I think the text on PEM focuses too much on activity as a trigger, rather than exertion and exceeding one’s energy budget. For example, being in a noisy, bright space with too many stimuli can also cause PEM even if the patient is lying still and doing no activity (e.g. a hospital visit). On the other hand, some activities may not cause PEM if people manage to stay within their 'energy envelope’. The current text might be misinterpreted as if people with ME/CFS experience PEM after each minor activity, which certainly isn’t the case. It mainly tends to happen if you exceed a certain energy expenditure, while activities below that threshold may not cause PEM. The whole point of pacing, after all, is trying to stay as active as possible and avoiding PEM by staying just beneath that threshold.
I think the text on PEM focuses too much on activity as a trigger, rather than exertion and exceeding one’s energy budget. For example, being in a noisy, bright space with too many stimuli can also cause PEM even if the patient is lying still and doing no activity (e.g. a hospital visit). On the other hand, some activities may not cause PEM if people manage to stay within their 'energy envelope’. The current text might be misinterpreted as if people with ME/CFS experience PEM after each minor activity, which certainly isn’t the case. It mainly tends to happen if you exceed a certain energy expenditure, while activities below that threshold may not cause PEM. The whole point of pacing, after all, is trying to stay as active as possible and avoiding PEM by staying just beneath that threshold.
: I've added the example of the stimulating environment. In the main descriptions of PEM I'm relying on (NICE, BMJ, IQWiG, CDC), the energy envelope aspect isn't mentioned. Happy to add it if you know of a good source though. [[User:Femke|—Femke 🐦]] ([[User talk:Femke|talk]]) 19:17, 23 May 2024 (UTC)
: I've added the example of the stimulating environment. In the main descriptions of PEM I'm relying on (NICE, BMJ, IQWiG, CDC), the energy envelope aspect isn't mentioned. Happy to add it if you know of a good source though. [[User:Femke|—Femke 🐦]] ([[User talk:Femke|talk]]) 19:17, 23 May 2024 (UTC)
:Any of the references here help? - https://me-pedia.org/wiki/Energy_Envelope_Theory
:New NHS e-learning resource out as of a few days ago, it uses the term as well - https://learninghub.nhs.uk/catalogue/mecfselearning
:You can register as a 'service user' and get access, or the text is available here - https://meassociation.org.uk/2024/05/nhs-england-launches-new-e-learning-module-on-me-cfs/ [[User:Ilike2burnthing|Ilike2burnthing]] ([[User talk:Ilike2burnthing|talk]]) 02:38, 24 May 2024 (UTC)
'''‘The decline often presents 12 to 48 hours after the activity’'''
'''‘The decline often presents 12 to 48 hours after the activity’'''
Revision as of 02:38, 24 May 2024
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A fact from Myalgic encephalomyelitis/chronic fatigue syndrome appeared on Wikipedia's Main Page in the Did you know column on 12 April 2024 (check views). The text of the entry was as follows:
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.
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]
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]
Lead image
The lead image is not great. I see the following disadvantages:
It's not accessible/readable. There is too much text
It contains so much detail that we don't even discuss is in the body, nevermind the lead. There is little use in teaching readers about Australian or Oxford criteria, as both have been retired for while.
I've not been able to find a good alternative on Commons, but I'm willing to make one in Inkscape if you guys are open to changing the lead image. I see the following options:
No image in lead
A list of symptoms using the annotated upper torse of a women. This is tough as most core symptoms are of course systemic / brain ones. An example would be [1]. I would adjust these to be in line with the list of symptoms HQRS mention, so for instance not including sex drive or vision problems, but include joint pain instead. There is an example for fibro, even though I don't quite understand the difference between central and systemic they included. Compared to the fibro case, I would propose we include fewer symptoms.
An image using NICE or IOM criteria. NICE will be easier as 4 symptoms is easier to visualise than 3+2. This could be something with only words, or something with easy icons like [2], but I would propose we use names too.
I agree the Image of the definitions in the info-box space is too busy to easily read. Although, I think that image could be enlarged and located appropriately in the body.
I don't have strong preferences, but I'll put out a few thoughts about the info-box and the possible image in it.
The long list of alternate names at the beginning of the infobox adds to the complexity. It might be better to just add a link to those, or just add Post-viral fatigue syndrome and then link to the others.
I Google searched ME/CFS images, graphs and charts.[3][4] and found the following types of images to be the most interesting. They don't have to be from the data shown, and are in no particular order:
A simple balloon depiction of the diagnostic symptoms, either CDC or NICE.[5]
Oh, I rather like that balloon depiction. Which would be in line with Femke’s suggestion #3. I think displaying that information concisely would really serve the reader who’s encountering all this for the first time. Innisfree987 (talk) 06:44, 19 March 2024 (UTC)[reply]
I'll make two (ugly) paint mock-ups with the balloons with and without some type of icon. I like icons, but I do realise that the choice of them is rather subjective. —Femke 🐦 (talk) 17:32, 19 March 2024 (UTC)[reply]
My first attempt would be the following. Don't respond to the "design bit" yet. . I would like feedback on:
The choice of images. PEM is particular is very broad. I've gone back to the initial ME description by Ramsay focussing on the muscle part of PEM (muscle fatiguability with long restoration time). I think I'd prefer a bed instead of zzz, but was lazy. Brain fog images online often have a cloud in the brain, but that depicts dreaminess for me.
The choice of words. Two ones I'm least sure about:
Severe fatigue --> It may weaker than debilitating fatiguability that NICE uses, but that's horrible jargon
Worsening after activity --> PEM is a poor word choice for PESE, and jargon. I think this captures it best in 3 words or less..
I think worsening after activity is a pretty good way to dejargon PEM/PESE! Could severe fatigue be something like easily fatigued? Just brainstorming, not wedded. I realize it’s not a noun tho. And maybe understates the case. Innisfree987 (talk) 22:48, 20 March 2024 (UTC)[reply]
Rather than use the battery icon with fatigue, I would use it with "reduced ability or function". Fatigue is one thing, but the overall illness impact on the "significant reduction of functional ability" is more important IMO. That is a major criteria in both CDC and NICE and fatigue is kind of tacked on after. Could also use lasting or lengthy as a further modifier?
Alternatly, brainstorming: "debilitating fatigue" or "overwhelming fatigue" or "profound fatigue" or "draining fatigue" or "exhausting fatigue" or "exhaustion" or "debilitating exhaustion". Could also use lasting or lengthy as a further modifier?
More brainstorming: "sleep disruption" or "sleep disturbance" or "disrupted sleep".
I'm very happy with profound fatigue, that captures the fatigue better without resorting to jargon.
In the IOM criteria, fatigue is tacked on after: A substantial reduction or impairment in the ability to engage in pre-illness levels of activity (...) that is accompanied by fatigue meeting four criteria
NICE didn't quite like that (Evidence D p49). They separate symptoms (debilitating fatigue, PEM, Unrefreshing sleep and cognitive difficulties, Box 2) from impact (these together most cause significantly reduced "ability to engage in occupational, educational, social or personal activities".)
Can you explain better why disrupted sleep is the better option? I believe that unrefreshing sleep (from NICE) captures a wider set of problems. Not only the sleep quantity (which can be disrupted) but also the quality (sleep 9 hours, still feel shit). —Femke 🐦 (talk) 17:14, 22 March 2024 (UTC)[reply]
I like profound fatigue over severe fatigue because it sounds more abnormal, which is more correct.
You're right about NICE Evidence D p49, and NICE Guidance ng206 [10] on pg 11 agrees also. Like I explained, reduced activity levels seemed to me a more important criteria that encompassed a number of symptoms. The way different sources present it, it seems correct either way. Either would be OK with me. Although, it seems if using NICE criteria, another box or balloon should be added for "reduced activity level".
I thought Sleep Problems was too vague. "Unrefreshing" does capture the sleep quality better, but still sounds like a normal occurrence, and not like "(sleep 9 hours, still feel shit)", which is an excellent depiction. To me "disrupted" sounded like a more abnormal occurrence. There are so many different persistent issues with sleep that are abnormal, it's hard to capture in simple terms. That's the best response I have right now. If I think of alternative wording I will add later.Ward20 (talk) 23:36, 22 March 2024 (UTC)[reply]
I'm happy to compromise on disrupted sleep, as some sources do use this terminology.
In terms of adding another box, this will likely make the text smaller and pose a problem for accessibility. The infobox figure is rather small. More importantly, within the NICE diagnostic criteria, the functional impairment is named in a list of (1) illness duration (2) functional impairment and (3) exclusionary conditions. To me, it doesn't logically fit into a simple figure of main symptoms. —Femke 🐦 (talk) 13:16, 23 March 2024 (UTC)[reply]
Excellent point about the space and the way NICE presents their main symptoms. Maybe the infobox caption should read:
Symptoms, NICE criteria: Minimum duration; adults 6 wks., children 4 wks., significantly diminishes abilities, not caused by a different illness.[11]
This might also cause some confusion between the NICE definition in the infobox and the CDC definition in the Signs and symptoms section. Maybe change the section to the NICE criteria. Ward20 (talk) 18:25, 23 March 2024 (UTC)[reply]
I think it's good to mention NICE criteria. One of the complications there is that they distinguish between suspecting ME/CFS (6 weeks), and diagnosing it (3 months). I think the 3 months makes more sense to mention, partially because 6 weeks is so different from most other criteria. I like mentioning both duration + impact in the caption, but I think exclusionary conditions are too much detail?
About the signs and symptoms section, we can also not repeat the CDC definition in that section. We already talk about this in prose in the diagnostic criteria section, where it fits more logically. This is similar to the strategy at fibromyalgia. —Femke 🐦 (talk) 18:33, 23 March 2024 (UTC)[reply]
Good suggestions, and I like the way you worded the durations. The 6 and 4 weeks is important since the earlier the treatment, the better the chances of improvement. This fits in two lines in the present infobox:
I quite like it. Feel free to gloss over my request since I’m late to the debate, but the only thing I would change is the image for PEM, I think it narrows pem down too much and fails to capture how broad it is. Maybe something ressembling a downwards graph could work better, think of this emoji 📉 (with maybe a flattening at the bottom). YannLK (talk) 20:05, 14 April 2024 (UTC)[reply]
Yes I tjhink so. I like the all caps captions similar to the 1st image above because it is easier to read and is more aesthetically pleasing. Also, a minor point, I missed the black fog in the head at first because the black on blue blends in a bit (but I have old eyes). Is there a way to make that more noticeable? Ward20 (talk) 20:16, 14 April 2024 (UTC)[reply]
Brilliant. I've asked for permission to overwrite the file on Commons, but what I've done so far is:
Make the blue slightly lighter so that the brain fog is clear
Make the font size larger (if that still doesn't work, we can always go for capitals). For me, it's less pleasing in caps, but I take your point on readability
Make the image more square (which fits better in the infobox).
I like the idea of a crash, but I wonder if that doesn't make PEM too abstract. With the weakness as an element of PEM, I feel like it implies other elements too? You're typically only weak / frail when you're ill. —Femke 🐦 (talk) 16:46, 16 April 2024 (UTC)[reply]
I've put the image in the article, as it's an improvement over what was there before. Of course happy to continue tweaking it. My current thoughts:
The text is still on the small side. I've increased the font size and cut off the empty space on the sides (infobox padding is more than enough). Should I go back to caps?
I can make a derivative work with the crash as YannLK proposed, and see who prefers what?
I can add the PEM abbreviation to the second image? Or reword as "crashes" after activity?
Hadn't been following this thread at all (apologies), just popping by to say I love the new image. Articles like this are always challenging to illustrate. This is a big leap forward from the prior image, which I'm guessing most readers would just skim by (which is not to cast shade on that image, it's just challenging to illustrate something meaningful about diseases without clear surface symptoms!). Ajpolino (talk) 21:45, 17 April 2024 (UTC)[reply]
Pre-FAC comments from Ajpolino
Hi all, Femke asked if I could review the article with an eye towards getting it through FAC. I'll post comments as I go. I'll start with the "well-written" criterion because it's the easiest one to assess, and will add comments on the other criteria as I go. I've just made it through Signs & symptoms so far. I do think the FAC folks are sticklers for prose (no doubt because everyone can assess it) so apologies for the number of comments. Of course, these are just my opinions:
1a. Well-Written:
Lead - People with ME/CFS experience delayed worsening of the illness after minor physical or mental activity, which is the hallmark symptom of the illness - confusing to read for two reasons: (1) delayed worsening? Can we be more clear about what that means? (2) "worsening of the illness" is not very meaningful since I don't yet know what the illness is like.
