Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

My response to Charity Commission - worth a shot eh?!

Dear Lorraine Ross

On your raising concerns page (https://forms.charitycommission.gov.uk/raising-concerns/) you say concerns should be raised if there is an issue of “serious harm to the people the charity helps or other people who come into contact with the charity through its work”

Your response letter says you have considered “…the risk to anyone who comes into contact with the charity, along with the risk to the charity itself”

My complaint was about serious harm to the people Cochrane is supposed to help. My evidence was the decision taken to publish a report which still fails to highlight that there is no evidence for a meaningful benefit of the treatment under review. Not only is there no evidence of benefit of this treatment, there is also evidence of harm. This has led it to being removed as a recommended treatment by NICE. https://www.nice.org.uk/guidance/ng206

Why did you not say you had also considered the risk of serious harm to the people the charity helps when you made the decision? If this was an error, please re-write your response to include these words. If you didn’t consider the risk of serious harm to the people the charity helps as well as the risk to “anyone who comes into contact with the charity, along with the risk to the charity itself”, please let me know why, given this is on the raising concerns webpage, and is the whole basis of my complaint?

With best wishes

Caroline
 
Caroline Struthers said:
Heard from the Charity Commission. Love this sentence "We appreciate that sometimes decisions made by charities may be unpopular with some interested parties".

They go on to say are only looking at risk to "anyone coming into contact with the charity" and "risk to the charity itself". Cochrane have just lost all its UK funding for being terminally crap at their job, so I think they did put themselves at risk over many things. But anyway.

The CC failed to mention the risk to the "beneficiaries" of the charity from the poor products (aka published reports) it produces, specifically, but unlikely to be limited to, the Exercise revewi. On the complaint form (https://forms.charitycommission.gov.uk/raising-concerns/) it clearly says it deals with risk of "serious harm to the people the charity helps" as well as risk to "anyone who comes into contact with the charity". But they have only mentioned the latter in their letter. I will write back and point that out, (again). I will ask them to spell out that they have also considered the serious harm to beneficiaries, which was the basis of my complaint.

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Thanks Caroline.
Yes, I seem to recall that Cochrane had a vision of "directing" health care worldwide --- hard to believe the Charity Commission are so blinkered that they don't view that falls within these criteria --- "serious harm to the people the charity helps" --- "anyone coming into contact with the charity" [argument 1].
If Cochrane doesn't have an income stream then the Charity Commission should consider --- "risk to the charity itself"
Argument 1 seems stronger
The Charity Commission probably has a lot of discretion re when to enforce --- public interest "test"
 
Trish said:
Thanks Caroline. I don't expect this to achieve change, but I'm glad it's being put on record that the Charity Commission are useless at protecting people Cochrane is harming.
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Me neither. But yes, I think I will post the Charity Commission Correspondence when it's concluded. I do wonder what they will come up with to justify ignoring the main point of my complaint
 
Caroline Struthers said:
Heard from the Charity Commission. Love this sentence "We appreciate that sometimes decisions made by charities may be unpopular with some interested parties".

They go on to say are only looking at risk to "anyone coming into contact with the charity" and "risk to the charity itself". Cochrane have just lost all its UK funding for being terminally crap at their job, so I think they did put themselves at risk over many things. But anyway.

The CC failed to mention the risk to the "beneficiaries" of the charity from the poor products (aka published reports) it produces, specifically, but unlikely to be limited to, the Exercise revewi. On the complaint form (https://forms.charitycommission.gov.uk/raising-concerns/) it clearly says it deals with risk of "serious harm to the people the charity helps" as well as risk to "anyone who comes into contact with the charity". But they have only mentioned the latter in their letter. I will write back and point that out, (again). I will ask them to spell out that they have also considered the serious harm to beneficiaries, which was the basis of my complaint.

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Thank you. These sound like similar replies to earlier complaints to the CC about the UK charity AFME when they were pushing CBT and GET.
 
ukxmrv said:
Thank you. These sound like similar replies to earlier complaints to the CC about the UK charity AFME when they were pushing CBT and GET.
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I suspect they are similar to most complaints against most Charities. The CC is a weird hybrid organisation - on the one hand it is a Regulator, on the other it is a body charged with supporting Charities and these two sets of duties will often seem to conflict. The CC rationalises this conflict with its own interpretation of Charity Law and it's very difficult to challenge that case by case rationalisation without specialist legal advice.

