Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

Rewriting the funding section

The current section on funding has a few issues:

• it shows its age. It's mostly focussed on incidents before 2000 for the US, and around 2000-2010 for the UK.
• There are also some issues with source-text integrity
• It has quite obvious systemic bias towards UK/US

Proposed new text:

Historical research funding for ME/CFS has been far below that of comparable diseases. In a 2015 report, the U.S. National Academy of Sciences called it "remakabl[e]" how little funding there had been for research into causes, mechanisms and treatment.(page 9 of IOM report) Lower funding levels have led to a smaller number and size of studies. In addition, drug companies have invested very little in the disease.

The U.S. National Institutes of Health (NIH) is the largest biomedical funder worldwide. Using rough estimates of disease burden, a study found NIH funding for ME/CFS was only 3% to 7% of the average disease per healthy life year lost between 2015 and 2019. Worldwide, multiple sclerosis, which affects fewer people and results in disability no worse than ME/CFS, received 20 times as much funding between 2007 and 2015.

Multiple reasons have been proposed for the low funding levels. Diseases for which society "blames the victim" are frequently underfunded. This may explain why a severe lung disease often caused by smoking receives low funding per healthy life year lost. Similarly for ME/CFS, the historical belief that it is caused by psychological factors, may have contributed to lower funding. Gender bias may also play a role; the NIH spends less on diseases which predominantly affect women in relation to disease burden. Less well funded research areas may also struggle competing with more mature areas of medicine for the same grants.

There are a two things I'd like feedback on:

• The text relies quite heavily on Arthur Mirin's work. This is because not too many others publish on the topic, and other sources are typically more polemic and in lower-quality journals, or are older. Is this okay?
• Have I sufficiently addressed the geographic bias? While the text itself is less focused on the UK/US, the underlying sources still are. Am I simply hiding the bias here? I've added a single sentence about worldwide funding, but could add a bit more from that report commissioned by the CFS/ME collaborative (previously incorrectly only attributed to ME in Action).

—Femke 🐦 (talk) 16:30, 25 November 2023 (UTC)

• Since Mirin's cites are from three different publications, I would say that indicates general acceptance of the material. I would not worry on that point.

• I believe it addresses the current data issue more than the geographic bias issue. As you say, the underlying sources are still UK/US, but if that's all that primarily exists on the subject it is still an improvement, IMO. Ward20 (talk) 09:54, 28 November 2023 (UTC)

I like your proposed changes as well. I don't think geographic bias can be fixed much, since we don't have other sources to work with. But updating the figures is a big improvement. When I started working on this article, much of it felt like it was written in the early 2010s. That's improved a good bit, but research funding was one of the remaining outdated sections. The Quirky Kitty (talk) 03:22, 5 December 2023 (UTC)

References

—Femke 🐦 (talk) 16:30, 25 November 2023 (UTC)

Questions on External links section

I was doing some link maintenance and found the link Patient UK:Chronic fatigue syndrome is dead. There is a updated link for the material at Patient UK:Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) when I went to edit to update the section I don't see where the "Patient UK" material is defined so I can edit it. Help? Thanks.

Also, the material from "Chronic fatigue syndrome at Wikipedia's sister projects" in that section is badly in need of updating. They use outdated definitions and conflate ME/CFS with general fatigue and psychological issues that cause fatigue. Ward20 (talk) 20:05, 6 December 2023 (UTC)

I think it's coming from wikidata, but can't find it there. {{Medical resources}} indicates that it does get this data from PatientUK from wikidata (where it's https://www.wikidata.org/wiki/Q209733). —Femke 🐦 (talk) 20:15, 6 December 2023 (UTC)

You are correct, it is importing from that link. I tried to edit the information in the "Patientplus ID" section, but I don't understand the syntax they're using, and self reverted to the last edit you did. Ward20 (talk) 21:33, 6 December 2023 (UTC)

The WD ID is supposed to link to "doctor" pages, but currently links to the "signs and symptoms" page. The two have different titles, effectively ME/CFS vs CFS/ME, which is causing {{medical resources}} to send you to a 404 error. Will override locally, but also attempt to fix at WD. Little pob (talk) 12:24, 7 December 2023 (UTC)

I think I've fixed the WD entry; but the oldID is still delivering a 404 so have not reverted the local override. Please double check in a couple of hours (or a day or so) in case it's a cache issue. Little pob (talk) 12:35, 7 December 2023 (UTC)

Thank @Little pob! Do you know what determines the text of the link? Is it called CFS because this article is currently CFS? Or does it get that from the PatientUK somehow? —Femke 🐦 (talk) 17:43, 7 December 2023 (UTC)

Had a look at the source code; it uses the {{PAGENAME}} magic word to pull the WP article title (rather than the WD label). Little pob (talk) 17:56, 7 December 2023 (UTC)

New CDC survey on prevalence

The CDC has released the results of a survey they did on the prevalence of ME/CFS: [1]. They estimate 1.3% of American adults, which would be 3.3 million people. It's a bit higher than some of the other figures. How should we incorporate it into the article? The Quirky Kitty (talk) 20:02, 8 December 2023 (UTC)

Very interesting. It's about people saying their doctor has diagnosed them, which means it's much much higher than previous estimates. Usually, estimates of 1% are about community surveys, and a large share of the 1% are previously undiagnosed people. A shame the link doesn't reflect on this, or puts this into perspective of other studies. I've started prepping an overview of recent reviews on the topic, as I think our lead sentences are not that great at the moment. Moving house so might not finish till Christmas period. For now, I think we should wait for secondary sourcing? —Femke 🐦 (talk) 20:14, 8 December 2023 (UTC)

improving lead readability

I've been making some gradual changes to the lead to improve readability. Currently, the readability score indicates it's more difficult than your typical academic paper. Given our audience will not be academics, and may even suffer from cognitive issues, we do really need to address this.

