Watt from MRC defends PACE in letter to Times

Jonathan Edwards said:
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.
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Excellent letter, and amongst other things very educational. Education you really would hope Fiona Watt would have already acquired, and which she clearly thinks she does not need - but clearly does.

Especially: "In other words, the subjective biasing that in most experiments we try to minimise by recognising our tendency to cherry pick was, in PACE, the intended mechanism of the treatment. This should have been obvious to psychologists!"
 
Maybe they have such great difficulty understanding that biasing of subjective measures is problematic because they've been taught that CFS is a magical mental condition where thoughts and beliefs create reality, and therefore biasing thoughts and beliefs is exactly what's needed.

It would be very embarassing to admit that the ones fooling themselves are the scientists, not the patients.
 
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JohnTheJack said:
Published this morning:

CHRONIC FATIGUE

Sir, Further to your report “Call for review of ‘flawed’ ME research”(Aug 21), as funders of the Pace trial we reject the view that the scientific evidence provided by the trial for using cognitive behavioural theory and managed exercise in the treatment of chronic fatigue syndrome (also known as ME) was unsound. The Pace trial was funded following expert peer review, was overseen by an independent steering committee, and its published findings have also been independently peer-reviewed. Other research groups have drawn similar conclusions. Chronic fatigue syndrome/ME remains a priority for the Medical Research Council (MRC), 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. Medical research can only flourish when there is mutual respect between all parties.

Professor Fiona Watt Executive chairwoman, Medical Research Council
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Jesus wept.
 
While I can understand that it's more important to focus on methodology rather than the ideology behind CBT/GET, I still feel that PACE authors are promoting a (disguised) all-in-the-mind narrative despite not having any evidence it's true and that this has been extremely damaging to patients in many ways. Unfortunately this kind of harm is hard to show clearly and to quantify. The CBT/GET people have just agreed to pretend it's not an all-in-the-mind narrative for PR purposes.

Many healthcare professionals basically believe CFS is a condition where patients imagine to have an illness but don't, thanks to textbooks saying the condition is perpetuated by thoughts and behaviour (one recently discussed chapter on CFS was authored by Sharpe). This is basically the same thing as saying it's all in the mind. The CBT/GET people are the source of this idea! No one else is promoting it.

The resulting attitudes then trickle down to the rest of society and creates many situations where patients are mistreated, belittled, neglected. This happens at various levels: in interactions with other people (including friends and family), in legal disputes, in research funding allocation. This damaging narrative is how stigma and catastrophic neglect on a large scale is created, and the CBT/GET people are vigorously promoting it.

So I disagree with the idea that patients who criticize PACE because it suggests CFS is all-in-mind are misguided. I can hardly imagine a stronger statement about CFS being all-in-the-mind than saying patients can recover completely with CBT/GET merely by working on their beliefs. On the contrary, patients who point this out are much like the little boy who pointed out that the emperor was naked. It is hard to accept that psychiatry has engineered a public health disaster. There doesn't seem to be any evidence that medically unexplained symptoms, somatoform disorders, conversion disorder and the like really exist and are caused by psychological factors. The illness beliefs narrative of CFS is just one variation of the same basic idea, psychogenic disease causation, which is never questioned and never adequately tested. It's all just a belief system, for which patients pay a heavy price.

Am I being unfair to extend my criticism to the field of psychiatry rather than just the CBT/GET people? I think not because the rest of psychiatry has failed to stop them and has embraced the claims of somatoform disorder, psychogenic illness, and so on. At the very least, they're looking the other way while innocent patients are abused with nonsense treatments and unpleasant things like accusations of Munchhausen per proxy merely because the child doesn't respond to a placebo therapy.
 
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JohnTheJack said:
Published this morning:

CHRONIC FATIGUE

Sir, Further to your report “Call for review of ‘flawed’ ME research”(Aug 21), as funders of the Pace trial we reject the view that the scientific evidence provided by the trial for using cognitive behavioural theory and managed exercise in the treatment of chronic fatigue syndrome (also known as ME) was unsound. The Pace trial was funded following expert peer review, was overseen by an independent steering committee, and its published findings have also been independently peer-reviewed. Other research groups have drawn similar conclusions. Chronic fatigue syndrome/ME remains a priority for the Medical Research Council (MRC), 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. Medical research can only flourish when there is mutual respect between all parties.

