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Featured articleMyalgic encephalomyelitis/chronic fatigue syndrome is a featured article; it (or a previous version of it) has been identified as one of the best articles produced by the Wikipedia community. Even so, if you can update or improve it, please do so.
Main Page trophyThis article appeared on Wikipedia's Main Page as Today's featured article on November 25, 2024.
Did You Know Article milestones
DateProcessResult
March 9, 2024Good article nomineeListed
July 25, 2024Peer reviewReviewed
August 25, 2024Featured article candidatePromoted
Did You Know A fact from this article appeared on Wikipedia's Main Page in the "Did you know?" column on April 12, 2024.
The text of the entry was: Did you know ... that some people with severe myalgic encephalomyelitis/chronic fatigue syndrome can lose the ability to speak?
Current status: Featured article

Did you know nomination

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

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

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

General: Article is new enough and long enough
Policy: Article is sourced, neutral, and free of copyright problems
Hook: Hook has been verified by provided inline citation
QPQ: Done.

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

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

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

TonyTheTiger, according to https://qpqtool.toolforge.org/qpq/Femke, Femke has made nine DYK nominations, so she does not need an extra QPQ. TSventon (talk) 14:11, 17 March 2024 (UTC)[reply]
Double QPQ is not required. This nomination is good to go. NW1223<Howl at me•My hunts> 18:12, 17 March 2024 (UTC)[reply]
Yes, the QPQ check tool to the right counts only 9. I don't really trust the QPQ tool that much because it barely counts 40% of my own nominations. But If the nominator feels that they have done less than 20 noms this can go forward or they can do the double. This case is on the honor system.-TonyTheTiger (T / C / WP:FOUR / WP:CHICAGO / WP:WAWARD) 18:48, 17 March 2024 (UTC)[reply]
I don't see an obvious one missing on the list, but will help with the backlog when I've got some time to spare. —Femke 🐦 (talk) 19:03, 17 March 2024 (UTC)[reply]
The tool gives a complete list of the nominations made by Femke since she started editing in 2014. It does not pick up nominations made before 2011, but that is not relevant here. TSventon (talk) 20:11, 17 March 2024 (UTC)[reply]

Reference for duration of PEM

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Currently, the two sentences about PEM potentially lasting for months cite reference 10, a German document. I can't read German, but I translated a paragraph that I think it's referring to for this claim on page 6, and it just cites the IOM report (reference 1 below). So unless there is more relevant information in this German document about this claim, I think the reference should be changed to the IOM report.

The sentences are "This "crash" can last from hours or days to several months." and "PEM can last hours, days, weeks, or months."

1. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

10. Myalgische Enzephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Aktueller Kenntnisstand


Also, this is immediately before the second sentence without an additional citation, so I assume it is also in the German document: "but [PEM] can also follow immediately after."

So if the reference above is changed for the second sentence, we'd need to ensure this sentence is still cited correctly. Dimpizzy (talk) 16:45, 9 February 2025 (UTC)[reply]

As the IOM report edges on 10 years, and the iQWiG report is only 2 years, that is the one preferred for WP:MEDRS reasons. The reason we use the more recent citations, even when they cite older work, is that a newer source makes clear that this is still accepted knowledge.
You're correct that all text preceding a citation should be covered by that citation, which can be more than one sentence. —Femke 🐦 (talk) 20:29, 9 February 2025 (UTC)[reply]
That makes sense, thanks for pointing me to that policy. Dimpizzy (talk) 20:33, 9 February 2025 (UTC)[reply]
@Femke Would it maybe be better to use this review which is also from 2023 and also cites the IOM report, because it is in English, considering this is an English Wikipedia page? Or is the iQWiG a more reputable source?
"The US Committee on the Diagnostic Criteria for ME/CFS describes PEM as having an immediate onset or occurring within 30 h, but it is outlined that PEM may also develop hours or days after the trigger has ceased (Locher and IOM, 2015). Moreover, the committee describes an unpredictable duration of PEM as it may last for hours, days, weeks, and even months. In accord, a survey demonstrated a large variability in reported onset and duration of PEM, and most of the respondents reported that they sometimes experienced an immediate onset and sometimes a delayed onset (Holtzman et al., 2019). The delay ranged from 1 h to a week, and the duration could last from 1 day to several months. Similar results have been reported by others (Chu et al., 2018; Stussman et al., 2020). Thus, the onset and duration of PEM have no definite pattern and seem to vary both within and between patients."
  1. Vøllestad, N. K., & Mengshoel, A. M. (2023). Post-exertional malaise in daily life and experimental exercise models in patients with myalgic encephalomyelitis/chronic fatigue syndrome. Frontiers in physiology, 14, 1257557. https://doi.org/10.3389/fphys.2023.1257557
The reason I'm asking is because this is the second time I've wanted to look at the evidence for a claim that came from this report (immediate PEM before, and months long duration this time), and I open an enormous PDF in a language I don't understand, and have no idea which part to try to translate to find the relevant details.
Dimpizzy (talk) 03:29, 10 February 2025 (UTC)[reply]
IQWiG is sort of the German NICE, so a top source. We typically avoid Frontiers Media journals, as they don't have a good reputation for fact checking. The best way to translate I've found is to copy-paste in a large language model like ChatGPT. If you copy-paste into DeepL, it struggles with the PDF formatting (the random enters).
The official guideline on using non-English sources is that it's fine as long as it's higher quality than equivalent English-language sourcing. I've used this on purpose, as I saw some pushback against NICE's 2021 clinical guidelines and wanted to make sure NICE wasn't an "oddity" in how they describe GET/CBT for instance. —Femke 🐦 (talk) 08:31, 10 February 2025 (UTC)[reply]
Okay, again makes sense, thank you! Dimpizzy (talk) 12:39, 10 February 2025 (UTC)[reply]
Guidelines are typically written by ad-hoc committees and therefore their quality varies a lot, even within one institute. They are also semi-political productions and often heavily influenced by pressure groups. Guidelines are not reviews, which are (if to be taken seriously) written by top experts in the field, with no outside influence. The NICE guideline for ME/CFS largely presents the view of Charles Shepherd, who is neither researcher nor doctor, but runs the UK ME Association (MEA). Input from both ME experts and CFS experts got mostly ignored. Consequently, there was and remains heavy criticism and it has only been minimally implemented. So it is not a strong source. Emagame (talk) 09:55, 22 May 2025 (UTC)[reply]
User:Emagame, please stop presenting opinions without sources to back it up. You're WP:Bludgeoning this talk page. —Femke 🐦 (talk) 09:59, 22 May 2025 (UTC)[reply]
There would be no 'bludgeoning' if there weren't so many uninformed comments. What I say about guidelines is common knowledge, but you can find it in publications on instruments like AGREE. Emagame (talk) 10:16, 22 May 2025 (UTC)[reply]
With regard to the NICE guideline see, for instance, White e.a. (2023), "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis", Journal of Neurology, Neurosurgery and Pyschiatry. Emagame (talk) 10:26, 22 May 2025 (UTC)[reply]