I've tried a few things, many of which were accepted. Principally, I tried to "show not tell". Instead of saying "debilitating fatigue", I've included the fact that a quarter of people are bed or homebound. Instead of saying "numerous", I enumerated the key body systems in which changes occur, also making the sentence less awkward.

I'm not married to any of my changes, but I'm at a loss how to make this lead accessible. Any further ideas?

—Femke 🐦 (talk) 09:18, 24 December 2023 (UTC)

What about something like. It's still more difficult than I'd like, but should be easier to understand.

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a complex and debilitating long-term medical condition. People with ME/CFS experience lengthy flare-ups of the illness following minor physical or mental activity. This is known as post-exertional malaise (PEM). Other core symptoms are greatly reduced ability to do tasks that were routine before, fatigue and sleep disturbances.[12][13] Orthostatic intolerance (difficulty sitting and standing upright) or memory and attention problems may also be required for diagnosis. Chronic pain is very common.[13] The fatigue in ME/CFS can be profound and does not go away after rest.[13] Diagnosis is based on symptoms because no confirmed diagnostic test is available.[14]

Presently:

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a complex and debilitating long-term medical condition. Core symptoms are lengthy flare-ups of the illness following ordinary minor physical or mental activity, known as post-exertional malaise (PEM); greatly diminished capacity to do tasks that were routine before the illness; and sleep disturbances.[12][13] Orthostatic intolerance (difficulty sitting and standing upright) or memory and attention problems may also be required for diagnosis. Frequently, other symptoms occur , and chronic pain is very common.[13] The often incapacitating fatigue in ME/CFS is different from that caused by normal strenuous exertion and is not significantly relieved by rest.[13] Diagnosis is based on symptoms because no confirmed diagnostic test is available

A few proposed changes to Femke's text:

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a complex and debilitating long-term medical condition. People with the illness have lengthy flare-ups of symptoms following normal minor physical or mental activity. This is known as post-exertional malaise (PEM). Other distinctive symptoms are; a significant inability to do tasks that were routine before, along with fatigue and sleep disturbances.[12][13] Difficulty sitting and standing upright, or memory and attention problems are also diagnostic. Chronic pain and diverse bodily symptoms are very common.[13] Fatigue following exertion can be severely incapacitating and does not subside normally after rest.[13] A diagnosis of ME/CFS is based on symptoms because no confirmed diagnostic test is available.[14]

I tried to simplify where possible. I don't think fatigue is now a core symptom. Fatigue can be debilitating and rest may help, but reponse is often far from normal. The widespread bodily system symptoms are also important to mention IMO. Ward20 (talk) 06:07, 25 December 2023 (UTC)

There is still a large number of difficult to very difficult words in the text. I would like to avoid words like incapacitating, subside, diagnostic, distinctive, bodily and also the semicolons. —Femke 🐦 (talk) 17:47, 25 December 2023 (UTC)

According to readable.com, still about a third of readers would not be able to understand text this difficult. —Femke 🐦 (talk) 17:53, 25 December 2023 (UTC)

Just a drive-by suggestion; I haven't read the whole article so apologies if I'm mis-describing anything. Maybe something like:

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term medical condition. People with the illness have sleep problems and fatigue that disrupt their ability to do everyday activities. Many develop memory and attention problems, and/or difficulty standing or sitting upright (orthostatic intolerance). Physical or mental activity worsens symptoms, with symptomatic "crashes" that can last for days or weeks, and are not relieved by rest. Other symptoms can involve numerous body systems, and chronic pain is very common. (I'd move the diagnosis bit to the end of the causes paragraph).

This feels more readable and less jargony to me, but admittedly I pasted it into readable.com per your suggestion and it received a grade of D... Ajpolino (talk) 20:24, 25 December 2023 (UTC)

Blending above proposals and comments:

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a complex and debilitating long-term medical condition. A diagnosis is based on symptoms because no conclusive test is available.[14] People with the illness can have lengthy symptom flare-ups following minor physical or mental activity. This is known as post-exertional malaise (PEM). Other key symptoms include a greatly reduced ability to do everyday tasks that had been routine, along with fatigue and sleep complaints.[12][13] Fatigue after normal activity can be extreme and long-lasting, even after rest.[13] Difficulty sitting and standing upright, or memory and attention problems are also signs of the illness. Also common are chronic pain and other widespread physical symptoms.[13]

Ward20 (talk) 05:26, 26 December 2023 (UTC)

Some great ideas here! Let's digests where we don't seem to align yet.

1. I really like moving the diagnosis out of the first paragraph. While readability scores do not capture paragraph length, it does impact readability. Between 50 and 100 words per paragraph is recommended. It fits well after the last sentence of the second paragraph.
2. I like moving post-exertional malaise after the description of other symptoms. It's weird to say that the core system is an exacerbation of symptoms when we've not described what these other symptoms are.
3. I think it important to describe post-exertional malaise as something happening after exertion, like in Ward's text. This 12-48h delay between activity and symptom flares is considered the key element of ME/CFS's cardinal symptom, so it's important to be more precise here.
4. Should we describe ME/CFS as a complex condition? I don't have a strong opinion here, but I think that word isn't too informative.
5. Should we single out fatigue as being extreme? In some people, post-exertional myalgia or post-exertional cognitive issues may be more disabling.
6. The wording sleep complaints makes it feel subjective, whereas sleep problems is a more neutral description?

