. I have never seen frank used this way anywhere. in all my life. 67 years. Roxy the dog 02:49, 12 April 2023 (UTC)

I believe it’s a bit of an archaism. If you google “a frank case of” and “medicine”, mainly you’ll see hits from the mid-20th century, altho not exclusively. (Or at least I do, I don’t really know how an algorithm may be affecting my results.) Innisfree987 (talk) 06:46, 15 April 2023 (UTC)

Mention of psychiatric causes in cognitive function section

Currently, the article says in the section on symptoms and cognitive function, "Some researchers believe psychiatric causes underlie or contribute to the illness, while other researchers believe the illness causes biochemical and sociological changes in people that produce the symptoms."

The consensus on ME/CFS has swung strongly in the biomedical direction in the past 5-10 years and very few secondary sources from this period (especially in the later half, or in gov't guidance, quite high on the hierarchy of evidence) support a biopsychosocial model of ME/CFS. The idea that "psychiatric causes underlie or contribute to" is a clear minority view. Saying "some" support one model and "some" support another, as if it's nearly 50/50, is undue weight. If we mention this, we need to portray it as a controversial minority. The Quirky Kitty (talk) 03:31, 7 April 2023 (UTC)

I agree and it also seems shoe-horned into that section. I’m going to remove; suggest discussing phrasing and placement here. Innisfree987 (talk) 04:05, 7 April 2023 (UTC)

The watershed review where the causes of ME/CFS symptoms changed away from atypical depression was The IOM's 2015 "Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness". Reviews supporting the psychiatric causes attributions generally used references from the 1980s and 1990s. After 2015, the distinctions are similar to these:

Larkin 2017: "It is clear that there is a significantly shared co-morbidity with depression and CFS [43]. It is also clear that depressive symptoms frequently coexist during the course of CFS [37]. Likewise it is evident that fatigue and somatic symptoms, which may include pain, muscle tension, and flu-like malaise will often be reported in courses of depression [43]. However, despite the shared clinical features there are significant dissimilarities between the two conditions, so much so that they are considered separate illnesses."

Noor 2021: Major depressive disorder (MDD) is another differential of psychiatric origin, which may present very similarly to ME/CFS... High rates of depression are seen in ME/CFS; however, it is not seen in all ME/CFS patients. Thus categorization as a purely psychiatric illness was dismissed in 2015 by the Institute of Medicine (IOM) (21). Whether high rates of depression are a result of one disorder affecting the other or simply due to a shared etiological pathway remains controversial. Nevertheless, recent research has shown that despite being closely interrelated ME/CFS and MDD are distinct disorders and should be clinically treated as such (22).

It would probably be prudent to describe the cognitive symptom of depression in ME/CFS using the newer review POV's in the Cognitive functioning section. Ward20 (talk) 06:54, 7 April 2023 (UTC)

Yes, agreed. Thanks for that. sciencewatcher (talk) 15:14, 7 April 2023 (UTC)

There is a lot of complex material on depression and anxiety, and now I'm starting consider it might be better to describe them in a Psychological symptoms section under the existing Pathophysiology designation. Ward20 (talk) 04:12, 8 April 2023 (UTC)

Yes, it should have a separate section, such as Psychiatric symptoms, or Psychiatric co-morbidity. sciencewatcher (talk) 15:43, 10 April 2023 (UTC)

Psychiatric co-morbidity sounds descriptive to current POV. How about expanding Management/Counseling? I envision more material in that section about counseling to manage daily living, along with emotional well-being. Ward20 (talk) 22:38, 11 April 2023 (UTC)

Deumer 2021 Another review that describes depression in ME/CFS in some detail, however I found the information in the different sections disjointed and somewhat contradictory. It could be because many authors contributed to the review. Ward20 (talk) 22:06, 7 April 2023 (UTC)

Grande 2023, “The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” also relevant: “we outline a psychotherapeutic approach […] taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention.” Innisfree987 (talk) 01:46, 8 April 2023 (UTC)

Sebaiti 2022] Very technical, Systematic review and meta-analysis of cognitive impairment in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). "...this suggests that mood or pain can mediate but not cause ME/CFS symptomatology." Ward20 (talk) 03:42, 8 April 2023 (UTC)

Bateman 2021] A ME/CFS best clinical practices summary. "...up to 91% of affected people (editor comment: PWME/CFS) are undiagnosed or misdiagnosed with other conditions, such as depression.1" "...depression and anxiety in ME/CFS is similar to that in other disabling, chronic illnesses." "...fatigue and a reduction in activities can be seen in both ME/CFS and depression or anxiety" (Conditions synergistic). Treat "secondary depression/anxiety" for improvements in "quality of life and severity of symptoms." Ward20 (talk) 03:42, 8 April 2023 (UTC)

Maksoud 2020 Review of neurological impairments in ME/CFS using neuroimaging techniques. "Almost all studies found depression, anxiety, pain and fatigue scores were significantly higher in ME/CFS patients compared with Healthy Controls." Ward20 (talk) 03:42, 8 April 2023 (UTC)

Not a surprise, and it would be close to impossible to separate cause and effect in most cases. Guy (help! - typo?) 09:53, 11 April 2023 (UTC)

Agree with quirky kitty JustinReilly (talk) 07:51, 10 April 2023 (UTC)

Of course you do, as one of the handful of editors determined to use Wikipedia to turn CFS into a form of encephalomyopathy, regardless of the lack of physical evidence. But the etiology remains unknown, according to every reliable source, and there is no physical marker discernible in tests or at autopsy. Guy (help! - typo?) 09:56, 11 April 2023 (UTC)

Your comment has a derisive tone and is inapposite. The Etiologic agent(s) have not been determined, but what is known about it beyond cavil is that the etiology is NOT psychiatric. As Kitty noted, National Academy of Science said this back in 2015. Most of the studies in the early years/decades were psychological and not one came up positive AFAIK. And a good deal of pathophysiology has been discovered, and it’s all organic, not psychiatric.