MCAS co-occurs with CFS?

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@Femke Can you please provide the data supporting the statement that MCAS co-occurs with CFS? And that it interacts with and worsens it? I don't see it in any reference. There is abundant misinformation about MCAS online, and I hope this article is not feeding it. Thank you. ScienceFlyer (talk) 16:53, 4 April 2025 (UTC)[reply]

I don't know about co-occurance with the old CFS, but the source for co-occurance with ME/CFS is as given. To quote "The CCC and ICC recognise numerous comorbidities that are often diagnosed with ME/CFS. These include (..) Immunological disorders such as MCAS, chronic infection. —Femke 🐦 (talk) 17:07, 4 April 2025 (UTC)[reply]
@ScienceFlyer, I’m confused about what question you’d like answered: the claim is clearly sourced in the entry to the BMJ Best Practice review, page 19, which Femke quoted in reply to you. Innisfree987 (talk) 22:11, 4 April 2025 (UTC)[reply]
I'm asking for the data supporting the three unsubstantiated claims that MCAS co-occurs with CFS, interacts with it, and worsens it. Why is MCAS (a rare condition) even mentioned in this article? And I cannot read BMJ Best Practice because it is paywalled. There must be a better source, if it exists at all.
Interestingly, there is data (source 1, source 2) and expert consensus that people with unexplained symptoms (including chronic fatigue) are being misdiagnosed with MCAS.
Let's improve the article by removing the three claims about MCAS, or by citing a better source. Thank you.ScienceFlyer (talk) 23:02, 4 April 2025 (UTC)[reply]
That sentence is also cited to a high-quality review (Mayo Clinic Proceedings). The relevant guidance there advises, under “Management Approach”:
“Treat Comorbidities. Treatment of comorbidities can positively affect a patient’s quality of life and severity of symptoms. Common comorbidities (Supplemental Table 3) include fibromyalgia, mast cell activation syndrome, postural orthostatic tachycardia syndrome, Ehlers-Danlos syndrome, sleep apnea, irritable bowel syndrome, and secondary depression/anxiety.”
Innisfree987 (talk) 23:50, 4 April 2025 (UTC)[reply]
The Bateman-2021 review has a number of fringe authors, and frankly I don't think it's a good idea to use it as a source. The Bateman-2021 review references a handout having many of the same authors, and in both references, it places "multiple chemical sensitivities" directly adjacent to it. Multiple chemical sensitivity is not a real condition. The claim in the Bateman-2021 supplement stating that MCAS and MCS are "Conditions Which Commonly Co-exist with ME/CFS" is simply false.
To summarize: There is no data supporting the three unsubstantiated claims that MCAS co-occurs with CFS, interacts with it, and worsens it. And the only references are from people who legitimize a pseudoscientific diagnosis and make false claims. And of course anyone who is a proponent of non-specific (and discredited) diagnostic criteria for MCAS is not reliable as well. ScienceFlyer (talk) 00:12, 5 April 2025 (UTC)[reply]
It sounds to me like we have BMJ and Mayo Clinic Proceedings that regard these as legitimate findings against a WP editor’s personal view that they’re fringe. Innisfree987 (talk) 00:18, 5 April 2025 (UTC)[reply]
Again, no data to support the three claims. ScienceFlyer (talk) 00:24, 5 April 2025 (UTC)[reply]
? We have two highly regarded review articles verifying it. Innisfree987 (talk) 00:27, 5 April 2025 (UTC)[reply]
Reviews don't verify things. They can have sources that verify things, but in this case those are lacking. There are two more fundamental errors here. First, CFS is not a morbidity, it is a research diagnosis (Fukuda 19994, IOM 2015). Therefore, there are no comorbidities. More importantly, if a patient has MCAS, then they don't satisfy CFS criteria (Fukuda 1994) and CFS was simply the misdiagnosis that it always is (Hyde 2020). Second, findings regarding CFS can't be translated as findings for ME/CFS, as the latter is a specific subset. Emagame (talk) 08:53, 22 May 2025 (UTC)[reply]
While MCAS is rare, I think that is why it is mentioned. It's odd that two rare (ME isn't rare, but a lot of research has been done on the assumption that it is) coexist frequently, especially if we don't have a solid explanation for this. IntentionallyDense (Contribs) 03:11, 5 April 2025 (UTC)[reply]
ScienceFlyer, your asserting without support that folks are fringe, and using the outdated term for ME/CFS, which was associated with a more "vague" symptom description and might be perceived as belittling. Can you use the standard term?
You're asking us to delve into non-MEDRS primary sourcing. Normally, that practice is a bit frowned upon by some, as we should trust MEDRS sourcing. The first primary source I found however does support the claim, but only for post-covid ME/CFS. This source came out after the other two I believe, so it's not the origin of the claim. —Femke 🐦 (talk) 06:32, 5 April 2025 (UTC)[reply]
Femke you may correct me on this, but assuming that the MCAS statement was in the article at the time of the FA review, I would find it hard to believe that no one would have questioned this then if there was anything to question here. IntentionallyDense (Contribs) 20:02, 5 April 2025 (UTC)[reply]
Yes, this sentence was in the article at the time of the FA review. Of course, a FA review doesn't capture everything, but it does imply some form of consensus. —Femke 🐦 (talk) 08:41, 6 April 2025 (UTC)[reply]
While yes, FA review doesn't always catch every issue, people are pretty strict with MEDRS at a FA level and I'd be surprised that no one would have questioned things if there was a fringe claim with fringe sources. IntentionallyDense (Contribs) 17:58, 6 April 2025 (UTC)[reply]
Note that calling people fringe without evidence comes close to a BLP vio. —Femke 🐦 (talk) 06:33, 5 April 2025 (UTC)[reply]
There is no research linking ME to MCAS, there is research saying that some CFS patients may rather have MCAS. By the way, ME was rare until around 1980. Today it is still uncommon, as opposed to the multitude of people satisfying CFS or ME/CFS criteria. Emagame (talk) 08:59, 22 May 2025 (UTC)[reply]