—Femke 🐦 (talk) 17:30, 27 December 2023 (UTC)

That all sounds reasonable to me.

For #4 I think "complex" adds no meaning to the reader; no one will think a "debilitating long-term medical condition" is simple.

For #5 I think "extreme" is an unnecessary descriptor. Calling fatigue "extreme" won't suddenly summon the right image in the reader's mind. Rather, they'll understand as we give context. Is it enough to note that the fatigue prevents the affected from performing daily activities? If that's not "extreme" enough, we could note that fatigue can leave folks bedbound (as it says in the Signs & symptoms section now), or use an example as Ward does below: "They often can't brush their hair or teeth and have to crawl to the bathroom" is a great evocative description of extreme fatigue. Ajpolino (talk) 14:32, 28 December 2023 (UTC)

From above:

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term medical condition involving numerous body systems. Often, after a 12-48h delay following minor physical or mental activity, persons with ME/CFS have a worsening of their illness lasting hours to months. This is known as post-exertional malaise (PEM). Key symptoms include a greatly reduced ability to do everyday tasks that had been routine, along with sleep problems and fatigue.[12][13] The fatigue after normal activity can be extreme and long-lasting, even after rest.[13] Difficulty sitting and standing upright, or memory and attention problems are also signs of the illness. Chronic pain and other diverse symptoms are common.[13]

PEM is fundamental, so I believe that symptom should continue to lead.

'fatigue after normal activity can be extreme' should stay. It does have the modifier "can". Reviews, based on studies, do not acknowledge extreme incapacitating fatigue much because they rarely see that part of the illness. Persons with that fatigue are too ill to be involved in studies. Reviews from treating doctors mention it because patients tell them they are so fatigued they often can't brush their hair or their teeth and have to crawl to the bathroom (or worse).

Ward20 (talk) 12:10, 28 December 2023 (UTC)

Per above, I have no objection to showing the effects of incapacitating fatigue rather than telling. At this point however, I'm not sure what the best supported wording is and have to think about it. Ward20 (talk) 23:03, 28 December 2023 (UTC)

Now buried in the paragraph on epidimiology, we say that a quarter of people are home or bedbound. I think that makes the overall incapacitating nature of ME/CFS quite clear, even though some people may be bedbound due to orthostatic intolerance or muscle weakness rather than fatigue. Do you think this would work as the last sentence of the first paragraph? I think numerous body systems is both jargon (what is a body system), and feels a bit exaggerated, as the word numerous to me feels like hundreds and the human body doesn't have that many body systems.

What about the following? I'm not sure if hallmark symptom of PEM is correctly "translated" to main. I've altered the description of PEM to be after 'ordinary' effort, as people with mild and moderate ME/CFS may only trigger PEM after hoovering/cooking/commuting, rather than minor things like brushing your teeth or lifting a glass of water. The text doesn't flow that well, so open to suggestions to improve that further.

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term illness with a large number of symptoms. The main characteristic of ME/CFS is a worsening of symptoms after ordinary physical or mental effort. This is known as post-exertional malaise (PEM). Other core symptoms are a greatly reduced ability to do everyday tasks along with fatigue, and sleep problems. The fatigue in ME/CFS is not relieved by rest or sleep.[13] Difficulty sitting and standing upright, memory and attention problems and chronic pain are common. About a quarter of people with ME/CFS is severely affected and unable to leave their bed or house.

—Femke 🐦 (talk) 11:48, 29 December 2023 (UTC)

I think "with a large number of symptoms"/"involving numerous body systems" unnecessary as it's vague to the point of conveying little meaning to a reader; the reader will have a much better sense when they read the subsequent few sentences.

I still think it's a bit odd to read about "worsening of symptoms" and "reduced ability to do everyday tasks" before we read what these debilitating symptoms actually are (fatigue, orthostatic intolerance, memory/attention problems, pain). But I understand we're compromising here, and certainly I'm sure whatever we settle on here will be an improvement. Thanks for your efforts. Ajpolino (talk) 14:01, 29 December 2023 (UTC)

I'll be brief as I have a lot on my plate IRL. I think the first sentence should say there are multi-systems involved, the newer articles often use this in their definition.[2] Concerning 'PEM' I don't think 'effort' is the right term because 'I made an effort' is often used as a vague excuse. I believe 'worsening of their illness' is more accurate because new symptoms and a shift toward more severe illness can occur from PEM. I like 'The fatigue after normal activity can be extreme and long-lasting, even after rest.[13]', because I think it better captures the difference between ordinary fatigue and ME/CFS fatigue. ME/CFS fatigue may be relieved by rest or sleep, but it does not respond in a normal manner to it. Orthostatic intolerance, and memory and attention problems should be separate from chronic pain because the first two are core symptoms and chronic pain is not. Rather than describing only 25%, I think it would be better to describe the spectrum of illness from mild to very severe. Ward20 (talk) 08:42, 2 January 2024 (UTC)

One last round, let's see where we disagree, and how to resolve this:

1. Agree "large number of symptoms" is not great to start. Put it there to be able to put PEM as first symptom.
2. Agree with moving PEM down
3. I still think multi-system is jargon. We describe the objective multiple symptom abnormalities in the next section. We should not have the same difficulty as scientific texts.
4. I like describing PEM as a worsening of their illness; this is shorter than "it makes symptoms worse and/or makes new symptoms appear".
5. Happy to stick with exertion, even if it's more difficult.
6. CDC talks about severe fatigue. Extreme goes beyond that, and is not reflective of what people with mild ME/CFS usually experience. What about profound as a compromise?
7. There are multiple definitions of ME/CFS. In the CCC and ICC, pain is obligatory. In the NICE modification of IOM, cognitive problems are obligatory, but orthostatic tolerance is not. Given that, I don't see why we should introduce an awkward distinction here.
8. Open to describing the range of severities, but struggling for words here.