I agree. Taking inspiration from your your December suggestion, I propose Minor physical or mental activity worsens symptoms, usually after a delay of hours to days, and recovery from these characteristic crashes can take days to weeks.. In the linked discussion, there was a no consensus for putting this symptom last (2 vs 2). We didn't talk about how the last sentence in a paragraph is usually the second-most read one by people skimming the text. So, putting it last will increase rather than decrease the attention for this sentence. —Femke 🐦 (talk) 19:48, 31 March 2024 (UTC)[reply]
It is important to mention in the lead that PEM does not only lead to worsening of symptoms but also worsening of functional capacity (PEM threshold), which in itself is usually more disabling. I think "delayed worsening of the illness" captures this well, but obviously I understand this phrasing has problems. I Would be against only referring to worsening of symptoms
I think it is also important to mention that there is no set time that "crashes" improve, most last days or weeks, but they can last months or years, the phrasing "days, weeks, months or longer" works well for this case.
Lead - Other core symptoms... and sleep disturbances I gather you mean this as "Symptoms are A, B, and C". It could also be read "Symptoms are A, and B that does not improve with A and B. It can be made bullet proof by just rearranging the list items.
Lead - The root cause(s) of the disease are unknown, and the mechanisms are not fully understood besides being redundant, "the mechanisms are not fully understood" is basically another version of further research is needed.
The distinction I tried to make here is between what triggers the illness and the pathophysiology of the once people are ill. Upon reflection, I don't think the 2018 CDC source is the best. With COVID-19 triggering ME/CFS, newer sources may describe the uncertainty around the cause differently. I'll have a dig. —Femke 🐦 (talk) 08:02, 31 March 2024 (UTC)[reply]
Lead - for instance, after mononucleosis. is mononucleosis a particularly common trigger? If not, it can be cut. We can think of flu-like illnesses (the flu comes to mind) without an example. If yes, reword to make that clear.
Yes, it is likely the most common trigger (at least before COVID, we don't have data yet comparing COVID and mono case numbers). —Femke 🐦 (talk) 08:02, 31 March 2024 (UTC)[reply]
Lead - A genetic component is suspected reword per MOS:WEASEL
I disagree here. I think this is a good way to indicate that no appropriately sized GWAS has been completed, but that there is good indirect evidence via relative risk for family members. Attributing this would not make much sense, given that I don't think this is controversial. —Femke 🐦 (talk) 10:46, 31 March 2024 (UTC)[reply]
Just one gentle follow-up: If that's what you want to get across I might say something like "ME/CFS can run in families, though the genes that contribute to ME/CFS risk are not known." Your call of course. Ajpolino (talk) 21:10, 20 April 2024 (UTC)[reply]
Lead - because no confirmed diagnostic unless there are "unconfirmed" tests you're explicitly excluding here.
Lead - Symptoms and severity of the illness can fluctuate significantly over time feels like this should be at the end of paragraph one? Ditto About a quarter... can cause social isolation. All seem to be about symptoms rather than recovery.
The second example has moved repeatedly between paragraph 1 and 3. User:Ward20, can we use this as a WP:third opinion and move it back to paragraph 1? For the first example, that is a symptom description when talking about short-term fluctuations, and related to remission when talking about longer-term fluctuations. As it's written now, it feels more short-term, but I wonder if we can restore wording that makes it relate to remission. —Femke 🐦 (talk) 08:09, 31 March 2024 (UTC)[reply]
I agree it makes sense to move it back to paragraph 1, at least short term, and have no objection to edit as necessary. Ward20 (talk) 08:33, 31 March 2024 (UTC)[reply]
Ah. I didn't examine the issue close enough. The fluctuating part of the illness is actually not a diagnostic sign or major symptom such as those described in the first paragraph. Yes, a stable change is better, but just swapping it into the first paragraph seems to be a mismatch. How about dropping the first two words, The severity of the illness can fluctuate significantly over time... This fits the third paragraph better and leave it where it is? I would leave About a quarter... where it is also. Ward20 (talk) 11:51, 31 March 2024 (UTC)[reply]
How do you suggest we balance the paragraphs instead? Our third paragraph has no focus at the moment really (prognosis, epidemiology, illness impact and management). My preference is to move some of the text to the first paragraph, but I'm happy to rescope the slightly odd fourth paragraph too. —Femke 🐦 (talk) 12:47, 31 March 2024 (UTC)[reply]
Lead - Before the COVID-19 pandemic... surprising to read. I assumed the next sentence would tell me what happened during/after(?) the covid pandemic, but it didn't. Is there some reason to make this distinction?
About 15-50% of people with long COVID meet the diagnostic criteria of ME/CFS. Sources are a bit contradictory in saying whether these people have ME/CFS, or whether the two should be considered separately. If they have ME/CFS, an OR back-of-the-envelope calculation would conclude that 50% to 95% of people with ME/CFS developed it after a COVID infection. I've added the ambiguous text often found in sources to the lead (saying that people meet the criteria, rather than that they have it). The cited source says is one that says they do have ME/CFS. —Femke 🐦 (talk) 09:09, 31 March 2024 (UTC)[reply]
Lead - comparable diseases I assume you mean diseases of comparable impact? Is there a way to make that clearer? Prostate cancer and testicular cancer are "comparable" diseases in many ways (invasive cancers of the male urogenital tract), but they're funded unequally because prostate cancer kills ~50 times more people.
I've changed it to diseases of comparable impact, good suggestion. I tried to avoid jargon like "comparable disease burden". Most comparison are made per DALY/QALY, but a comparison with multiple sclerosis is also common, as symptomatology overlaps quite a bit. —Femke 🐦 (talk) 10:37, 31 March 2024 (UTC)[reply]
arbitrary break for editing 1
Classification - Even though... neuroimmune condition seems like it should go after the ICD-11/ICD-10 info (also I'd flip the order of the ICD-10 and ICD-11 material). I.e. move the "official classification" stuff together.
Done
Signs & symptoms - The illness causes debilitating fatigue, sleep problems, and a pattern of getting worse after even mild activity. Similar to the first point, can you clarify this? Do just the fatigue and sleep problems worsen? Everything?
Signs & symptoms - lead to sudden weakness, difficulty with coordination, and clumsiness - reorder (do they have difficulty with A, and B? Or do they have sudden A, B, and C).
Signs & symptoms - Persons is an uncommon plural. I know people have uncommon reasons for using it, but I admit I'm not much familiar with them. Is there a reason to use it here?
Signs & symptoms - Persons with the illness experience... "physically drained" I don't feel the quote sentence adds anything to my understanding that I didn't already pick up from the rest of the section. I'd cut it (or reformulate so it adds something about the condition that medical terms can't cover).
Signs & symptoms - Accompanying cognitive fatigue also decreases the ability to function as they had pre-illness. should this be in the "cognitive dysfunction" subsection below?
Reworded to overlap less. Cognitive fatigue is quite central in the description of fatigue in ME/CFS, but the impact of cognitive difficulties more broadly can be described in that section. —Femke 🐦 (talk) 19:06, 31 March 2024 (UTC)[reply]
Signs & symptoms - The PEM subsection mentions several symptoms that are introduced later in the section. Should that subsection be moved later? Honestly, I think the repetitiveness would be most easily reduced by merging several subsections instead of splitting each major symptom into its own subsection, but I'll leave that as a gentle suggestion for you to consider.
Given that PEM is the cardinal symptoms, I would like to keep it first. Thanks to your comments, the symptoms cover 8 paragraphs, which is still a bit too much for merging the subsections all together. I can't think of a good grouping, given that the diagnostic criteria differ on core and supportive syptoms. —Femke 🐦 (talk) 12:38, 5 May 2024 (UTC)[reply]
Signs & symptoms - "crashes" or flare-ups should both be in quotation marks?
Signs & symptoms - might foreshadow a prolonged relapse Not sure I understand what this means. When I think "relapse" I think of disease returning, but in this context when someone has PEM hasn't their disease already returned?
Our Wikipedia article relapse is quite poor to clarify. The Oxford dictionary says: (of a sick or injured person) deteriorate after a period of improvement.. A relapse here usually means somebody going (back) from mild to moderate, or from moderate to severe. —Femke 🐦 (talk) 19:06, 31 March 2024 (UTC)[reply]
Signs & symptoms - All types... or emotional suggest shortening to just "Physical, cognitive, social, or emotional events can all trigger PEM."
I think there is added value to emphasizing energy, as this may not be an immediate association with social or emotional activities. —Femke 🐦 (talk) 12:38, 5 May 2024 (UTC)[reply]
Signs & symptoms - Examples are... a shower I don't think the examples are helpful.
Signs & symptoms - Sleep is often described as unrefreshing largely redundant to However, even a full night's sleep is typically non-restorative below. I'd suggest cutting the first sentence as I think things flow nicely with just the second.
Signs & symptoms - I don't have access to the source, but is Sleep apnoea may be present as a co-occurring condition important? Are they particularly likely to co-occur?
Signs & symptoms - this is a fine line of course, but my personal opinion FWIW is that However, many diagnostic criteria state that sleep disorders must be excluded before a diagnosis of ME/CFS is confirmed. is unnecessary here and is best left to the Diagnosis section.
Signs & symptoms - a small thing but in 50-80%... are estimated to have... with cognition I presume it's the 50-80% number that's the estimate? If so, I think the sentence is clearer if you say something like "An estimated 50-80%..." or "Up to 80%...". Current wording sounds like they're estimated to have cognition problems.
Signs & symptoms - Simple and complex information-processing speed and working memory functions, over long time periods, are moderately to extensively impaired. had to read this twice to comprehend it. Could we simplify it? "Information-processing speed and working memory can be extensively impaired"?
Signs & symptoms - do not appear to be significantly altered is scientist speak. In the normal world we'd say "are not altered" or something to that effect.
Signs & symptoms - Patients who report... language-processing complaints - the two halves of this sentence don't build on each other. Perhaps they should be separated? Also MEDMOS recommends against using "patients". It's not a strict rule, per se, but I feel "patient" rings of medical literature instead of general encyclopedia.
Done. Have removed patients where there is not necessarily a treating doctor throughout. I've rewritten and condensed this whole subsection. The papers are all based exclusevely on older criteria, so I didn't want to go in too much detail, as it's not quite clear if these deficits are similar with modern criteria. Some of the framing in the 2016 paper in particular shows its age, and there were some text-source integrity issues. Had avoided rewriting this, as it the source material is tough to digest. —Femke 🐦 (talk) 14:49, 31 March 2024 (UTC)[reply]
Signs & symptoms - Symptoms, which include nausea, ...by the upright posture. should the two symptom lists be merged?
Signs & symptoms - may also be present, are also described this language also feels very medical textbook to me. I'd suggest rewording.
Done. I wanted to vary on "people with ME/CFS". Dementia with Lewy bodies also uses "individuals with .. ", so have replaced it with that term. I'm not too keen on using "they", as it feels like the reader definitely doesn't have the illness. —Femke 🐦 (talk) 18:46, 31 March 2024 (UTC)[reply]
Signs & symptoms - PEM frequently makes pain worse isn't this true of all the symptoms?
Signs & symptoms - Normally, exercise has the opposite effect, making people less sensitive to pain. I get the contrast you're trying to draw here, but I don't think this is worth stating.
Signs & symptoms - Many, but not all, people with ME/CFS further report... suggest turning this list into a sentence. I feel bulleted lists draw a lot of reader attention, which in this case isn't merited. No rule about that of course, it's just my personal feeling, and could be a me problem.
Done. Also done in a similar situation in diagnosis (where I removed the list completely, and replaced it by different prose). —Femke 🐦 (talk) 16:18, 1 April 2024 (UTC)[reply]
Signs & symptoms - can be divided into is this a common division scheme (if so, say so) or is this Wikipedia's division scheme (if so, I advise against doing this)?
