Watt from MRC defends PACE in letter to Times

Given we are currently waiting on news regarding a move from the MRC on CFS biomedical research I wonder If this suggests anything. Does the fact that Chris pointing is politely asking the MRC via tweet to look at the modern research opportunities for CFS suggest we aren’t going to have a nice big surprise at the cmrc in September?

Regarding PACE criticism deterring research, It doesn’t seem to deter people who want to do BPS research on fatigue, unfortunately. On the other hand the PACE rehabilitation narrative, overhyped results for exercise and CBT and terrible media are all big deterrents to people getting involved in biomedical research I’d expect, given that few are interested still.

 

While I agree with @Esther12 about the need to be cautious about the claims we make, I think the closing paragraph of the letter should be a lot stronger - and frankly, a lot blunter. Something like:

"There are many questions raised by this massive failure, not least about the MRC's own role in the trial and the competence of its system of peer-review. If the Chair of the MRC - the body charged with supporting and promoting world-class medical research in the UK - cannot recognise deeply flawed research even when it is pointed out to her, then clearly the organisation is in urgent need of radical reform and new leadership."

That's my two pence. Feel free to take it or leave it. I won't be offended.

 

I honestly think that if they thought that then they just wouldn't respond. The fact that they feel the need to respond reflects that they are concerned that they are losing control of the narrative, fingers crossed, obviously, they are realising this too late for them.

 

Maybe Prof. Watt has more of a lab background and lacks the skills to assess clinical trial methodology?

She doesn't seem to have a background in CBT or psychological medicine so it is hard to understand why she would defend PACE. One would think that the time where one could pretend that everything is OK and avoid rocking the boat has been over for a while.

 

I thought that name rang a bell from the early days:

"Patients' beliefs that the symptoms of CFS are evidence of disease, particularly viral infection, and that any activity which exacerbates symptoms should be avoided, are potential causes of disability and distress. (Sensky 1990)."

(ETA Sensky T 1990 Patients reactions to illness. Br Med J 305: 147-152)

Non-pharmacological approaches to treatment. Michael Sharpe.
1993 Chronic fatigue syndrome. Wiley, Chichester (Ciba Foundation symposium 173) p298-317 @p301

It seems he has been a malign influence from the outset.

 

She has a lab background, but as I pointed out in my letter to her, the psychology that leads to bias in research pervades lab research just as much as clinical trials. In order to understand why PACE is uninterpretable all you need is common sense and a bit of experience with human nature.

 

If more than one letter is submitted, it should increase the chances one will be published.

 

Don't forget St Esther of Crawley's behind the scenes propaganda campaign. Professor Watt no doubt thinks she's 'standing up for science'. Anyone in opposition to PACE is an abusive monster by default. Watt has probably been biased to the point where she feels she doesn't need to even hear a counter argument.

 

@dave30th
would any of your letter's signatories be prepared to resign this? Or could you round up a new letter
would any MPs be prepared to sign this?

Can we tweet once posted to maximise exposure

I think to gain as much traction signatures need to come from outside the " ME bubble"
The stance is somewhat understandable as if this falls , then the basis for the IAPT roll out to MUS falls with it, and from what I have seen, this is an opportunity for third party private companies to maximise profit.

 

It isn’t to me surprising we are seeing this line from the MRC, after all we haven’t seen criticism of PACE from Stephen Holgate, in fact he brought Peter white and Esther crawley on board, people saying he had no choice, why? They all wrote a letter defending Simon wesselys work in the past didn’t they too. I very much doubt PACE or BPS research generally has been the subject of any robust debate at the CMRC meetings, unlike patient harassment which supposedly needed its own discussion time. The whole “we need a big umbrella approach and work with all involved in the CFS field” was IMO all a refusal to accept the mistakes of the past - from the name, criteria, focus for investment, issues with the research forming the backbone of nhs approach. The CMRC might now have decided to focus on the biomedical but I still have little faith in MRC, either they do take the illness seriously and want biomedical research progress and just want to brush the past under carpet or they havent really changed at all.

What we have seen so far, as Trish said, of the establishment is rallying in self interest defence, refusal to admit error and change course and this is a continuation of that. Just as the SMC haven’t changed their line despite the reanalysis paper being published, the health journal analysis and other countries USA etc abandoning the CBT model and treatment. The MRC is showing no difference to the lancet or the SMC. I’m glad they’re actually engaging in some form of debate, even if it is just trying to shut it down but I want big change from them and a change in the way our representatives interact with them. Even if they can’t admit past mistakes, If big change and new money isn’t forthcoming this year it suggests their attitude isn’t changing and then I think trying to collaborate rather than confronting them is the wrong approach.

 

@Jonathan Edwards - Do you know if Stuart Pocock (Prof of Medical Statistics and Clinical Trials guru at LSHTM) has been asked to look at this?

 

Hi, I'm just getting up to speed this morning. A couple of points about the letter. I have been using the phrasing "no legitimate evidence" or "no convincing evidence" or some phrasing like that--there certainly is "evidence" for CBT/GET, so to say there is "no evidence" is not accurate. It's just that the evidence is bad. Also, the interventions are in fact effective at what they do--changing people's ratings a bit. I think it should be more specific about what they're not effective at doing. It's also not the case that "every major institution" in the US has rejected the findings. Mayo and Kaiser are "major institutions." They're not government health agencies, so if that's what is meant, then that should be specific. Finally, it is used at Berkeley for epidemiology classes. I don't personally know of other universities that use it. It has been presented at conferences in various places, but that's different.

I don't know how willing many U.S. scientists will be to sign something to MRC, with which they have no relationship. I tend to think that MRC's perception that it needs to respond to what was really a very short article in The Times is a sign of concern on their part.

 

"....and it is important that researchers are not discouraged from working on the disease because of concerns that they could be subject to the level of hostility that Pace researchers have experienced."

Myth perpetuation. Mentioned this a million times online but I attended the PACE FoI tribunal 2½ years ago and the phrase used in the subsequent judgment was "grossly exaggerated". I would be astonished if Ms. Watt was unaware of this therefore, I suggest, she knows perfectly well that this is not something that would stand up in a court.

It's a lie.

 

Michael Van Elzakker has used it (at Tufts, I think):

http://microbeminded.com/2017/12/07...-vagus-nerve-mecfs-latent-infection-and-more/

 

Not that I know of. He is not someone I know. Statisticians seem to be quite good at missing problems with PACE methodology because they are as much psychological as mathematical but someone on the ball should understand.