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term illness. People with ME/CFS have a greatly reduced ability to do everyday tasks along with profound fatigue, and sleep problems. The hallmark symptom of ME/CFS is a worsening of the illness after ordinary physical or mental exertion. This is known as post-exertional malaise (PEM). The fatigue in ME/CFS does not improve much with rest.[13] Difficulty sitting and standing upright, memory and attention problems and chronic pain are common. About a quarter of people with ME/CFS is severely affected and unable to leave their bed or house.

Tagging people who've recently engaged on talk: User:The Quirky Kitty, User:Little pob, User:Whywhenwhohow and User:Innisfree987. —Femke 🐦 (talk) 09:46, 2 January 2024 (UTC)

This is a great improvement, thank you to those who have been working on it! My only significant change is a preference for putting “The hallmark symptom…” ahead of the sentence about fatigue. My feeling on this arises from the current state of the science—that PEM is cardinal. I feel an account that puts fatigue and sleep ahead of PEM gives an out-of-date depiction of the scientific understanding, as I understand the literature. (I understood the preference for this order when the description of PEM was a worsening of symptoms that hadn’t yet been mentioned, but I think the “worsening of illness” phrasing solves this well.)
More minor matters: I would swap attention for concentration (for me attention connotes something elective where of course the point is this is involuntary), and in the last sentence, I wonder if it might read better to say “are” instead of “is”, even tho I appreciate that’s technically less grammatically correct. Not at all wedded to the last point.
Thank you again for all the work that’s gone in here. Innisfree987 (talk) 13:00, 2 January 2024 (UTC)

Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS, is a debilitating long-term illness involving multiple organs. Persons with ME/CFS have a greatly reduced ability to do everyday tasks that had been routine, along with sleep problems and fatigue.[12][13]. The hallmark symptom of ME/CFS is a worsening of the illness after ordinary physical or mental exertion. This is known as post-exertional malaise (PEM). Fatigue in ME/CFS may be severe and long-lasting, even after rest.[13] Difficulty sitting and standing upright, memory and concentration problems, chronic pain and other symptoms are common.

• The illness affects multiple organ systems, it's not jargon.
• Need to compare reduced ability to previous ability as opposed to general population ability. This is an important part of the symptom definition. Need to insert the comma and wording that reduced ability is not totally dependent on sleep and fatigue. Cognitive function, pain, orthostatic intolerance, and the other symptoms also cause reduced ability.
• Use the CDC description 'severe' for fatigue, along with other descriptors.
• Suggest the spectrum of illness can be described later in lead, as it already partially is. Suggest: "The disability from ME/CFS varies considerably. Persons with mild illness might be able to work and perform typical daily tasks with careful activity management, the severely affected can be bed-bound or house-bound." Ward20 (talk) 14:16, 2 January 2024 (UTC)

Describing the spectrum of the illness in the lead is good. We want someone who only takes a minute to skim the lead to have an idea of what the illness is like. For most conditions simply listing symptoms suffices, but with ME/CFS, the symptoms are hard enough to describe that explaining how much disability they cause is very informative. The Quirky Kitty (talk) 06:08, 8 January 2024 (UTC)

Note, I agree withInnisfree987 concerning the position of 'the Hallmark symptom', but am willing to compromis. and yield to consensus. I believe everything I was concerned with has been considered. Thank you for the work to improve the article. Ward20 (talk) 14:44, 2 January 2024 (UTC)

This looks good to me. Thank you for your work on this Femke. Ajpolino (talk) 16:19, 2 January 2024 (UTC)

I've added a compromise version to the lead. Multiple organs is definitely not how it's described in the literature.. It's systems, and most pronounced, systems that aren't described as a single organ (like nervous system, immune system and so forth). Have added the previous ability. Have added severe. I think it's good to give the illness severity a more prominent location in the lead, so I've stuck to that, not hidden in another paragraph. —Femke 🐦 (talk) 17:14, 3 January 2024 (UTC)

Thank you so much for all your work shepherding this process @Femke. Innisfree987 (talk) 21:43, 3 January 2024 (UTC)

Sorry I'm late to the party. The lead is still not as focused, short, or understandable is it could be, but we're making substantial progress. Let me dig through this thread and see what specific suggestions I can come up with. The Quirky Kitty (talk) 06:13, 8 January 2024 (UTC)

Like most of your changes. I do think the first paragraph has become too long again. Is it really necessary to spend that many words on the range of severity? —Femke 🐦 (talk) 19:25, 8 January 2024 (UTC)

References

Cairns Hotopf 2005 review

Do I read this correctly that this reviews not just studies of chronic fatigue syndrome, but also studies of chronic fatigue, or studies that mixed the two? I wanted to double-check because the section on the recovery factors on pp 22 and 28 (currently cited in the entry) wasn’t completely clear to me. But if I have that right, it seems important to clarify that these are not strictly for ME/CFS. That is, if we see fit to use them at all. Innisfree987 (talk) 05:16, 30 December 2023 (UTC)

It doesn't really matter as the source is almost 20 years, far outside of WP:MEDDATE and I don't think reflective of current thinking. There must be a more recent review out there, right? p 22 is clearly about CFS, but has slightly different numbers. —Femke 🐦 (talk) 09:13, 30 December 2023 (UTC)

