Cochrane's Review of Exercise Therapy for ME/CFS

Pyrrhus

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Given all the drama over the update of the NICE Guidelines, one might be forgiven for forgetting about another important update regarding exercise therapy for ME/CFS:

The Cochrane Review of Exercise Therapy for ME/CFS

As most of you know, this is a long, sad story.

It can also be a confusing story, as there were at one time two separate updates being conducted simultaneously by Cochrane.

David Tuller 2018 said:
Cochrane–formerly called the Cochrane Collaboration–is respected worldwide for its systematic reviews of medical treatments. These reviews are often cited as the definitive source of information about treatment efficacy and safety.
[...]
But like any organization, Cochrane can get things wrong—as it has in the case of chronic fatigue syndrome. (Cochrane generally uses the term CFS, so I will also when referring to these systematic reviews.)
[...]
The most recent review of exercise therapies for CFS, which mainly included studies of graded exercise, was published in 2014. These systematic reviews and previous versions, all of which reported benefits from the treatments, were conducted by Cochrane’s Common Mental Disorders group.
Source: https://forums.phoenixrising.me/threads/dr-david-tuller-the-cochrane-controversy.61350/


A new version of the Cochrane Review of Exercise Treatments was published in 2017.
Dr Mark Vink 2018 said:
The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective. Because of the failure to report harms adequately in the trials covered by the review, it cannot be said that graded exercise therapy is safe. The analysis of the objective outcomes in the trials provides sufficient evidence to conclude that graded exercise therapy is an ineffective treatment for myalgic encephalomyelitis/chronic fatigue syndrome.
Source: https://forums.phoenixrising.me/thr...-fatigue-syndrome-is-not-effective-and.61850/


In 2018, Cochrane announced a temporary withdrawal.
A respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome (CFS) amid fierce criticism and pressure from activists and patients.
Source: https://forums.phoenixrising.me/thr...idst-deluge-of-complaints.61911/#post-1006898
Cochrane has temporarily removed a review from its database that claims exercise therapy is effective for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME).
Source: https://forums.phoenixrising.me/thr...ane-review-of-exercise-therapy-for-cfs.62040/


In 2019 Cochrane slightly amended its exercise review, but the amended review wasn't much better.
Dr Mark Vink 2020 said:
The Cochrane review concluded that graded exercise therapy (GET) improves fatigue at the end of treatment compared to no-treatment. However, the review did not consider the unreliability of subjective outcomes in non-blinded trials, the objective outcomes which showed that GET is not effective, or the serious flaws of the studies included in the review. These flaws included badly matched control groups, relying on an unreliable fatigue instrument as primary outcome, outcome switching, p-hacking, ignoring evidence of harms, etc. The review did also not take into account that GET does not restore the ability to work.
Source: https://content.iospress.com/articles/work/wor203174


Also in 2019, Cochrane announced a full update of the exercise review.
Cochrane said:
In October 2019, Cochrane announced its commitment to a full update the Cochrane Review Exercise therapy for chronic fatigue syndrome. The statement noted plans for: “a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.”
Source: https://forums.phoenixrising.me/threads/cochrane-is-reviewing-us-again.79204/


So where are we now? To find out, read MEAction's recent recap:

Cochrane Redux (2021)
https://www.meaction.net/2021/06/16/cochrane-redux/
 
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Given all the drama over the update of the NICE Guidelines, one might be forgiven for forgetting about another important update regarding exercise therapy for ME/CFS:

The Cochrane Review of Exercise Therapy for ME/CFS

As most of you know, this is a long, sad story.

It can also be a confusing story, as there were at one time two separate updates being conducted simultaneously by Cochrane.


Source: https://forums.phoenixrising.me/threads/dr-david-tuller-the-cochrane-controversy.61350/


A new version of the Cochrane Review of Exercise Treatments was published in 2017.

Source: https://forums.phoenixrising.me/thr...-fatigue-syndrome-is-not-effective-and.61850/


In 2018, Cochrane announced a temporary withdrawal.

Source: https://forums.phoenixrising.me/thr...idst-deluge-of-complaints.61911/#post-1006898

Source: https://forums.phoenixrising.me/thr...ane-review-of-exercise-therapy-for-cfs.62040/


In 2019 Cochrane slightly amended its exercise review, but the amended review wasn't much better.