NPOV?

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Surely I cant be the only one who feels like this article is profoundly not neutral in that it feels argumentative and written from a position of a very biased CFS/ME patient/parent? Like I'm a doc and I do believe CFS could sometimes be caused by actual non-psychiatric illnesses but when the article about it feels this "ideological" it just really doesnt help the CFS sufferers' case! 5.44.170.181 (talk) 05:48, 25 April 2025 (UTC)[reply]

There's been quite a dramatic change in how medical authorities see the disesase in the last 10-15 years. So, as somebody who may have learned about ME/CFS in medical school some time ago, this may seem non-neutral, but I do believe it's a good reflection of the highest-quality sources out there. The article relies strongly on NICE, IOM, IQWIG and similar sources. Is there anything in particular you feel is not neutral? —Femke 🐦 (talk) 07:12, 25 April 2025 (UTC)[reply]
The point is quite vaild and should not be answered with an arguemtum ad personam (as somebody who may have learned about ME/CFS in medical school some time ago). 2001:700:5:9:0:0:0:6 (talk) 23:15, 14 May 2025 (UTC)[reply]
It wasn’t argued ad personam: the answer, as given, is that the article follows leading medical sources. Femke just also mentioned a reason someone might not be aware of those sources, but that’s not the reason the article is in its current form. Wikipedia is based on expert sources rather than editor opinion. Innisfree987 (talk) 01:59, 15 May 2025 (UTC)[reply]
For example, your change here replaced two CDC sources with a version based on from a low-cited account and another review which doesn’t make the main claim attributed to it. I have restored the version for which we have more authoritative sources. Innisfree987 (talk) 02:27, 15 May 2025 (UTC)[reply]
I agree to this. It seems biased to me, too. I have been to med school more recently. The controversy of psychiatric vs. non-psychiatric causes and possible overlap is absent in the article. This should not be the case, because of the absence of hard evidence for an organic cause: while certain studies report markers of neuroinflammation, like subtle changes in cytokine patterns, microglial activation on PET imaging, or altered brain metabolites, these findings often come from studies that are small in scale, ofetn not ideally matched for differences in physical activity (i.e., deconditioning), and most have not been replicated in large, independent cohorts. 2001:700:5:9:0:0:0:6 (talk) 23:08, 14 May 2025 (UTC)[reply]
The controversy is not absent; it is described in the section called controversy. Innisfree987 (talk) 02:34, 15 May 2025 (UTC)[reply]
The introduction of the pathophysiology section could be clearer in indicating that we're not quite sure what causes it. Neuro-immune is one option, but there are a few other possibilities, around mitochondria for instance with the recent WASF3 finding. Shall I craft something in that direction? In the research section we talk about the small sample sizes, but that tone isn't quite reflected in the first sentences of the pathophysiology section. —Femke 🐦 (talk) 06:51, 15 May 2025 (UTC)[reply]
To me those sentences feel pretty cautious in terms of not overstating the evidence but if you have another idea for how to improve them, sure of course we can discuss! Innisfree987 (talk) 21:52, 15 May 2025 (UTC)[reply]
—Femke 🐦's point about uncertainty of Pathophysiology is supported by 2021 Mayo review text[1] "While the exact etiology of ME/CFS is uncertain". I believe similar wording as a precursor to the wording in that section would be an improvement.
I don't agree with the two IP users' position the article is not neutral, as the best and latest WP:MEDRS sources have been researched, used and extensively discussed on talk. That said, the history of how any why the illness had been previously viewed is extensively long and convoluted, and not thoroughly covered, nor should it be for the featured article. It would bog down the article with excessive length, detail and controversy. Better for a history book IMO. Ward20 (talk) 00:34, 18 May 2025 (UTC)[reply]
I guess to me it’s a question of emphasis? I don’t disagree that it’s unknown but that’s already stated in the lead, the infobox and twice elsewhere in the body, so just a question of whether it needs further repeating. Innisfree987 (talk) 03:26, 19 May 2025 (UTC)[reply]
ME/CFS is a list of symptoms. The list varies, for instance NICE and IOM (SEID) are not the same. Therefore, different studies are often incomparable. But basically it is a subset of CFS symptom lists, requiring not just chronic fatigue at its core but also malaise upon exertion. As a list of symptoms, it can have any cause, even a non-medical one. Most people satisfying the criteria will have a disease or another problem that remains undetected by sending them home with this diagnosis. Cheers, Emagame (talk) 11:21, 19 May 2025 (UTC)[reply]
I'm guilty of not quite being precise on terminology and I suspect that might be the problem. You are correct at the illness cause is probably adequately discounted in the article as being unknown. When talking about Pathophysiology, the cause is only one part, and one definition that I saw[2] was "physiological processes that cause, result from, or are otherwise associated with a disease". The Pathophysiology section is pretty good, but perhaps a disclaimer would be warranted here too? Ward20 (talk) 23:48, 19 May 2025 (UTC)[reply]
Oh I see what you mean. Sure if you all think so, I wouldn’t object. Innisfree987 (talk) 00:00, 20 May 2025 (UTC)[reply]
This discussion is not productive anymore
The following discussion has been closed. Please do not modify it.
The pathophysiology section is very awkward. It conflates some aspects of ME (while leaving out other aspects) with some observations about CFS or ME/CFS. Neither CFS nor its subset ME/CFS has a pathophysiology as unlike ME they are not diseases. Emagame (talk) 00:06, 20 May 2025 (UTC)[reply]
Going over the article, I would say that most of it is just terribly wrong. This seems the result of mixing a number of different, unrelated diagnoses. Emagame (talk) 11:53, 19 May 2025 (UTC)[reply]
User:Emagame: Do you have any example of errors, based on review articles / clinical guidelines published in the last 5 years? On Wikipedia, we should summarise these WP:MEDRS sources, rather than giving our own opinions. As in: I've heard various ME/CFS researchers say in talks that ME/CFS is most likely a set of overlapping or even distinct diseases, but cannot find this so explicitly in sources we're allowed to cite on Wikipedia. —Femke 🐦 (talk) 12:38, 19 May 2025 (UTC)[reply]
For instance, the article says that ME/CFS is in the ICD. It isn't, and there are no plans to add it either. Emagame (talk) 17:13, 19 May 2025 (UTC)[reply]
The template also contains many errors. It doesn't even mention malaise. PVFS is not synonymous to ME/CFS. Etc. The NIH is not a reliable source and shouldn't be used. Emagame (talk) 17:34, 19 May 2025 (UTC)[reply]
The article correctly states that CFS and ME are both listed under post-viral fatigue syndrome (the link now works!). It's true that they're not synonyms, and our article does not make that claim either. The next sentence explains the ambiguity.
If you refer to the infobox ('template'), we've linked PEM from its description (worsening of symptoms after activity), as PEM is quite jargonny and a bit vague. The first paragraph does mention and explain the jargon. —Femke 🐦 (talk) 18:27, 19 May 2025 (UTC)[reply]
Worsening of symptoms upon exertion is called PESE. It is not the same as PEM, where symptoms pop up that weren't there before the exertion. Emagame (talk) 23:04, 19 May 2025 (UTC)[reply]
ME and CFS are both in the ICD, but ME/CFS is not. CFS and ME are medically unrelated and should each have their own article. I'd rather not have an article about ME/CFS since it is not a validated diagnosis (source: NICE), there is fundamental disagreement about its definition or whether such an entity even exists, the name is misleading, and there is virtually no research of any value. A simple mention in the PAIS article would IMHO suffice. Emagame (talk) 23:10, 19 May 2025 (UTC)[reply]