Ah yes a good point about the age of the source. Innisfree987 (talk) 09:25, 30 December 2023 (UTC)

I've rewritten using the two HTAs at our disposal. It's controversial, so dediced to stick to the top of the source hierarchy. —Femke 🐦 (talk) 09:48, 30 December 2023 (UTC)

The source is old, but there are no newer reviews of prognosis that I'm aware of (and I've looked extensively for the past few years, and tried unsuccessfully to cajole the authors into updating their review). The replacement sources that you added don't give actual numbers. I'm not sure why giving actual numbers is against current thinking. sciencewatcher (talk) 17:44, 30 December 2023 (UTC)

The numbers are by definition based on older case definitions, so are less relevant to current case definitions (which are mostly IOM, Fukuda with obligatory PEM or the CCC/ICC). Would be great if another systemic review is done on current definitions. —Femke 🐦 (talk) 18:00, 30 December 2023 (UTC)

Toward a new move request

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

• Taking the 2023 sources currently cited in the entry as a sample, seven use ME/CFS or myalgic encephalomyelitis/chronic fatigue syndrome, or both; one uses only chronic fatigue syndrome; and one deals with this question. This does feel enough accumulating emphasis to merit reconsideration. I suppose I suggest a multi-option move proposal because I think some may suggest ME/CFS regardless, so easier to organize discussion if acknowledged at top. Innisfree987 (talk) 21:42, 3 January 2024 (UTC)
  • Editors that favor a name change will need to have ducks in a row for a new move request. An issue occurred in the past with the WikiProject Skepticism label on the article. During requests, this alerted several WikiProject Skepticism editors that retain the out dated point of view that the illness is in the head or psychological. The name, 'chronic fatigue syndrome' better suits the point of view of the depressed and tired meme. That appeared to be where the main pushback against a name change occured at the last request. Just saying. Ward20 (talk) 20:07, 6 January 2024 (UTC)

    I'll make sure I'll prepare sufficiently, don't worry :).

    Let's make sure we focus on content and not on the editors. I think the focus on motivations in the previous WP:RM made it more difficult to find any type of consensus. I've always worked together well with that Wikiproject (on climate change denial), and my experience is that of fair-minded editors. —Femke 🐦 (talk) 21:04, 6 January 2024 (UTC)

Having 3 options is more likely to be productive. We should recognize that most people who favor a move will be okay with either ME/CFS or Myalgic encephalomyelitis/chronic fatigue syndrome, but may also debate between them. If the consensus is to move, we shouldn't get hung up on which alternative to use. This isn't a first-past-the-post election so similar alternatives shouldn't be allowed to play spoiler.

People from the Skepticism project are likely to come in, and some of them will give opinions we disagree with, but hey, the entire point of move discussions is to solicit diverse opinions.

I think it's reasonable to make another move request. It wasn't long ago, but the results were quite narrow last time: 7 to 6. Most supporters argued based on the Manual of Style and opponents argued based on the complexity of the term and lack of proven neuroinflammation. Enough new research (and media) cementing the new term in common use has come out since then that there's a chance of getting a different result.

This time, you do the honors. After my requested move failed, I decided not to start another request for a long time because I'd rather focus my efforts on making changes everyone wants over debating. I'll express my support. The Quirky Kitty (talk) 07:28, 8 January 2024 (UTC)

I'll do "the honours" either this weekend, or in three weeks, as I'm anticipating requiring some rest after next. Will do three options. —Femke 🐦 (talk) 19:43, 10 January 2024 (UTC)

Thank you! YannLK (talk) 19:15, 18 January 2024 (UTC)

BRD: flare-ups of the illness following

I changed back to the wording 'of the illness following' because Flare-up has multiple meanings including anger, hostility so it needs to show context about illness. 'Following' is more accurate than 'after' because It more strongly conveys correlation. The other previous changes flow well with the paragraph. Ward20 (talk) 18:51, 6 January 2024 (UTC)

Looks good to me still :) —Femke 🐦 (talk) 21:06, 6 January 2024 (UTC)

What about "flare-ups of symptoms"? The Quirky Kitty (talk) 08:12, 8 January 2024 (UTC)

I think the word symptom is already used quite a bit and will become repetitive if we use it again. —Femke 🐦 (talk) 19:22, 8 January 2024 (UTC)

There was additionally concern that this could be confusing if the (other) symptoms hadn’t been mentioned yet; but also problematic if those symptoms were moved to precede the description of PEM, as that would de-emphasize PEM as a the cardinal symptom. It’s a quandary. Innisfree987 (talk) 20:00, 8 January 2024 (UTC)

Other common symptoms

Headache, night sweats, shortness of breath and other common symptoms contribute to disability and quality of life with ME/CFS. The lead should mention other symptoms are common.

Suggest changing : The severity of ME/CFS varies considerably.
to
The range of symptoms and severity of ME/CFS varies considerably. Ward20 (talk) 06:33, 9 January 2024 (UTC)

At 141 words, the first paragraph is already quite bloated. I'd really like for us to go back to around 100/120 words. A lead is not supposed to be comprehensive. —Femke 🐦 (talk) 08:30, 9 January 2024 (UTC)

Concision in lead

Wanted to throw out some phrases and sentences I would cut from the lead for the sake of concision. Was going to just do it and let people have a look but I worried that might cause alarm! So, a list:

• The severity of ME/CFS varies considerably. People with mild ME/CFS may be able to work and do other daily tasks while carefully managing their activities.[13]
• In some people, physical trauma or psychological stress may also act as a trigger.[14]
• and the drug rintatolimod may help some.
• and can also lead to loneliness and alienation.

