Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

Did you know nomination

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

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

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• Article history

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

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

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

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

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

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

QPQ: Done.

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

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

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

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

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

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

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

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

The article is written like a blog

An article on a neurological illness should not be written like this, it doesn't read encyclopedic. Comparison with cancer? What, seriously? Most references are ME/CFS advocacy sites. If it's as serious as cancer and AIDS, how come "Doctors may be unfamiliar with ME/CFS, as it is often not fully covered in medical school" and " No specific lab tests are approved for diagnosis; while physical abnormalities can be found, no single finding is considered sufficient for diagnosis"? Overall, the article overexaggerates the illness. Necatorina (talk) 06:44, 29 June 2024 (UTC)

The article is based primarily on clinical guidelines from NICE, IqWiG, and the CDC, and on the Mayo clinic and the BMJ sources on the illness. I believe those are the best sources on the illness you can get.

The article doesn't say the illness is worse than cancer and AIDS it says the quality of life of people with the illness is worse than examined cancers and HIV/AIDS. The QoL of AIDS is quite good, given effective medication exists.

It may feel like the article describes a more serious illness than you may be familiar with because of how it's currently defined vs how it was defined 10 years ago. Now, to have even mild ME/CFS, you need a 50% reduction in functional capacity compared to pre-illness. —Femke 🐦 (talk) 06:59, 29 June 2024 (UTC)

Just to underline, the comparison on QOL is sourced to a peer-reviewed study. Meanwhile, it’s not the case that "Most references are ME/CFS advocacy sites." I only see one such reference in almost 100 sources. Innisfree987 (talk) 07:55, 29 June 2024 (UTC)

I've replaced the research charity with the CDC. In terms of the how tag, on the mortality from ME, the answer is usually malnutritution as far as I'm aware, but I'm struggling to cite this:

• The original source describes the two in the same sentence, but does not make the link. It states: "This can lead to loss of ability to work, the need for care including artificial nutrition and, in very severe cases, even death."
• Our source on care for people with severe ME/CFS notes life-threatening malnutrution. Maybe I'm too purist here, but it doesn't say people die explicitly?
• The NASEM long COVID report also doesn't say what people die from. It just says over 5,000 have died without clarifying if they also had ME/CFS or what they died from.
• Non-MEDRS, but for context, renal failure from ME has also been noted as a cause of death.

My preference is to remove the tag without using any of these sources. But open to adding something if we can of course. —Femke 🐦 (talk) 18:32, 4 July 2024 (UTC)

Oh, thank you so much for looking into all that. Yes seems reasonable to remove the tag for now; I’ll do that. There’s a new preprint reviewing nutrition for severe patients that might eventually be helpful but we’d have to see when its final form is published. Innisfree987 (talk) 21:55, 4 July 2024 (UTC)

Severe chronic fatigue syndrome should be considered with "central idiopathic hypersomnia" possible comorbidity pathology

Severe chronic fatigue syndrome should be considered with "central idiopathic hypersomnia" possible comorbidity pathology (both are also "current scientific research pathology unknown and there are sleep disorders" diseases), both are prone to the existence of "drunk every night after sleep" this more significant characteristic, relatively rare characteristics.  Moderate to mild chronic fatigue syndrome needs to consider a large number of "common diseases" and "rare diseases" in sleep disorders. Moonlight005 (talk) 04:29, 15 July 2024 (UTC)

A "severe chronic fatigue syndrome"/hypersomnia pathological hypothesis

In view of "severe chronic fatigue syndrome",idiopathic hypersomnia, atypical depression, type 2 narcolepsy whose pathology is unknown in scientific research so far, a hypersomnia pathological hypothesis is that the small blood vessels next to the arousal control nucleus (Fudan University and other teams have replicated such arousal control nucleus through animal experiments) lead to excessive carbon dioxide, which becomes a natural 7*24 hours anesthetic, thereby causing complex symptoms such as lethargy. https://zhuanlan.zhihu.com/p/627324913 https://iobs.fudan.edu.cn/70/66/c17248a421990/page.htm Moonlight005 (talk) 04:35, 15 July 2024 (UTC)

This is an English version of the pathological hypothesis analysis of "severe chronic fatigue syndrome"/idiopathic hypersomnia, which may be more intuitive for English users.

Url:

https://zhuanlan.zhihu.com/p/690767363 or https://weibo.com/ttarticle/p/show?id=2309405033349046731031

The title of the article is as follows:

"Pathology of IH may be hyperlocalized carbon dioxide excess"、"An important subtype of idiopathic hypersomnia (also including idiopathic hypersomnia with unknown pathologies, narcolepsy type 2, hypersomnia depression, etc.) is likely to be the mathematical model and analysis of the pathology of hypothalamus and other parts controlling ultra-small vascular lesions (such as blockage) of the awakening nerve nuclei leading to excessive carbon dioxide in a small range".