For reference, here’s the discussion that found a consensus to title this page Myalgic encephalomyelitis/chronic fatigue syndrome. Innisfree987 (talk) 23:48, 19 May 2025 (UTC)[reply]
Thanks. That is a very strange discussion, like changing the title of 'Wheel' into 'Bicycle' while only considering if it should be 'Bike' or 'Bicycle'. But given that ME/CFS is now the title of the page, it should be about ME/CFS, and not about ME or CFS. Emagame (talk) 23:56, 19 May 2025 (UTC)[reply]
The term ME/CFS was introduced by the UK's ME Association in 1992, as far as I can tell (this is in the Kew files). However, this organization (run by Shepherd) changed ME to mean myalgic encephalopathy, i.e. brain issues of unknown cause. Emagame (talk) 23:19, 19 May 2025 (UTC)[reply]
@ Emagame Yes, your sources and opinions have their points, but Wikipedia is edited by rules that might not be apparent, especially medical articles, since they're so important. Please read Wikipedia's Core content policies and Wikipedia's Identifying reliable sources (medicine). If articles were edited to non-qualified sources, they would be changing minute by minute and talk pages would have endless arguments. That doesn't work for Wikipedia, so editing here is somewhat more complicated than first glance. Thanks. Ward20 (talk) 00:14, 20 May 2025 (UTC)[reply]
Reliability is irrelevant when the content doesn't pertain to the topic. You can't claim that a car is round because there is a reliable source that says wheels are. Emagame (talk) 00:51, 20 May 2025 (UTC)[reply]
I have pointed out several glaring mistakes. I am now waiting to see what you do with that information, before I continue. Emagame (talk) 01:00, 20 May 2025 (UTC)[reply]
It's up to the editor that wants the POV in the article to supply the reliable source supporting the POV. Ward20 (talk) 01:13, 20 May 2025 (UTC)[reply]
From your dismissive attitude I gather that you consider yourself the lead editor of this page? So where are the reliable sources that support your point of view? I, on the other hand, have not even proposed an edit yet. I have also explained why: I don't think an article about ME/CFS has merit. Remove the sources that are not about ME/CFS. There goes most of the text. Then remove the sources that don't say what the article claims they say, and everything that is mere conjecture. You are left with an empty page. Emagame (talk) 01:59, 20 May 2025 (UTC)[reply]
No, there are no lead editors here, just volunteers. See WP:OWN. I gather your main point is, "CFS and ME are medically unrelated". Please start from there, research and submit WP:MEDRS sources that support this. AFASIK, almost every word in this article has recent journal article reviews from reliable sources, researched by editors, that support what's written by footnotes. If you have better sources, you can present them, and I'm sure the editors here will consider them. WP:FAOWN also is pertinent to this article. Ward20 (talk) 02:25, 20 May 2025 (UTC)[reply]
That is not how things work. The onus of providing reliable sources is on the one making the claim. ME, CFS and ME/CFS all have different names and definitions. If the article claims that they are synonymous, it should provide sources that demonstrate this. There are none. Just saying that they are is insufficient. Emagame (talk) 09:41, 20 May 2025 (UTC)[reply]
Meawnhile, the single authority in these matters is the WHO. It has ME and CFS each classified as their own entry, meaning that they are not synonymous. Emagame (talk) 09:44, 20 May 2025 (UTC)[reply]
Providing reliable sources does rely on the person making the claim. Luckily this article is full with tons of reliable sources to back up the claims made. IntentionallyDense (Contribs) 03:52, 21 May 2025 (UTC)[reply]
They don't. Many sources in this article don't contain what is attributed to them. Others are far from reliable, whereas some sources that are reliable (there aren't many to begin with) are missing. Emagame (talk) 10:31, 21 May 2025 (UTC)[reply]
Can you point out examples of unreliable sources or misattributed sources? This is a pretty heavy accusation to make without backing it up. IntentionallyDense (Contribs) 04:50, 22 May 2025 (UTC)[reply]
I already have, but I'll add more later. Emagame (talk) 08:16, 22 May 2025 (UTC)[reply]
The IOM report of 2015 confirms that neither CNS inflammation nor myalgia is commonly found in ME/CFS, so ME/CFS is most certainly not ME. Not a single definition of 'ME/CFS' includes CNS inflammation so it would already be weird if nevertheless all these millions had it. Myelitis in particular is uncommon. Emagame (talk) 09:49, 20 May 2025 (UTC)[reply]
The article currently reads, among a multitude of similar errors, that 'the ICC are stricter than Fukuda'. This is false. Neither is a version of the other. There is no fatigue in the ICC. Fatigue is not a symptom of ME. PENE is not PEM: exhaustion isn't malaise. That the ICC select more severe patients is because ME is a severe disease whereas CFS is heterogenous. AIDS also selects more severe patients, and yet it is not a stricter definition of CFS. Emagame (talk) 10:07, 20 May 2025 (UTC)[reply]
The article also says 'ME/CFS often starts after an infection, such as mononucleosis', but the single provided source doesn't support this. Yes, it says so, but it in turn points to a single source that doesn't support it. This happens frequently in sources on ME/CFS. It is a house of cards. Emagame (talk) 11:10, 20 May 2025 (UTC)[reply]
The article cites Mayo proceedings[3] which cites IOM[4] for the material which does support it. Ward20 (talk) 12:49, 20 May 2025 (UTC)[reply]
It doesn't. Emagame (talk) 12:57, 20 May 2025 (UTC)[reply]
IOM[5], "...mononucleosis, defined as a monospot-positive form of the illness. At 6, 12, and 24 months after infection, 13 percent, 7 percent, and 4 percent of adolescents, respectively, met criteria for ME/CFS"... Ward20 (talk) 13:12, 20 May 2025 (UTC)[reply]
Lots of people with depression and many other conditions also satisfy ME/CFS criteria (see Jason 2015). Your quote means that most post-mono people only satisfy the criteria for a relatively short while. In comparison, ME is a lifetime disease. Emagame (talk) 20:47, 20 May 2025 (UTC)[reply]
You're using a lot of older studies, per WP:MEDDATE usually we try to use sources published within the last 5 years. Do you have any recent publications to back these claims up? IntentionallyDense (Contribs) 03:53, 21 May 2025 (UTC)[reply]
Facts don't change just because time passes. Do you have publications with outcomes that contradict these findings? Emagame (talk) 10:24, 21 May 2025 (UTC)[reply]
I'm just going to quote WP:MEDDATE here as it lays things out quite clearly:
"In many topics, a review that was conducted more than five or so years ago will have been superseded by more up-to-date ones, and editors should try to find those newer sources, to determine whether the expert opinion has changed since the older sources were written."
IntentionallyDense (Contribs) 04:52, 22 May 2025 (UTC)[reply]
And in many topics, this might often be correct. The current meaning of ME/CFS didn't even exist until a few years ago, so there are no older reviews. But for other topics this is incorrect and newer sources don't exist or are unreliable. Emagame (talk) 08:15, 22 May 2025 (UTC)[reply]
On what basis are you claiming that the policy is incorrect? What consensus are you working off of? IntentionallyDense (Contribs) 18:43, 22 May 2025 (UTC)[reply]
I have made no such claim. Emagame (talk) 08:18, 23 May 2025 (UTC)[reply]
ME, on the other hand, is the new name that was given in 1955 (Acheson) to a known enteroviral disease, previously called superior polio (Wickman 1905). It has an incubation period of several days, and can be diagnosed immediately, while a diagnosis of CFS can only be made after 6 months. Emagame (talk) 11:15, 20 May 2025 (UTC)[reply]