As things stand - as I understand it - there seems unlikely to be any movement from the CC while Caroline's complaint is being dealt with by Cochrane. From the CC perspective it is for the Charity to set up and apply due process, and as that is now happening the CC would be unlikely to want to become involved further. Once that process has been completed, if there remains an issue that Cochrane hasn't addressed perhaps it would be appropriate to talk here about fundraising for expert (charity Law) advice on making a legally based complaint against Cochrane.
 
CRG said:
I suspect they are similar to most complaints against most Charities. The CC is a weird hybrid organisation - on the one hand it is a Regulator, on the other it is a body charged with supporting Charities and these two sets of duties will often seem to conflict. The CC rationalises this conflict with its own interpretation of Charity Law and it's very difficult to challenge that case by case rationalisation without specialist legal advice.

As things stand - as I understand it - there seems unlikely to be any movement from the CC while Caroline's complaint is being dealt with by Cochrane. From the CC perspective it is for the Charity to set up and apply due process, and as that is now happening the CC would be unlikely to want to become involved further. Once that process has been completed, if there remains an issue that Cochrane hasn't addressed perhaps it would be appropriate to talk here about fundraising for expert (charity Law) advice on making a legally based complaint against Cochrane.
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The test for judicial review is "Wednesbury Unreasonable" very unlikely to succeed so I'd suggest the political route --- perhaps @Caroline Struthers could tag the Commission i.e. when she publishes the correspondence & the APPGs?
Edit - re judicial review - remember the failed review of the previous NICE Guideline.
 
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Or raising it to relevant parliamentary select committees ie science in relation to Cochrane, DCMS in relation to charities commission ( the cc is directly accountable to parliament through its annual report and appearance before DCMS committee)

eta cross posted with Fmm1

would be good if APPG would write to select committees
 
FMMM1 said:
The test for judicial review is "Wednesbury Unreasonable" very unlikely to succeed so I'd suggest the political route --- perhaps @Caroline Struthers could tag the Commission i.e. when she publishes the correspondence & the APPGs?
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I was thinking more about a fully formulated complaint to the CC - that is a complaint couched in relevant Charity Law, outlining precisely where the CC is failing (if it is) in its duties in respect of the governance of Cochrane.

I think Judicial Review would only be a viable option where it could be shown the CC is in error, so a further stage in the process. Not a criticism of Caroline's efforts just that as the CC is both arbiter and responsible body it's very difficult to show a refusal to investigate by the CC is actually a failure of its duties to the public unless the CC has been presented step by step what the complainant's argument is set with the legal framework i.e the CC has to be shown to be negligent or misguided in its application of the Law.

Politics is so messy in the UK right now I'm not hopeful that Parliament would be of much use. For the CC it really needs the involvement of the Department for Culture, Media and Sport Select Committee but given we are in a very fraught and drawn out 'pre' election period it seems unlikely that the best levels of cross Party co-operation will be in play. Maybe the APPG could influence the DCMS Minister but I'm doubtful there would be much joy. Of course all this depends on timing - post the General Election things may be clearer - or not. Even with a new Government in place there may be little traction available as the main political concerns are with the new Parliamentary agenda.
 
Trish said:
Thanks Caroline. I don't expect this to achieve change, but I'm glad it's being put on record that the Charity Commission are useless at protecting people Cochrane is harming.
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Their response frankly emphasizes that they don't actually consider this part of their remit. It's too important to overlook, this is supposed to be their primary mission. They seem to be about protecting Cochrane, rather than holding it accountable. Just as, clearly, the professional medical associations are in the business of promoting the interests of their members. Very little actually protects the public, since the public has no influence on the institutions, and they are all basically small communities with their internal cultures who all know and network with each other in some way.

The Iron law of institutions strikes again. In the end, every institution gets used by its members for self-serving reasons, this is why regular reforms are generally needed. The institutions of medicine all seem to have fallen to it, they no longer serve the public interest, barely bother pretending to anymore.
The people who control institutions care first and foremost about their power within the institution rather than the power of the institution itself. Thus, they would rather the institution "fail" while they remain in power within the institution than for the institution to "succeed" if that requires them to lose power within the institution.
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This reminds me of one twitter exchange between a pwME and Sharpe, who responded to criticism that the BPS model has ruined his life saying that he doesn't know him and never met him. As if he hadn't spent years of his career trying everything to influence the lives of millions. But he takes no responsibility whatsoever about the outcomes, just pure aristocratic ivory tower detachment from actual reality, with an actual "are you addressing ME, peasant?" indignation.
 
