Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Trish said:
I agree there is no useful evidence of efficacy for GET in ME/CFS. However, as has been demonstrated time after time by surveys, there is credible evidence of serious harm.

Cochrane reviews, according to their own handbook for reviewers, are supposed to include harms evidence investigation.

The protocol for the old reviews includes herms.

So a valid review on the old protocol should have concluded that the evidence for GET is very weak, and far outweighed by the evidence of harm. And therefore that exercise therapy should not be offered to people with ME/CFS.

If Cochrane editors had the courage to stand up to the psychosomatic supporters among them, they could have done that long ago. The evidence was all there if they bothered to look.

A Cochrane review that stated categorically that GET is harmful, and that there is no evidence supporting the claims that specialist therapists can do GET safely, would be very helpful.
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Point taken.
 
Trish said:
No monthly updates since December 2023
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It was mostly an update about reporting possible future things, nothing to report, so not even that. Nothing happened, so there was nothing to report, and what we were told is partial at best. 6 months later, still nothing. So that was really just for show. As far as we know, nothing is happening anyway. We can't trust that the information Bastian tells us is true, and no one else says anything. The only new thing was about some note and we can't even trust that this is happening, so that wasn't a real report.

As far as I'm concerned, until proven otherwise with actual things to report, this is dead in the water. And likely always was. The only way this changes is if it becomes overcome by events, if factors outside of us and Cochrane force the issue to move. Like a research breakthrough. The rest is just lies to pretend that they're following their own rules, while not bothering to even respect the spirit.
 
Not sure where best to post this, but in Australia the RACGP has recently 'updated' their ME/CFS (they use CFS/ME) guideline, changing only a few terms that all mean the same things, and continues to cite the Cochrane review as evidence for GET. They simply rename Graded Exercise Therapy as Incremental physical activity while keeping everything else the same.

It also cites the PACE trial, in fact directs patients to its manual, which is the main piece of evidence for the flawed Cochrane review. It appears that Cochrane co-founder Paul Glasziou was responsible for it. Glasziou has also signed and promoted the "anomalies" editorial written by PACE ideologues, although it's unclear what precise role he had in it. It's not as if it's hard to find MDs willing to write this crap.

https://www.s4me.info/threads/australia-racgp-get-for-cfs.24076/#post-528087
 
Trish said:
Also Glasziou along with Peter White was one of two advisors to the Cochrane review.
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Hutan said:
And of course Paul Glasziou was Hilda Bastian's PhD supervisor and coauthored a number of papers with her.
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Hard to see how there is going be any real progress at Cochrane any time soon. Going to need a round of retirements at the senior level, at the very least.
 
Just thought it would be worth flagging up the petition to members who have joined the forum in recent weeks

we are asking Cochrane to withdraw their review of exercise therapy for CFS.
the petition is staying open for signatures in the absence of action by Cochrane we’d appreciate your support. More info in the original post on this thread through the link below.

https://www.s4me.info/threads/petit...l-2019-exercise-therapy-for-cfs-review.35109/
 
Fantastic news - Solve M.E. have agreed to be a supporting organisation, signing the original open letter. It is great to have this large US charity on board with the campaign.

(Actually they agreed to support the campaign at the end of last year, but, in the blur of a family health emergency, I missed the email.)
 
Hutan said:
Fantastic news - Solve M.E. have agreed to be a supporting organisation, signing the original open letter. It is great to have this large US charity on board with the campaign.

(Actually they agreed to support the campaign at the end of last year, but, in the blur of a family health emergency, I missed the email.)
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At this point, I don't know who could do that work, but I would find it worth highlighting that probably over 80% of the major associations, charities and organizations dedicated to ME/CFS support this, and support a biomedical-only approach. And that's probably an undercount. Depending on geography, of course. There are organizations we don't know of, but of the ones who are known on the Internet, almost all of them signed it, and almost all of them agree that the psychosomatic/psychological model is wrong, invalid and harmful.

It would blow the whole "small minority" lie to bits. Not that it ever had any legs, or that anyone saying so cares that it was never true. But given the prominence of Long Covid, how it made ME/CFS more prominent, I think this would be the next best major point to emphasize, especially as LC organizations mostly agree with it. Opposition to CBT & GET is overwhelming, found in support for this petition, in studies, in surveys, in news media, everywhere. It is simply a lie, one where I think we have reached critical mass to be on the offensive with, rather than defend each utterance of the lie.
 
Caroline Struthers said:
My guess is Hilda is "following orders" not to engage. But in an entirely "independent" way ;-)
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Hilda Bastion lasted posted on her blog relating to the new Cochrane exercise review process on the 18th of March:

Hello, Trish
As I reported in November,* Cochrane’s priorities changed, firstly with the pandemic, and then because of changed circumstances for and within the organization. That does not mean that it was never intended to be a priority, even though it is not currently one. However, the way is being cleared for this project to progress, and it will soon be a high priority for me.
Hilda

• https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-3
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Both @Trish and myself have comments that have been waiting in moderation since March, as presumably have other people as no new comments at all have appeared since. With a project update due in January 2024 and in March Hilda saying progressing ‘this project … will soon be a high priority for [her]’ I guess this independence has extended such that all communication has been stopped. After all we were promised an innovative new approach to consultation.
 
It now seems to me that Cochrane (and Hilda now too) are totally unable to be transparent or honest about anything to do with ME.

By “unable”, I mean that they are now so backed into a corner, that there is no plausible excuse they can make for what has happened and is continuing to happen about the problem exercise review.

Their only approach left is a head-in-the-sand approach, with an occasional toothless promise that things will improve.

Add to that a few jibes about how we (the patients) need to be patient, and trust their systems to self-correct. Yet at the same time they want us to give out, so they can blame the “vexatious” patients as their review delaying tactics continue.

I suspect they want this to become old news, so they can say we are “always complaining”.

Then they can sit back and continue to do nothing.

The stalemate is to their advantage. But I also think it is becoming more difficult for them.

(Sorry no new ideas here - I’m just having a vent. :bear:)
 
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