Talk:Management of ME/CFS/Archive 2

Archive 1

Archive 2

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reference 23 and 24, Cochrane review

The comment seems updated with ref 24 but we suggest to remove ref 23, Thanks — Preceding unsigned comment added by HMill88 (talk • contribs) 10:16, 16 September 2017 (UTC)

Regarding "content added only to lead and not to the body"

Yeah, I did realise that when I added it. It was more of an intro rather than a summary...if you look at the first paragraph of the lede, none of that info is anywhere else in the article either. It should probably be rewritten. (I didn't have time to do that, but I think you should re-add my edit -- perhaps moving the entire lede to an intro section -- unless there is any other reason to revert it. I'm not sure what the layout should be, but you seem to have a better idea of how it should be laid out than me...) --sciencewatcher (talk) 02:15, 19 May 2018 (UTC)

yep this page needs a lot of work to update the sources and content, and yes, to make the lead summarize the body. i wonder why you added a 10 year old review - PMID 19122123 ? Jytdog (talk) 03:17, 19 May 2018 (UTC)

Why add a 10 year old review? 1. It was the best one I found. 2. There aren't a great number of high quality, well-cited reviews for CFS, and many of the reviews we already have are 10 years old. 3. This review addresses one of the most important issues regarding CFS treatment (that it causes some patients to get worse), but is a much better source than the various ranting blogs. --sciencewatcher (talk) 15:16, 19 May 2018 (UTC)

Out of date info

Much information is missing on the subsequent findings of the PACE trial. User:Starchify I think your comments that were unfortunately reverted from the CFS page are suited to this page - particularly on the PACE trial. I have added the current CDC treatment page and some primers in the externals links which could be used to avoid citing primary sources in the research section. Additional sources that could be included

• 2019 independent survey by NICE in the UK commissioned during the guidelines review survey
• Patient charity commentary on the survey results 2019
• Action for ME who were on the PACE steering group and promoted CBT and GET apologized for their role and endorsement and changed position to be against behavioral treatments or illness belief based treatments

"However, M.E./CFS is not caused by deconditioning, nor are its symptoms explained by inactivity. It is a complex multi-system disease involving neurological, immunological, autonomic, and energy metabolism impairments. The debility in M.E./CFS is much greater than is seen with deconditioning. (Van Ness et al, Workwell Foundation, May 2018)
For this reason, Action for M.E. does not support any therapeutic approach that assumes M.E./CFS is based on deconditioning." Amousey (talk) 16:01, 23 May 2020 (UTC)

Lede should be a summary of the page

Recent edits to the lede added material and refs that do not appear in the article. The lede should be a summary of the page itself. --sciencewatcher (talk) 18:45, 24 May 2020 (UTC)

"Placebo response" section

I just noticed this section. The only citation here is to a systematic review that examined the rate of study-defined improvement in various control arms from different treatment studies. Most of these control groups knew they were not getting any treatment, so in those cases, the measure doesn't have anything to tell us about the "placebo response". It probably has more to tell us about spontaneous rates of recovery.

Spontaneous rates of recovery are likely to be low in CFS, because the diagnosis requires a minimum duration of six months for the fatigue complaint. A group selected in this way is likely to show less spontaneous recovery than one presenting with complaints not subject to such a high minimum duration requirement.

Suggest clarifying here, perhaps including a change of title. Thoughts, anyone? — Preceding unsigned comment added by Wilshica (talk • contribs) 00:32, 24 March 2021 (UTC)

Agreed - not sure if this section should remain as it is. I would say it's appropriate to merge it with another section and provide additional clarification.Jananteeni (talk) 00:48, 8 May 2021 (UTC)Jananteenni

Not sure where you got that from. Did you read the study? It clearly describes the validity criteria, and which trials were double-blind and which were not. --sciencewatcher (talk) 17:00, 9 May 2021 (UTC)

PACE Study

Why is the PACE study not mentioned? [1] it seems relevant to the main claim that CBT and GET are the effective treatments — Preceding unsigned comment added by 173.71.191.135 (talk) 14:45, 14 April 2022 (UTC)

Cochrane

Exercise therapy for chronic fatigue syndrome by Larun (2017?) has multiple corrections plus new editor's note saying that they plan to start again from scratch (can't recall exact wording).