Source: https://content.iospress.com/articles/work/wor203174


Also in 2019, Cochrane announced a full update of the exercise review.

Source: https://forums.phoenixrising.me/threads/cochrane-is-reviewing-us-again.79204/


So where are we now? To find out, read MEAction's recent recap:

Cochrane Redux (2021)
https://www.meaction.net/2021/06/16/cochrane-redux/
That's a big shame indeed. The German government bases it's recommendations on the Cochrane review. See the Answer to the small question of the Bundestag parliamentary group Bündnis 90 / Die Grünen.

The RKI didn't serve us here either citing Cochrane.
 

Pyrrhus

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And here is Cochrane's July update:

Cochrane Exercise and ME/CFS Review Update: July 2021
https://community.cochrane.org/orga...igh-profile-reviews-pilot/cochrane-exercise-1

Excerpt:
Cochrane said:
Report by Hilda Bastian, Independent Advisory Group Lead

Posted online: 4 August 2021

Note: Background information on this project is here. The views expressed in this report are those of the author, and are not necessarily shared by the Independent Advisory Group (IAG), the review team, or Cochrane.

This is the third monthly report on progress with this project. You can see a list of these reports here. This month, there are updates on:

Along with this report, we’ll be updating bios and disclosures of interest at the end of the month as needed. This month, there is an update for me.

And finally, a reminder that you can contact us directly at Cochrane.IAG@gmail.com

Hilda Bastian
31 July 2021
 

Pyrrhus

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Interview: Cochrane and NICE collaborate to improve health guidelines
https://www.cochrane.org/news/interview-cochrane-and-nice-collaborate-improve-health-guidelines

Excerpt:
Cochrane said:
Cochrane are signing a collaboration licence agreement with NICE, the National Institute for Health and Care Excellence, the UK government’s guideline organization. Cochrane has a long-established relationship with the NHS and the National Institute for Health research (NIHR), and Cochrane Reviews are already used to inform NICE guidelines. The agreement seeks to make this sharing of Cochrane evidence for use in NICE guidelines easier and more efficient.

Toby Lasserson, Cochrane’s Deputy Editor in Chief, and Gill Leng, Chief Executive Officer, NICE, sat down with us to explain more about the agreement and its impact...

A response:
 

Pyrrhus

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Letter from Caroline Struthers to Gill Leng, outgoing CEO of NICE
31 December 2021
https://healthycontrol.org/2021/12/31/letter-to-gill-leng-nice/

Excerpt:
Dear Professor Leng
[...]
I have attached the email I sent to Toby Lasserson*, Deputy Editor-in-Chief of Cochrane at the end of November.
[...]
One of my requests – to remove the flags falsely indicating the two Cochrane reviews [4,5] had been used to inform the recent NICE guideline for ME/CFS – has now been carried out. None of the other issues raised have been adequately addressed.
[...]
As Toby said in news article about the NICE/Cochrane collaboration, “Sharing evidence with NICE is part of a broader approach to help Cochrane to identify priority reviews, and to identify them early” [2]

Why, then, are Cochrane spending time and public money to produce a new review of the evidence for exercise therapy for ME/CFS, when NICE has just produced its own evidence reviews covering all interventions for the condition?
[...]
Finally, the response from Cochrane to my email concludes that NICE…
…have confirmed that details of the collaborative approach to support the use of both Cochrane reviews and the topic expertise of Cochrane review authors, groups and networks in the development of NICE guidelines will be included the planned update to the NICE Guidelines Manual expected in 2022
How will the update to NICE guidelines manual ensure that evidence reviews supplied by Cochrane, or other evidence synthesis suppliers, have not been influenced by people with vested interests in review findings? I fear that using an unregulated organisation like Cochrane, who are not subject to FOI, and who stonewall reasonable criticism of its reviews, would be a false economy.
 

Shanti1

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Way to go Caroline Struthers! I wasn't familiar with her before this, but she is certainly a qualified and articulate voice. Her letter to Cochrane was certainly more articulate than my brain-fogged attempt, lol.