To emphasize, I don’t object to the substance of any of this; I only think it’s information that’s not critical to include in the lead and that its value is outweighed by the benefits of brevity. Welcome reactions. Innisfree987 (talk) 10:56, 9 January 2024 (UTC)

Are you reading my mind? These were similar to what I wanted to remove from the lead.

• The second one I'm least certain about.. I think non-viral triggers are quite important, even if some ME/CFS researchers like Maureen Hanson are not sure about whether they exist..
• The drug rintatolimod is insufficiently studied to be included imo, and is described as experimental in MEDRS.
• The lonelineness and alienation is not included in the body. Is it possible to move that paper to the body rather than delete it? —Femke 🐦 (talk) 11:07, 9 January 2024 (UTC)

Agree on all. Toward concision, I did think perhaps the trigger sentence could add a phrase to capture your point, something like, "ME/CFS often, but not always, starts after a flu-like infection". But I don’t object to retaining the second sentence if you and others think it should be spelled out more completely. Innisfree987 (talk) 12:33, 9 January 2024 (UTC)

• • • My thoughts about changing sentence wording for brevity.
    • Lengthy flare-ups of the illness following minor physical or mental activity, known as post-exertional malaise (PEM), is the hallmark symptom of the illness. The preamble can go, and combining the sentences make things a bit simpler. I don't think "relatively" adds because it isn't defined what it's relative to. Also, I thought exertion was going to substitute for activity?
    • Drop The severity of ME/CFS varies considerably., but keep, People with mild ME/CFS may be able to work and do other daily tasks. It goes with the next sentence to show the spectrum of illness, but it doesn't need the management part about activities.
    • the physical, trauma or psychological stress I am uncertain about keeping or moving. I think it could be condensed with the previous sentence if it is decided to keep it.
    • the third bullet point above can go as there are few people with ME/CFS in the United States that even have access to it. 40 people with Long Covid are supposed to receive it for 12 weeks with the Phase II AMP-518 trial concluding at the end of 2023.[3]. The fourth point could be moved somewhere else. Ward20 (talk) 13:19, 9 January 2024 (UTC)

      Ok for starters I’ll cut rintatolimod from the lead. Innisfree987 (talk) 13:37, 9 January 2024 (UTC)

      If keeping the bit about mild patients, I would prefer activity management also stay, so it’s still aimed at explaining how the disease affects them. Innisfree987 (talk) 13:40, 9 January 2024 (UTC)

The severity of ME/CFS varies considerably. People with mild ME/CFS may be able to work and do other daily tasks while carefully managing their activities.[13]

I like this (I added it!) but removing The severity of ME/CFS varies considerably. would shorten the lead while preserving the original meaning.

In some people, physical trauma or psychological stress may also act as a trigger.[14]

This isn't among the most important facts, so let's drop it.

and the drug rintatolimod may help some.

Definitely cut, Ampligen is only approved in Argentina and I don't think it's even being used there.

and can also lead to loneliness and alienation.

Move to body for sure. The Quirky Kitty (talk) 19:57, 9 January 2024 (UTC)

People with mild ME/CFS may be able to work and do other daily tasks while carefully managing their activities.[13] is no longer in the lead. There appears to be equal support for keep or removal. It would be a help if new editors would add to the discussion. Ward20 (talk) 23:27, 10 January 2024 (UTC)

Moving loneliness and alienation to the body

Concerning moving and can also lead to loneliness and alienation.[4] to body. after rereading The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, significant material is presented in the review. The article describes how ME/CFS as a chronic condition can affect a person's mood, anxiety, loneliness, isolation and other stressors that play a part in a person with ME/CFS' sense of well-being and quality of life. The following is a concept outline only:

Under the section Pathophysiology

New Subsection Mental health and social well-being (synonym for psychosocial, but we don't have to label it that.)

Roughly, burdens include, but are not limited to skepticism and disbelief from associates, family or professionals, PEM and symptoms causing loss of function affecting schooling, job performance, economic security, socialization, physical activities, recreation, life goals, feelings of loss of self, large increases in self-care energy and time expenditure, and strained family, caregiver and peer relationships. "Physical suffering and distress plunge the body into a state of continuous stress that" diminish the persons well-being in mood and physical health.

Under Management

New subsection Mental health and social well-being

Maintaining contact with life, empathy from healthcare providers, professional counseling, peer counseling, support groups (“finding other people in the same situation as you, with the same struggles and daily trials makes one feel less alone... and helps alleviate feelings of isolation and loneliness”, spirituality and introspection (mindfulness?) versus isolation.

Ward20 (talk) 08:45, 10 January 2024 (UTC)

The term pathophysiology has a very specific meaning, namely what is different in the processes in the body (physiology) related the the illness (pathology). Mental health does not fit in that category (even for mental health conditions like Generalized anxiety disorder and major depressive disorder that's not in that section).

I'm mainly looking at these two FAs – Tourette and dementia with Lewy bodies – as two articles I get inspiration for structure. Tourette is most interesting here. In Tourette we have the section "signs and symptoms" renamed as "characteristics" with co-occuring conditions as one subheading. I was thinking of restructuring our signs and symptoms with a similar subsection. (I'll share more ideas on this section later when other discussions have finished).

In terms of management, why would you want to add something like 'mental health and social well-being' in addition to councelling? Would be better to combine that right?