It's a common division scheme, but not a universal one. For instance, the BMJ Best Practice guide introduces it as "A severity spectrum to ME/CFS has been proposed as follows". It's from the 2003 criteria, but has seen quite some use outside of them. NICE and Mayo use the classification mostly as a given fact, so will follow them. I've changed it to are divided. —Femke 🐦 (talk) 15:55, 31 March 2024 (UTC)[reply]
Signs & symptoms - results in a large reduction in filler words. Maybe replace with "impedes"?
Signs & symptoms - A 2015 study... and lung cancer is this due? I get it, ME/CFS very bad. But anyone who got this far in the article already knows that. And this is just one study of ~100 Danish volunteers compared to historical measurements from another study a few years earlier. I'm not saying it isn't valuable, but we're giving it an awful lot of prominence here. Too much?
Causes - Much of the opening material The cause of ME/CFS... 10% of cases as a trigger seems redundant. I'd suggest moving some to Signs & symptoms (The onset of ME/CFS... known infection is useful context for framing the ME/CFS experience) and merging some down into the dedicated Viral infections subsection (Estimates differ on... cases as a trigger.
Causes - If you're not going to split up the material referenced above, It often starts after a viral infection and it often follows an episode of infectious-like symptoms of a known infection are redundant.
Split up: which means I've retained some redundancy, but it's more spread out as not all readers read the entire article. —Femke 🐦 (talk) 13:05, 5 May 2024 (UTC)[reply]
Causes - Is Q-fever a particularly common trigger (in which case tweak the wording to indicate that) or just an example of a bacterial infection (in which case I'd suggest cutting the example; I don't think it will resonate with most readers).
it's more common in Australia. Was one of the early pathogens that was could positively be. identified for causing symptoms, and helps the article not being US & UK centered. (Now thinking it may be outdated and better to cut.) Ward20 (talk) 20:06, 2 April 2024 (UTC)[reply]
It resonated with me as there was a Q-fever epidemic in the Netherlands, which caused quite some political upheaval as long- term effects were initially downplayed. I'm leaning towards keeping it, given it was also important in Australia. —Femke 🐦 (talk) 09:59, 6 April 2024 (UTC)[reply]
Causes#Risk factors - gently suggest condensing the discussion of women:men ratios More women than men... women than in men to something like "... occurs up to four times more often in..." or "between 1.5 to 4 times as many..." as I don't think calling out the differences between some meta-analysis and wherever CDC got their number is particularly interesting.
Causes#Risk factors - It used to be thought that ME/CFS was more common among those with higher incomes. could probably be cut? Reads like you're stuck on an academic dispute that's now settled.
Probably either cut or expanded, it's complicated. In the 80s, when large clusters occurred, most doctors did not know adout the illness. It took large resources to get diagnosed. The media started talking about "yuppie flu" and "burnout". Years later, when community surveillance by telephone was conducted, the understanding changed. However, patients still encounter physicians lack of understanding, and many more people remain undiagnosed than diagnosed. Ward20 (talk) 19:54, 2 April 2024 (UTC)[reply]
Causes#Risk factors - relatives appear to be more like to get "appear to be" is classic academic writing. You could arguablu put it before every fact in an article. But instead, we typically just say "are".
Causes#Viral infections - Highlighting Borna disease virus seems kind of silly. At a quick Google it seems to cause extremely little human disease (unless it goes by an alternative name I didn't think to check?). ECDC says human infections were first demonstrated in 2015, and have effected just a handful of people in close contact with squirrels.
Done removed the sentence. The odd thing is that the primary research cited in the review all came before 2015. All the papers do seem to talk about the same virus. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)[reply]
Causes#Viral infections - Could you move up the fact that infectious mononucleolsis is caused by EBV? You note it at the last mention of EBV in the section. It would be helpful context even just a few sentences earlier.
Pathophysiology - Evidence points to abnormalities... in some people with ME/CFS is another scientist-ism. We might more typically say something like "Some people with ME/CFS have abnormalities...".
Done.
Diagnosis#Diagnostic criteria - Multiple research and clinical criteria exist... what does the "research" part mean? Would just "Multiple clinical criteria..." work?
There is a muddled distinction between research and clinical criteria. Research criteria are typically strict (like CCC), to ensure a more homogeneous population, whereas clinical definitions like NICE and IOM are more inclusive, to not deny care. To make things complicated, clinical definitions are often used in research, which makes research difficult to interpret. I'll see if I can find a good source explaining more on this. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)[reply]
It's more muddled than I thought. In an ideal world, sources describe that research criteria are supposed to be more strict. But other sources explain that in ME/CFS, the opposite is true. Have added a paragraph that avoids talking about this.
Diagnosis#Diagnostic criteria - Would it be undue to give us the list of eight symptoms that are options for a Fukuda diagnosis? Reading "four out of eight other symptoms" my brain wanted to know more.
Since the Fukuda criteria are often considered as outdated and were largely used by researchers who claimed ME/CFS was at least in part psychological I think the idea is to not give it too much space in the article. User:yannlk — Preceding undated comment added 00:08, 14 April 2024 (UTC)[reply]
I prefer not to either, as these criteria are on their way out.. Most of the secondary sources don't mention all eight symptoms. —Femke 🐦 (talk) 08:09, 14 April 2024 (UTC)[reply]
Diagnosis#Diagnostic criteria - The tone is a bit odd in While used frequently... least moderate severity. Are these really "limitations" or just characteristics? Reads as if this is a Wikipedia editor's opinion. If there's due criticism that Fukuda is misguided, can we rephrase to make that clear?
I've explained why these are considered limitations, and removed the second limitation as it's not unique to Fukuda. Sources differ in saying "Fukuda is critizised" vs "Fukuda has limitations". I think saying it's criticised may lead to people asking "by whom?". —Femke 🐦 (talk) 08:09, 14 April 2024 (UTC)[reply]
Diagnosis#Diagnostic criteria - At the beginning I was promised at least five sets of criteria: NICE, IOM, ICC, CCC, CDC. I got CDC, CCC (the strict one), and IOM (for lazy clinicians), but only very brief callouts for ICC (similar to CCC) and NICE (IOM lite?). Is this intended based on the importance of the latter two criteria?
ICC is definitely less used than CCC, so that was intentional. For NICE, the brevity was due to the fact that it's very similar to IOM. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)[reply]
Diagnosis#Diagnostic criteria - I usually like my medicine articles short and sweet, but I admit I left this section feeling like I could've used more detail. I don't know much about the topic, but I'm surprised more coverage of diagnostic criteria isn't due for a mysterious syndrome that folks have struggled so mightily to characterize. Are some of the criteria sets more popular than others? Is the one I'm likely to be diagnosed by entirely dependent on geography?
Per above, I'll make the distinction between research and clinical definitions more clear in the text. There is a geographic bias yeah, with NICE used in the UK, IOM in the US, and a mixture in Europe, including a variation of Fukuda which does require PEM. New Zealand has started recommending IOM's criteria iirc.
I've added a paragraph with the trade-offs of these criteria. I can't find sources explicitly about where which criteria are used most. Historically, Fukuda was the most popular. Sources still say it is, but citing primary sources that predate the uptake of IOM and predate the creation of NICE's criteria. Given that most HQRS are critical of Fukuda, and primary sources I read now often use IOM + CCC, I'm reluctant to make that claim here. Does it work like this? —Femke 🐦 (talk) 10:39, 5 May 2024 (UTC)[reply]
Diagnosis#Diagnostic criteria - The two halves of Separate diagnostic criteria... for children too. seem redundant. I get the distinction, but it doesn't seem important.
Done
Diagnosis#Clinical assessment - Screening can be done using the DePaul... do sources support something stronger than "can be done"? Like "are often done" or "typically relies on"?
Unfortunately not no. The common data elements initiative from the NINDS) has said a paper is in development, which may talk about this. The IOM still had a massive list of questionnaires, but most of these have since fallen in disuse. BMJ only talks about this questionnaire, and the NINDS highlight this one most. —Femke 🐦 (talk) 09:41, 4 April 2024 (UTC)[reply]
Diagnosis#Clinical assessment - Distinctive elements of PEM... delayed response redundant to the Signs & symptoms section. Can be merged up there.
Diagnosis#Differential diagnosis - as ME/CFS and should... "should" smacks of a clinical guideline, which we are not. Aim to describe, not recommend. This is one of the examples at MEDMOS:Wrong audience.
Management#Pacing - Thus, the principle behind... exacerbation of symptoms. This summary was unnecessary (no doubt because the prior material was written so clearly!)
Management#Pacing - Those whose illness appears stable... have exceeded their limits. reads oddly didactic. Can you shorten it, or massage it to be about how folks' pacing limits can shift over time?
Management#Counseling - NICE removed their recommendation for this treatment in 2021. yikes. A low-evidence treatment recommended into 2021. I wish I was more surprised.
Epidemiology - Seems odd to include American estimates for 2015 and 2021-22. I get the former one had the "% undiagnosed" estimate, which is nice to have. But could these be condensed?
I've removed the older statement (which was not really from 2015, it was a 2015 report citing a 2006 report citing 1998/1999 studies). Since the % undiagnosed is also from that period, I don't think it's reliable anymore despite still being cited. According to the 2021-2022 survey 1.3% said the'd been diagnosed with CFS or ME and still had it, which is lower than epidemiological estimates of prevalence. Which either implies overdiagnosis, wrong estimates of prevalance, or early COVID effects... —Femke 🐦 (talk) 19:40, 3 May 2024 (UTC)[reply]
Society & culture#Controversy - One viral study caused mildly confusing since the adjective "viral" has two meanings now in the internet age.
it has been classified as a neuroimmune condition - I'm not sure this is actually a problem, and maybe I just have an overly medical definition of "to classify" in my head, but I think the source is saying the disease could or even should be classified as a neuroimmune disease. But it seems strong to say "it has been classified" that way and to cite this article. The article doesn't really dwell on classifications, it discusses a variety of involved body systems.
I've reworded, but I feel I'm still missing something. There is another source that may be useful here: https://www.mdpi.com/1648-9144/57/10/1030. This source discusses more directly if ME/CFS is neurological, and talks a bit about the historical controversy around this (apparently, in 2011, UK neurologists didn't really think it was neurological). I've not found sources talk too explicilty about whether this controversy is now resolved.. Sources are probably saying it's neurological, neuro-immune or multi-system in equal proportions. —Femke 🐦 (talk) 11:38, 31 March 2024 (UTC)[reply]
This is called... "vague discomfort" - I don't see the bit about malaise being outdated in the source. Also a smaller thing the source says PEM "may also be referred to as" post-exertional symptom exacerbation. Not quite the same thing as what we say, which is that it's "more accurately" referred to as that. Both the "more accurately" and "may be outdated" in Wikipedia's voice feel like we're editorializing. If these opinions belong to sources, that should be made clear.
Ouch, it seems like we were too aggressive in making the NICE citations consistent, and accidently merged away the accompanying evidence reviews (which are separate documents). I've fixed errors from March 9 and March 11, but I thought I had cited more evidence review documents.. So bear with me. —Femke 🐦 (talk) 07:50, 31 March 2024 (UTC)[reply]
Pathophysiology - However, cytokines are often short-lived, so it is difficult to measure them. A small thing, but I don't think that's an exact match for what the source says "[Cytokines and other circulating things]... are transient or variable and therefore often unstable as diagnostic targets." They're easy to measure (which is why studies measure them even when it's an imperfect readout) but levels can fluctuate quickly and for a variety of reasons.
Yeah, that was poorly worded. I've removed it altogether as it was likely to much "science speak", and other sources don't emphasize uncertainty that much. —Femke 🐦 (talk) 08:49, 7 April 2024 (UTC)[reply]
Pathophysiology - have lower performance and heart rate compared to healthy controls on the first test. I'm surprised the folks with ME/CFS have lower heart rate (since I'd imagine their body is more taxed by the test), though I'm no exercise physiologist. Could you point out where in the source it says that?
