2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

Binkie4 said:
Sorry- I've missed some of the thread but do we have a date for the next APPG? i wrote to my MP before the last one and was told by his team he waS interested but I couldn't find his name on the list of attendees.
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Am replying to myself but don't yet have the date of the next APPG meeting. I have tracked down the draft minutes vie AfME link.
https://appgme.co.uk/wp-content/uploads/2024/12/2024-12-17-APPG-DRAFT-Minutes.docx
It says that meetings will be held quarterly which means the next meeting should be in about a month's time. I was disappointed that, while it said that there were many apologies for non attendance, those sending apologies were not named. It would have given us a clue as to which MPs were showing an interest in ME so we could follow up. Hopefully there will be more attendees next time as numbers were low.

There are major issues which were at the fore last year, primarily care of severe patients and the implementation of the delivery plan, which I hope the new APPG will pursue. I want to nudge my new MP again.

MODS- apologies if this post is off track. The thread is about Cochrane but the APPG came up and I followed up. Please could you resite if appropriate.
 
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Trish said:
Hilda Bastian on Bluesky:
https://bsky.app/profile/hildabast.bsky.social/post/3li6xkxp3bc2r

‪@hildabast.bsky.social‬

#CochraneStuff This is getting complicated, so I've started a page to keep track of what I post about the Cochrane Collaboration across platforms: hildabastian.wordpress.com/cochrane-stu... New today: My open letter asking the Cochrane Board questions about transparency of governance and minutes.
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Hum. She's asking for board meeting minutes. I can't think of any other reason than she expects, or knows, it was discussed, and they want to hide those discussions.

Then again, given that this is Cochrane, they could just as well have dozens of other shady reasons to do this.
 
Hilda Bastian has posted on her new Cochrane Stuff page saying she has submitted to Cochrane Comments about missing comments from previous versions of the review that should still be visible attached to the current version.
Her post starts:
Comment on the Cochrane Library: All comments on this review are not displayed
The PDF versions of this review show that there were 12 comments by readers between 2013 and 2018. Of those 12 comments, 6 comments and replies (by an author or editors) are not shown on the web version.

The missing comments from the web version are by: Tom Kindlon (2015, comment 1 of 2), Robert Courtney (April 2016 and May 2016), Richard Gardner (2017), Adrienne Wooding (2018), and Mark Vink (2018).
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more at link.
 
Ah, that's just Cochrane's commitment to transparency and accountability. If they hide comments denouncing obvious malfeasance, no one will know about the malfeasance. After all, it can't be a good cover-up if it doesn't cover up inconvenient truths.
 
Dolphin said:
Article in German
Cochrane unter Druck: Entscheidung zur Überarbeitung der ME/CFS-Studie sorgt für Empörung

https://www.dmz-news.eu/2025/02/18/...beitung-der-me-cfs-studie-sorgt-für-empörung/
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A good article. How high a profile does this outlet have?

Google translate:

Cochrane under pressure: Decision to revise ME/CFS study causes outrage

The scientific integrity of the Cochrane Collaboration has come under criticism after the organization abruptly stopped its planned independent revision of a controversial review on exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In addition, the review, originally published in 2019, has now been re-dated to 2024, although the content has remained unchanged and is based on outdated studies.


Scientific independence in danger?

Cochrane is internationally recognized for its evidence-based reviews of medical interventions. Due to ongoing criticism of the methodology of the study published in 2019, Cochrane commissioned an independent group of authors and an independent advisory group (IAG) to re-analyze the study. The IAG consisted of representatives of ME/CFS patient organizations, medical specialists and experts in systematic reviews.

However, after almost five years of intensive work, countless meetings and the review of thousands of pages of scientific literature, the project was suddenly stopped in December 2024. Cochrane justified this by saying that there was no new relevant evidence that would justify a revision.


Outdated studies as current evidence?

The decision to update the review simply by adding a new publication reference without revising the content is particularly controversial. This could give the impression that a new scientific review has taken place and that the statements made therein are still valid. In fact, however, the analysis is based on studies that are at least ten years old and are no longer considered sufficient according to today's scientific standards.

A key point of criticism is that the original study did not differentiate between patients with and without post-exertional malaise (PEM). PEM is considered a leading symptom of ME/CFS and is also widespread in long-COVID patients. Numerous sufferers report a deterioration in their health after exercise therapy, an observation that is supported by current scientific research.

Protest from science and patients

The IAG has expressed its concern about the sudden turnaround in an open letter to the Cochrane committee. The experts are particularly critical of the lack of transparency in the decision and the refusal to publish an editorial note pointing out the outdated data.

"As an organization that claims to provide trustworthy evidence, Cochrane has an obligation to deal responsibly with outdated reviews," the letter states. A response from Cochrane is still pending.


Loss of trust in Cochrane

The controversy surrounding the ME/CFS review is not the first time that Cochrane has come under fire for poor scientific work. An earlier review on the effectiveness of masks against COVID-19 was sharply criticized in professional circles, as was an analysis of steroid injections during cesarean births that was based on flawed studies.

"At a time when we depend on reliable scientific institutions, it is frightening that we can no longer rely on Cochrane - neither on issues of ME/CFS treatment nor in other essential areas of public health," commented Jaime Seltzer, scientific director of #MEAction, an organization for ME/CFS sufferers.

The current debate raises fundamental questions about scientific integrity and the responsibility of institutions such as Cochrane. It remains to be seen whether and how the organization will respond to the growing pressure.
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Trish said:
Hilda Bastian has posted on her new Cochrane Stuff page saying she has submitted to Cochrane Comments about missing comments from previous versions of the review that should still be visible attached to the current version.
Her post starts:

more at link.
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The deletion of these comments must be very recent. There is a comment count at the top of the right column on the Cochrane page for the review (https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full). When I last looked just a couple of weeks ago, it showed 25 or 26 comments. It has now dropped to 20.
 
Robert 1973 said:
My MP has indicated a willingness and enthusiasm to submit questions about ME/CFS on my behalf. Any suggestions for anything she could usefully ask of anyone pertaining to the Cochrane review of exercise therapy?
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Further to my posts and the responses above I have drafted the following written parliamentary question which I am minded to ask my MP to submit. It may be a waste of time but so be it. I can’t find details of how questions need to be formatted but they all seem to be very short and begin “To ask the…”

Corrections and suggestions welcome:


To ask the Secretary of State for Health and Social Care if he is concerned about Cochrane’s decision to abandoned its plan to update its review of exercise therapy for chronic fatigue syndrome [1], given that: (a) at the time the review was published Cochrane was funded by the NIHR; (b) Cochrane’s editor-in-chief admitted the review was not fit for purpose [2]; (c) the review directly contradicts the NICE Guideline for ME/CFS [3]; (d) over 15,000 individuals and 79 ME/CFS and Long Covid organisations have signed a petition calling for the review to be withdrawn [4,5]; (e) the decision to abandon the update has been criticised by the Independent Advisory Group for stakeholder engagement for the review [6]?​







 
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