Moonlight005 (talk) 04:38, 15 July 2024 (UTC)

This does not seem to be discussed in high-quality review articles, so I do not think it deserves a mention here. It is unclear if these links are to scientific articles or more to a blog-type article. For medical content, sources need to meet the criteria as described in WP:MEDRS, which in summary means they should be recent and secondary (a review). —Femke 🐦 (talk) 18:24, 15 July 2024 (UTC)

Thank you for your communication and I would like to further explain this pathological hypothesis.  The current pathological hypotheses (or merely guesses rather than analyses) of severe chronic fatigue syndrome and idiopathic hypersomnia are basically based on infections (such as viruses, bacteria, etc.), but ignore the more common causes of brain disease such as cerebral vascular blockage, and have not made substantial progress in pathology to date.  So here speculation and analysis (have a lot of analysis, specific see link) super local (beside cerebral awakening control nuclei) of small vascular lesions (further cause excessive carbon dioxide, excess carbon dioxide just become the body's natural 7 * 24 hours of endogenous real-time anesthetic) I think maybe is a very worth exploring a pathology.

As I said earlier:Severe chronic fatigue syndrome should be considered with "central idiopathic hypersomnia" possible comorbidity pathology (both are also "current scientific research pathology unknown and there are sleep disorders" diseases), both are prone to the existence of "drunk every night after sleep" this more significant characteristic, relatively rare characteristics. Moonlight005 (talk) 07:27, 16 July 2024 (UTC)

Severe chronic fatigue syndrome and idiopathic hypersomnia should both be rare conditions (it is now certain that idiopathic hypersomnia is a rare condition).

The progress in the study of rare disease pathology is often slow due to the lack of sufficient patient data and research funding.

The pathological hypothesis proposed here is put forward by a patient based on his own feelings and retrieval of papers.   So far, it has been freely shared publicly for a year or two, but there is still no substantive feedback from scientific research institutions (such as leave a message for feedback or email replies).   It can be seen that the pathological hypothesis of rare diseases is easily ignored, and it is expected that the patient community concerned about "severe chronic fatigue syndrome/idiopathic hypersomnia" will try to communicate this pathological hypothesis to scientific institutions so that they will  try to reproduce it in animal experiments. Moonlight005 (talk) 07:38, 16 July 2024 (UTC)

If the scientific community hasn't taken note of the hypothesis, it's way too early to include it on Wikipedia. It needs to be covered in reviews, before it's considered sufficiently important to include. —Femke 🐦 (talk) 07:58, 16 July 2024 (UTC)

To convey the pathological hypothesis to the severe chronic fatigue syndrome/sleep "basic research related to the scientific research institutions, others (e.g.  "Severe Chronic fatigue syndrome/idiopathic hypersomnia" related patient population) have any good Suggestions? Moonlight005 (talk) 10:07, 16 July 2024 (UTC)

As Femke said, this is not something we should currently include. We're an encyclopedia, so we base our writing on what's already been established and proven. There is certainly value in hypotheses that haven't been proven or widely recognized, but there are better places to discuss these novel ideas, like journals. The Quirky Kitty (talk) 08:41, 23 July 2024 (UTC)

Note about FAC

Unless there are any objections or further suggested improvements, I plan to nominate within the next 10 days. —Femke 🐦 (talk) 18:19, 19 July 2024 (UTC)

• Suggestion Can we add G93.32 to the med resources navbox? (Please note, my browser is saying the security certificate for the external lookup site expired on 15 July 24.) Haven't boldly added as I gather the previous ICD-10-CM codes were removed following discussion that noted they had been retired/replaced. Given that the 5th characters are not present in WHO's international version of the classification, however, I feel it would have been better update G93.3 to G93.32 rather than remove it in favour of the G93.3 code within ICD-10. (If it weren't for the 5th character, I would be in total agreement for not duplicating G93.3)

Here's the markup if there's agreement to "restore": | ICD10CM = {{ICD10CM|G93.32}}

Little pob (talk) 20:49, 21 July 2024 (UTC)

I get the same issue with my browser. Shall we wait until the website is functional before we include the link? Content-wise, I'm very happy to include it. —Femke 🐦 (talk) 19:34, 25 July 2024 (UTC)

Found out that CDC has an "official" lookup tool. Rather than wait for the "dead" service to renew their security certificates, I've changed the template to point to CDC's search function instead. Little pob (talk) 19:59, 25 July 2024 (UTC)

Citations in the lead

Would it be reasonable to remove some of the citations in the lead per MOS:LEADCITE? I'm hesitant to make any major changes since I understand the contents of the lead could technically be considered complex/controversial enough to warrant citations.CursedWithTheAbilityToDoTheMath (talk) 03:01, 22 July 2024 (UTC)

Edit: I just now realized this has already been addressed but no conclusion seemed to be reached. CursedWithTheAbilityToDoTheMath (talk) 03:04, 22 July 2024 (UTC)