@The Quirky Kitty: did you mean work rate rather than heart rate here? I don't think the source supports heart rate, even though other reviews do (e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6824690/). There seems to be some autonomic nervous system dysfunction that causes this. BMJ reports on it, so I think it's due (the BMJ mentions it twice , and twice they make a mistake, calling it chronotropic intolerance, rather than incompetence and contradicting themselves later, but contradicts itself). —Femke 🐦 (talk) 16:37, 3 April 2024 (UTC)[reply]
I've removed heart rate, and added a sentence about chronotropic incompetence elsewhere, as it's found on first day of CPET already and more linked to neurology than metabolism. There were more apparent discrepancies with the source, so added a second source which should cover all. —Femke 🐦 (talk) 10:37, 14 April 2024 (UTC)[reply]
Management#Pacing and energy envelope - Use of a heart-rate monitor... is recommended by a number of patient groups seems an imperfect match with the cited source MEA Summary.
Advocacy - Advocacy and research organisations include... this is probably not a big deal, but if you could find a reliable source that lists important ME/CFS advocacy and research organizations, that would be preferable to what we have now, which is just linking each organization's website as a "reference". Anyone can make a website and claim they're an advocacy organization (e.g. The National Vaccine Information Center claims to be an advocacy organization, but it's actually an anti-vaccine conspiracy group). Having a reliable reference that says "these are the true impactful organizations in the ME/CFS space" would be a reliability boost.
Removed that entire paragraph. I could cite some to [13] this paper, but the paper itself was more interesting, talking about the nature of patient advocacy. —Femke 🐦 (talk) 19:44, 2 May 2024 (UTC)[reply]
1c (cont.) Source review, I'll link each in case the numbers change:
CDC refs 3, 12, 19, 29, and 42 have been updated by the CDC. Make sure the info still checks out and add the new date to the reference.
Ref 23 - In the ICD-10, the code... people often use {{efn}} to accomplish this so an interested reader has a slightly stronger visual cue that there's more info there.
Christley, et al. 2013 (ref 31) have you seen a more recent source for this 80% number? Per WP:MEDDATE we tend to look for sources in the last five years to anchor us in the fast-changing biomedical world. This isn't the world's most controversial claim, but I imagine others have written on the topic since.
I hadn't replaced it as I couldn't find the claim in the newer papers (mostly due to a lack of reviews on the topic). Removed as the review which spawned this number didn't contain the "serious" qualifier, and also contained slightly different numbers. —Femke 🐦 (talk) 12:37, 13 April 2024 (UTC)[reply]
Aoun Sebaiti, et al. (2022) (ref 32) - Folks at FAC are real sticklers for consistent reference formatting (I suspect because it's something that's easy to assess). This one has eight authors without an "et al." Your others all go six authors, et al.
Ditto Rasa, et al. (2018) and Mohamed, et al. (2023). Check the rest there might be a few others. Sorry to bring up something so trivial.
Ditto Cvejic, et al. 2016 (ref 33). This seems like the kind of thing others would've written about more recently (I hope).
We have the 2022 Scientific report paper, which is not the best-written source. BMJ just says there are problems with attention, memory and reaction speed. IQWig has a short symptom description, but I think Cvejic is still the better source. —Femke 🐦 (talk) 13:44, 13 April 2024 (UTC)[reply]
Nijs, et al. 2012 (ref 34) is an odd source for a broad claim. I don't really doubt the claim, but perhaps you can find a better source? The sentence can probably be cut without losing much as well, if you prefer.
Unger, et al. 2016 (ref 38) - I don't have a problem with this 2016 paper being used in general. But "The cause of ME/CFS is unknown" (and the next three uses, all in the same paragraph) should be cited to something more recent. The last use of it can be cut, the CDC source has the same info.
Ref 39 is only barely outside MEDDATE's prescription, and would normally be fine. But since it's only citing ME/CFS is a biological disease, not a psychiatric or psychological condition, I imagine it can be easily replaced with something more recent.
More recent reviews imply this, but don't state it explicitly (at least, the 5 top sources I've used most). This may be because the debate has been resolved for a while now? —Femke 🐦 (talk) 11:23, 13 April 2024 (UTC)[reply]
It's one of those papers which says "we argue that". So, not quite as strong and direct as the existing sources. In a week's time, the new NIH report will be out, which may contain a statement in this vein. —Femke 🐦 (talk) 16:52, 3 May 2024 (UTC)[reply]
Ditto van Cauwenbergh 2014 (ref 53, also its URL isn't currently working for me), Nijs 2014 (ref 55), Armstrong 2014 (ref 56), Morris 2013 (ref 57), and Morris 2014 (ref 58). Each ~10 years old and used just once. None cite particularly controversial claims, but since they're on the evolving topic of where ME/CFS comes from, it'd be nice to show that current theories are being represented.
I've removed all but Nijs (2014). Given how key PEM is to the disease, and given that there is quite a lot of primary research being published in this direction, I think the article is stronger with this. I've got 2 good overview sources on pathophysiology. The BMJ source does not discuss this. The Long COVID / ME/CFS comparison paper, which mentions some of these issues in a more narrative sense with less detail. —Femke 🐦 (talk) 08:48, 14 April 2024 (UTC)[reply]
Sotzny, et al. 2018 (ref 59) has an "et al." in the author list when it looks like one isn't warranted. Glancing at the cite template, I don't really understand why it was generated. I think |collaboration= is making it act funny.
Lim et al. 2019 (ref 51) is from MDPI which has a poor reputation. You're not referencing anything particularly controversial here, but be choosy about where you use MDPI journals, and be prepared to justify each use.
I've moved the cite to only cover one sentence. Source is cited decently, and Scopus says it's a top 20% source for general medicine.
Ditto Nacul, et al. 2021 (ref 60) and Pheby, et al. 2020 (ref 96), the EUROMENE sources. Assuming that's a legit consortium since it has a fancy name?
It was legit, but removed / replaced anyway, as I want to keep some of the other MPDI/Frontiers sources, and hadn't realised how many of them we had included. —Femke 🐦 (talk) 18:57, 20 April 2024 (UTC)[reply]
Ditto Vink and Vink-Niese 2022 (ref 102). Independent researchers are rarely taken seriously in modern biomedical research. That said, I've heard little bits of the PACE trial murmurings from afar and gather this is an unusual situation. As above, if this is really a good source, just be prepared to justify it.
That's embarrasing, I hadn't seen they were independent researchers. I've replaced with two other sources. I'm not sure to what extend MEDRS sourcing is needed here and if a commentary counts as MEDRS. As in: the fact they engaged in odd outcome switching is not a medical claim, but the statistical reanalysis might be. —Femke 🐦 (talk) 16:56, 19 April 2024 (UTC)[reply]
Removed both. Tate looked quite iffy. Will see if I need to pad the section in a few weeks when the big NIH research priorities report comes out. —Femke 🐦 (talk) 11:57, 20 April 2024 (UTC)[reply]
Diagnosis of ME/CFS (CDC, ref 55) is updated since the reference was written. Check info and update.
Bansal 2016 is nearly 8 years old and the info it cites is fully covered by the CDC source. Suggest removal?
Done
Hakim, et al. 2017 (ref 61) - the URL leads to the wrong place. If highlighting a more lay-friendly summary was intentional there used to be a {{{lay-source}}} parameter in cite journal, but it was recently removed. You can accomplish the same within the <ref></ref> brackets if you wish, but make it more clear that the summary is separate from the article.
I didn't look into this, but is something weird with Bowen, et al. 2005 (ref 97)? It's reference "In a 2006 survey..." but the paper was published in 2005. Typo or am I misunderstanding something?
Is Radford and Chowdhury 2016 (ref 103) reliable? I'm unfamiliar with the organizations, and as you point out, they misspelled their own title.
I've double cited it with a scientific study. Slightly less detail in that study, but the fact they cite the report does give it credence. —Femke 🐦 (talk) 19:44, 2 May 2024 (UTC)[reply]
Made it through a first time, thanks for the interesting read! I'll probably be largely unavailable this weekend, but will be back at it next week. Hoping to spotcheck some sources, take a look at the images, and read a couple papers to get a sense of the article's "comprehensiveness". Sorry I'm so slow. Just working it into the time I have. No need to wait on me for anything if you want to get more opinions, etc. Ajpolino (talk) 17:09, 5 April 2024 (UTC)[reply]
Thank you for the incredibly detailed review! I hadn't noticed how much my writing style had revered to overly sciency: maybe I've got a bit less confidence compared to my normal field. No hurry at all: I'm on holiday at the moment, so only doing a bit of phone editing. —Femke 🐦 (talk) 15:38, 7 April 2024 (UTC)[reply]
rarity of recovery
" full recovery is rare." I looked into the source materials and while there is the claim of 5% in a systematic review, there's also a huge discrepancy between the data, some claim over 90% some under 5%. The lack of unified definition for decades, the long duration of the illness and underdiagnosing all contribute to the fact, that we just don't know the recovery rates, it is misleading to claim it rare, there's evidence of both and it largely depends on age (in teenagers some studies cite it upwards of 95%). MikeMatyMatta (talk) 16:43, 9 April 2024 (UTC)[reply]
Most of the evidence that shows it not being rare uses very outdated diagnostic criteria of which only a small percentage have what we would now consider as ME/CFS. Ie. the fukuda 1994 criteria will pick up a lot of people who have depression and other causes of “chronic fatigue” and similar symptoms while not requiring PEM. YannLK (talk) 18:23, 11 April 2024 (UTC)[reply]
The ref we use for it being rare uses the same outdated criteria, and is based on the 19 year old Cairns review. That review gives a 5% figure for untreated CFS, and 23.5% with secondary care. We should either remove that completely, or give more details to make it NPOV. sciencewatcher (talk) 16:40, 12 April 2024 (UTC)[reply]
“Recovery and improvement rates were 8.3% and 4.8%, respectively. [..] The study findings confirmed the poor prognosis of ME/CFS” YannLK (talk) 17:11, 12 April 2024 (UTC)[reply]
That is just for their single study, but they do review other studies and say the recovery rate ranges from 0-8% and improvement ranges 17-64%. Strangely they cite Cairns in the 0-8% range for recovery even though Cairns gives a range of 0-31%. They also give factors that influence prognosis: "A worse prognosis was reported in ME/CFS patients with comorbid fibromyalgia [30], and some studies [16,25], but not others [13,19], showed that psychiatric comorbidity is predictive of poor CFS outcome.
Other factors, such as life stressors [31,32], female gender [32,33], and lower socioeconomic status [34] were also reported as being predictors of outcomes." sciencewatcher (talk) 19:31, 12 April 2024 (UTC)[reply]
Yes, as far as I know, there has been a history of consistently contradictory findings on the factors which influence prognosis. YannLK (talk) 19:37, 12 April 2024 (UTC)[reply]
I've weakened the statement to uncommon. Not all of our top sources make any type of claim on prognosis. NICE says some recover, most don't. BMJ says <10% for adults, but more for adolescents. From long COVID research, it's becoming clear that there is quite a high recovery rate in adults between 3 and 6 months (like 1/3 recovers), before recovery plateaus; so there might be higher recovery rates if diagnosis isn't delayed as much. —Femke 🐦 (talk) 13:35, 13 April 2024 (UTC)[reply]
Your addition to myalgic encephalomyelitis/chronic fatigue syndrome has been removed or altered, as it appears to closely paraphrase a copyrighted source. Limited close paraphrasing or quotation is appropriate within reason, so long as the material is clearly attributed in the text. However, longer paraphrases which are not attributed to their source may constitute copyright violation or plagiarism, and are not acceptable on Wikipedia. Such content cannot be hosted here for legal reasons; please do not post it on any page, even if you plan to fix it later. You may use external websites or printed material as a source of information, but not as a source of sentences. This part is crucial: say it in your own words.