The source is published in an MPDI journal, which is case-by-case for reliability. I've not yet checked if it is reliable. Have you double checked? There is an FAQ (Q8) that can help us determine reliability. —Femke 🐦 (talk) 19:57, 10 January 2024 (UTC)

Responding to the comments above, the following wording is not intended to be introduced in the article.

Using the definition of Pathophysiology from Encyclopedia of Behavioral Medicine pp 1443–1445[5]:

Pathophysiology (consisting of the Greek origin words “pathos” = suffering; “physis” = nature, origin; and “logos” = “the study of”) refers to the study of abnormal changes in body functions that are the causes, consequences, or concomitants of disease processes.

ME/CFS causes major changes in a person's ability to function and how society interacts with the person. These changes affect Mental health and social well-being as described above. The biochemistry of the changes within the brain are not known, but the resulting behaviors are documented.

I don't understand, Generalized anxiety disorder and major depressive disorder have Pathophysiology sections.

If understand correctly, this topic could be described as Co-occurring conditions under Signs and symptoms. I agree with that. I think one problem is that behavioral articles use psychosocial jargon to describe these issues and the wiki article should describe it without jargon.

Councelling is only one component of the Management for Mental health and social well-being.

I did not check until it was mentioned. The MPDI journal Healthcare[6] is peer reviewed with an impact factor of 2.8. Not great, but not awful either. The material could be better sourced if there's a consensus it's worth pursuing.

Ward20 (talk) 23:14, 10 January 2024 (UTC)

Right, pathophysiology refers to what changes in the body are involved in the primary illness—the secondary effects of how society responds and what impact that has are not pathophysiology. Innisfree987 (talk) 23:39, 10 January 2024 (UTC)

Pathophysiology can be a biological response to societal stress too, think Post traumatic stress syndrome. How society responds can be an illness cofactor to mood, anxiety, hyper vigilance, which can effect immune response too. From what I understand from the definition above, pathophysiology is the mechanisms and consequences to the body of the total scope of the disease process. Ward20 (talk) 02:54, 11 January 2024 (UTC)

THe journal is indexed by Scopus, which says it's a middle-of-the-road in terms of citations for the field of health policy, so not great. It's a review on the social aspects of ME/CFS, and barely scratches the surface on anything to do with biology. The combination meh journal + the fact pathophysiology is not within the expertise of the authors (education for one, the other in the psychology of loneliness), makes me very uncomfortable to use it in that section.

The CDC does make the connection between physical or emotional stress having an effect on the endocrine system. We could say something like that.

What I would propose, is that we keep the councelling subheading in the management section, but also include a section on caregiving. If sources exist that is. This would be somewhat similar to Dementia_with_Lewy_bodies#Caregiving, and can describe the social isolation and how caregivers can help. —Femke 🐦 (talk) 19:12, 11 January 2024 (UTC)

I'd like your text to be included, but not an the pathophysiology section. Under a subheading of signs and symptoms would likely be the best place to put it. The Quirky Kitty (talk) 03:10, 12 January 2024 (UTC)

Inclusion of Very Severe Patients

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

Fully agree. After the article rename request (launching tomorrow), I plan to propose a full rewrite of signs and symptoms, which would include a description of this group of people (under a subsection "grades of severity" or something). In management, I'd like to add a section on (family) caregivers, focusing on severe and very severe cases. What are PCP? —Femke 🐦 (talk) 20:34, 18 January 2024 (UTC)

Sounds great. PCP abbreviates primary care provider. Innisfree987 (talk) 00:46, 19 January 2024 (UTC)

Strong support. There is very limited coverage of very severe ME/CFS and no mention of death from it, which is rare but occurs. We should add what can be supported by reliable sources. The Quirky Kitty (talk) 06:40, 19 January 2024 (UTC)

Requested move 19 January 2024

Chronic fatigue syndrome → ? – -->

• 1a: Chronic fatigue syndrome → Myalgic encephalomyelitis/chronic fatigue syndrome
• 1b: Chronic fatigue syndrome → ME/CFS
• 2: Status quo

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

• IQWiG in Germany use ME/CFS in their 2023 clinical guidance (the German report has the name full-out)
• NICE in the UK use myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome in their 2021 clinical guidelines.
• In the US, the Institute of Medicine use myalgic encephalomyelitis/chronic fatigue syndrome in their 2015 report. The CDC uses this too, as well as the NIH

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

• Support 1a as proposer, 1b as second choice. I was surprised to see this article not named myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) when I was working with long COVID literature, and my search of quality sources on ME/CFS gives me a similar result: The compromise name myalgic encephalomyelitis/chronic fatigue syndrome is the standard name in high-quality MEDRS sources.
  I did a an analysis on what sources say themselves about the terminology. Most indicated a problem with the old name. CFS is seen not only as simplistic, but some patients see it as derogatory too. Finally, given the possible confusion between chronic fatigue (a symptom), and "chronic fatigue syndrome", ME/CFS is a more precise name. —Femke 🐦 (talk) 19:55, 19 January 2024 (UTC)

  Your analysis is very thorough, Femke. Thank you for putting it together. The Quirky Kitty (talk) 09:36, 23 January 2024 (UTC)

• Support 1a or 1b per nom. It's the term clearly preferred by major health organizations like CDC, NIH, and NICE. Skimming the last move review, it looks like there was some concern that ME/CFS isn't a very good name for this syndrome. Which, like, sure, I think we all agree on that. But it is still the name being used most widely and prominently to refer to the condition. So it's the appropriate title for us to use here. As to whether to use the initials or spell it out, I don't have a strong opinion. Ajpolino (talk) 20:37, 19 January 2024 (UTC)
• Support 1a or 1b, per the guidance on most commonly used name in recent high-quality medical sources. To the sources already cited, I’ll add that Mayo Clinic Proceedings’ 2021 and 2023 reviews both use myalgic encephalomyelitis/chronic fatigue syndrome in the title and abbreviate it as ME/CFS in the text. Innisfree987 (talk) 06:08, 20 January 2024 (UTC)

