Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

Proposed new structure management
Reviewing some newly published sourcing, I've noticed that our management section is not quite comprehensive, and I think that's because much of it can't be shoe-horned into the current structure. For instance, fibromyalgia meds and gentle massage are often tried for pain management, which can't be fitted into our current structure. The section still looks a lot like the old treatment section. I'd like to move to three subheadings:


 * Pacing and energy management
 * Symptom relief (up to one paragraph per symptom, i.e. sleep, pain, orthostatic int, gastro issues, cognitive issues, and mental health effects)
 * Care for people with severe ME/CFS.

This roughly corresponds to how the CDC covers it (their management page is per symptom, a separate page for caring for severe cases). The German consensus statement has two sections (pacing and symptom relief). The Mayo clinic one has 2 core section (pacing and treat symptoms). The BMJ has ongoing multidisciplenary support as first-line treatment, and pacing and symptom management as adjuncts.

The current discussion of old-school CBT and GET would be merged as a paragraph in pacing. It's a bit duplicative at the moment.

—Femke 🐦 (talk) 17:12, 28 May 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)

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)