If you own the copyright to the text, and you want to allow Wikipedia to use it — which means allowing other people to modify it — then you must verify that externally by one of the processes explained at Wikipedia:Donating copyrighted materials. If you are not the owner of the copyright but have permission from that owner, see Wikipedia:Requesting copyright permission. Wikipedia takes copyright violations very seriously and persistent violators will be blocked from editing. This is the second time I've removed closely paraphrased text from you. One tip I find useful is that you should very rarely have more than 3 words in a row the same as the source. If you copy over more words, it's likely not allowed.—Femke 🐦 (talk) 19:13, 24 April 2024 (UTC)[reply]
Feel free to edit. I thought it best to include all of the factors affecting prognosis, as there would otherwise likely be pushback, but maybe it would be better to quote it? Anyway, feel free to update it yourself as you see fit. Currently the article has no mention of actual recovery/improvement rates, or of the factors affecting prognosis, so it needs updated to address that. sciencewatcher (talk) 20:27, 24 April 2024 (UTC)[reply]
Oh, I didn't notice that new discussion. Generally it's better if you revert something like this to discuss on the article talk page rather than a user talk page, which is why I moved the discussion here, as it pertains to the article. sciencewatcher (talk) 16:54, 26 April 2024 (UTC)[reply]
As this was a conduct issue (copyright violations), it was more appropriate on your user page. In general, quoting should only be done when you cannot paraphrase properly (WP:Wikivoice). In this case, there were plenty of opportunities to paraphrase, for instance by integrating it in the existing text. —Femke 🐦 (talk) 07:45, 27 April 2024 (UTC)[reply]
Post-exertional malaise (PEM) is a necessary attribute of ME/CFS, lack of PEM excludes ME/CFS
A substantial reduction or impairment in the ability to engage in pre-illness levels of activity that lasts for more than 6 months, is accompanied by fatigue that is often profound, of new onset, not the result of ongoing or unusual excessive exertion, and not substantially alleviated by rest.
Post-exertional malaise (PEM) — worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness. PEM often puts the patient in relapse that may last days, weeks, or even longer.
Unrefreshing sleep.
At least one of the following two additional manifestations must be present:
Cognitive impairment.
Orthostatic intolerance.
Therefore, even if all other symptoms are present, the lack of PEM would exclude a diagnosis of ME/CFS according to these criteria.
There are different criteria proposed by different institutions, still most of them consider Post-Exertional Malaise (PEM) as a key symptom:
Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
Post-exertional malaise after activity in which the worsening of symptoms:
is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer.
Unrefreshing sleep or sleep disturbance (or both), which may include:
feeling exhausted, feeling flu-like and stiff on waking
broken or shallow sleep, altered sleep pattern or hypersomnia.
Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
The article only currently states that PEM is a "hallmark feature": quote: "The hallmark feature of ME/CFS is a worsening of symptoms after activity"
Can we explicitly state that the lack of PEM would exclude a diagnosis of ME/CFS, because the term "hallmark feature" is not precise enough (ambigous)? Maxim Masiutin (talk) 22:04, 9 April 2024 (UTC)[reply]
There are three symptoms that are necessary for diagnosis in most criteria sets (debilitating fatigue, PEM, sleep dysfunction). PEM is the most distinctive of the three. The way we now word it, it emphasizes PEM above the other two core symptoms. PEM is not required in Fukuda, the historically most popular criteria (Now fast losing popularity). —Femke 🐦 (talk) 15:07, 10 April 2024 (UTC)[reply]
OK, if you think that no change is required, then let it be so. It was just not evident for me, so I had to dig various sources to find out that PEM is requried for all criteria that I could find. I didn't know that PEM is not required in Fukuda. Maxim Masiutin (talk) 17:07, 10 April 2024 (UTC)[reply]
Though to be fair Fukuda is only clung onto by the minority BPS researchers and their successors but is not used by anyone else in the field (bar Brian Wollitz but I think he’s got very similar “somatoform” views to those BPS researchers.) YannLK (talk) 18:27, 11 April 2024 (UTC)[reply]
@YannLK my point is that the current Wikipedia article is not clear enough: I had to dig other sources to figure out whether lack of PEM rules out ME/CFS. I don't agree with a statement that how it is now written in Wikipedia is clear enough. Maxim Masiutin (talk) 20:21, 11 April 2024 (UTC)[reply]
Well, CDC defers to IOM which states PEM and three other symptoms are required[15]. NICE is a bit more nuanced talking about suspected ME/CFS and PEM and three other symptoms should be present [16] pgs. 11 & 15. Then on pgs 64,65 NICE acknowledges the criteria are not absolute and talk about the importance of combinations of symptoms (clinical expertise?), so there still is some uncertainty about absolute requirements for a clinical diagnosis. Ward20 (talk) 22:36, 14 April 2024 (UTC)[reply]
My understanding of guidelines of Wikipedia guidelines, as outlined in WP:DUE, WP:MEDRS, and essays such as WP:CONFLICTING, are the following. These guidelines emphasize that the current consensus should be prioritized when there is a shift in academic or general consensus over time. This ensures that the information presented is accurate and reliable. For example, if a diagnostic criterion (as published in one source) is regularly updated, but another criterion has not been updated since its last publication several years ago, the older criterion can be replaced by the newer one. This aligns with general rules of Wikipedia for medical sources, which state that a newer source of equal or higher quality supersedes an older source (WP:MEDRS). If cited, older works should be clearly identified as such and primarily used to illustrate the historical evolution of the subject mentioned in an article. If the conflict pertains to the interpretation of facts rather than the facts themselves and cannot be resolved by identifying errors in some of the conflicting sources, all significant viewpoints published by reliable sources should be included with appropriate attributions to maintain a neutral point of view. In such cases, it is the reader's prerogative to decide which source to believe, not the responsibility of Wikipedia editors. Please let us use clear and unambiguous language when representing conflicting viewpoints. This enhances the reader's comprehension and ensures that all viewpoints are fairly represented. For instance, using terms like "hallmark" can add unnecessary ambiguity. Instead, articles should clearly represent all significant viewpoints published by reliable sources in proportion to the prominence of each viewpoint. For example, instead of stating "feature Z is a hallmark of illness X", which is ambiguous, it would be more straightforward to state: "Source A asserts that the absence of feature Z excludes the diagnosis of X, whereas Source B contends that feature Z should be present in the diagnosis of X, but does not explicitly require it". This approach ensures that all viewpoints are fairly represented and understood by the reader. As you see, my concerns are justified, and they are also shared by the other Wikipedia editors, for example, by User:YannLK. Please consider eliminating the existing ambiguity in the ME/CFS article related to whether PEM is a required condition for a diagnosis of ME/MFS so that the lack of PEM rules out ME/CFS. The goal of Wikipedia is to fairly interpret sources, not to add ambiguity that forces readers to spend additional time extracting information from those sources. A reader should not have to invest hours deciphering the actual situation after reading a Wikipedia article. By ensuring clarity and precision in the presentation of information, we can enhance the user experience and uphold the integrity of Wikipedia as a reliable and accessible source of knowledge. That's why I disagreed with User:Femke who wrote that how it is currently presented is OK. I think it is very not OK and should be resolved. I would like to add a personal note to underscore the importance of this issue. I have personally spent a significant amount of time trying to understand the situation due to the ambiguous presentation of information in the article. I had to delve into the sources myself to decipher the current state of affairs. The editors who nominated the article for GA status were well aware of this ambiguity. If they had explicitly addressed this in the initial version of the article, I would not have had to spend so much time figuring it out. This is precisely what Wikipedia is for - to provide a fair and unambiguous synthesis of the sources. However, in this instance, Wikipedia did not fulfill its role. Despite my personal involvement and potential bias, I implore you to address this issue. It is crucial for Wikipedia to serve its purpose as a reliable and accessible source of information. Maxim Masiutin (talk) 05:35, 15 April 2024 (UTC)[reply]
@Maxim Masiutin. Can you collapse that and rewrite without posting a wall of text? I have limited ability to read due to long COVID and I cannot parse such a long paragraph-less text. Are you looking for a change in the lead (in addition to an image which we're working on above, which has PEM as one of the 4 symptoms, which the caption will say are all required by NICE). If so, can you propose wording?
In terms of Fukuda only being used by PBS researchers, I don't think that's true either. For instance, Jarred Younger (the neuroinflammation guy) uses Fukuda sometimes, as it's difficult to get enough volunteers if you make the criteria stricter.
The difference between suspected and confirmed ME/CFS in NICE relates timescales (6 weeks vs 3 months). For both, PEM is required in the NICE criteria. —Femke 🐦 (talk) 18:02, 16 April 2024 (UTC)[reply]
Let me collapse. The current term "hallmark" is misleading. You can keep it but explicitly write that "in all criteria except Fukuda PEM is a required condition for a ME/CFS diagnosis so that lack of PEM rules out ME/CFS" to resolve ambiguity. Maxim Masiutin (talk) 22:03, 16 April 2024 (UTC)[reply]
Controversy in lead
Shouldn’t there be some detail in the lead about the controversy around the illness other than just a link to the article about it? Thriley (talk) 04:11, 12 April 2024 (UTC)[reply]
What specific controversy are you referring to?
The fact that a large majority of researchers agree it is a biological illness, bur many clinicians dismiss it due to lack of awareness about the condition? YannLK (talk) 14:59, 12 April 2024 (UTC)[reply]
Doctor–patient relations section
It has some material about percentages of doctors perceptions in the UK based upon surveys from 2006 and 2009. I believe that's too old to rely on now that IOM, CDC and NICE has updated guidance. Ward20 (talk) 22:51, 14 April 2024 (UTC)[reply]
I've removed both and replaced it with some text about how the patient- doctor relationship changes when patients learn more about their illness. —Femke 🐦 (talk) 08:47, 21 April 2024 (UTC)[reply]
WASF3
Hey @Sciencewatcher I noticed you removed the WASF3 findings because they were “remove speculation based on single study from one patient”.
I agree with you that these findings should not be claimed as fact, because they have indeed only been found in one study.
However your statement that it is based on a single patient is false. As per the abstract of the study “Expanding on our findings, skeletal muscle biopsy samples obtained from a cohort of patients with ME/CFS showed increased WASF3 protein levels”
This finding potentially explains a mechanism behind the disease, and is one of the main findings to do so. It was first found in one patient then confirmed in a cohort of patients. If we include the caveat that it is a single study, that the findings need confirmation, it may still be worth a quick mention in the pathophysiology section. Or even in the research section. Wonder what you (and others) think? YannLK (talk) 10:21, 20 April 2024 (UTC)[reply]
I'm weakly leaning include here. Both high-quality reviews on pathophysiology that have come out since the paper was published dedidate space to the findings. BMJ a long sentence, Annesley a full paragraph. The Annesley et al paper uses few caveats (WASF3 was identified in muscle cells, rather than a single study with a low number of participants found.. ). It was one of those rare papers that delved really deep into the matter (mouse model, testing medication in vitro, etc etc). —Femke 🐦 (talk) 11:28, 20 April 2024 (UTC)[reply]
Diagnostic criteria, image
New proposed image: ME/CFS symptoms according five common criteria sets.Old lead image: A comparison of a large set of diagnostic criteria for ME/CFS.
I had hope that by moving the old lead image into the body, the text would become sufficiently large to read. It's not. I've made a new one based on the IQWiG report (page 13). I'm showing both at upright=1.35 here.
Three questions:
I think this type of information cannot be copyrighted, but would like a second opinion here. @The Quirky Kitty; can you confirm this is okay? There is maybe a bit of "creativity" here, in the sense that IQWiG had to do some symptom mapping (like myalgia --> pain, PENE -> PEM).
Is the new graph better than the old?
Any changes desired? I've made it in PowerPoint, but Powerpoints design features seem sufficiently rich for requests.
Asked at the CCI Discord channel, where I was told that the row order is somewhat creative, so will rejig the graph a bit. Have requested deletion for the file on Commons. Bit of a linguistic question: in German (and Dutch), the same word is used for ache and pain (Schmerz / pijn). Do people consider a headache a type of pain? I've translated Schmerz as pain, but maybe a better translation would be pain or headache (the other two pain categories are joint and muscle pain). —Femke 🐦 (talk) 20:29, 3 May 2024 (UTC)[reply]
I hesitate to speak for the anglophone world, but I think most would answer your question "yes, headache is a type of pain". At the same time, I think most people would read "Pain" (the standalone word) to refer to bodily pain. Because of that, "Pain or headache" would not look odd (and might be more clear). Ajpolino (talk) 21:01, 3 May 2024 (UTC)[reply]
The 3rd paragraph has redundancy, saying that ME affects health
That sentence fits better in either social impact or symptoms. The symptom paragraph is already quite full, with some requests to describe PEM better (more words(?)).