For the purposes of this discussion, whether or not it constitutes frank Encephalomyelitis is irrelevant. What is relevant and dispositive is the fact that reliable sources state that it has been proven organic, not psychogenic. JustinReilly (talk) 10:37, 11 April 2023 (UTC)

All of that is irrelevant, as the discussion is not about whether the illness is psychiatric, it's about updating the info discussing psychiatric symptoms. There is no dispute about that...all the reviews, NICE guidelines and CDC all discuss psychiatric symptoms and say they should be treated if present. What differs in the sources is whether these symptoms are higher than for other serious illnesses. But that's not a problem...we just parrot the sources on wikipedia, so we can include reviews that give both viewpoints, based on their weight. As for whether the illness is psychiatric or not, that's a separate issue, which is discussed briefly in various points in the article, but could probably use a section in its own right. Again, there are various viewpoints, and many of the reviews tend to disagree with CDC, IOM and NICE. However that doesn't mean we ignore those reviews. Again, wikipedia just parrots the sources based on weight, so we just include both. That's how wikipedia works, it doesn't try to nail down the illness to a specific viewpoint. If that's what you want, me-pedia does a great job of it. sciencewatcher (talk) 17:41, 11 April 2023 (UTC)

Agree, stay with discussing material and weight from sources about this topic. Open a new section for other issues. Ward20 (talk) 22:38, 11 April 2023 (UTC)

One issue is whether it should be framed- as you do- as “psychiatric symptoms” as part of the illness (regardless of the rate at which they (co-)occur- less, more or the same, as other serious illnesses- I haven’t looked at the literature in recent years but in past years the reviews were saying that they co-occurred- both during and prior to Illness onset- at rates lower or similar to those in other serious organic illnesses).

Would you say that cancer and ALS have “psychiatric symptoms” or would you say pwC and pwALS often have co-morbid depression and anxiety since co-occurring higher-than-baseline depression and anxiety disorders are a result of having a serious illness and are neither proven causes nor part of the diseases themselves.

I would obviously say the latter approach is appropriate. And

Assuming, arguendo, that rates are similar or lower for ME, then I definitely would say psychiatric sequelae are co-morbid disorders to ME resulting from dealing with a serious illness and note that it’s a lower or similar rate as in other serious illnesses and not part of the illness.

Note that there is the real world danger of physicians conflating the two and misdiagnosing pwME with only psych disorders. The biggest harm being that CBT/GET is a very safe and effective intervention for depression and anxiety, but is the most unsafe and ineffective intervention for ME. Many pwME have had their illness seriously and indefinitely exacerbated by CBT/GET prescribed for (correctly diagnosed) ME, for ME misdiagnosed as depression and anxiety and for (correctly diagnosed) depression and anxiety co-morbid with ME. JustinReilly (talk) 05:38, 15 April 2023 (UTC)

Requested move 15 April 2023

Chronic fatigue syndrome → Myalgic encephalomyelitis/chronic fatigue syndrome – The condition is referred to as ME/CFS in the great majority of reliable sources, such as the CDC's information, NICE's guidelines, the NAM report, and almost all recent reviews. ME and ME/CFS are also in common use in the non-medical media. See Talk:Chronic fatigue syndrome#Myalgic Encephalomyelitis is the name for all previous discussion and my more thorough treatment of the issue (beginning with Debating the debate). The Quirky Kitty (talk) 08:58, 15 April 2023 (UTC)

• Oppose, the current title is far and away the most common name. Let's not confuse readers with inside-baseball jargon. Randy Kryn (talk) 15:01, 15 April 2023 (UTC)
• Support. Per The Quirky Kitty. Making sure Wikipedia reflects the term readers will find used by most major, reliable medical sources is certainly not inside baseball. Innisfree987 (talk) 15:06, 15 April 2023 (UTC)

• Please do a survey of 100 people. I'll wait. In the meantime please see this n-gram. Randy Kryn (talk) 15:11, 15 April 2023 (UTC)

• (EC) Thanks, I was about to circle back to emphasize exactly this point: we don’t use personal opinion like this to decide Wikipedia content. We follow reliable sources: especially strictly for medical content. Meanwhile your Google terms search does not include the proposed title (and again, we’re talking about medical content. Not all sources are equal here.) Innisfree987 (talk) 15:18, 15 April 2023 (UTC)

I attempted to do an n-gram for ME/CFS, but I got this nonsense graph. Every written word up until about 1982 was the word "myalgic encephalomyelitis/chronic fatigue syndrome". While it dropped in popularity, but by 2019, was still several times more common than the word "the".

Out of curiosity, I investigated the prevalence of the two terms in PubMed in the years 2013-2022:

• Chronic fatigue syndrome: 2,886
• Myalgic encephalomyelitis/chronic fatigue syndrome: 665
• Myalgic encephalomyelitis: 1,146 results

The Quirky Kitty (talk) 18:42, 15 April 2023 (UTC)

Changing to ME/CFS is clearly warranted. The term ME has been commonly used outside the US, and CFS was used in the US. Most current sources now use ME/CFS to avoid confusion, although neither term is a good descriptor of what is known about the disorder. The combined term is clearly the most inclusive from a global perspective. 2601:283:4000:21A0:38ED:2253:66B0:C455 (talk) 15:02, 30 April 2023 (UTC)

• Oppose. We shouldn't call an illness something it isn't. -Roxy the dog 15:31, 15 April 2023 (UTC)
• Oppose. It would be irresponsible to label people with Chronic Fatigue Syndrome as suffering from inflammation of the brain and spinal cord (encephalomyelitis) when there is no evidence to support this. See 2021 report "No Signs of Neuroinflammation in Women With Chronic Fatigue Syndrome or Q Fever Fatigue Syndrome Using the TSPO Ligand [11C]-PK11195."

Also, we're only talking about the title, which meets all 5 Wikipedia requirements (recognizability, naturalness, precision, concision, consistency). The existing article text quickly says "also called myalgic encephalomyelitis (ME) or ME/CFS".