The ME criteria is defined by International Consensus Criteria (2011).[6] It starts, "...(CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME)..." IE: they are defining the same illness, but ME is a better definition than CFS.

The introduction states, "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS).., and later refers to "patients with ME/CFS". IE: The same illness.

From BMJ Best practice, Myalgic encephalomyelitis (Chronic fatigue syndrome)[7], "...post-exertional malaise (PEM), also known as post-exertional neuroimmune exhaustion (PENE)." IE: The same.

The Who groups ME and CFS under PVFS[8], but makes no other conclusions.

The IOM 2015 report[9] Summary states, "clinicians and researchers developed separate case definitions and diagnostic criteria for ME and CFS, although the terms denote conditions with similar symptoms. The literature analysis conducted in support of this study took into consideration the variability in the definitions used in the studies reviewed. For the purposes of this report, the umbrella term “ME/CFS” is used to refer to both conditions." Essentially ME, CFS, ME/CFS is treated as the same illness as it was not differentiated further, except to recommend a new name “systemic exertion intolerance disease” (SEID). Which was never widely used.

So over the years, new names and definitions were tweaked for the same illness, and in January 2024 a large discussion on talk about the current nomenclature started which user Innisfree987 graciously linked to the discussion. I believe the sources used do support using Myalgic encephalomyelitis/chronic fatigue syndrome as the correct name for the article at this time. It may change in the future, who knows. Ward20 (talk) 12:33, 20 May 2025 (UTC)[reply]

You keep making the same mistake over and over. Reliability is a presumed property. A source stops being reliable when it fails verification, as is frequently the case in this area. In general, you can't just take someone's word for anything. Your sources themselves have to be correctly sourced and it is your job as an editor to check this. Emagame (talk) 12:48, 20 May 2025 (UTC)[reply]
I linked sources that you brought up and they stated the opposite of what you proposed. Ward20 (talk) 12:57, 20 May 2025 (UTC)[reply]
They don't. What I propose is to delete this article. Emagame (talk) 12:58, 20 May 2025 (UTC)[reply]
You are wasting your time and that of the other editors. Perhaps you're confused as to what this site actually is and what it does. It operates as an encyclopedia in a fashion that you seem to either not understand or have some sort of problem with. Now, above, you tried to assert that one cannot make a claim about a car being round because a source deemed reliable according to this site's guidelines may say wheels are round. However, if there were a source deemed reliable that did actually make the (obviously inaccurate) claim that a car is round, then it certainly would qualify at least for consideration to be included in the appropriate article. It doesn't matter that it's wrong. This encyclopedia is designed to present what is verifiable, even if it's at the expense of what's actually true. That's how it works here. Reasonable people may quarrel with the relevant guidelines, but it's a fundamental principle here (apologies for not linking to the guideline at this time). If the New York Times ran an article that claimed the moon was made of green cheese, there could be another guideline that might preempt that it's a reliable source; or it might qualify for inclusion in articles on cheese, or earth's moon, even though it's not true.
Also, this page is not a forum, and yes there's a guideline about that, too. When someone comes on this page & claims that NIH is not a reliable source, that simply does not hold water here. Rest assured, the editors of this page are well-versed in ME, CFS, ME/CFS, the differences, the similarities, the history, and the longstanding predicament, often quite severe, that sufferers of any/some/all find themselves in. You didn't just land on a page where you're the only one who knows from Hyde, Acheson, Jason, Komaroff, Royal Free, Behan, Peterson, Cheney, Iceland, Punta Gorda, LA Hospital 1934, Beards McEvedy and George, etc. You're also not incapable of getting something wrong yourself--above you characterized Fukuda and IOM as 'research diagnoses.' Fukuda was a research criteria; IOM is a clinical criteria. I know a little about this myself; I was in the room in Washington DC 11 years ago when the IOM held a public meeting to lay out what their assembled committee of experts were going to actually be working on. And I've corresponded with a good number of prominent researchers in this field over the years.
But that means zero; this is Wikipedia, and this article will never read exactly as I would like it to. However, I do recognize that it's excellent compared to what it was just a few short years ago, and that this is the case due to reliance on reliable sourcing does give me some satisfaction even though I am well aware (and agree with, at least in the abstract, that they should be considered separately, though medical science thus far disagrees) that ME is not CFS. This article will likely never satisfy you. Get used to it. Rest assured that the current group of editors have done by far the best work this article has seen in its history. Regardless of what you think this article should say based on what you think you know, they deserve gratitude. What you have is attitude. A lot of people do; a lot of people agree with you, in part, largely, completely, whatever. This page exists to reflect the sources deemed highest quality, preferably recent. It is constructed based primarily on secondary sources such as high-quality reviews in high-impact scientific journals, and rarely, if ever, on primary sources, even those that seem earthshaking upon publication, even if they're in a top-tier medical journal. You favor the ICC? Find the archived talk page with the discussion about whether to include it or not from when it was published in 2011. Do you know what it means when there's 26 authors on a document like that? It means that until & unless it is recognized as a credible publication, it will not be taken seriously. Indeed, it took years to gain credibility, and even if many think it's the most accurate criteria to date, it's still outranked by IOM/CDC, NICE, and the criteria that ended up enjoying the prominence that the ICC aspired to, the older, but now more often used in research, Canadian. But you knew that, right? Yet we still see papers in 2025 using Fukuda even though it was retired 8 years ago, and, yes, occasionally Oxford. The 2024 Nath NIH study used 'multiple' criteria, including CDC Reeves/Empirical 2005. The people who do these things don't care what you think about the ICC. They're wrong to use those criteria, but Wikipedia is not wrong to recognize that there is a hierarchy in which IOM>ICC no matter who disagrees.