The 3rd paragraph is too long compared to 4
The controversy sentence feels like it isn't connected (see #Controversy in lead)
The controversy sentence is bit wordy.
I propose the following rewrite:
The severity of the illness can fluctuate over time, but full recovery is uncommon.[1]About a quarter of patients are severely affected and unable to leave their bed or home. ME/CFS negatively impacts people's health and abilities and can cause social isolation. Treatment is aimed at relieving symptoms, as no therapies or medications are approved to treat the condition.: 29 Pacing one's activities to avoid flare-ups may help manage symptoms, and counselling may aid in coping with the illness.[2] Before the COVID-19 pandemic, ME/CFS affected roughly one in every 150 people, although estimates vary widely due to differing definitions used in studies.[3] However, many people with long COVID fit ME/CFS diagnostic criteria.[4] ME/CFS occurs 1.5 to 2 times asmore often in women as in men.[3] It most commonly affects adults between ages 40 and 60 but can occur at other ages, including childhood.[5]
ME/CFS has a large social and economic impact. About a quarter of individuals are severely affected and unable to leave their bed or home.[6]: 3 The disease can also be socially isolating.[7] People with ME/CFS often face stigma in healthcare settings and care is complicated by controversies around the cause and potential treaments of the illness.[8] Clinicians may be unfamiliar with ME/CFS, as it is often not covered in medical school.[4] Historical research funding for ME/CFS has been far below that of diseases with comparable impact.[9]
Clean version of the newly proposed text
The severity of the illness can fluctuate over time, but full recovery is uncommon.[1] Treatment is aimed at relieving symptoms, as no therapies or medications are approved to treat the condition.: 29 Pacing one's activities to avoid flare-ups may help manage symptoms, and counselling may aid in coping with the illness.[2] Before the COVID-19 pandemic, ME/CFS affected roughly one in every 150 people, although estimates varied widely.[3] However, many people with long COVID fit ME/CFS diagnostic criteria.[4] ME/CFS occurs more often in women as in men. It most commonly affects adults between ages 40 and 60 but can occur at other ages, including childhood.[5]
ME/CFS has a large social and economic impact. About a quarter of individuals are severely affected and unable to leave their bed or home.[6]: 3 The disease can also be socially isolating.[7] People with ME/CFS often face stigma in healthcare settings and care is complicated by controversies around the cause and potential treaments of the illness.[8] Clinicians may be unfamiliar with ME/CFS, as it is often not covered in medical school.[4] Historical research funding for ME/CFS has been far below that of diseases with comparable impact.[9]
^ ab"Treatment of ME/CFS". Centers for Disease Control and Prevention. 28 January 2021. Archived from the original on 20 March 2021. Retrieved 9 October 2023. This article incorporates text from this source, which is in the public domain.
^ abInstitut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG) (17 April 2023). Myalgische Enzephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Aktueller Kenntnisstand [Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): current state of knowledge] (PDF) (in German). Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen. ISSN1864-2500. Archived(PDF) from the original on 2 November 2023. Retrieved 8 November 2023.
^ abO'Leary D (December 2020). "A concerning display of medical indifference: reply to 'Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox'". Medical Humanities. 46 (4): e4. doi:10.1136/medhum-2019-011743. PMID32601171. S2CID220253462.
There was a recent prognosis edit that goes quite against the idea of the article, for example saying that a physical attribution to the illness worsens prognosis. Given the illness is physical, that sentence seems to imply the illness isn’t.
I’m not able to access BMJ to check the claims but I thought the prognosis section was good as it was, given the history of contradictory findings. Additionally, saying most patients improve with treatment is interesting given there are no approved treatments, only symptom management. I assume this sentence refers to older GET and CBT studies, which the 2021 NICE guidelines rated as poor or very poor quality. YannLK (talk) 18:23, 24 April 2024 (UTC)[reply]
A discussion can still be useful, even when something is deleted, to assess whether there is consensus for inclusion. I removed the sentences as there was close paraphrasing from the source.
I'm a bit surprised with the inclusion of a 1997 study in the BMJ source, which doesn't feel like it's in line with the rest of the source. The 1997 papers does not quite make clear if any of the CFS studies assess "faulty attribution" of CFS as a physical illness, as it makes a statement about chronic fatigue and CFS together. And of course, what was called CFS then included people that do not have ME/CFS according to modern definitions. —Femke 🐦 (talk) 19:23, 24 April 2024 (UTC)[reply]
Well, as per wikipedia policies, we shouldn't be second-guessing the secondary source (which is the one you used). It's certainly an important point, as many studies have shown the same finding, and patients report the same. It's not saying that there aren't physical symptoms (as we know there are). It's saying that the belief that the illness is caused by some kind of physical damage in the body is harmful to recovery. sciencewatcher (talk) 17:01, 26 April 2024 (UTC)[reply]
I mean if it is prominent in and in most recent high quality reviews, we should include it as per wikipedia policy.
However in my personal opinion it isn’t measuring what you think it is. People who have more severe ME/CFS, people who have had ME/CFS for longer, and people who have more physical symptoms will all probably be more likely to say the cause of the disease is physical. All these above factors are much more likely to affect prognosis then a psychological belief (given the illness is in itself physical). YannLK (talk) 17:47, 26 April 2024 (UTC)[reply]
The key policy we look at when deciding whether to include a claim is whether it's WP:DUE. That is, whether it gets mentioned in multiple high-quality reliable sources. Especially for WP:Exceptional claims like this. If a source claims that people who correctly identify their cause of illness have less chance of recovery, that is an exceptional claim.
In this case, the BMJ source is the only one of our top sources mentioning it (so I'd argue, WP:UNDUE). The underlying source is weak. It's an analysis of between 0 and 5 primary sources on CFS (review doesn't say), as defined more closely to idiopathic chronic fatigue than ME/CFS. While sciencewatcher is correct we should be careful to avoid WP:original research (OR), a critical reading of a source does not have to constitute OR.
I also note that sciencewatcher themselves has engaged critically with the literature, for which I gave thanks, when they removed "severe" in front of psychological stress. Iirc correctly, IQWiG said severe stress could potentially trigger ME/CFS, whereas the underlying source said that normal stress, often during an infection, was a (co-)trigger. —Femke 🐦 (talk) 18:41, 26 April 2024 (UTC)[reply]
The claim in question has been replicated by multiple studies and is included in many reviews, and supports the experience of patients themselves (who had very physical symptoms), and it's very important as it is a factor that determines recovery prognosis. Again, it's just a confusion over what this means. It doesn't mean the illness isn't physical, it just means that the belief that your body is permanently damaged is detrimental to recovery. Perhaps it would be good to clarify that in the article, if there are good sources explaining it, as it seems to be a common point of confusion. — Preceding unsigned comment added by Sciencewatcher (talk • contribs) 19:29, 26 April 2024 (UTC)[reply]
See for example Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review (https://www.mdpi.com/2075-4418/9/3/91) which has 206 citations. "The attribution of CFS to a physical cause and poor control over the symptoms have been associated with worse outcomes in those patients". sciencewatcher (talk) 20:37, 26 April 2024 (UTC)[reply]
The old sources do not describe it like that ("permanently damaged"). That would be a less exceptional claim. It makes common sense that one needs to experiment with the limits of PEM over time, and that some can get in a virtuous cycle of getting more fit in periods PEM is not as bad.
The 2019 review does not meet the criteria for a high-quality reliable source imo. It's only just within WP:MEDDATE. More concerning, it's published in a special issue of an MDPI journal. Normally, the better MDPI journals can be just acceptable, but peer review is much more hit-and-miss in special issues [17] .
The 2019 review relies again on a 2005 review that assesses what they understood as CFS in 2005. I.e., the cardinal symptom of PEM wasn't mandatory. —Femke 🐦 (talk) 07:39, 27 April 2024 (UTC)[reply]
I've been in contact with the BMJ editor about the apparent contradiction in the source: they indicate it was a weird statement and that their next update in ~July will no longer say this. —Femke 🐦 (talk) 16:26, 3 May 2024 (UTC)[reply]
Clinicians or doctors, medical school or post and undergraduate education
There were plenty of CPD/CME courses/modules/resources which were for HCPs as a whole, rather than just doctors, but they didn't go into the current lack of knowledge and education.
Either/both of those work for you?
While the current reference does discuss the lack of education in 'medical schools' and the lack of knowledge of 'clinicians' in the same context, one of those is being misused. Either they were referring to all clinicians, and so should not have referred to medical schools specifically, or they just meant doctors. Either way, as we're not directly quoting them, do we need to repeat their mistake? Ilike2burnthing (talk) 08:33, 5 May 2024 (UTC)[reply]
I think the word clinician has multiple meanings. There is the wide meaning, which includes nurses (as Wikipedia defines it for instance), and a more strict meaning, which is about doctors (Oxford dictionary). I'm not a native speaker or expert here, so I'm not sure which is more common. The research the Davis et al study cites is specifically about US medical schools.
You're probably right there is a gap in the education of other medical professions too, but I'm not sure any research is done to verify that.
Of the two sources you give, the paper is a Frontiers paper, which I typically want to avoid for quality purposes. The other one may be more appropriate. We could add it to the body of the article? I think specifying both undergraduate and postgrad education is a bit too much detail, but adding that it's there is a gap not only for doctors but health care professionals in general may be good. —Femke 🐦 (talk) 09:07, 5 May 2024 (UTC)[reply]
Yes, my use of the word 'mistake' above is not correct, there are different meanings for the same word. I personally think that using 'clinician' to purely mean 'doctor' is too narrow and gatekeeping, but that doesn't negate that not everyone will use it the same way.
In this case though, given the Wiki definition of clinicians, that we're not directly quoting the study, and that they are specifically referring to medical schools, I feel this should be changed to 'doctors', at the very least to avoid confusion.
I could link to the results of a survey of primary care HCPs and their knowledge of ME, by the charity Hope 4 ME & Fibro Northern Ireland, but it's small in scale and definitely not peer-reviewed.
While there are some similar large-scale studies/surveys found on the Controversies related to ME/CFS page, these again lean heavily into GPs and other doctors.
Move PEM to later in the paragraph, to give context of which symptoms worsen first
Make the summations more clear
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex long-term illness. People with ME/CFS experience a debilitating fatigue that does not improve much with rest, sleep disturbances and problems with memory or concentration. They can do much less than before they became ill. Further common symptoms include dizziness, nausea and pain. People with ME/CFS experience a worsening of the illness hours or days after minor physical or mental activity, which is the hallmark symptom of the illness.
I've wanted to put more emphasis on PEM by decreasing the description of orthostatic intolerance. Following NICE, I've split decrease of functioning into a separate sentence, as it's not only linked to fatigue, and to emphasize the definite onset more. Text flow is still a bit iffy, so open to more suggestions. —Femke 🐦 (talk) 11:00, 5 May 2024 (UTC)[reply]
Is there a reason why the PEM sentence is last. I feel like it removes emphasis from PEM as more “minor” and non-defining symptoms such as dizziness, sleep disturbances, nausea, pain etc. are included before. Since PEM is the hallmark symptom and the ones that helps clinicians differentiate from ME/CFS and other diseases, I would personally include it more prominently. YannLK (talk) 11:26, 5 May 2024 (UTC)[reply]
I'm trying to respond to Ajpolino's comment that it's unclear what a worsening of the illness means before the other symptoms are introduced. At least, for those unfamiliar with me/cfs. I hope that placing it as the last sentence does provide more emphasis, as people often read the first and last sentence when scanning a paragraph. —Femke 🐦 (talk) 11:35, 5 May 2024 (UTC)[reply]
That makes sense. My bad for not reading the whole context. :)
Maybe a small mention of exertional intolerance at the top could help, but it might be redundant so I’m not sure. YannLK (talk) 11:51, 5 May 2024 (UTC)[reply]
Small suggestion for third sentence. They are able to do much less than before they became ill. I believe this wording describes the disability better. Ward20 (talk) 05:39, 8 May 2024 (UTC)[reply]
I had to think about this a bit. I believe the word "debilitating" is more appropriate in the first sentence about the illness, rather than linked with fatigue. Though NICE describes fatigue that way, cognitive issues, pain, orthostatic intolerance, PEM and some of the other symptoms can be just as disabling, separately or when combined.
