UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

https://www.s4me.info/threads/nice-...deline-committee-has-now-been-published.6197/

#726
In correspondence with Nice about the members of the GDG, Nice openly stated that they were dealing with declared conflicts of interest.

“2. Please explain how anyone with any knowledge of the scientific advances in the field of ME/CFS could possibly be expected to take this review seriously in view of the committee announced?

As a result of concerns raised with the appointments made so far we have reviewed the appointments and we consider that they are appropriate and that any interests that the committee members have declared can be managed using our policy on declaring and managing interests for NICE advisory committees.” ( Apology for lack of bolting- iPad)

Who is dealing with undeclared conflicts of interest? How are they being managed?

 

Not completely sure this works but you could try: nigel.hawkes1@btinternet.com

 

Could be worth doing a Rapid Response to the article. If they've mischaracterised you that could mean they'd be more likely to publish your letter. Saying that, the BMJ does have a clear history of shittyness.

 

Have people posted the HRA's introductory page for this letter yet? Some annoying stuff there considering how slip-shod the letter sent was, eg:

https://www.hra.nhs.uk/about-us/new...-science-and-technology-committees-questions/

Re-hashing some of QMUL's spin must have been a real challenge for the HRA. Luckily they had the time and resources required.

It also links to this blog on COIs, which includes:

https://www.hra.nhs.uk/about-us/news-updates/conflicts-interest-blog-hra-chair-jonathan-montgomery/

 

It's probably a mistake to even post this, but given the grating Establishment tone and reasoning of Montgomery's letter it's probably no surprise that he has just been awarded a knighthood: https://www.hra.nhs.uk/about-us/news-updates/hra-chair-awarded-knighthood-new-year-honours-list/

The honours committee for health includes Professor Sir Simon Wessely: https://www.gov.uk/guidance/honours-committees#health

 

There is an issue about ethics that I have been intending to raise in another context.

The CBT used in PACE was, as I understand it, based on concepts such as 'educating patients' and using 'cognitive strategies' to persuade them that their views about their physical capacities were erroneous. However, there was never reliable evidence that their views were erroneous and still isn't.

This implies that when consent was obtained it was not based on honest information, which is unethical. The detail in the material in the information sheets and the newsletter may be relevant here. There is of course a catch22 in that the trial was only ethical if the authors did not know whether or not this education was valid (equipoise). But the original account of the method by Wessely and Chalder emphasises that persuading the patient of its validity is essential to the technique.

My feeling is that this problem is too complicated for the HRA to be expected to understand, but it is a serious ethical issue now, since we still have no reliable evidence and no doubt CBT patients are being 'educated' that they will get better if they believe what the therapist says.

 

Does a similar argument also apply to GET? What solid evidence was there that encouraging people to repeatedly ignore their bodies' natural safety warnings was in fact safe, especially when the underlying physical problem was only assumed to be deconditioning. The PACE paper tacitly acknowledged that the true disease mechanism was not understood with any real certainty. As per my post #95.

 

I don't get the feeling that HRA is concerned with whether REC decisions are based on the proper science. I think they're only interested in whether the appropriate procedures were followed, even if the study is garbage.

 

i.e. Just interested in ensuring they have a get-out-of-jail-free card.

 

Maybe. I think their remit really is limited, and the report needs to be read in that light. which no one is doing, of course, especially the ideological brigades.

 

Don't know if this has already been highlighted or not, but re-reading the HRA letter, they seem to actually confirm that patients were not informed about the PACE-trial researchers' consultancy work to insurance companies.

But then they try to argue that this - somehow - does not constitute a conflict of interest...

 

yes, and here's the issue with that. At the time, there were no prevailing UK requirements that these links be disclosed--the HRA is right about that. However, I have always made the argument not based on the fact that they didn't disclose but that they violated their own protocol in not disclosing. In promising to follow the Declaration of Helsinki, they bound themselves to its disclosure provisions, which are not ambiguous or confusing. For whatever reasons, the HRA is apparently not concerned with this type of protocol violation but with whether the actions breeched UK law/policy at the time.

 

"Sense about Science"
https://me-pedia.org/wiki/Sense_About_Science

another SW 'connection'

 

Sorry but I can't seem to find this and am not able to search this thread properly. It's from January 29, 2019, and is a letter from Professor Sir Jonathan Montgomery to Rt Hon Norman Lamb MP. It's probably here somewhere!

https://www.parliament.uk/documents...Research-Authority-to-Chair-re-PACE-trial.pdf

 

https://parliamentlive.tv/event/index/af056282-eb9a-4cad-b57a-66247a524b1f?in=11:12:35 Watch, he is in the spotlight!

• 09:26:09
  Subject: Research integrity
• 09:26:10
  Witnesses: Professor Sir Bernard Silverman, Chair of Trustees, and James Parry, Chief Executive, UK Research Integrity Office
• 10:23:55
  Witnesses: Dr Tony Peatfield, Director of Corporate Affairs, Medical Research Council, and Chairman, RCUK Good Research Conduct Network, and Dr Steven Hill, Head of Research Policy, Higher Education Funding Council for England
• 11:12:35
  Witnesses: Professor Jonathan Montgomery, Chair, Health Research Authority

 

These people are like drug dealers, they peddle their products with no regard to the devastation they cause. If they were genuinely interested in their patients they would be striving to find why people claim to get worse. Maybe they would not want to interact with patients (the angry horde) but they should be requesting talks with the likes of Jonathon Edwards or David Tuller to try to find some way out of this mess.

 

I would call their logic and level of integrity to be Trump-like.

 

I'd be interested to see where their remit is laid out in such a way that it compels an investigation in PACE to be like the one reported.

 

I think that's a good idea starting with "honest John's" witness statement to the Select committee https://parliamentlive.tv/event/index/af056282-eb9a-4cad-b57a-66247a524b1f?in=11:12:35 among st the others reps MRC RCUK, Sir Bernard Silverman stating they rely on funding from the Universities and being quizzed by Norman Lamb, putting his lawyer's hat on and suggesting that to be a conflict of interest.......!!!