Many sources will be on main CFS page. - Amousey (they/them pronouns) (talk) 00:06, 18 April 2023 (UTC) - Amousey (they/them pronouns) (talk) 00:06, 18 April 2023 (UTC)

Second Paragraph

Its information is not considered true anymore and it uses a single outdated 2006 source. YannLK (talk) 21:52, 1 February 2024 (UTC)

Yes I agree. I have commented out that part of the lead until it can be brought up to date. Revising this entry to make it current will be a significant project. Innisfree987 (talk) 23:54, 1 February 2024 (UTC)

cheers, looks way better now YannLK (talk) 15:03, 2 February 2024 (UTC)

UK/NHS

• 2021 NICE guidelines replace 2007 guidelines, sources like Bagnall 2006 replaced with newer NICE commissioned evidence (all online)

Pacing / activity management now the main approach

• new compulsory criteria added Post-exertional malaise plus other criteria changed
• Evidence using the UK Oxford criteria now no longer considered valid, evidence for GET and CBT mostly doesn't include post-exertional malaise so downgraded

"There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, some symptoms can be treated or managed."

"Based on criticisms in the qualitative evidence of cognitive behavioural therapy (CBT) being described as a 'treatment' (cure) for ME/CFS, the committee considered it was important to highlight that CBT is not a cure for ME/CFS and should not be offered as such. Instead, it aims to improve wellbeing and quality of life, and may be useful in supporting people who live with ME/CFS to manage their symptoms and reduce the distress associated with having a chronic illness" NICE on CBT

• UK's PACE trial 2011 led to Freedom of Information Act hearing ordering the full release of data, which has been re-analyzed by multiple people- including original authors- and is seen as less reliable than before - referred to by CDC and NICE. See anon comment referring to this

• NHS Scotland- new info (NICE doesn't cover Scotland)]

• BACME (a docs group) who previously supported GET and CBT have changed their recommendations and released a statement about the changes. - Amousey (they/them pronouns) (talk) 00:06, 18 April 2023 (UTC) - Amousey (they/them pronouns) (talk) 00:06, 18 April 2023 (UTC)

Redoing of Article

I personally don't have the energy to commit to overhauling this article.

But I want to say that much of the information here is outdated and based on single studies which were not necessarily corroborated and not on consensus amongst researchers.

Many supplements, and treatments that are not recommended (GET/CBT), are given a very big presence in the article.

At this point in time, there are no approved treatments for ME/CFS, however, pacing is recommended, this article gives the false impressions that there are many "possibly effective" treatments of ME/CFS.

I question whether the existence of the article in its current form does more harm than good. YannLK (talk) 03:33, 7 April 2024 (UTC)

There are two options, given limited resources. First is to make this a redirect to our main article. The second is to cut this article to its bones, removing a lot of old stuff. Very slowly, as editor time allows, we can start expanding how symptom management works.

I prefer the second option, as there is quite a lot of knowledge about symptom management in high quality secondary sources such as the BMJ Best Practice and the mayo clinic which is too detailed for the main article. In particular, there are management options for orthostatic intolerance, MCAS, and pain. —Femke 🐦 (talk) 15:43, 12 April 2024 (UTC)

That sounds reasonable.

As always a lot of us in the ME/CFS community want to thank you Femke for all the work you are doing :). YannLK (talk) 17:38, 13 April 2024 (UTC)

Section Distribution

Not sure exactly how we should edit this but I don't think either CBT or GET deserve their own sections.

There should probably be one section that is something like: "Non-Pharmacological Therapies" under which we have CBT for coping with the illness and Occupational therapy etc.

And then another section called something along the lines of "Historical Treatments" or “Controversial Treatments” where we have GET and CBT intended as a cure. YannLK (talk) 14:44, 14 April 2024 (UTC)

We could also discuss them under headings like "exercise" and "psychotherapy". That way we can put them in context of how exercise should be done (usually only stretching-like exercises; more only if patients think they can very slowly go to a higher baseline of exercise) and how psychotherapy should be done (based on coping, CBT-I for insomnia). —Femke 🐦 (talk) 07:11, 19 April 2024 (UTC)

That sounds good to me :) YannLK (talk) 13:52, 19 April 2024 (UTC)

Usage of #Controversy section in PACE trial page

Hi, I made a page specifically on the PACE trial (with the help of Femke), and reused or rephrased some sentences and paragraphs from the Controversies section of this page. This is with the intention of heavily cutting down the mention of the PACE trial in this page, as as Femke has pointed out it is WP:UNDUE. YannLK (talk) 10:53, 4 May 2024 (UTC)