Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

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Did you know nomination

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

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

(
)

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

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

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

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

WP:WAWARD) 07:03, 17 March 2024 (UTC)[reply
]

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

First paragraph

Another attempt, mostly based on #Pre-FAC comments from Ajpolino. The things to improve:

  • Make clear what delayed means
  • 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

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

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.
  • Change disturbances to sleep issues, as this better captures unrefreshing sleep per below. —Femke 🐦 (talk) 12:49, 19 May 2024 (UTC)[reply]
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]
Looks good to me Odobert (talk) 14:01, 27 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
- "substantial reduction in pre-illness activity level" - https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
- "substantial reduction in their ability to engage in pre-illness levels of activity" - https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0291364
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
- not eased much by rest[1][2]: 12 
-----
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.[1][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)
Agreed that 'persistent' is a good description, and doesn't have the same connotation as 'constant'. Ilike2burnthing (talk) 11:48, 13 May 2024 (UTC)[reply]
That version looks good to me. Ward20 (talk) 14:13, 13 May 2024 (UTC)[reply]
New NHS e-learning resource out as of a few days ago - 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/
From it:
"The fatigue of ME/CFS is so extreme that people are unable to participate in routine activities that were possible before becoming ill, such as work, school, social life and/or personal life. The debilitating fatigue of ME/CFS is worsened by activity and is:
  • not caused by excessive cognitive, physical, emotional or social exertion,
  • not significantly relieved by rest,
  • would not have been present before the illness.
[...] The worsening of symptoms can follow minimal cognitive, physical, emotional or social activity or activity that would previously have been tolerated."
Is this sufficient for us to add 'that would previously have been tolerated' to our description? Ilike2burnthing (talk) 02:52, 24 May 2024 (UTC)[reply]

References

  1. ^ a b c Cite error: The named reference CDCsym2021 was invoked but never defined (see the help page).
  2. ^ a b c d Cite 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?
  • I think the spoons image looks silly.

Thank you for your work on the article. Graham Beards (talk) 11:57, 13 May 2024 (UTC)[reply]

Replying in order:
  • 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?
Ilike2burnthing (talk) 13:09, 13 May 2024 (UTC)[reply]
Errm.. I was expecting @Femke to reply as they asked me to comment. [2] Forgive me for not making this clear. Graham Beards (talk) 13:36, 13 May 2024 (UTC)[reply]
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 !!

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]
Looks good, thanks! Ilike2burnthing (talk) 21:34, 19 May 2024 (UTC)[reply]

A couple of remarks regarding content

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 …

Done. —Femke 🐦 (talk) 13:11, 19 May 2024 (UTC)[reply]

‘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/

Removed the sentence. I know the ICD-10 is still used in many countries, but given the murkiness here, might be best to remove text rather than bore readers with the intricacies. —Femke 🐦 (talk) 09:55, 25 May 2024 (UTC)[reply]

‘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]
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/ Ilike2burnthing (talk) 02:38, 24 May 2024 (UTC)[reply]
The NHS uses the term in their description of pacing. Just like we already do :). —Femke 🐦 (talk) 09:13, 26 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…’

Done something similar. —Femke 🐦 (talk) 13:11, 19 May 2024 (UTC)[reply]

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.’

Rewritten from a more general perspective. —Femke 🐦 (talk) 13:31, 26 May 2024 (UTC)[reply]

‘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.’


Some resources: ‘Postural orthostatic tachycardia is not a useful diagnostic marker for chronic fatigue syndrome’ https://pubmed.ncbi.nlm.nih.gov/27696568/

‘Orthostatic tachycardia did not account for OI symptoms in CFS’ https://pubmed.ncbi.nlm.nih.gov/31159884/

‘Even though the rate of POTS was similar among ME/CFS and HCs, significantly fewer HCs reported OI symptoms’ https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02481-y

Sources seem to describe it consistently as a "form" of orthostatic intolerance, so I think that's fine. I've removed the claim it's the most common form of orthostatic intolerance, thgouh. I couldn't find a secondary source which supported your suggested text. The NIH report comes closest, stating: "It was noted that most research on dysautonomia issues in ME/CFS has focused on POTS, even though the incidence of POTS in individuals with ME/CFS varies widely in studies. Other forms of orthostatic intolerances should be investigated more closely in future research." —Femke 🐦 (talk) 11:56, 25 May 2024 (UTC)[reply]