Professor Fiona Watt Executive chairwoman, Medical Research Council
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What japes from the MRC. Chronic fatigue conflated with ME again in their mindless babble. What about the hostility and neglect ME patients have faced for decades? I'm sorry but these people - the whole PACE cabal - are evil, there is no other response.
 
Fiona Watt said:
Medical research can only flourish when there is mutual respect between all parties.
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This of course is very true, but unfortunately overlooks the obvious - respect has to be earned, not doled out on demand. The PACE authors and BPS crew simply have not earned that respect unfortunately, all they ever seem to do is demand it.

Edit for clarification: The sort of respect in play here is respect for people's behaviours, competencies, ethics, etc. Not the other meaning of respect, where it means respect for basic human rights.
 
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Sasha said:
Edit: IIRC, journalists are trained to write sentences not much over 25 words, for ease of reading. Here's why:
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Yes, I was taught that long time back. Reader comprehension drops off rapidly once a sentence exceeds a certain length, no matter how good its content. Much better to break down into shorter ones. If you really think it doesn't quite work, then semi-colons can sometimes help if used sparingly.
 
Barry said:
This of course is very true, but unfortunately overlooks the obvious - respect has to be earned, not doled out on demand. The PACE authors and BPS crew simply have not earned that respect unfortunately, all they ever seem to do is demand it.
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They have earned total *disrespect* for their appalling behaviour and also now for trying to keep this hostile patient narrative afloat. They have nothing else, of course, so they scrape, scrape, scrape the barrel. It's truly horrible.
 
JohnTheJack said:
Thanks everyone for the input. This now is the final version. If anyone wants me to add their name, please say so and in what form.
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Please add my name: Peter Trewhitt

[added later: just saw the cut off time, so sorry if I was too late to be included. Thank you @JohnTheJack For taking the trouble of trying to herd cats and pulling this letter together.]
 
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Whether campaigning against PACE is legitimate or misguided depends on whether PACE is good or bad research. Same argument applies to complaints to authorities.

There is nothing bad about admitting that we are campaigning against PACE, or campaigning against the notion that ME/CFS can be reversed by changing thoughts and engaging in graded exercise. We have solid arguments for our positions and our opponents do not, but they will gladly take the opportunity to publicly define our campaigning as misguided (if we let them). So let's not allow them to manipulate us into trying to downplay the fact that we are campaigning.

That they try to attack the campaign means they perceive it as a threat. So we must campaign harder and find more signatories.
 
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JohnTheJack said:
Thanks again everyone for the input. In light of the comment from @dave30th and others, this is the final, final version:

Sir,

We are surprised by Professor Watt's wholehearted and inaccurate defence of the PACE trial.

Questions have been raised about the independence of both the trial steering committee and the peer-review, and the speed with which the main paper was fast-tracked by The Lancet. The small trials that have found similar results to PACE repeated its major flaws - notably being unblinded studies with subjective primary outcome measures.

When data from the trial have been reanalysed, no convincing evidence has been found for the claims the interventions are effective. The trial findings have been rejected by scientists and statisticians from around the world, every government health agency in the USA and in debate in Parliament. Berkeley University now use it as an example of how not to conduct research.

Justified criticism of a flawed and poorly conducted trial should not be confused with hostility to the researchers.

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.



I'll send it off at 19:00 UK time, so if anyone wants to add their name, please let me know before then.
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Oh b*gger, missed it. In truth my qualifications are extremely modest by comparison with many here, so would likely have diluted rather than reinforced.
 
Trish said:
I can't help wondering whether the fact that she's based at King's College has any relevance. As we know, King's is a hotbed of BPS, with, among others, Professors Simon Wessely, Trudie Chalder, and Rona Moss-Morris.
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Yes, I think this is the final hurdle. The really importantly placed people who will continue to support PACE because they get directly from the horses mouth all the details of why it is a good trial without going to the work itself or any of the papers written on it to decide for themselves. These people will believe everything they are told because they are being told it by people just like them -- people of advanced degrees and special knowledge. And they will be told in the most engaging, disarming way and most sincerely. How could they believe otherwise.

I'm also of the opinion that since it's a private conversation that the BPS persons will not hesitate to lie if that's what it takes should one of their quarry choose to ask probing questions. But the lie will be slippery and hard to pin down. A lot of ambiguous language will be used.
 
Amw66 said:
@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.
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This is the route we are going and why there is such cognitive dissonance.
Fatigue in MS reframed per PACE paradigm
 
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