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

I agree Peter. Cochrane have no wish to communicate constructively with the patient or scientific community.

edit: if I were to be in a position to write which unfortunately I am not, I would consider writing to my MP who last week committed to going to the APPG. He is a new MP and hopefully, the APPG will have introduced him to some of the issues around ME. My last MP Ed Davey would sometimes send on my communications with him to an appropriate person in government. It all helps I think.

edit 2: I've just Wikied Andrew Gwynne and read that in 2020 he had long covid for 16 weeks. Would this have given him any insight into ME, and helped him develop valid views on exercise in ME?

 

I think I've got it as text.

However, to make a version that was in any way readable, I had to reformat it. I deleted the links and images, and now the conversations follow on reasonably neatly. But it's not a true archive of the original site, just a record of what people said and when.

 

Thank you @Kitty I only use an iPad now and my IT skills are fast disappearing.

 

This is a link to a web archive version, but I'm not sure whether it'll foul up on different systems. I had to do it as a Dropbox link because the S4ME site doesn't enable uploads in this format.

https://www.dropbox.com/scl/fi/4rmz...ey=66pa49vt9jw23st9eazj2v8vj&st=x9dwgvle&dl=0

ETA: It may not work if you try to open it direct from the link. I had to download the file first and then open it.

 

Thank you I have saved it to my files too

 

Hilda Bastian has commented on Bluesky on behalf of the IAG:

https://bsky.app/profile/hildabast.bsky.social/post/3ldkco5vmbc2q

 

@dave30th has posted a new piece in the Trial by Error series that brilliantly excoriates Cochrane’s decision to abandon the new exercise review process, whilst still not withdrawing the the flawed 2019 version.

see https://virology.ws/2024/12/17/trial-by-error-cochrane-tells-me-cfs-patients-to-go-f-k-themselves/

(don’t know if this also needs posting in any other threads)

 

Maybe the protocol should be published on Qeios to get it into the public domain as soon as possible.

 

Lobbying Cochrane's funders, which are mostly governmental bodies and some charities, seems like possibly one of the best options. Cochrane repeatedly make the point that the entire point of their organisation is "Trusted evidence. Informed decisions. Better Health", engagement with consumers, accountability, transparency, integrity, etcetera, etcetera

That's one reason why they get funding. Clearly, this shows they're actually not very good at those things, so they seem like a pretty poor choice for putting funds. This could, maybe, be done in the form of an open letter to Cochrane's funders? Particularly emphasizing the point that Cochrane is failing its stated values and goals on multiple counts

I'm skeptical complaints will get anywhere as they seem to have perfected the art of not responding to complaints.

 

Welcome! – Project Talk Page

Dec 17 archived version in the Wayback Machine, to add to

 

These are the first replies to you Trish from Hilda that I haven’t felt to be inappropriate and offensive.

I am also very much inclined to believe that Hilda is genuinely dissatisfied with this outcome.

However my concern would be that she will ultimately adopt a position of powerlessness that is not altogether genuine in the face of this decision.

HB is a very influential person and while of course others with more power and influence have directed this process, I feel at this point in her well established career and having actually created the menace to public healthcare that is Cochrane, courage and leadership is required address the consequences.

I hope this will manifest itself for HB and that she will at last be prepared to take responsibility for the damage her enterprise has caused, and burn some bridges.

That HB will leverage her position to do some damage herself. To other influential and highly exploitive individuals. Should that be what it takes to resolve this situation in favour of positive health outcomes for members of the public.

I assume that public confrontation directed towards the individuals who have chosen self interest over service would be necessary.

If some people weren’t afraid of a little public scientific inquiry and other people weren’t afraid of those people we’d not be where we are now.

 

13,083 signatures at time of posting.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

Are your exchanges public at this point? I think your instinct about Hilda is on target. It has always seemed like she's been in a squeeze between trying to do what's right and having to deal with Cochrane.

 

The new statement from Soares-Weiser--oops, sorry, her "office"--is a complete repudiation of those earlier comments.

 

For sure hitting their funding is the only way to get any traction. They are currently behaving in a way that is contrary to what a charity is expected to do in general, but explicitly as you state in terms of producing trusted evidence and engaging with consumers, which is something they often boast about. In fact they do none of this.

And I would argue that Cochrane themselves gave the best argument for their immediate defunding: they claim to not have the resources to make an update to a minor review, even though all the work was being done independently by a writing group and an advisory group. They are entrusted with legitimacy for producing reviews, somehow, but have said explicitly that they can't handle the workload, meaning that public bodies are offloading a responsibility to an organization that cannot even perform basic functions.

There are two fronts here: grants and such that they get from funders, and licensing from their library. I don't know if we can muster the workload to attack both, but I think this is the winning strategy. Anyone who licenses their library must be aware that this organization has no capacity to perform even the most basic quality control and does not respect their own rules, let alone is bothered by clear evidence of harm resulting from their ineptitude.

We should not bother much with generic complaints, they won't achieve anything. We hit them in the only place that can hurt them: their bank accounts. Especially as they are already on a downward curve in both funding and credibility.