‘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.
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.
Perhaps it would help to add another sentence to the severe and very severe categories. For example, based on the NICE descriptions: People with severe ME/CFS are homebound and can do only limited activities of daily living such as washing their face or cleaning their teeth. They need to rest in bed most of the time and are often very sensitive to light and sound. With very severe ME/CFS, people are mostly bedbound and cannot independently care for themselves. Some may need to be tube fed. --Odobert (talk) 15:54, 25 May 2024 (UTC)[reply]
I've expanded on the severe category (most of time in bed / wheel-chair dependent). Two paragraphs down I'm talking more about the type of symptoms that are associated with severe / very severe ME/CFS. —Femke 🐦 (talk) 17:57, 25 May 2024 (UTC)[reply]

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.

Removed the statement. —Femke 🐦 (talk) 16:36, 22 May 2024 (UTC)[reply]

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.

Weakened the statement. —Femke 🐦 (talk) 16:36, 22 May 2024 (UTC)[reply]

‘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/

Weakened the statement. (often -> commonly). —Femke 🐦 (talk) 09:49, 25 May 2024 (UTC)[reply]

‘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/

The NIH roadmap (p.12) still defines this as a robust finding, as does the recent Annesley paper. These are my two go-to sources on pathophysiology. No overlap in authorship as far as I can see. —Femke 🐦 (talk) 19:30, 22 May 2024 (UTC)[reply]

‘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.

I've removed mention of time-contingent pacing and rewritten the pacing section based on the new CDC pages and to a lesser extent the new German consensus paper. Good catch! —Femke 🐦 (talk) 19:31, 18 May 2024 (UTC)[reply]

‘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]
Perhaps change the word 'trials' into 'studies'. The Sanal-Haves review included 17 studies but only 3 were RCTs (one of which was the PACE-trial). — Preceding unsigned comment added by Odobert (talk • contribs)
Done. —Femke 🐦 (talk) 17:57, 25 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

Perhaps we could also insert a graph of NIH funding for ME/CFS over the years. Noticed one on page 148 of this recent NIH working group report. https://www.ninds.nih.gov/sites/default/files/2024-05/Report%20of%20the%20MECFS%20Research%20Roadmap%20Working%20Group%20of%20Council_508C.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]
Thank for all your hard work and due diligence @Femke! I agree with pretty much all your solutions - excellent work. For some claims (for example NK-cells) I tend to disagree with the main reviews themself so there is probably no point in discussing this further given Wikipedia's preferred approach to rely on secondary sources.
Any other way I can be of help to improve the page? I could ask others in the ME/CFS community to review the page and see if they can spot any errors or problems. On the other hand, I suspect that the content is already pretty good and the main obstacle to making it a featured article will be prose and readability for laypersons. Odobert (talk) 15:49, 25 May 2024 (UTC)[reply]
I was planning to ask one more experienced Wikipedia editor to go over the text before nominating. I'm also working with ChatGPT, asking it to identify overly difficult sentences as giving me alternative wording. About 20% of its suggestions are good :). If you spot anything that's overly jargonny, please let me know.
It would be lovely to have another expert look over the text. Wikipedia:Expert help is very welcome, but make sure that take into account Wikipedia's policy on Wikipedia:Canvassing: ask it in a neutral way, and ask a "nonpartisan" audience. —Femke 🐦 (talk) 16:08, 26 May 2024 (UTC)[reply]

Proposed new structure management

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

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

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

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

—Femke 🐦 (talk) 17:12, 28 May 2024 (UTC)[reply]

The article is written like a blog

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

The article is based primarily on clinical guidelines from NICE, IqWiG, and the CDC, and on the Mayo clinic and the BMJ sources on the illness. I believe those are the best sources on the illness you can get.
The article doesn't say the illness is worse than cancer and AIDS it says the quality of life of people with the illness is worse than examined cancers and HIV/AIDS. The QoL of AIDS is quite good, given effective medication exists.
It may feel like the article describes a more serious illness than you may be familiar with because of how it's currently defined vs how it was defined 10 years ago. Now, to have even mild ME/CFS, you need a 50% reduction in functional capacity compared to pre-illness. —Femke 🐦 (talk) 06:59, 29 June 2024 (UTC)[reply]
Just to underline, the comparison on QOL is sourced to a peer-reviewed study. Meanwhile, it’s not the case that "Most references are ME/CFS advocacy sites." I only see one such reference in almost 100 sources. Innisfree987 (talk) 07:55, 29 June 2024 (UTC)[reply]
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