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

They investigated themselves and found that they are the prettiest in the land.

 

Mirror, mirror on the wall … … ….

Where is the handsome Prince when you need one?

 

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.

 

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.

 

Interesting omissions!

 

Certainly important critiques.

 

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.

 

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/

 

A good article. How high a profile does this outlet have?

Google translate:

 

Allegedly it had around 100,000 readers as of 4 years ago.

But this isn't an actual newspaper with editorial staff.

https://medienwoche.ch/2021/05/20/gibt-es-eine-mittellaendische-zeitung/

 

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.

 

15,750 petition signatures at time of posting.

 

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]?​

1. https://www.cochrane.org/news/update-exercise-therapy-chronic-fatigue-syndrome​

2. https://www.cochrane.org/news/cfs​

3. https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs​

4. https://www.s4me.info/threads/s4me-...fs-exercise-therapy-review.34973/#post-491234​

5. https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33210062​

6. https://hbprojecttalk.wordpress.com/2025/01/24/independent-advisory-group-open-letter-to-cochrane/

​

 

Cochrane denies this as far as I can tell. So maybe a direct quote they can’t deny? Or is it better for the sake of brevity.

 

@dave30th might have one.