CRG said:
I suspect they are similar to most complaints against most Charities. The CC is a weird hybrid organisation - on the one hand it is a Regulator, on the other it is a body charged with supporting Charities and these two sets of duties will often seem to conflict. The CC rationalises this conflict with its own interpretation of Charity Law and it's very difficult to challenge that case by case rationalisation without specialist legal advice.

As things stand - as I understand it - there seems unlikely to be any movement from the CC while Caroline's complaint is being dealt with by Cochrane. From the CC perspective it is for the Charity to set up and apply due process, and as that is now happening the CC would be unlikely to want to become involved further. Once that process has been completed, if there remains an issue that Cochrane hasn't addressed perhaps it would be appropriate to talk here about fundraising for expert (charity Law) advice on making a legally based complaint against Cochrane.
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Yes, have realised that the CC have sort of explained this point to me in the letter. But I didn't understand. They have left (and are leaving) the decision about whether Cochrane have harmed beneficiaries or not to Cochrane. Maybe they will find it harder to say that they haven't caused harm with my latest more focused complaint. But I see the CC isn't going to do anything until Cochrane investigate that.
 
CRG said:
I suspect they are similar to most complaints against most Charities. The CC is a weird hybrid organisation - on the one hand it is a Regulator, on the other it is a body charged with supporting Charities and these two sets of duties will often seem to conflict. The CC rationalises this conflict with its own interpretation of Charity Law and it's very difficult to challenge that case by case rationalisation without specialist legal advice.

As things stand - as I understand it - there seems unlikely to be any movement from the CC while Caroline's complaint is being dealt with by Cochrane. From the CC perspective it is for the Charity to set up and apply due process, and as that is now happening the CC would be unlikely to want to become involved further. Once that process has been completed, if there remains an issue that Cochrane hasn't addressed perhaps it would be appropriate to talk here about fundraising for expert (charity Law) advice on making a legally based complaint against Cochrane.
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I was initially thinking that ensuring the timescale that/length of wait Cochrane take to find an independent process to deal with complaints is made transparent is useful at this stage just in case. How organisations are capable of dealing with these things appropriately and their ability to find good process in good time when serious issues are raised is quite an important marker, and time to confirm what that is would be the first rung on that?

And making sure the clock starting on that timeframe is more public/transparent/looped-in than just an email response makes sense in case of unreasonable delay etc later on as a point of due dilligence type thing, and should there be further questions raised from any response/decisions with make-up etc. Which could be as little as CC'ing or forward of that confirmation of receipt. Then should there be issues further down the line updates can be provided specific to that.

I think similarly to what you've noted, I'm thinking of these things like 'ombudsman' where it escalates across to them at the point where/when there has been an issue with the response/process [or lack of] from the organisation.
 
just a reminder
NG206 Evidence review
https://www.nice.org.uk/guidance/ng...acological-management-of-mecfs-pdf-9265183028
1.1.3.2 Excluded studies
Three potentially relevant Cochrane reviews were identified but were not included in this review due to differences in the review protocols and methodologies.
One Cochrane review of exercise interventions (Larun 201748) pooled all exercise therapies irrespective of the type of exercise therapy, and also pooled all control arms considered ‘passive’ (including treatment as usual, relaxation and flexibility). We did not consider this methodology appropriate for decision-making. Additionally, the review did not include all
critical outcomes specified in this review protocol, including cognitive function, activity levels, return to school/work, exercise performance measures and mortality.
One Cochrane review of cognitive behavioural therapy (Price 200875) included study populations where not all participants had ME/CFS. Additionally, the review did not include all critical outcomes specified in this review protocol, including cognitive function, pain, sleep quality, activity levels, exercise performance and mortality.
Another Cochrane review of Chinese medicinal herbs (Adams 20091), which did not include any studies and which was later withdrawn, included people with idiopathic chronic fatigue in the review protocol.
All included studies within these reviews were cross-checked for eligibility for inclusion in this review.
See the excluded studies list in appendices.
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("See the excluded studies list in appendices.", does anyone know where these are exactly?)
 
Caroline Struthers said: ↑
I noticed that the exercise review now "used" in the WHO "living" guideline on managing COVID 19 https://www.cochranelibrary.com/cds...CD003200.pub8/related-content#guidelines_data. I have not found where it is used though. Are they conflating fatigue with ME/CFS? It's completely bizarre.

Sly Saint replied
see my post here
https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-99#post-448445
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I did a quick search on the Cochrane library on post-covid and exercise; 391 results.
Presumably they are using the WHO 'living' guideline/definition of LC?
If this was influenced by the Cochrane exercise review for CFS then it is potentially not only ME/CFS patients being harmed by the failure to remove or redo the review(?)
 
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