From the perspective of having an easier ride at FAC I would be okay if somebody cuts the citations. However, this is one of those articles where the balance MOS:LEADCITE describes probably falls more towards not cutting citations further. This was historically and possibly still one of the most contested diseases out there. —Femke 🐦 (talk) 17:54, 23 July 2024 (UTC)

Historically in this article, almost every item in a sentence that hasn't been sourced has been challenged, removed, changed or tagged frequently. For the sake of having a more stable article it would probably be better to leave the citations. Ward20 (talk) 22:13, 23 July 2024 (UTC)

That's understandable. I think it'a probably best if it's just left as is. CursedWithTheAbilityToDoTheMath (talk) 23:08, 23 July 2024 (UTC)

IMO the article is now too clinical or vague in some aspects, and does not plainly describe the impact on persons with the illness

There has been much article improvement with removal of extraneous information and better citations, but it has lost some important plainly presented information about the impact on persons with the illness. The lead sentence should first say "ME/CFS is a complex, disabling, chronic illness."[1][2] An older version of the article was similar.[3] Serious long-term illness is vague and understated. "The reduced ability to perform pre-illness activities" is part of the three primary required symptoms.[4] It should be stated implicitly in the lead, not implied by other symptoms.

Physical functioning and Cognitive functioning sections from older versions are no longer in the artile.[5] I realize there were a lot of older sources in the sections, but, in some cases, the sections better described "how" the physical and mental aspects of the illness affect day to day activities, social and economic status of people with ME/CFS. Much of this is presented in the present Severity sections, but it's so clinically described I have difficulty relating to it. There are three sentences describing quality of life, mostly in a statistical manner, but it doesn't adequately and plainly describe the social and economic devastation upon people and families, IMO. Ward20 (talk) 01:30, 1 August 2024 (UTC)

I've put back the sentence I removed on reduced ability to do task from the IOM definition. I removed it as part of a FAC comments. I agree it's a bit vague if you read it without understanding it's part of one of the definitions of ME/CFS, but don't feel too strongly about it.

I can live with disabling instead of serious. A previous person removed serious as they felt it wasn't neutral in the other direction. The word complex seems overly technical to me. What does a general reader see if they read that word? It ME/CFS more complex than other neurological diseases? Or does it only seem that way as the heterogeneity and the cause haven't been worked out quite? For instance, the WASF finding could be a simple explanation.

As for the severity section: I'm all open for suggestions. I thought I had removed the more academic parts of cognitive dysfunction (previously functioning) and severity (previously mostly physical functioning). I think the opening sentences may be overly abstract / too clinical? —Femke 🐦 (talk) 16:38, 1 August 2024 (UTC)

Fair points. I believe the "complex" wording comes from the point of view that the illness is described as systemic[6] or multisystem[7] affecting many body parts.[8] When a patient sees a doctor about their symptoms they can list headaches, memory problems, cognition problems, joint pain, muscle pain, sleep problems, tender or swollen lymph nodes, brain fog, dizziness, balance problems, muscle weakness, tiredness, rashes, spontaneous bruising, low-grade fevers or alternately low body temperature, sore throat, neck stiffness, blurry vision, heart palpitations, mood swings, clumsiness, sensitivities to chemicals noise and light, night sweats, digestive issues, shortness of breath and others.[9] Frankly, a doctor feels overwhelmed seeing all these symptoms, or assumes the patient is mentally ill. Publications that talk about symptoms from all body parts are patient publications, or books by doctors treating many patients such as Dr. Bell, or Dr. Hyde.[10][11]. Patients realize they have to limit the list symptoms to maintain credibility, and the medical journal articles authors do also. The Wiki article lists individually many of the affected bodily systems, but it's academically described, so it loses some of the overall illness complexity and impact, IMO.

I think the same issue occurs with the new publications about severity that talk academically about the illness. I will look at newer MEDRS publications of practicing physicians to see if I can find material from the patient perspective.

The Severity section might be changed to Illness severity to be a bit more clear. Ward20 (talk) 00:22, 2 August 2024 (UTC)

I think you're on to something with the complexities needing to be described better in the symptoms section. The DecodeME questionaire is probably the best one for this. Not a review, but N is possibly larger than all other surveys combined in symptom burden. Still, ideally we find a source that is more generally acceptable.

What makes you say illness severity is clearer? I don't disagree, but I can't think of something that it can be confused for at the moment. —Femke 🐦 (talk) 19:49, 2 August 2024 (UTC)

For examples, I can think of symptom severity, disability severity, fatigue severity, reduction in quality of life severity, and they may or may not be congruent. Talking about the overall illness in the section, the title might as well state that.

With disability in the leading sentence I agree it's a reasonable compromise to remove the sentence about pre-illness activities, although it then puts more emphasis on the fatigue symptom, which the new definition is trying to move away from. But I think it is an improvement and Rome wasn't built in a day. Ward20 (talk) 00:00, 3 August 2024 (UTC)