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

[Ash]

Are the UK offices of Cochrane the only target with respect to challenging their actions as a charity?

Is there scope to query the Norwegian branch's performance as a charity? Or another branch?

Is that up to date, I forget which university was to be their new home. Perhaps we can make people at that university aware?


@Caroline Struthers - do you think a complaint from us (or 50 ME/CFS organisations) could achieve anything?

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.

 

[Midnattsol]

Takk til ME Foreningen Oslo og Akershus for signing the letter!

 

[CRG]

For an organisation set up to provide up-to-date systematic reviews on treatments for all diseases, all they really are is a publishing house that specialises in systematic reviews.

But they are also a UK registered charity, whose stated aim is primarily about the "protection and preservation of public health" (Cochrane's charitable objects)

In this instance and I suspect in all others, they are putting their unwillingness to withdraw an existing review above public health. They seem to care more about not upsetting review writing teams who have refused to retract or withdraw their outdated and incorrect reviews than about public health. The same has happened over the awful masks review that has harmed people during the pandemic. See this thread.

I think the senior editorial team have lost sight of public health and are more concerned with status, empire building and never admitting they are wrong.
The empire can't crumble fast enough, if these examples are typical.

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.

 

[Jonathan Edwards]

Is that up to date, I forget which university was to be their new home. Perhaps we can make people at that university aware?

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.

 

[Ash]

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.

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?

 

[Peter T]

I just checked the UK FOI situation and found:

The Freedom of Information Act (FOIA) doesn’t generally apply to limited companies, sole traders or charities. However, if you supply services on behalf of a public authority, you may hold information in connection with those services which could be requested under FOIA.

The public authority is responsible for responding to the request, and for deciding whether the information can be released to the public. You must support them by providing any information you have that they’ll need for their reply.

see https://ico.org.uk/for-organisations/advice-for-small-organisations/frequently-asked-questions/freedom-of-information/#:~:text=The Freedom of Information Act (FOIA) doesn't generally,could be requested under FOIA.

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?

 

[FMMM1]

So we could only use this if an organisation such as NICE entered into a relevant contractual relationship with Cochrane

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?

 

[CRG]

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?

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

 

[Ash]

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.

 

[rvallee]

They then go on to try to blame the IAG who they have now put in a very difficult position of making them responsible and trying to make them accountable for cleaning up Cochranes' mistakes

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.

 

[rvallee]

I may be missing something obvious, but who will know? All of this - besides this forum and Cochrane and the IAG , how many will know? Enough for it to matter?

If I'm Cochrane, this may be a closed loop as far as they are concerned.

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.

 

[Midnattsol]

Is there scope to query the Norwegian branch's performance as a charity? Or another branch?

The Norway part should be able to be quaried since it's at FHI which is a public body, the emails between the authors and David Tovey (?) came from our equivalent of FOI requests. Western Norway University of Applied Sciences (they are not allowed to use "University" in Norwegian though) should fall under the same rules (that said, there has recently been a several scandals in Norwegian news were the right of access to this type of information has been denied wrongfully. This also includes an episode of Signe Flottorp at FHI deleting her emails so they could not be provided).

 

[FMMM1]

This also includes an episode of Signe Flottorp at FHI deleting her emails so they could not be provided).

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!

 

[Midnattsol]

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!

The problem here has not just been deleting emails, but that organizations or state institutions have used a loophole claiming that communication is "within organisation"/"internal communcation" and thus not eligible for FOI requests. This was used to discredit pwME when researchers related to the Lightning Process study at NTNU/UiO claimed they were being asked for internal communications.

 

[Trish]

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?

My understanding is that the new review, if it is ever produced by the writing group and advised by the IAG will then go through the peer review process normal for Cochrane reviews, and if it passes peer review and is accepted by whichever Cochrane editors are tasked with deciding, it should be published as a direct replacement of the 2019 review in the Cochrane Library.
But there are plenty of potential hazards along that route which might trip it up so we get stuck with the 2019 review for a very long time.

 

[Peter T]

whichever Cochrane editors are tasked with deciding

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?

 

[Trish]

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?

From the FAQ's last updated June 2021
https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-1

The editorial "home" of the review is now the Cochrane Musculoskeletal, Oral, Skin and Sensory Network (MOSS) Network, in collaboration with the Cochrane Pain, Palliative and Supportive Care (PaPaS) group.

Edit:
There's more detail about this under the heading

2. Editorial arrangements for the review
in Hilda Bastian's May 2021 update:
https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-1

 

[Hutan]

A shout out to the person from Latvia who signed the petition recently - bringing the total number of countries that we have signatories from to 72.

That does include some very small entities that I'm not entirely sure qualify as countries, but the Change.org data analysis tool separates them out, so I won't quibble.

Here's the list of the top sizeable countries by signatures per million of population:
New Zealand 123.6
Norway 94.8
UK 40.8
Australia 35.9
Sweden 35.4
Denmark 34.5
Netherlands 26.1
Canada 19.8
Belgium 10.8
Ireland 9.1

A number of the smaller countries are looking very good on this measure, but their small population is a major assist. Isle of Man, damn good job at 82.6.

I've got to say, biased as I am, New Zealand is still doing amazingly, with numbers continuing to grow each day. It's lovely to see the names come in from around the country. Great also to see numbers increasing in Sweden.

There are some countries that have much less representation than we might have expected both in terms of a per capita measure and an absolute measure, for example the US. I think that's because we haven't managed to get any organisation signed up to the campaign yet - we keep working on it. Possibly there's a perception that the Cochrane review doesn't affect people in the US so much, but I think we've seen it still cited in new medical textbooks in use there. I'm not sure why we haven't seen a big response from Germany or France.

We are still hearing from some organisations that it will all be fine when the IAG makes its announcement 'in a few weeks', and so they don't see the point in adding their names to the campaign.

Nevertheless, 51 organisations signed up - that's absolutely brilliant.
51 organisations who work to support people with ME/CFS rejecting a review recommending exercise therapy versus the 51 unhappy individuals on the Anomalies paper.

 

[Sean]

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?

Arguably best to tick every formal admin box along the way, so they can't say you didn't try it.

One of the most powerful tools we have is going through all the formal processes, and getting the important stuff on the formal record. Then nobody can say they were not informed.

 

[Ash]

Arguably best to tick every formal admin box along the way, so they can't say you didn't try it.

One of the most powerful tools we have is going through all the formal processes, and getting the important stuff on the formal record. Then nobody can say they were not informed.

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.