Watt from MRC defends PACE in letter to Times

That is a pretty uncompromising statement, indicating that she does not understand basic aspects of experimental design. She produces no arguments, relying on the fact that others thought PACE was OK.

The MRC are making complete fools of themselves internationally. Perhaps now is the time to copy on the forum the letter that I sent her a while back.

I consider this document now in the public domain and have no problem with it being copied elsewhere.

 

I’m gobsmacked that the chair of the MRC does not grasp the fact that an unblinded trial with subjective endpoints, where participants are encouraged to say they feel better is not sound science.

 

I would go as far as to say that to repeat the charge that 'researchers are [] discouraged from working on the disease because of concerns that they could be subject to the level of hostility that Pace researchers have experienced.' shows a total lack of understanding of the motivations of the various groups of people involved. It is of no help to research into ME whatever.

 

So the only conclusion that I can come to from that statement is that she doesn't want research into ME to flourish, as she certainly isn't treating patients, or our supporters, with any respect.

 

Please could you respond again to the BMJ piece? I think your criticisms of her latest post are very apt. I also dislike the bogeyman of censure being raised to silence debate. Sharpe and his colleagues have not been hounded from the arena--indeed, they've flooded it with poorly planned and poorly written studies, and their colleagues are continuing in the same vein, unabated.

That the MRC feels compelled to comment suggests they're either quite scared indeed, or care more about good PR than good science.

 

This.

Edit: Oh, sorry, Andy said it already!

 

A woman wrote that. In a national newspaper. After thinking carefully about what she would like to say. A woman who we should expect to have a basic awareness of the history of her field. A person in charge of deciding important things about research. Who should have a general understanding of common practices that could be damaging. Where things have gone seriously wrong in the past. Has she any knowledge of the Nuremberg Code, followed by the Declaration of Helsinki? How and why they came to be?

 

I agree with this statement, but would assert Poff Watt and the MRC, by repeating the lies of the PACE researchers in denigrating the rational criticism of bad science by balanced and fair patient scientists, are the ones showing a lack of respect. The PACE study is a prime example of a failure of medical research flourishing.

There may now be some intemperate criticism of the PACE research in the public domain but that is a direct consequence of the PACE appologists failure to address reasonable comments and their deliberate obfuscation of the issue by withholding their data and by slandering and libelling of their critics.

 

If specific researchers insist on methods that are considered strongly flawed in other fields, then they should be discouraged from doing research.

On the topic of respect, there researchers have not shown respect for patients - the deviation from the protocol is a deliberate attempt to exaggerate the results and claiming this was accepted by an independent committee is not entirely true, since that committee was made up of people who have the same allegiances towards the treatment. We know there is such a bias from the steering committee minutes. If the researchers truly had respect for patients, when it was originally pointed out that the deviations from the protocol were not acceptable, they would have simply said: oh sorry, here are the protocol specified outcome measures as originally described. Instead it took almost 5 years to get anything resembling that and it took legal avenues (FOI) to get it.

 

Given the egregious and well document faults in the PACE study, which when subject to objective analysis produced null results, and given the similar failings of subsequent related studies, given the rejection of the study by the international scientific community and by the British Parliament and the fact that now a number of universities use it as an example of how not to conduct a research trial, this raises very serious concerns about the competence of the MRC's system of peer review, the project's independent steering committee and the relevant journals' peer review systems. This highlights a potentially serious failing at the heart of British achedemia.

Will Proff Watt accept that if she has got her and the MRC's rejections of the criticisms of PACE wrong, then the MCR urgently needs to overhaul its procedures and to apologise to people with ME/CFS for their part in the harm done to us?

 

@Trish, I do not subscribe to the Times on line so do not have access to the relevant thread, but if you could point me in the right direction I would be happy to send it, as asking Proff Watt and the MRC what they intend to do when they are forced to admit their support for PACE is profoundly misjudged is very important.

 

Superb letter, @Jonathan Edwards.

"Above all, we need that trust and respect. Both patients and scientists need to feel that there is some form of quality assurance in the science. And the only way I see it coming is if the MRC makes a public statement acknowledging that by any reasonable view of scientific standards the sponsoring of PACE was a serious misjudgement that should have been foreseen. I would like to make a formal, private, request that such a statement should be made. If absolutely necessary I am prepared to ask Carol Monaghan to make a public request in Parliament, which in effect she has already indicated she would want to do. Trust and respect from patients is paramount, but trust and respect within the scientific community is also critically important. It could be achieved very simply."​

It sounds to me as though it's time to put that request to Carol Monaghan. It's appalling that a representative of the MRC should issue a statement in support of the quality of a trial without addressing any of the serious criticisms of it, or even seeming to be aware of them. That in itself is a disgraceful show of contempt for patients and their concerns.

 

Actually, @Sasha, I realise I posted the penultimate version. I have changed this to the final version. But never mind. It is time to talk to CarolMonaghan, I agree.

 

Wow, so not only does she do the ultimate insult, reduce it to chronic fatigue, thanks and how helpful, she turns this again into scaring off CFS researchers, except its actually doctors and researchers this time not patients.
The MRC suck when it comes to this illness, how about putting in some actual money lady? I very much doubt that this wasn’t a comment informed by others in the MRC or beyond, as she speaks the same language without, I doubt , having personally much to do with it

 

I think a letter to the Times is in order. I would be happy to sign. If I did I would make some tiny changes (partly typos).

Given the egregious and well document faults in the PACE study, which when subject to objective analysis produced null results, and given the similar failings of related studies (being unblinded and with subjective outcome measures), given the rejection of the study by the international scientific community and by the consensus of MPs in British Parliamentary debate and the fact that now a number of universities use it as an example of how not to conduct a research trial, Professor Watt's reply raises serious concerns about the competence of the MRC's system of peer review, the project's independent steering committee and the relevant journals' peer review systems. This highlights a potentially serious failing at the heart of British academia.

Will Proff Watt accept that if she has got her and the MRC's rejections of the criticisms of PACE wrong, then the MRC urgently needs to overhaul its procedures and to apologise to people with ME/CFS for their part in the mismanagement of the condition?

 

It would appear that @Jonathan Edwards has received the response which he requested, although the content is not what might have been wished for.

The MRC would appear to hold Emeritus Professors in the same high regard as it holds patients, and treats them with similar respect.