The other question I have is about not delineating "core" mandatory symptoms in the lead (discussed separately below also). Ward20 (talk) 01:04, 14 May 2024 (UTC)[reply]
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious long-term condition. People with ME/CFS experience a profound fatigue that does not go away with rest, sleep issues and problems with memory or concentration. They are able to do much less than before they became ill. Further common symptoms include dizziness, nausea and pain. People with ME/CFS experience a worsening of the illness hours or days after minor physical or mental activity, which forms the hallmark symptom of the illness.
I've implemented the above. I'm trying to tie in the comments from User:Odobert and User:Ward20 here, plus improve readability a bit further:
Does not go away with rest is closer to the CDC's new description ("is not relieved by rest").
Put serious in the initial description, as debilitating is too difficult a word and we describe this later with "They are able to do much less than before they became ill". Changed the adjective before fatigue into profound for the same reason.
I believe the text already implicitly makes a distinction between core and non-core symptoms. "People with ME/CFS have" implies it's true for all people. Further common symptoms implies it's a common symptom instead.
Oh, I've also put in a duration for the PEM, as I think a good description is quite key, and I managed to ce the lead to fit in more. —Femke 🐦 (talk) 13:01, 19 May 2024 (UTC)[reply]
Fatigue not caused by overexertion
Hello @Ilike2burnthing. Thanks for trying to improve this article :).
I noticed you made some changes to clarify text on fatigue not being caused by overexertion. I think the difficulty here is that sources are not very explicity that this overexertion is defined as overexertion for healthy people. The fatigue occurs after normal exertion, not something unusually streneous. I hope that adding the word "unusual" from the IOM definition works to make this clear, but if not, I'm open to other wording as long as it's supported by a good source. —Femke 🐦 (talk) 07:03, 12 May 2024 (UTC)[reply]
Regarding what 'excessive' or 'unusually difficult' mean, whether it's in reference to a healthy person or someone with M.E., I don't think it really matters here. If it's excessive for the person with M.E. as they are now, then it will make their symptoms worse. If it's excessive for a healthy person, then it will definitely make their symptoms worse.
If it helps though, I've generally seen any mention of symptoms be put in the context of, or compared to, the person with M.E. at their 'pre-illness levels':
- "significantly reduced from pre-illness levels" - NICE2021 pg11
- "Greatly lowered ability to do activities that were usual before the illness." - CDCsym2021
However, I don't think that's where the confusion here is coming from, rather that it can be read to mean overexertion does not cause fatigue for people with M.E.. The current phrasing could potentially be restructured similarly to the CDC's to reduce that confusion:
-----
People with ME/CFS experience debilitating fatigue, which is:
- made worse by activity
- not caused by unusual cognitive, physical, social, or emotional overexertion
The reason I had added 'newly', and clarified 'rather exacerbated by it', in my contribution, was to make it clear that there is always a baseline of fatigue, and that these types of exertion can worsen symptoms.
This may be clearer:
People with ME/CFS experience constant debilitating fatigue, which is not eased much by rest or sleep. While this is not caused by cognitive, physical, social, or emotional overexertion, it is worsened by it.[1][2]: 12 Ilike2burnthing (talk) 08:41, 12 May 2024 (UTC)[reply]
People with ME/CFS experience persistent debilitating fatigue, which is made worse by normal activity, and is not from excessive strenuous exertion a healthy person would experience.[1][2]: 12 Ward20 (talk) 09:46, 12 May 2024 (UTC)[reply]
I think we're getting close. For diagnosis under many criteria (including IOM), fatigue needs to be present at least half of the time and be at least of moderate intensity. So for people with mild ME/CFS, fatigue is not necessarily constant. I think the text is not making clear that everyday activities can cause fatigue in ME/CFS, rather than only overexertion.
The problem with Ward's text is that the sources do not make explicit that it's a comparison to healthy people. Do we have other sources that make this explicit? We can also move closer to IOM and say "is not the result of ongoing excessive exertion"
Proposed text: People with ME/CFS experience debilitating fatigue. While it is made worse by activity, it is not the result of overexertion. (same sources). —Femke 🐦 (talk) 10:49, 12 May 2024 (UTC)[reply]
Sleep/rest not being restorative is an important part of the definition, so I think that needs added back in. I also think it needs to be clear that stressors can be mental/social/emotional, not just physical; while that's not excluded by the use of the word 'activity', many people will assume it just means physical.
People with ME/CFS experience debilitating fatigue which, depending on severity, can be constant. It is not relieved by sleep or rest. While it is made worse by physical, mental, emotional, and social activity, it is not the result of overexertion.Ilike2burnthing (talk) 16:23, 12 May 2024 (UTC)[reply]
People with ME/CFS experience persistent debilitating fatigue, which is made worse by normal activity and is not a result from ongoing overexertion.[18][2]: 12 One could argue a comparison to a healthy state is reasonable due to the pre-illness stipulation from the cite, but I understand wanting it to be completely explicit. By citing the CDC page that uses the IOM definition, the wording "ongoing overexertion" is well supported and descriptive since patients cannot tolerate "ongoing overexertion". "Persistent" is a good adjective for a > 3-6 month long fatigue symptom. Ward20 (talk) 00:15, 13 May 2024 (UTC)[reply]
People with ME/CFS experience persistent debilitating fatigue, which is made worse by normal physical, mental, emotional, and social activity, and is not a result of ongoing overexertion. It is not relieved by sleep or rest. (+ sources)
^ abcCite error: The named reference CDCsym2021 was invoked but never defined (see the help page).
^ abcdCite error: The named reference NICE2021 was invoked but never defined (see the help page).
Pre-FAC comments from Graham Beards
I have made a few edits, which I hope are improvements. I have a short list of comments:
The long blue links are distracting. Is it possible to limit them to a few words or less?
There's a paragraph on the cause(s) under classification, which seems out of place.
The link to Diagnostic criteria under diagnosis is not needed (and we never use "see below").
I am not sure what is meant by "energy production".
There are 58 occurrences of "people with" which gets a little distracting.
Having said that, I saw at least one use of "patients", which we avoid.
Anti nuclear antibodies are used to diagnose conditions other than lupus. The current wording gives the wrong impression. Do we need to single out lupus?
agreed, although some may be difficult to shorten, e.g. `sleeping during the day and being awake at night` linking to 'sleep inversion'
if you're referring to the paragraph beginning 'The cause of the illness', it is about the classification being based on symptoms rather than the cause
yea, remove it
'produce energy' and 'energy production' are used in the two references, may give an idea of how to rephrase
agreed, but other than occasionally switching it for something like 'those with', I don't know how else you'd phrase it
misuse of the word 'patient(s)' appears multiple times under 'society and culture'
I don't have access, but I'm assuming the reference only mentions lupus. Can anyone confirm? Also, the archive link for that reference is a login page, so that would need updated.
while not a fan myself, it's taken from the 'spoon theory' page. Perhaps @Femke would be able to design a graphic, like for the symptoms?
I think it's all good. Commenting and seeking consensus has been working well here. I agree with the above. I have been dubious about the spoons image too. I suggest an image of a heart monitor there instead because it mentions that in the section. Ward20 (talk) 14:28, 13 May 2024 (UTC)[reply]
A bit of an explanation for Ilike2burnthing: we're preparing the article for a featured article candidacy (to get a star at the top right of a page like Earth). I've asked a couple of medical editors to comment, given that I don't have a medical background and they'll be able to catch mistakes I can't catch myself easily (and because they're better at prose too). That said, always open to more suggestions! —Femke 🐦 (talk) 19:20, 13 May 2024 (UTC)[reply]
Thanks Graham, this is incredibly useful !!
long blue links: I've managed to pair down roughly half of these links hiding jargon. Need to recalibrate now that the link colours have become more jarring in V22, and avoid long links. Also did another round of duplicate link removal. There is one that I'm not quite certain on:
I don't want to say post-exertional malaise in the lead, as I dislike such jargon. In the proposed first paragraph above, I've made this even worse.
Given that the classification is intricately linked to putative cause, it is difficult to seperate, but open to suggestions.
Is energy metabolism clearer? The Annesley paper does describes it as energy production.
Have reduced it to 40 and made sure it wasn't repeated within the same paragraph and as the start of two subsequent paragraphs.
I've removed more instances of patient. The remaining instances are specifically about individuals in their role as patients (i.e. interaction with a health care professional). Hope that's okay?
PEM is linked as the text worsening of the illness in the opening paragraph of the page. It is also linked as post-exertional malaise in the opening paragraph of the Signs and symptoms section (where the initialism PEM is not used), and then again as post-exertional malaise in the first paragraph of the Post-exertional malaise sub-section (where the initialism PEM is used).
There are also 3 later uses of the term in full, rather than just PEM, under the Management and Society and culture sections.
Can these be reduced as appropriate? I'm not familiar enough with wiki standards to know whether links get repeated if the text is different, or if full terms and their initialisms are repeated in each section, so I'll leave that to you. Ilike2burnthing (talk) 17:57, 19 May 2024 (UTC)[reply]
The linking rule is once in the lead, and max once per section at first mention. I'm aware I've slightly overlinked, but I dislike not linking a concept in its actual subheading.
I've replaced the post-exertional malaise with PEM in Management and Society. I've added another link to PEM in the management section, as it's difficult jargon and key to understanding management. —Femke 🐦 (talk) 19:17, 19 May 2024 (UTC)[reply]
"Core" symptoms was in the lead to differentiate mandatory primary symptoms for diagnosis using the IOM and NICE definitions. The mandatory symptoms are not fully delineated until the Diagnostic criteria section. Should the mandatory symptoms be more clearly characterized as such in the lead or as it presently is?
Easy was replaced by "routine" concerning tasks in the lead. I believe routine is more effective because it better captures what a person used to be able to do before the illness. Easy is somewhat subjective. Easy kind of works, but if you think about a person's daily strenuous exercise program, or for example, math modeling of mechanisms in an engineering profession, it doesn't quite fit. Those are real world examples. Ward20 (talk) 00:25, 14 May 2024 (UTC)[reply]
I offered these edits as a suggestion. I deleted "core" because readers who only read the Lead (and there are many of them) will not have a clue as to what it means. I'm not fussed about "routine" but for the Lead, I prefer "easy". The Lead should be a stand-alone summary of the article.Graham Beards (talk) 06:24, 14 May 2024 (UTC)[reply]
I believe it would be difficult to present in the infobox. Rather than the wording:
Other symptoms are a greatly reduced ability to do tasks that were previously easy, severe fatigue that does not improve much with rest, and sleep disturbances.
Propose:
Other indications of the illness are a greatly reduced ability to do tasks that were previously accomplished without difficulty, severe fatigue that does not improve much with rest, and sleep disturbances.
You're right that it's not easy to present this in the infobox.
The proposed wording here however is really poor for readability. I'm always passionate about making articles accessible for a non-academic audience, but even more so here, as pwME may have too much brain fog to read sentences with a similar difficulty as a scientific paper. —Femke 🐦 (talk) 06:04, 19 May 2024 (UTC)[reply]
OK, I see that non-academic audience readability is important, but if it goes too simplistic it might lose some relevance to the definition. However, presently the primary symptoms are prefaced with "Other symptoms..." and the optional or less common symptoms are prefaced with "Further common symptoms..." Seems like the primary symptoms should be emphasized. Maybe "Required symptoms for diagnosis..." rather than "Other symptoms..."? Or do you think the issue is that presenting the symptoms for diagnosis is too complex in the paragraph? Ward20 (talk) 11:33, 19 May 2024 (UTC)[reply]
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness. People are much less able to perform tasks they could do prior to the illness, and they have severe fatigue that does not improve much with rest. They have sleep disturbances and problems with memory or concentration. Other common symptoms include pain, and dizziness or nausea when sitting or standing.[1] People with ME/CFS also experience delayed worsening of the illness hours or days after minor physical or mental activity, which is the distinctive symptom of the illness.[2]
I wrote down some comments regarding the current content of the page. I am new to Wikipedia editing but know the ME/CFS literature quite well. I thought it would be better to post my remarks here rather than trying to change the text directly. Most comments are about minor issues: because of the excellent work of the editors the page is already rather good.