  On reflection, I think I have a slight preference for the abbreviation. To respond to @Oski’s point, this seems more like using HIV/AIDS instead of human immunodeficiency virus/acquired immune deficiency syndrome than it is like using MS instead of multiple sclerosis. However spelling it out is definitely also preferable to me over the current title, which does not reflect the literature. Innisfree987 (talk) 16:11, 22 January 2024 (UTC)

• Support 1a or 1b with slight preference for 1b, but redirects will send people looking for the abbreviated name to the correct place if 1a "wins". Little pob (talk) 17:28, 21 January 2024 (UTC)

• Support 1a. Abbreviations as page titles of medical conditions are best avoided when the unabbreviated name is also in use. Compare for example multiple sclerosis, which is commonly referred to as "MS", but the wikipedia page is titled Multiple sclerosis. Oski (talk) 01:15, 22 January 2024 (UTC)

• Support 1a or 1b with preference for 1a per discussion by Oski. Most of the national guidelines and WP:RS citations in the article now use the nomenclature Myalgic encephalomyelitis/chronic fatigue syndrome. Ward20 (talk) 05:01, 22 January 2024 (UTC)

• Support 1b or 1a, favoring 1b. Femke's reasoning is on-point. Here's why I agree, cut down from my comment in a previous discussion. I'll use ME/CFS to refer to either for brevity. ME/CFS is more precise, is used in the overwhelming majority of authoritative sources, and better follows Wikipedia's general and medical title guidelines.

The general guidelines tell us, Generally, article titles are based on what the subject is called in reliable sources. Under this criterion, ME/CFS is a much better option. The guidelines also say to consider precision, among other points, and ME/CFS is much more precise. CFS is easily conflated with chronic fatigue.

The medical guidelines say, The article title should be the scientific or recognised medical name that is most commonly used in recent, high-quality, English-language medical sources, rather than a lay term (unscientific or slang name) or an historical eponym that has been superseded. This strongly favors ME/CFS. They also recommend using the ICD-10 and DSM-5 for resolving regional naming disputes, though it's broadly applicable here. The ICD-10 uses ME and post-viral fatigue syndrome (Source), while the American ICD-10-CM seems to use ME/CFS first. (Source)

And as @Femke noted, CFS is a less neutral term, as it is commonly used by people who deny the scientific consensus that ME/CFS is a serious biological condition. Further, most patients consider it trivializing.

Considering these things, let's move to 1a or 1b. I will think about whether I prefer Myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS.

I prefer ME/CFS to the acronym spelled out. ME/CFS is concise, spelled out is unwieldy. ME/CFS is distinct enough that it won't be confused with other things like MS could. As @Innisfree987 explained, it's more like HIV/AIDS. So I prefer 1b to 1a, but I strongly prefer both over the status quo. I wouldn't be disappointed at all if we went with the longer title. The Quirky Kitty (talk) 08:46, 23 January 2024 (UTC)

Support 1a or 1b. Difficult to favor one over the other but ultimately it should be what most closely reflects the highest quality sources within the bounds of medical accuracy, I would think. There are any number of loopholes where one guideline conflicts with another, but this move is long overdue. I still can't fathom that editors successfully argued against this proposal as late as a year ago, but hopefully that's in the past even though I do still wonder if we'd have seen a similar course of inaction on any other medical illness. I won't belabor the point but the CDC is arguably the most significant entity in the larger discussion and the relevant section of their website changed from "CFS" to "ME/CFS" in July 2017.

My personal preference is not relevant here but I believe @The Quirky Kitty's reply above mine offers a logical and reasonable argument for 1b. NeurastheniaMilkshake (talk) 04:44, 26 January 2024 (UTC)

I'm most surprised that we've gone from roughly 50-50 to unanimous support. The Quirky Kitty (talk) 06:48, 26 January 2024 (UTC)

Proposed restructuring signs and symptoms

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

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

Severity

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

• People with mild ME/CFS can usually still work and care for themselves, but will need their free time to recover from these activities, rather than engaging in social and leisure activities
• Moderate severity results in a large reduction in activities of daily living (self-care activities, such as feeding and washing oneself). People are usually unable to work and require frequest rests.
• People with severe ME/CFS are homebound and can do only limited activities of daily living.
• In the very severe group, people are mostly bedbound and cannot independently care for themselves.

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

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

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

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

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

Proposed text looks good to me.

(3)

Q1 I support include, it can always be reworked later, if need be.

Q2 I would say the Epidemiology section.

Q3 Could double cite this paragraph. NICE guideline NG206 supports all but the PEM sentence. Ward20 (talk) 06:02, 22 January 2024 (UTC)

References

Deconditioning

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

Given that deconditioning plays a role in almost any severe disease, I'm uncomfortable with adding it there without context. —Femke 🐦 (talk) 17:16, 26 January 2024 (UTC)

Thanks for bringing it here for discussion. I agree with Femke and so have removed it for now. That’s a very brief article which IMO would need a great deal of expansion before the secondary effects of deconditioning on ME could be mentioned without a significant issue of undue weight. That is, if the topic were ever significant enough to the medical phenomenon of deconditioning to rate a mention—I’m not sure it is. Innisfree987 (talk) 17:59, 26 January 2024 (UTC)