Also, there seems to be selective quoting of the 2015 IOM/NAM report, which is entitled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" and proposes to redefine the illness, including a name change. Some quotes about the name change from the report:

• "the term 'myalgia' refers to a symptom that is neither a distinguishing aspect of this illness nor a severe symptom in many patients with ME/CFS."
• "In what will likely be its most controversial recommendation, the committee has proposed that the name 'chronic fatigue syndrome' no longer be used to describe this disorder. The committee repeatedly heard from patients that this term was stigmatizing and too often precluded their receiving appropriate care. The committee instead determined that the name 'systemic exertion intolerance disease' (SEID) better characterizes the disorder for which its proposed diagnostic criteria were developed."
• "In considering what name would be most appropriate, the committee turned first to 'myalgic encephalomyelitis' or 'encephalopathy' (ME), which was the name most commonly supported in the public comments. The committee, however, was concerned that the term 'encephalomyelitis' is not well supported by the evidence and that there is substantial controversy surrounding the two versions of this name. Neither version conveys the full complexity of this disorder."

In other words, the 2015 report doesn't think ME, ME/CFS, or CFS are suitable terms, but acknowledges that the statements about CFS are "controversial". I question the reliability of non-scientist activists who are commenting.

Given the lack of widespread support for SEID since 2015, I say revert back to CFS. What would change my mind? A broad consensus of neurologists supporting a name change.

I also object to "Myalgic encephalomyelitis" being first and propose that any name change to include it would have "Chronic fatigue syndrome" first. ScienceFlyer (talk) 18:29, 15 April 2023 (UTC)

I outlined in my original comment my opinion that etiology is of limited importance to nomenclature.

For what it's worth, the NAM report proposed SEID while using ME/CFS throughout--they appeared to favor ME/CFS among the established names.

CFS fails quite badly on precision vs ME/CFS. While ME implies the wrong thing about etiology, CFS implies the wrong thing about symptoms--that it's just fatigue. There are many other symptoms, and post-exertional malaise is frequently called the "hallmark" symptom, rather than fatigue. (Example) The term chronic fatigue syndrome is frequently confused with the chronic fatigue, perhaps the most nonspecific symptom ever. "Alloying" the terms together mitigates the weaknesses of both.

I question the reliability of non-scientist activists who are commenting.
— User:ScienceFlyer

I don't see benefit in calling editors advocates; we both have POVs and can debate on merits without questioning people's motivations. The Quirky Kitty (talk) 20:08, 15 April 2023 (UTC)

I was talking about the activists who commented to the panel who wrote the 2015 report. I was not talking about Wikipedia editors. A lot of the leaders in the ME/CFS movement are fringy and unreliable. Activists shouldn't be used to judge the broader patient population. Basically, the 2015 report was heavily influenced by activists, which is why it uses the unscientific term ME/CFS while calling for a name change. ScienceFlyer (talk) 20:47, 15 April 2023 (UTC)

Let me strike out my comment then. I'm glad we're staying on a higher level.

The 2015 NAM report is a useful and reliable source, having been published by a prestigious institution, written by a large team of authors and editors, and based on an exhaustive literature review. Authors included Lucinda Bateman, Peter Rowe, Betsy Keller, Nancy Klimas--people who have extensively studied or treated ME/CFS themselves. I see no basis in disregarding their naming decisions on the basis that they took input from patients. On the contrary, there's no basis for dismissing the name ME/CFS because experts support it based on patient input. When making naming decisions, experts consider needs like following common usage and avoiding stigma. Regardless, ME/CFS is heavily used by sources independent of the NAM. The Quirky Kitty (talk) 09:01, 16 April 2023 (UTC)

Agree there were a lot of public comment submissions to the IoM committee by patient activists. This was because it seemed like NIH had set up the process, in conjunction with IoM to arrive at a pre-ordained result ratifying NIH & CDC’s positions at the time which were junk science stances. In any event, there were numerous scheduled paid presenters to the committee who were Wessley school types. They got long blocks of time, whereas patients were allowed very short public comment (written comment was allowed, but who knows if those were read).

There were 15 committee members, 7 paid staff, 3 paid consultants, 15 reviewers and a comprehensive 18 month study period, costing $1 Million. All of the committee members were accomplished clinicians and researchers. And most of the ME specialists and all of the non-ME had impeccable CVs. It’s laughable to suggest the IoM report was overly or inappropriately influenced by patient activists. JustinReilly (talk) 09:29, 24 April 2023 (UTC)

I see a comment from @Little pob above that ICD-11 (and ICD-10 before it) calls this postviral fatigue syndrome. Why is that name not being considered? WhatamIdoing (talk) 20:21, 15 April 2023 (UTC)

CFS is a syndrome based on symptoms, not whether there was a virus beforehand. Also, in the 80s, it was hypothesized that Epstein-Barr virus caused CFS, but this hypothesis was later discredited. (Reference) So at least one link to a virus turned out to be incorrect. ScienceFlyer (talk) 21:23, 15 April 2023 (UTC)

ME and CFS and its precursor terms, Post-Viral Fatigue Syndrome and Epidemic Neuromyasthenia all started out describing discrete outbreaks of disease in a manner that would suggest a microbial etiology. For EN and ME, these epidemics were usually in hospitals, often among doctors and nurses. PVS obviously still implies viral etiology and EN ended its “career” as an epidemic disease as implied in the name. The terms ME and CFS now include non-epidemic cases.

Three-quarters of ME/CFS cases are “triggered”/proximately caused by a viral or reported viral-like illness. EBV is highly associated with ME/CFS, but most cases are not triggered by mono, not all cases have high EBV titers and there are cases of chronic EBV infection without comorbid ME/CFS. Therefor, while certain viruses are highly associated with ME, as triggers and comorbid infections, PVS is not an appropriate term for some ME cases. JustinReilly (talk) 03:15, 16 April 2023 (UTC)

Three ME literate doctors in the 1987 Holmes committee analyzed the Lake Tahoe outbreak, which was investigated by CDC epidemiologists Jon Kaplan and Gary Holmes, and pronounced this ONE outbreak to "Posess all the primary determinants of ME". They did not analyze any other. But it was the Tahoe outbreak under consideration, for this had caught public attention and had all the new evidence generated by Drs Cheney, Peterson and Anthony Komaroff. They felt so strongly that this was ME that they walked out in protest at the plans to create a new name. This would surely support the view of combining ME and CFS.

