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

It seems like we have more than sufficient grounds for a complaint and this number of organisations/charities, is significant. I expect the best chance of a productive response would require study of the specific criteria and conventions of the Charity Commission since it seems they have been unreceptive on a similar request.

 

From the Charity Commission perspective a Charity doesn't have to be 'good' at what it does, it simply has to fulfil legally defined criteria, and the Commission is the body that interprets the Law and sets the criteria. Getting the Commission to act when it doesn't see a need to, is near impossible short of going to Court, and Charity Law is complicated and therefore expensive.

As far as the charitable objects are concerned I think making a claim of failure would have account for that whole paragraph, Cochrane isn't saying it is about public health per se, but: THROUGH THE PREPARATION, MAINTENANCE AND PROMOTION OF THE ACCESSIBILITY OF SYSTEMATIC REVIEWS OF THE EFFECTS OF HEALTH CARE - this is huge get out because it pushes all impact of what Cochrane publishes onto the end user i.e those bodies who are influenced by Cochrane publications. The Commission is unlikely to be influenced by one or two 'bad' articles - it would probably require a number of prominent institutions making multiple criticisms before the Commission would consider that Cochrane was failing in its charitable pupose. The term "FOR THE PUBLIC BENEFIT" is not of help either - the Commission is very jealous of its power to interpret that and usually only invokes the 'not for public benefit' ruling as a nuclear option in the face of gross fraud or other criminality or where an organisation has clearly ceased to function.

 

The new home for Cochrane in Norway is certainly called the Norwegian equivalent of that.

I think sending a polite but disgruntled message to this institution might be a good idea. If they pride themselves on communicating with everyone then to find they have taken in some people who are distinctly unpopular with service users may alert someone to being careful about how publicity is handled.

 

What is your opinion on making a complaint if only as a formality or matter of record before moving on to other approaches. Or simply skipping this step as it is a waste of our time?

 

I just checked the UK FOI situation and found:

So we could only use this if an organisation such as NICE entered into a relevant contractual relationship with Cochrane and presumable the FOI request would need to be through NICE or any other relevant body. Could we ask any public body citing the CFS Exercise Review to confirm how they evaluated the safety of the advice arising from that review through an FOI? We are presumably on firmer grounds now that official bodies such as NICE have advised against GET, but Cochrane has not addressed the apparent contradiction between their exercise review and the NICE guidelines. Would similar issues relate to other countries?

Would it be feasible to make formal complaints to journals publishing articles advising exercise therapy based on this review? Given Cochrane in this situation is acting as a publisher is there any avenue to pursue their inconsistent responses and failure to address our concerns in this context, as @Caroline Struthers has done?

Is their any relevant action we could request from NICE?

 

Interesting, so has a public body paid Cochrane to carry out a review, or something similar, if so then that would be a basis to pursue i.e. submit FOI.

Another way to look at it is if Cochrane aren't affecting public health policy, then leave them to their own echo chamber?

 

Just to repeat a point I've made before because it's key to what the Commission is about. The Charity Commission has a dual role - it is a regulator of Charities, but it is also a promoter of charitable activity (as defined in Law)' as a social good and in this role provides support to Registered Charities. As a regulator the Commission is largely hands off, but in its support role its staff often have quite close contact with the Charities they oversee. So the Commission isn't set up as a simple consumer protection body and the way it views and deals with complaints is (cough) nuanced !

My inclination is that any complaint to the Commission needs to be formal, precise and clearly referrenced to the relevant parts of Charity Law with unequivocal evidence of wrong doing. At this point I'm still not clear there is a case that can be made against Cochrane in Charity Law.

I've rattled on previously about the Commission - see several posts following from here: https://www.s4me.info/threads/indep...d-by-hilda-bastian.13645/page-113#post-471419

 

Thanks!

I had awareness of the conflict of interest inherent in this organisation set up. I also thought it would be a cross every T dot every I deal.

Though I wondered whether given the fact that it is made so difficult for a complainant-even with ample justification according to basic principles of justice, to meet requirements set up in such a way as to deflect virtually all challenges- it might be worth us refusing to be deterred from asking despite a likely refusal to consider our request from CC.

Or if it would be better to turn our backs on such an unusable avenue, for now.

 

An IAG who, as best as we can tell, has zero powers. The promised updated review was not accepted by any working group, it is merely advisory. Even if it gets accepted and published, it would be, what, an independent review, competing for attention with the current one?

It's a "dog ate my homework" kind of excuse, except the kid doesn't even have a dog.

 

That's my assumption as well for why they don't care and don't bother. They are confident that in the worst case scenario no one but us will know or care about it. If anything, hubristic editorials are likely to be written about how they prevailed against activists.

At least for a while it will hold up. Eventually it won't, but they're only thinking about now and how it affects the people currently involved.

 

I think these FOI regulations are all derived from EU - which Norway is de facto a member of. Deleting your emails, i.e. after an FOI has been submitted, is a criminal offence - it's come up here in Northern Ireland i.e. police raiding a local council and seizing computers etc!

 

If I remember correctly Cochrane had promised to move ME/CFS from their mental health team to a more relevant team (sorry I can’t remember the correct terms) some years ago. Did anything ever happen with this?

It feels like once they failed to withdraw the previous version of the CFS exercise review and then Hilda Bastian’s IAG supposedly advising on stakeholder consultation for a proposed new exercise review seemed to grind to a halt, Cochrane have back tracked on all their commitments relating to ME/CFS. Also do we know if a writing team was ever established and if so who is involved?

 

That was my thought.
But I also wondered if the CC declines to act on our concerns, as they do for most, then Cochrane might be able to leverage that to some effect, to help put off others from looking at our concerns, look see they don’t have a case the CC don’t find any reason for concern. Or we demonstrate that we don’t understand how CC works, (ie that these hoops are too many to jump through, but not everyone knows that so people could be persuaded that we did an ungrounded submission) and therefore perhaps don’t understand other important aspects of the subject of our complaint.

I don’t see this as reason not contact CC, sooner or later, only wondered if there was anything more that might be considered before this stage before having to deal with two potential stone walls instead of one.

Still I am imagining that the charities in support of the S4ME open letter would support taking this further and therefore this would weigh against suggestions of a minority of patients.