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

 

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"

 

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

 

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.

 

See no evil, --- nothing to see here --- QED --- no need for Charity Commission to act --- desired answer!

 

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.

 

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.

 

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.

 

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.

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.

 

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.

 

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

("See the excluded studies list in appendices.", does anyone know where these are exactly?)

 

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(?)

 

I can't find these either...very odd

 

https://www.nice.org.uk/guidance/ng206/evidence

-> H Management of ME/CFS

https://www.nice.org.uk/guidance/ng206/evidence/h-management-of-mecfs-pdf-9265183029

-> Appendices Non-Pharmacological interventions.....p.5

-> Appendix J Excluded studies.....p. 545

 

Possibly along the same lines --- is there anything to stop us reviewing publicly funded studies, re ME/CFS/Lyme/---, and highlighting that they're a waste of money and communicating that to the APPGs etc?
There may be some overlap with @Caroline Struthers blog ----