Except the Tahoe evidence was not the same as evidence found in ME. Tahoe had no polio outbreak. Anti polio antibodies were not found. Instead, the Gallo lab identified a newly discovered herpes virus. Which came to be called HHV6A. (A strain. Not the roseola B strain)

If researchers were willing to use ME/CFS as an entry level starting point for further research, eventually learning that Royal Free ME and Lake Tahoe CFS had different viral clues and subsetting each, then ME/CFS might be workable as a research name.

But no researchers are doing this. Instead they throw out ALL history and evidence from both ME and CFS to make "ME/CFS" a new starting point with only PEM its basis.

Essentially meaning both ME and CFS have been sacrificed in order to restart the entire process. EriktheMoldWarrior (talk) 03:43, 3 May 2023 (UTC)

Please, keep in mind WP:NOTFORUM. This really isn’t the place to debate what medical authorities should have done. Innisfree987 (talk) 04:47, 3 May 2023 (UTC)

"This really isn't the place to debate what medical authorities should have done" is a nonsensical proposition.

If one refuses to see or discuss where the "error" was made, there is no possibility to correct it. EriktheMoldWarrior (talk) 15:37, 6 May 2023 (UTC)

Yes that’s right: there is no possibility to “correct” it here on Wikipedia. If you think medical authorities should have done something different, you (or others here expressing a similar argument) need to take it up with them. On Wikipedia our task is just to write down what they did say. Innisfree987 (talk) 16:30, 6 May 2023 (UTC)

Then the entire methodology of Wikipedia is only to enable the perpetuation mistakes?

Nothing on Wikipedia can be trusted, due to this odd perspective? EriktheMoldWarrior (talk) 20:42, 6 May 2023 (UTC)

WP’s quality control comes via standards for what’s considered a reliable source (I just detailed the medical policies in reply to your comment below), but yes it’s only reliable to the extent those sources are. We don’t undertake to revise them, per the WP:No original research policy. Innisfree987 (talk) 21:36, 6 May 2023 (UTC)

Erik, @Innisfree987 is correct. This “Verifiability, not truth” policy is discussed in this Wikipedia editing essay: WP:NOTTRUTH. The essay itself discusses in more detail beyond below except:

• WP:NOTTRUTH Wikipedia:Verifiability, not truth

  — … Not truth: It is not good enough for information to be true, and it is definitely not good enough for you to (perhaps wrongly) believe it to be true. Wikipedia values accuracy, but it requires verifiability. You are allowed and encouraged to add material that is verifiable and true; you are absolutely prohibited from adding any material that is un-verifiable, with zero exceptions—even if the un-verifiable material is True™..., Wikipedia:Verifiability, not truth

To some extent there must be bright line rules on Wikipedia or the disputes among editors would become (even more) endless. They can also be helpful IF people reading are aware of them, so they know what the criteria are for what’s said on Wikipedia. Problem is, people are not aware of Wikipedia’s rules, so like you (and me, before I started editing) the average person expects that when they clash, Wikipedia would value truth over what’s said in mainstream sources. Instead, there is a core emphasis on simply repeating mainstream sources as if they were the truth instead of saying: “this is what most mainstream sources say, but here is the truth;” or at least the more practical “this is what most mainstream sources say, here’s what a minority of mainstream sources say and here’s what a majority of non-mainstream sources say.”

I think that the latter is what Wikipedia should do in the near term, but I am not under any illusions that this shift will occur anytime soon. I think my first policy suggestion, that Wikipedia say “this is what most mainstream sources say, but here is the truth” should be incorporated in limited instances where it has been truly proven to Wikipedia that mainstream sources are false on some important issue. I think it should remain limited since conducting inquests into anything that was challenged would clearly be impracticable, but there

I think that it’s also really important for readers to know the most important policies for inclusion when they are reading Medical articles, since this can, and surely does, have great real world impact on people’s lives and health.

So, I think there should be a short summary description of the most important policies in a box at the top of med articles and a full description in a box at the bottom so people can know that anything true that is not in secondary or tertiary sources deemed by Wikipedia to be

“Reliable Sources” WP:RS, or in the case of medicine, “Reliable Medical Sources”: WP:MEDRS, will not be found on Wikipedia and statements Wikipedia knows are false, but constitute the majority view of these sources will be presented as true if they otherwise are acceptable to Wikipedia.

I think it would be a complete no-brainer to lead with a notice like this if Wikipedia really wanted to spread knowledge, not misinformation, so the fact they don’t gives me real pause.

But these type of discussions about dissatisfaction with core policies and other procedural issues are best had at places on Wikipedia other than on the article Talk pages. Not sure exactly where, though since I haven’t looked.

And innisfree is also right that the article talk pages aren’t really the place to have

factual/ substantive/ “on the merits”

discussions about the topic of an article.

The article talk page is really just the place to discuss, given Wikipedia’s policies and guidelines, what should be in the article.

Believe me, if you edit not in conformity with the policies and guidelines, it’s a complete waste of time since it will be reverted and the reversion of your edit will stand. JustinReilly (talk) 01:42, 8 May 2023 (UTC)

As I noted in the earlier thread, v few sources use the term “PVS,” so it’s a non-starter. JustinReilly (talk) 02:54, 16 April 2023 (UTC)

As JustinReilley said, PVFS is very rarely used. The Quirky Kitty (talk) 08:27, 16 April 2023 (UTC)

(Responding to ping) @WhatamIdoing in many instances the ICD lumps things together to keep the number of codes down. From the ICD-11 reference guide: Within the coded categories there are typically other optional diagnostic terms. These are known as ‘inclusion terms’ and are given, in addition to the title, as examples of the diagnostic statements to be classified to that category. They may refer to different conditions or be synonyms. They are not a sub-classification of the category.[6] (emphasis mine) As a coder; I am only qualified to comment that all three (PVFS, CFS, ME) have been classified within the same category, and not on the intent of ICD-10 and ICD-11 in listing them like this.