Here's a suggestion: take a good, long look through the archives of this talk page. Take a look at what passed for credible research that defined diagnosis and treatment 15 years ago, 18 years ago, 20 years ago. Read some of the contentious discussions that took place here when the view that ME, or whatever the authorities (which is not you or me or anyone else here) choose to label it or its weak sister 1988 cousin, was a condition largely defined by the presence of post-infective perpetuating factors such as embrace of the sick role, and best treated with CBT and GET. Take a good look at how much work it took to establish that the article ended up not being supported by the scientific literature, which shifted substantially over the past decade. The stubbornness of a prior group of editors who refused to consider any other view was overwhelming no matter who came here insisting they were wrong, that ME is an organic, physical illness, that ME is not CFS, you name it, every such view point was shut down. Actually at first there had been an ME article and a CFS article, but they were merged. The sources supported that action at the time. Today the sourcing portrays a different reality, and the hard work done on this page to accurately reflect what the sources deemed reliable actually say was a tremendous accomplishment. Perhaps you know of Guido van Broeder. Banned not once but twice when he came back via a sock account. I'll assume you're not him or one of his colleagues, just someone who believes that the likes of Byron Hyde and Melvin Ramsay are the best sources for this article. Perhaps they would be if they hadn't self-published. But they did, for whatever unfortunate reason, and that's why their work doesn't rate on this page. Neither does the Hummingbird, or Sarah Myhill, or Jacob Teitelbaum.
That's how it goes here, for better or worse. If you want to continue as you have, you should know that you will not succeed. What you could perhaps do is look to see if a source this site deems reliable contains information that should be in this article but isn't. It doesn't matter if you think the standards of this site are up to snuff, or not. You are free to create your own encyclopedia. If you intend to work on editing this article, however, you will have to abide by the rules.
Sorry for the length of this reply; condense/hide as you see fit, @Femke, @Ward20, whoever. NeurastheniaMilkshake (talk) 14:53, 22 May 2025 (UTC)[reply]
I'm not going to comment to walls of text but yes, it could very well be that I am wasting a little time here. We'll see. The people you mention all have published about ME so they wouldn't make the best sources for an article about ME/CFS. Emagame (talk) 07:39, 23 May 2025 (UTC)[reply]
What you are doing is furthermore known as cherry picking. You only use a source for what fits your POV, and ignore everything else. For instance, as mentioned the IOM also clearly state that their ME/CFS is not characterized by CNS inflammation nor by myalgia, i.e. it is not ME. You can't just ignore that. SEID was intended to replace CFS, not ME. The disease ME is still around, e.g. a large epidemic started in Indonesia in 1990. Emagame (talk) 12:52, 20 May 2025 (UTC)[reply]
Without source links and quotes it is just hand waving. Ward20 (talk) 13:01, 20 May 2025 (UTC)[reply]
I'm pointing out what is wrong with the current sources and the claims that link to them. I don't find it fruitful to try and write a better article on ME/CFS as the best way to proceed is simply to delete it. Emagame (talk) 13:06, 20 May 2025 (UTC)[reply]
Here is how to reach consensus on that. Ward20 (talk) 13:21, 20 May 2025 (UTC)[reply]
Thank you. Note that it says consensus can change. So what is your current opinion as an editor with regard to my proposal? Emagame (talk) 14:00, 20 May 2025 (UTC)[reply]
Sorry, I disagree with it. I believe the previous consensus with the editors that ME/CFS is the most common name used for the illness at this time. Ward20 (talk) 14:59, 20 May 2025 (UTC)[reply]
My view is also that the current name reflects Wikipedia naming standards WP:COMMONNAME. Innisfree987 (talk) 15:03, 20 May 2025 (UTC)[reply]
As do I. There don't seem to be clinical guidelines on a disease entity ME for instance. —Femke 🐦 (talk) 18:06, 20 May 2025 (UTC)[reply]
Most diseases have no guidelines. Emagame (talk) 20:08, 20 May 2025 (UTC)[reply]
That's for when the same thing has different names. For this article it means a choice between ME/CFS and SEID. My proposal is about having the article at all, not about its name. Emagame (talk) 20:10, 20 May 2025 (UTC)[reply]
The entry cites dozens of authoritative sources recognizing the entity ME/CFS so there’s essentially no chance that it would meet Wikipedia’s deletion criteria. Innisfree987 (talk) 21:09, 20 May 2025 (UTC)[reply]
One of the problems with the article is, that it doesn't reflect what authoritative sources actually say. Emagame (talk) 22:56, 20 May 2025 (UTC)[reply]
Ward20 has explained how to propose changes. Innisfree987 (talk) 02:41, 21 May 2025 (UTC)[reply]
I'm not proposing changes. I'm proposing to delete this article. Emagame (talk) 10:21, 21 May 2025 (UTC)[reply]
Ok. That’s already been addressed. At this point, please read WP:BLUDGEON. Innisfree987 (talk) 10:35, 21 May 2025 (UTC)[reply]
I have not even formulated the proposal yet. I'm giving this a few more days to allow others to weigh in that may be more knowledgeable. Yours are merely preliminary comments, and I find them without merit. Emagame (talk) 08:08, 22 May 2025 (UTC)[reply]
You have dismissed almost every single opinion other than your own. If you are waiting for people to agree with you, you may be waiting for a very long time. I suggest making your proposals and allowing others to weigh in on those, that way people can actually understand what changes you want to be made and what evidence they are based in. IntentionallyDense (Contribs) 18:45, 22 May 2025 (UTC)[reply]
That is my intention, thanks. Emagame (talk) 07:34, 23 May 2025 (UTC)[reply]