‘People with ME/CFS experience delayed worsening of the illness’
I would mention some symptoms first and then explain PEM afterwards. For example: People with ME/CFS experience severe fatigue, unrefreshing sleep, and problems with memory or concentration. A delayed worsening of the illness after minor physical or mental activity, is considered the hallmark symptom of the illness. Other common symptoms include …
‘severe fatigue that does not improve much with rest’
Perhaps write: ‘severe fatigue that is not relieved with rest.’
Done something similar (relieved is a slightly more difficult word).
‘In some people, physical trauma or psychological stress may also act as a trigger. [10]’
I doubt there is reliable evidence for these triggers while this sentence gives the impression that there is. For infectious triggers we have good longitudinal studies showing increased incidence following, for example, EBV-infection. For stress or physical trauma, the evidence is merely anecdotal as far as I’m aware. Could perhaps be rephrased to: “some people with ME/CFS report that…” to better reflect the underlying weak evidence of the claim.
I've removed this, as you're not the first one to object. The new CDC page now puts much more emphasis on infection as well. —Femke 🐦 (talk) 18:22, 18 May 2024 (UTC)[reply]
‘In the ICD-10, the code for ME/CFS listed only (benign) ME, and there was no mention of CFS; clinicians often used diagnostic codes for fatigue and malaise, or fatigue syndrome, for people with CFS’
In ICD-10 volume 3, CFS was included in the Alphabetical Index, where it is coded to the G93.3 Postviral fatigue syndrome concept title term. I think that is why, if you search the ICD-10 browser and type in ‘chronic fatigue syndrome’ you are directed to G93.3.
https://dxrevisionwatch.com/icd-11-me-cfs/
In the ICD-10-CM (US clinical modification) CFS was temporarily listed under code R53.82 (perhaps this is what the Lim et al. 2020 review meant) but this has now been changed. It is now listed under G93.32 https://www.meaction.net/2022/10/06/new-mecfs-codes-in-us-icd-10-cm/
‘All types of activities that require energy can trigger PEM’
I think the text on PEM focuses too much on activity as a trigger, rather than exertion and exceeding one’s energy budget. For example, being in a noisy, bright space with too many stimuli can also cause PEM even if the patient is lying still and doing no activity (e.g. a hospital visit). On the other hand, some activities may not cause PEM if people manage to stay within their 'energy envelope’. The current text might be misinterpreted as if people with ME/CFS experience PEM after each minor activity, which certainly isn’t the case. It mainly tends to happen if you exceed a certain energy expenditure, while activities below that threshold may not cause PEM. The whole point of pacing, after all, is trying to stay as active as possible and avoiding PEM by staying just beneath that threshold.
I've added the example of the stimulating environment. In the main descriptions of PEM I'm relying on (NICE, BMJ, IQWiG, CDC), the energy envelope aspect isn't mentioned. Happy to add it if you know of a good source though. —Femke 🐦 (talk) 19:17, 23 May 2024 (UTC)[reply]
‘The decline often presents 12 to 48 hours after the activity’
Not clear what decline refers to. Perhaps change to: ‘The onset of PEM is often delayed by…’
Sleep problems
I think ‘unrefreshing sleep’ - waking up unrefreshed even after a good night sleep - is the most commonly used term and symptom in this area so perhaps move that up higher. I think that the IOM and Fukuda criteria only mention unrefreshing sleep and not sleep disturbances.
I've changed the introduction to use the words unrefreshing sleep, making clear this is the overarching problem, and that specific sleep disorders can sometimes explain it. —Femke 🐦 (talk) 13:11, 19 May 2024 (UTC)[reply]
Cognitive dysfunction
The text seems to describe results of cognitive tests. I would describe the symptoms more from the perspective of how patients experience it. For example: ‘Most people with ME/CFS have trouble concentrating, remembering things, or paying attention to details.’
‘Postural orthostatic tachycardia syndrome (POTS), an excessive increase in heart rate
after standing up, is the most common form of orthostatic intolerance in ME/CFS’
I see various issues in this statement. Postural orthostatic tachycardia is an objective measurement, a potential explanation of OI in terms of hemodynamics. But you can have POT without symptoms and some ME/CFS studies found that POT poorly explains OI or that ME/CFS patients do not have increased POT rates compared to controls. I would rephrase this to: ‘Several studies reported an increased prevalence of postural orthostatic tachycardia in ME/CFS, although others could not replicate this finding.’
‘People may also become allergic or sensitive to foods, lights, noise, smells or chemicals.’
Perhaps change to ‘People may also develop new food intolerances and become sensitive to lights, noise, smells or chemicals.’ Sensitivity to light and noise seems like quite a characteristic feature of the illness, especially in patients with severe ME. Perhaps somewhere on the page (in the symptoms section or severity section) it could receive more attention with an explanation that some patients wear earplugs and sunglasses to help cope with these symptoms?
changed the text so that it no longer implies that people become allergic to lights etc. The aids and adaptations part of management mentions the adaptations to hypersensitivity. Femke (alt) (talk) 12:13, 23 May 2024 (UTC)[reply]
‘Moderate severity impedes activities of daily living (self-care activities, such as feeding and washing oneself)’
Problems with self-care such as feeding and washing is more typical of severe ME. Patients with moderate have to cut back on social activities and may need help with household tasks such as cooking and cleaning. They are often homebound (rarely able to leave the house). Patients with severe ME are (mostly) bedbound, so mentioning homebound in this category understates their disability. For Very Severe I would mention that patients need help with personal hygiene and eating such as requiring tube feeding. The ICC primer has some ambiguities (that conflict with statements in the ICC paper), perhaps the NICE guideline is a better source for the severity descriptions.
I've given a better ADL example for moderate (cooking). I know there are a few severity gradings out there, but I'm following the one that seems most common, which defines severe as homebound, rather than bedbound (which is very severe). This is for instance how NICE, BMJ and CDC define it.
Risk Factors - ‘women are more likely to develop it than men.’
The difference is quite stark compared to other risk factors mentioned. DecodeME found 83% of patients are women, prevalence studies also find more than 75% are women, so perhaps this should receive some more emphasis.
In the epidimiology section we do have the numbers. It might be that the gender discrepancy is smaller for CFS than for ME/CFS. Or community-based samples have fewer women compared to diagnosed people with the illness. The epidemiological paper says it's 1.5-2x more common in women, and CDC says up to 4x as common. —Femke 🐦 (talk) 16:36, 22 May 2024 (UTC)[reply]
‘Those with a family history of neurological or autoimmune diseases also seem to be at increased risk, as do those with pre-existing neurological, autoimmune, or multisystem diseases.’
I noticed that the Grach et al. 2023 review mentions this, but I doubt there is reliable evidence for this. The references that Grach mentions (Bakken et al. 2014 and Nacul et al. 2020) do not provide data on this. I would leave it out.
Same with the later statement: ‘based on the observation that ME/CFS sometimes occurs in outbreaks and is connected to autoimmune diseases’. The connection to autoimmune disease is far from established yet as far as I know.
‘The levels of antibodies to EBV are often higher in people with ME/CFS, indicating possible viral reactivation’
There have been some conflicting results for this. For example: ‘Patients with CFS had a quite similar EBV IgG antibody response pattern as healthy controls.’
https://pubmed.ncbi.nlm.nih.gov/28604802/
‘A consistent finding in studies is a decreased activity of natural killer cells’
Don’t think this holds up any longer, as a large multi-site study failed to replicate these findings. Many of the studies in the Eaton-Fitch review are from their own Australian research team. UK biobank also found null results.
https://pubmed.ncbi.nlm.nih.gov/37013608/
‘ME/CFS is likely not a mainly mitochondrial disorder, based on genetic evidence’
Not sure what ‘based on genetic evidence’ can refer to here as there is almost no robust genetic data for ME/CFS – perhaps best to delete it?
Removed. Based on genetic evidence seems to mean based on mitochondrial DNA evidence. As most mitochondrial genes are in the nuclear DNA, this statement seems like a stretch? The Ponting review and the NIH roadmap don't make a similar statement, and the WASF3 paper may contradict this too. —Femke 🐦 (talk) 16:36, 22 May 2024 (UTC)[reply]
- ICC Onset after infection – Mandatory
The table in the section ‘Diagnostic criteria’ says that ‘onset after infection’ is mandatory in the ICC. Don’t think this is true – could this be an error?
This was partially my error, and partially an error on the IQWiG side. I misinterpreted what they meant by "pathogen". ICC has susceptibility to infection as an optional symptom. CCC has infectious onset as an "alternative" mandatory criterion, i.e. if it's starts after infection, sleep and cognitive issues are no longer mandatory. I've corrected the Table by combining it with the table in BMJ, and have ticked the box for flu / cold symptoms on Fukuda based on the other source. How I wish sources in this space were more accurate. —Femke 🐦 (talk) 20:13, 22 May 2024 (UTC)[reply]
‘time-contingent pacing’… Individuals with stable illness may then try to carefully and flexibly increase activity and exercise using the technique. ‘
I doubt that this time-contingent pacing is used much in ME/CFS community – it seems to come from the chronic pain literature where the term pacing has different meanings. In the ME/CFS community pacing is almost always meant to be symptom-driven to contrast it with time-contingent GET. Guidelines usually have some sentences that patients can try to gradually increase their activities if their feel able to, but this is not strictly time-contingent (and is consistent with symptom-contingent pacing). I don’t understand where this statement comes as both references (Goudsmit 2012 and NICE 2021) do not propose or mention time-contingent pacing for ME/CFS patients as far as I know.
‘Most trials on pacing find positive effects’
I would delete this statement. The PACE trial found null effects for pacing compared to specialist medical care and the Norwegian trial by Pinxterhuis et al also found null results.
https://pubmed.ncbi.nlm.nih.gov/26672998/
I don't think APT from the PACE trial is that similar to pacing. For instance, people had to go back to 70% of what they thought they could do to start with, leading to unnecessary deconditioning iirc. Anyway, better to trust a review here than to rely on primary sources. —Femke 🐦 (talk) 18:22, 18 May 2024 (UTC)[reply]
‘NICE removed their recommendation for this treatment in 2021’
It went one step further and actively warned against GET by stating: "do not offer people with ME/CFS physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS." So perhaps this could be added.
Research Funding
Lastly, two suggestions for this section.
ME/CFS was identified as a high-burden under-researched medical condition by a scoping study commission by the European Commission.
https://www.nivel.nl/sites/default/files/bestanden/1004310.pdf
Hope these comments were useful. Thanks for all the hard work that has already been put into this page! I'm happy to help improve it even further or help in finding appropriate resources and references. — Preceding unsigned comment added by Odobert (talk • contribs)
This is incredibly helpful! We're hoping to nominate this article to become featured in July and having feedback from somebody who knows the literature is amazing. Three new sources have recently dropped (the new CDC pages, the NIH roadmap and that German consensus paper), so I think they're is finally plenty of material to adress your comments above! —Femke 🐦 (talk) 18:22, 18 May 2024 (UTC)[reply]
level-5 vital article is rated GA-class on Wikipedia's content assessment scale.
Overall a good read. NW1223<Howl at me•My hunts> 19:10, 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)
Double QPQ is not required. This nomination is good to go. NW1223<Howl at me•My hunts> 18:12, 17 March 2024 (UTC)
Done
Removed —Femke 🐦 (talk) 08:02, 14 April 2024 (UTC)
Your addition to myalgic encephalomyelitis/chronic fatigue syndrome has been removed or altered, as it appears to closely paraphrase a copyrighted source. Limited close paraphrasing or quotation is appropriate within reason, so long as the material is clearly attributed in the text. However, longer paraphrases which are not attributed to their source may constitute copyright violation or plagiarism, and are not acceptable on Wikipedia. Such content cannot be hosted here for legal reasons; please do not post it on any page, even if you plan to fix it later. You may use external websites or printed material as a source of information, but not as a source of sentences. This part is crucial: say it in your own words.
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