It is perhaps worth noting that SNOMED CT (SCTID: 52702003) lists "chronic fatigue syndrome" as its preferred term; listing everything else (except PVFS) as synonyms. The CFS term was apparently created in 2018, along side a separate term for PVFS (SCTID: 51771007). I should highlight that my knowledge of SNOMED CT is limited, however, so there may be technical constraints preventing the use of special characters (such as "/") appearing within the name of a term that I am unaware of. Little pob (talk) 16:17, 16 April 2023 (UTC)

• Support. for the reasons laid out by me and Quirky Kitty in the above comment section, principally that over the past 5 years, it has been used by a good majority of WP:MEDRS.

I also object to "Myalgic encephalomyelitis" being first and propose that any name change to include it would have "Chronic fatigue syndrome" first.
— User:ScienceFlyer

For the purposes of choosing an article title, I think we should treat “CFS/ME” and “ME/CFS” as each being a single term rather than each being a combination of two terms. If the latter were the case, neither would be the greatest choices, IMO, because of the “concision” criterion. “CFS/ME”

is rarely employed. I have only seen it used in three contexts: (1) in Wessely School papers (and their most recent work I’ve seen uses “ME/CFS”), (2) in only a tiny percentage of small patient organizations eg Rocky Mountain CFS/ME Assn. and (3) IACFSME, a medical society, but they used that only bc of web domain name considerations. So, IMO, “CFS/ME” should not be up for consideration.

It would be irresponsible to label people with Chronic Fatigue Syndrome as suffering from inflammation of the brain and spinal cord (encephalomyelitis) when there is no evidence to support this. See 2021 report "No Signs of Neuroinflammation in Women With Chronic Fatigue Syndrome or Q Fever Fatigue Syndrome Using the TSPO Ligand [11C]-PK11195."
— User:ScienceFlyer

There are a ton of studies showing Neuroinflammation and they are reflected in the reviews and other WP:MEDRS. A primary source like this is not a WP:MEDRS source.

I personally think that SEID is the most appropriate name since it is accurate and reflects a pretty specific pathophysiology/symptom/sign complex (Exertion Intolerance). Unfortunately, it has not been widely adopted, so is not an option.

CFS is an extremely inappropriate name that has caused tremendous damage as I went into in a comment in above section.

The Federal CFS Advisory Committee (now defunct) subcommittee on nomenclature’s final recommendation perhaps 15-20 years ago (sorry I don’t remember more exact dates), recommended that the name be changed to either ME (to stand for either M. Encephalomyelitis or M. Encephalopathy- I think they may have leaned toward the latter) or ME/CFS. The rationale IIRC, as voiced by subcommittee member Harvard Med School Prof. Tony Komaroff, chief of internal medicine at Brigham and later editor in chief of all Harvard health publishing, was that the Neuro inflammation in ME did not rise to the level of that traditionally recognized as being encephalitis, but that given it was the long-standing name, it wouldn’t be out of bounds of medical nomenclature to retain the name. But that no one could object to M. Encephalopathy. My sense is that patients in general are good with ME standing for either one, as am I.

I think that Wikipedia’s guidelines preclude us from using M. Encephalopathy/ CFS since it has seen very little use. We can, I think, however, use ME/CFS and under nomenclature section offer the view (with due weight) that -pathy ending is not controversial and is accurate while -itis may not be IF we can find a source to support.

Frankly, though, as I’ve said in an earlier comment, we all know Wikipedia’s “verifiability, not truth” guideline and that the verifiability requirement is especially strict in medical articles. And as others have noted or alluded to, when this supported “CFS” and continues to support all kinds of harmful and inaccurate misinformation being stated as fact, the “other side,” has always jammed that guideline down our throats. I still strenuously object to the existence of that policy and now that you have changed your tune to a righteous insistence on accurate information, I hope to God you guys will all join me in trying to get it modified if you are in fact actually serious about not wanting Wikipedia to propagate misinformation. Pls contact me on my talk page if you are interested in that.

But Until it is changed, “the other side” is going to have to accept what’s good for the Goose is good for the Gander…

ScienceFlyer quoting IOM ME/CFS report:

”In considering what name would be most appropriate, the committee turned first to 'myalgic encephalomyelitis' or 'encephalopathy' (ME), which was the name most commonly supported in the public comments. The committee, however, was concerned that the term 'encephalomyelitis' is not well supported by the evidence and that there is substantial controversy surrounding the two versions of this name. Neither version conveys the full complexity of this disorder."
— User:ScienceFlyer

The first and third are fair points on the merits (which don’t matter much or at all according to “verifiability not truth”):

“(1) The committee, however, was concerned that the term 'encephalomyelitis' is not well supported by the evidence…

(3) Neither version conveys the full complexity of this disorder."

And, IMO, the second point does not undermine support for ME:

(2) “there is substantial controversy surrounding the two versions of this name.”

I am almost certain that what the IOM committee meant by that was that there is controversy among ME patients as to whether “ME” and “CFS” are the same or separate illnesses. The view that they are separate illnesses is a small minority view among patients and is not a view ever expressed by researchers or clinicians including in any published work, AFAIK. We can all agree this fact does not undermine the eligibility of the term “ME.”

As QuirkyKitty notes, the IOM paper exclusively uses ME/CFS in the title and review text, except in the recommendation section. The IOM paper highly supports the use of ME/CFS. JustinReilly (talk) 09:16, 16 April 2023 (UTC)

Even IACFSME, by the way, uses the term ME/CFS on their website when not referring to their own organization. The Quirky Kitty (talk) 14:04, 16 April 2023 (UTC)

Perhaps we should consider the abbreviation itself as a potential title. WhatamIdoing (talk) 19:27, 16 April 2023 (UTC)

I think that’s a good idea. Reflects the literature and not unprecedented for Wikipedia titling (cf HIV/AIDS). Innisfree987 (talk) 19:54, 16 April 2023 (UTC)

That's a very reasonable idea. I would be happy with ME/CFS instead of the long version. The Quirky Kitty (talk) 02:37, 21 April 2023 (UTC)