@User:Emagame I agree with User:NeurastheniaMilkshake about wasting editors time trying to assert positions from superiority without providing reliable sources (with links and quotes), while also discounting other editors positions and reliable sources. I've edited this article for a long time and the last editor I recall that did this so tenaciously was User:Guido den Broeder who had a drawer of known socks: User:Roadcreature, User:The Jolly Bard, User:Betholly Jard, User:Jarold Blythe, User:Pris La Cil, User:Dolberty... Not all incarnations edited this article, and sad to say it wasn't productive when they did.

There are editors here who have vast knowledge about the article and Wikipedia. So please support any position with links and quotes to reliable sources. Ward20 (talk) 20:45, 22 May 2025 (UTC)[reply]

From the history, the user you mentioned has never edited this article. Meanwhile, I have provided a decent number of sources while you have given none that support your peculiar POV. Emagame (talk) 07:32, 23 May 2025 (UTC)[reply]
None of what you've claimed just above is accurate,[10] LOL. Yup, WP:TENDENTIOUS editing just like User:Guido den Broeder. Ward20 (talk) 12:09, 23 May 2025 (UTC)[reply]

Changed guidelines

[edit]

Hi everybody,

Please help to correct the first introduction section. There is a sentence: "Doctors may be unfamiliar with ME/CFS, as it is often not fully covered in medical school," which lacks any reference to the fact that even official guidelines have changed 180 degrees... not to mention the significant efforts and results already achieved through experiments and other research in recent years after covid triggered so many new cases and interest grew.

The point is, the claim that patients do not receive adequate help because ME/CFS is not taught in medical school is no longer so relevant in 2025, to say the least. I feel the emphasis in this section should shift more toward the fact that the entire paradigm has officially changed (in Europe/UK since I referred to NICE guidelines). So it needs to get mentioned in the first paragraph at least very breifly since other, smaller factors have been mentioned.

Of course, there are still some practitioners who disagree with the new perspective on what is considered harmful or beneficial practice... And continue to follow what they personally believe in or what they were taught previously in medical school (!) . The main issue now is that when doctors search online or open a textbook, they may come across outdated information, unless they are consciously aware of the updated guidelines and ongoing discussions.

I did one minimal change and I do not want that it gets reverted without further thinking why old version is the best. Thank you!