I agree with ME/CFS (the abbreviated version) being reasonable. I do still think the full myalgic encephalomyelitis/chronic fatigue syndrome would be appropriate as well- regardless of whether some people think the names accurately describe the condition or not….that is what they are widely called in medical & scientific literature worldwide. Including ICD-10 medical coding guidelines in the US. 2601:283:4000:21A0:38ED:2253:66B0:C455 (talk) 18:57, 30 April 2023 (UTC)

• support per The Quirky Kitty--Ozzie10aaaa (talk) 01:06, 17 April 2023 (UTC)
• support The Wikipedia:Manual of Style/Medicine-related articles supports ME/CFS as the article title: "The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name) or an historical eponym that has been superseded."[7]

• ME/CFS is used by most English-language national health services and guidelines: CDC,[8] NIH,[9] NICE,[10] Australian Government,[11] Scottish Government,[12]. FDA used CFS/ME,[13] Public Health Agency of Canada used CFS/ME in a now archived pub.[14]
• ME/CFS is used by national and international physicians organizations: IACFS/ME,[15] U.S. ME/CFS Clinician Coalition,[16] EUROMENE.[17]
• ME/CFS is used by misc. WP:MEDRS organizations: Alberta Health Services,[18] New York State Department of Health,[19] Victoria State Government,[20] BMJ Best Practice,[21] Vermont Department of Health.[22]

Concerning some previous statements in opposition.

• Many studies and reviews discuss finding various aspects of Neuroinflammation in ME/CFS.[23] The study above, finding No Signs of Neuroinflammation, studied only 9 persons using outdated diagnostic criteria. Using operationalized criteria, as noted in the refererence (they were not specific), they likely would have admitted some patients that had major depression, casting doubt on it's accuracy.[24]
• While Epstein Barr Virus is not the cause of most cases of ME/CFS, as once thought, it directly precedes a significant number of cases. "about one in ten people who become infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti will develop a set of symptoms that meet the criteria for ME/CFS."[25]
• Regardless that the IOM ME/CFS report was "concerned that the term 'encephalomyelitis' is not well supported", they used the term ME/CFS and stated, "the committee has proposed that the name “chronic fatigue syndrome” no longer be used.[26]

I would be OK with ME/CFS as the title also. Ward20 (talk) 11:37, 17 April 2023 (UTC)

• Support* because CDC and UK NHS both use this term, and both previously used the term CFS only or CFS/ME. Seems that recent in the last 5-10 years is also stating Myalgic Encephalomyelitis instead. Best to change with the times. - Amousey (they/them pronouns) (talk) 17:17, 17 April 2023 (UTC)

@ScienceFlyer@Roxy the dog@Randy Kryn, I would also be OK with the abbreviation “ME/CFS” as opposed to the full words spelled out. The concision criterion would favor this term. Also it would not specify in the title what “ME” stands for. Is this an acceptable compromise to those who object to Encephalomyelitis as being inaccurate? JustinReilly (talk) 07:28, 19 April 2023 (UTC)

Because of an oppose comment or two that objected without seeming to have read the prior comments, I checked the Wikipedia:Fringe theories/Noticeboard

(https://en.m.wikipedia.org/wiki/Wikipedia:Fringe_theories/Noticeboard),

and indeed the instant move request was posted there. The proposed article title “ME/CFS” doesn’t seem to me to be a “fringe theory.” See below. What’s the rationale for listing it here if not simply to alert people that don’t like aspects of mainstream science that were previously minority views (eg the term ME/CFS) to come and pile on “object votes”? And regardless of the intent, this seems to be the effect, and I think this should be taken into account when weighting “votes.”

Can anyone who posted this topic to other noticeboards, etc., pls tell us to which ones? I want to get an idea of where ppl are “coming from” to this discussion. Thanks.

“Wikipedia:Fringe theories

“The governing policies regarding fringe theories are the three core content policies, Neutral point of view, No original research, and Verifiability. Jointly these say that articles should not contain any novel analysis or synthesis, that material likely to be challenged needs a reliable source, and that all majority and significant-minority views published in reliable sources should be represented fairly and proportionately. Should any inconsistency arise between this guideline and the content policies, the policies take precedence.”

https://en.m.wikipedia.org/wiki/Wikipedia:Fringe_theories JustinReilly (talk) 13:42, 19 April 2023 (UTC)

You are overthinking this. Nothing at all wrong with discussion at FTN. - Roxy the dog 14:28, 19 April 2023 (UTC)

Checking the talk pages of the five projects listed at the top; WP:MED and Wikipedia:WikiProject Alternative medicine have had notices posted, the others have not. Little pob (talk) 14:40, 19 April 2023 (UTC)

CFS appears on the fringe theories noticeboard because it includes Wikipedia:WikiProject_Skepticism/Article_alerts, which is written by a bot, and our article is included because Wikiproject skepticism considers our article relevant. The Quirky Kitty (talk) 15:27, 19 April 2023 (UTC)

• Oppose. The current is commonly recognised, and the proposed is ugly jargon that needs explanation. —SmokeyJoe (talk) 01:24, 22 April 2023 (UTC)

  In your opinion, would ME/CFS be better? The Quirky Kitty (talk) 17:48, 22 April 2023 (UTC)

  No. These are not standard abbreviations that don’t require definition on first use. If used in the title without definition in the title, it would be jargon. SmokeyJoe (talk) 01:49, 25 April 2023 (UTC)

• Oppose. Current title is still the WP:COMMONNAME, and options including ME or Myalgic encephalomyelitis imply inflammation that isn't supported by evidence. - MrOllie (talk) 19:20, 22 April 2023 (UTC)

  Since there is a specific guideline for medical article titles, WP:MEDTITLE (Wikipedia:Manual of Style/Medicine-related articles#Article Titles), it should be referred to first.

  The guideline says:

  the article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name)… Create redirects to the article to help those searching with alternative names. For example, heart attack redirects to myocardial infarction...The article title is subject to the same sourcing standards as the article content. Where there is a dispute over a name, editors should cite recognised authorities and organisations rather than conduct original research.[4][footnote 4]:Examples of original research include counting Google or PubMed results, comparing the size or relevance of the varieties of English, and quoting from personal or professional experience.

  — Wikipedia:Manual of Style/Medicine-related articles#Article Titles

  “editors should cite recognised authorities and organisations,” above, links to:

  “Medical and scientific organizations

  “WP:MEDORG”

  which cites 5 examples, below, all of which use “ME/CFS,” as the primary term for the illness:

  “the National Academy of Medicine, the British National Health Service, the U.S. National Institutes of Health and Centers for Disease Control and Prevention, and the World Health Organization.”

  After reviewing WP:MEDTITLE (Wikipedia:Manual of Style/Medicine-related articles#Article Titles), we can then refer to WP:Article titles including WP:COMMONNAME (Wikipedia:Article titles#Use commonly recognizable names).

  It seems obvious to me that the guidelines in WP:Article titles should be interpreted in light of the more specific guidelines in WP:MEDTITLE. And that they should be read together in a way that both are followed to the greatest extent possible, but that if there are any direct conflicts, the more specific WP:MEDTITLE should be followed.

  I believe the general principles in WP:Article titles of (1) precision, (2) concision and (3) using commonly recognizable names taken in light of the more specific guidelines in WP:MEDTITLE determine that the abbreviated term “ME/CFS” (as opposed to the fully spelled out “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”) should be the title. Besides being in common use and being concise, it at least partly addresses the objection to “encephalomyelitis” as ME can stand for “myalgic

  encephalopathy,” and this can be stated under the nomenclature section. JustinReilly (talk) 07:22, 24 April 2023 (UTC)

  Here are more complete excerpts of the relevant parts of the guidelines. IMO, that “ME/CFS” is the only appropriate candidate for the title is very clear simply from reviewing them:

  WP:MEDTITLE Wikipedia:Manual of Style/Medicine-related articles … This page in a nutshell:• Article titles use the scientific or medical name …Article titles The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name)[1]… The alternative names may be specified in the lead.[3] Create redirects to the article to help those searching with alternative names. For example, heart attack redirects to myocardial infarction... The article title is subject to the same sourcing standards as the article content. Where there is a dispute over a name, editors should cite recognised authorities and organisationsrather than conduct original research.[4] [footnote 4]: Examples of original research include counting Google or PubMed results, comparing the size or relevance of the varieties of English, and quoting from personal or professional experience.”

  — Wikipedia:Manual of Style/Medicine-related articles#Article Titles

  “editors should cite recognised authorities and organisations,” above, links to:

  Medical and scientific organizations WP:MEDORG Guidelines and position statements provided by major medical and scientific organizations are important on Wikipedia because they present recommendations and opinions that many caregivers rely upon (or may even be legally obliged to follow). Statements and information from reputable major medical and scientific bodies may be valuable encyclopedic sources. These bodies include the U.S. National Academies(including the National Academy of Medicine and the National Academy of Sciences), the British National Health Service, the U.S. National Institutes of Health and Centers for Disease Control and Prevention, and the World Health Organization. The reliability of these sources ranges from formal scientific reports, which can be the equal of the best reviews published in medical journals, through public guides and service announcements, which have the advantage of being freely readable, but are generally less authoritative than the underlying medical literature. Guidelines by major medical and scientific organizations sometimes clash with one another (for example, the World Health Organization and American Heart Association on salt intake), which should be resolved in accordance with WP:WEIGHT. Guidelines do not always correspond to best evidence, but instead of omitting them, reference the scientific literature and explain how it may differ from the guidelines. Remember to avoid WP:original research by only using the best possible sources, and avoid weasel words and phrases by tying together separate statements with "however", "this is not supported by", etc. Guidelines are important on Wikipedia because they present recommended practices and positions of major authorities. * Health technology assessments or HTAs are the gold standard when it comes to assessing evidence quality. They take into account various aspects such as effect, risks, economic costs, and ethical concerns of a treatment…

  — Wikipedia:Identifying reliable sources (medicine)#Medical and scientific organizations

  [there may be unindicated elisions (…) below]

  Wikipedia:Article titles Topic-specific naming conventions for article titles Science; Medicine [see WP:MEDTITLE (Wikipedia:Manual of Style/Medicine-related articles), above] Generally, article titles are based on what the subject is called in reliable sources. When this offers multiple possibilities, editors choose among them by considering several principles: the ideal article title precisely identifies the subject; it is short, natural, distinguishable and recognizable; and resembles titles for similar articles. This page explains in detail the considerations, or naming conventions, on which choices of article titles are based… It is supplemented by other more specific guidelines (see the box to the right), which should be interpreted in conjunction with other policies, particularly the three core content policies: Verifiability, No original research, and Neutral point of view. Use commonly recognizable names WP:COMMONNAME In Wikipedia, an article title is a natural-language word or expression that indicates the subject of the article; Wikipedia does not necessarily use the subject's "official" name as an article title; it generally prefers the name that is most commonly used (as determined by its prevalence in a significant majority of independent, reliable English-language sources) as such names will usually best fit the five criteria listed above.[e] When there is no single, obvious name that is demonstrably the most frequently used for the topic by these sources, editors should reach a consensus as to which title is best by considering these criteria directly. For cases where usage differs among English-speaking countries, see also National varieties of English, below. Editors should also consider all five of the criteria for article titles outlined above. Ambiguous[f] or inaccurate names for the article subject, as determined in reliable sources, are often avoided even though they may be more frequently used by reliable sources. Neutrality is also considered; see § Neutrality in article titles, below. Article titles should be neither vulgar (unless unavoidable) nor pedantic. When there are multiple names for a subject, all of which are fairly common, and the most common has problems, it is perfectly reasonable to choose one of the others. Although official, scientific, birth, original, or trademarked names are often used for article titles, the term or name most typically used in reliable sources is generally preferred. Other encyclopedias are among the sources that may be helpful in deciding what titles are in an encyclopedic register, as well as what names are most frequently used. The following are examples of the application of the concept of commonly used names in support of recognizability: … Scientific and technical topics… Polio (not: poliomyelitis); Spanish flu (not: 1918 influenza pandemic) In determining which of several alternative names is most frequently used, it is useful to observe the usage of major international organizations, major English-language media outlets, quality encyclopedias, geographic name servers, major scientific bodies, and notable scientific journals. A search engine may help to collect this data; when using a search engine, restrict the results to pages written in English, and exclude the word "Wikipedia". When using Google, generally a search of Google Books and News Archive should be defaulted to before a web search, as they concentrate reliable sources (exclude works from Books, LLC when searching Google Books[g]). Search engine results are subject to certain biases and technical limitations; for detailed advice on the use of search engines and the interpretation of their results, see Wikipedia:Search engine test.