PS. I live in Estonia and here, many of my colleagues do "bad practice" or to put it more softly "opposite of the official guidelines" not because they have never heard of the condition but because they have heard about it briefly in medical school back then and feel confident enough to give out firm instructions to these patients. Muruhaldjas (talk) 11:24, 15 July 2025 (UTC)[reply]

@Muruhaldjas While official definitions and treatment recommendations have shifted within the last 10 years, there are Wikipedia guidelines on how to introduce material such as this. I believe there are a couple of things that need to be agreed-upon to implement the material.
Wikipedia:Identifying reliable sources (medicine) requires that,"Ideal sources for biomedical information include: review articles (especially systematic reviews) published in reputable medical journals, academic and professional books written by experts in the relevant fields and from respected publishers." There needs to be better WP:MEDRS sources. The added sources do not meet this standard.
Wikipedia:Manual of Style/Lead section requires, "significant information should not appear in the lead if it is not covered in the remainder of the article." The topic gets some coverage in the last paragraph of the Pacing and energy management section and has some indications in other sections. It's not a major topic or section in the article. Perhaps it should be, but it should have careful thought and consensus on talk. This is a Wikipedia featured article and requires high standards to maintain the quality designation. So please take a step back and revert yourself, and work on the talk page to implement consensus needed to include the topic. Ward20 (talk) 22:27, 15 July 2025 (UTC)[reply]
This is an interesting question. I agree the way to proceed is to consider what kind of sources we need and where it should go in the body of the entry if we do have adequate sources, and then consider whether sources indicate it’s significant enough to add to the lead. Per WP:ONUS I have reverted the changes while we are seeking consensus on this. Innisfree987 (talk) 22:54, 15 July 2025 (UTC)[reply]
It also reminds me that Controversies related to ME/CFS could use some attention; I don’t know if anyone’s interested in working together to improve that. Innisfree987 (talk) 22:57, 15 July 2025 (UTC)[reply]
Thank you to whoever takes the time to improve this. I do not understand why official expert body guidelines and conclusions are not considered sufficient sources. These are something doctors must follow :) I mean, it's a "safe" way for them to do their work—otherwise, they need to justify why they deviate from the guidelines. They might have to say something like, "Oops, I’m not really an expert," or, "I’m a better expert than the 'already outdated' guidelines from an expert assembly..."
I read this wiki article for the first time and immediately saw ways to improve it. I'm sorry if that wasn't enough or if the changes didn’t fully consider everything. The older emphasis might have felt better, I understand that.
By the way, there’s not much controversy anymore. I’ve attended several recent conferences, and there have been biopsies and experiments done quite recently. These make it absolutely clear that the condition has something to do with mitochondrial problems. Essentially, energy gets so depleted that muscle fibres go necrotic. That means the muscle fibres are no longer able to sustain life and begin to die :( It becomes a vicious cycle because necrotic tissue has to be cleared from the body, which takes even more energy.
That said, to me personally, it feels wrong to keep outdated information presented as fact in the first paragraph, especially when recent evidence and discussion threads all seem to agree that, yes, the paradigm has shifted.
P.S. I also have to mention: a large body of COVID-related research has been done and published on very new online platforms, because the most respected journals often say they’re not interested in publishing “negative results.” For example, research on what autoantibodies are present in these patients, and similar findings. This has become such a problem that one entire conference presentation focused on why long covid/ME/CFS researchers need different platforms... like an online resource where they can inform colleagues worldwide about what they've done, how they did it, and what they found. Things like: no standard lab test is sufficient, and so on. Their colleagues want and need to know that. Thankfully, we do have the internet and email, so no physical printing is needed any more. The "respected" traditional publishers and their outdated rules (such as refusing to publish so-called negative or “off” results) seem out of place in 2025.
The NICE committee and their guidelines are old but respected, and the official doctors’ associations for certain diseases are also highly respected. So I’m not sure what the actual problem is, why Wikipedia seemingly cannot even mention them, in the eyes of some. It’s something to think about. wikipedia - a blast from the past. (?) Contemporary official guidelines go not to the compartment named "controversies". If so, wiki is more 'conservative' than official best guidelines for doctors and the official internet pages they (experts in that field) have created.
That is my opinion. And these are my ideas on what to think about while thinking about the philosophy and then doing individual choices whether trying to add something or erase something new or something old instead...
I'm very glad that right now many scientists try to investigate ME/CFS since covid "helped" to increase the patients population with clear triggering event (covid virus), increasing interest in funding and public approval in doing that. Some silver lining found at least. Muruhaldjas (talk) 13:31, 17 July 2025 (UTC)[reply]
The expert guidelines are great sources. Can you point to sections where they specifically discuss the changes in the way your edit described, or do they just present the new guidelines without reference to the old ones? To claim there’s been a “dramatic” change is something we need a WP:MEDRS source for in my opinion (although I am open to hearing other opinions; @Femke I don’t know if you think a news source would be adequate?) We definitely need some good source to avoid WP:SYNTH: i.e. we cannot just give our personal interpretation of the contrast, we need to be able to cite that claim.
If we can point to a good source though, I do think it would make a good addition to the history section and then possibly to the lead. It’s definitely a topic that attracts people to the talk page to share their confusion. Innisfree987 (talk) 18:53, 17 July 2025 (UTC)[reply]
(bit too much text to wade through for me atm). In the last paragraph of history we talk a bit about this shift, and the IOM guideline. I think another mention there of changed guidelines would work, and I think we're on the right side of the grey area of being able to use news articles for this, depending on the exact wording and source. Agree we do need to cite the contrast and not make our own interpretation. —Femke 🐦 (talk) 06:46, 19 July 2025 (UTC)[reply]
I believe the changes fall into these categories; a reduction of the importance of the psychosocial theories, CBT and GET, treating ME/CFS symptoms rather than just coping, and recognition, evidenced by the Covid epidemic, of post infectious symptoms. It seems there should be reliable sources describing the scope/timing of these changes. Ward20 (talk) 23:49, 20 July 2025 (UTC)[reply]
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