  — Wikipedia:Article titles

  JustinReilly (talk) 08:35, 24 April 2023 (UTC)

• Support. Isn't it supposed to be what the sources say? The acronym seems like it makes sense, on that basis. NeurastheniaMilkshake (talk) 18:43, 27 April 2023 (UTC)

  I'm an Incline Village survivor, original prototype for the Holmes 1988 Chronic Fatigue Syndrome.

  The Center for Disease Control was frightened into convening "The Holmes committee" in 1987 to discuss what to do about the evidence generated by CDC epidemiologist Dr Gary Holmes investigation into the 1985 Lake Tahoe Mystery Illness. The Holmes study encountered evidence such as Unidentified Bright Objects on Dr Paul Cheney's MRI scans. Loss of B cells confirmed by new cell flow cytometry. An aberrant immune response to Epstein Barr virus revealed by the brand new Nichols EBV serology test, a distinctly unusual CD4/CD8 ratio not seen in any known disease. Activation of the 2-5a Oligoadenylate Synthetase pathway. Low Natural Killer Cell function in a special study by Drs. Cheney-Peterson-Caligiuri-Komaroff. And a newly discovered virus "HBLV" that was found in Tahoe Mystery Illness patients by the Gallo lab.

  All of these tests were new in 1985 and were unavailable to have been previously used.

  Since none of these immunological findings were known in the British and Canadian "Myalgic Encephalomyelitis" it would be improper to imply that it was by using that name. The Holmes committee's Dr Carlos Lopez, who convened this committee announced its intent to create a provisional new syndrome "the chronic fatigue syndrome" for purposes of study and comparison against ME to determine whether this evidence existed in ME or if the Lake Tahoe outbreak was an entirely new syndrome.

  This proposed study was never done. Doctors simply accepted the Holmes CFS definition at face value, and assumed it was coined for no particular reason and for no evidence.

  All this information is in the public domain, so it makes no sense that researchers are unable to locate this evidence and see that ME and CFS cannot "scientifically" be considered "identical" without performing the prerequisite comparison outlined by the CDC at the time the CFS syndrome was in the planning and collation stage. EriktheMoldWarrior (talk) 19:13, 30 April 2023 (UTC)

• Comment: IMO, individual editors’ personal views that scientific authorities should have come to a different conclusion than the one they did is not a valid basis to decide how to present information on Wikipedia. We defer to (indeed depend on) reliable sources. Innisfree987 (talk) 19:50, 30 April 2023 (UTC)

  Agreed, arguments that ME/CFS isn't the appropriate name because encephalomyelitis is inaccurate, or because the authors were supposedly lobbied by patients, are not useful. The term CFS has long been associated with people who believe ME/CFS is psychological, but I haven't emphasized the dark history of the term as an argument against it, but stuck to the sources. The Quirky Kitty (talk) 19:12, 2 May 2023 (UTC)

  The original source for "Chronic Fatigue Syndrome" is Dr Gary Holmes. The CDC epidemiologist who authored the original 1988 Holmes Chronic Fatigue Syndrome definition.

  The basis for the CDC's new syndrome was an investigation of 134 patients at Lake Tahoe.

  Dr Holmes accorded legitimacy to the EBV serology test and immune abnormalities to the extent that his official definition lists psychiatric disease as a "condition which must be excluded"

  This outbreak and evidence was not identical to "The Royal Free Disease - Myalgic Encephalomyelitis so he said the Lake Tahoe outbreak was "similar" but not the same.

  A Cluster of Patients With a Chronic Mononucleosis-like Syndrome: Is Epstein-Barr Virus the Cause? | JAMA | JAMA Network 2600:6C4E:400:4148:1CB9:3DF6:3DE:A798 (talk) 22:08, 2 May 2023 (UTC)

• Oppose, I echo and support ScienceFlyer's explanation. Crossroads ^-talk- 01:08, 3 May 2023 (UTC)

  I reread @ScienceFlyer’s comment then read the study he cites. Not only is it a primary source, it includes only 9 “CFS” patients. Wakefield’s case series paper had 12 autism patients and explicitly stated that they did not find an association between autism and MMR vaccination because the study was just a teeny case series and yet he is cast as the devil for daring to publish on such a small cohort.

  Also, ScienceFlyer’s paper discusses another paper that found the opposite. And cites two other papers that also found Neuroinflammation in “CFS.” I didn’t see any mention in the cited paper of any other papers that failed to find Neuroinflammation in “CFS.”

  You’re essentially arguing the name of the disease should be based substantially on a study of one test in 9 patients? JustinReilly (talk) 09:52, 3 May 2023 (UTC)

• Support per The Quirky Kitty. Disclaimer: I have ME/CFS and as such am an involved party here. Skarmory (talk • contribs) 05:08, 8 May 2023 (UTC)

Authority over Chronic Fatigue Syndrome

Who is the "authority" over Chronic Fatigue Syndrome?

Doctors or "researchers" who were not associated with the inception of this syndrome? Who can be seen to know nothing about CFS by comparing their erroneous opinions against the documents of the 1980's. Can the documents be used to over-ride them? EriktheMoldWarrior (talk) 20:48, 6 May 2023 (UTC)

You can read about what Wikipedia uses as authoritative medical sources at WP:MEDRS and WP:MEDREF. Briefly: “Biomedical information must be based on reliable, third-party published secondary sources, and must accurately reflect current knowledge.” Examples of secondary sources include review articles and consensus statements from experts. So no, we do not use old primary sources to critique current secondary sources; that would be considered original research which is barred on Wikipedia. The route would be to take it up with the authorities you disagree with, and if they revise their view, then bring the new secondary sources to WP. Innisfree987 (talk) 21:21, 6 May 2023 (UTC)