Watt from MRC defends PACE in letter to Times

Well, if the word on the street here is that he is a good egg I might have a go at contacting him. Since LSHTM has an excellent biomedical ME research group and is part of UCL and fur is flying in the public domain there are probably enough excuses for me to approach him without him seeing me as SPAM.

 

@Robert 1973 has alerted me to a book 'Psychology in Crisis' coming out that mentions PACE and a few of us. I think everyone on S4ME should get a copy.

 

Might be this?
http://amzn.eu/d/gAGPn5z

 

At £25 a pop, I think Palgrave (the publisher) should have produced an e-version so that the public, as well as academics (presumably the target for the paper version) could have a look too.

 

Yeah, I'm not keen to pay that kind of price.

The author is on Twitter here, https://twitter.com/b_m_hughes?lang=en, if any Twitter user wants to check that it is the correct book and to see if he can convince his publisher to produce an e-book version.

 

Apparently the author has held a visiting academic appointment at King's College , London.

 

@JohnTheJack, @Jonathan Edwards
Great letter I couldn't sign it because I only saw it this morning. I do not have a subscription to the times how can I post the following comment ?

Sir, according to Professor Fiona Watt, Executive chairwoman, Medical Research Council, there was nothing wrong with the PACE trial as it "was funded following expert peer review, was overseen by an independent steering committee, and its published findings have also been independently peer-reviewed."

Yet according to the trial itself, 11 months after the trial began, they changed the entry and recovery criteria which created an overlap in being ill enough to take part and being recovered at the same time to the point that 13.3% of participants were already recovered according to one or two of the recovery criteria before receiving any treatment and without a change to their medical situation. This should never have happened in a properly conducted trial. It should also never have passed a properly functioning independent steering committee or properly functioning independent peer review either. No wonder that this trial was called "one of the biggest medical scandals of the 21st-century" in UK Parliament. It's a shame that Professor Watt blames the patients instead of acknowledging the severe problems of the PACE trial.

Mark Vink, family and insurance physician. I was nominated for the 2016 John Maddox prize for standing up for science for my PACE trial review.

 

No I didn’t! Must have been someone else but thanks for alerting me.

Just to add that I fully support @JohnTheJack’s letter, although, for the reasons @Dolphin suggested, I decided to submit my own.

 

The book fits this thread's topic perfectly...

From p. 140:

 

Exactly. CBT has been shown to be effective at changing cognitions in CFS patients, at least when it comes to answering questionnaires. The problem is that questionnaire answers are biased in unblinded trials and there has been a lack of evidence of objective improvements in disability. Sharpe and others keep saying that they use questionnaires because the illness is subjectively defined and that it is the subjective experience of patients that matters to patients. But we are the patients, he has no right to make that claim when we are the ones asking for objective evidence for a reduction in disability.

 

https://twitter.com/user/status/1034450153971830784


https://twitter.com/user/status/1034451998370873344

 

Should someone tweet Sharpe to ask him if he has read the book?

 

Another potential signatory to @dave30th Open Letter to The Lancet:
https://twitter.com/user/status/1034444901415575552

https://twitter.com/user/status/1034445661197004801

https://twitter.com/user/status/1034458730279182336

 

Ordered the book. Arrives on 30th August. Really looking forward to reading it! Oh, I followed Brian Hughes on Twitter, within a minute he followed me back and also re-tweeted a thing I'd posted on The Case against Mars Colonisation from the Grauniad. So he seems to be a friendly person. Perhaps we should invite him to join us here?

 

Your'e right, it was @BurnA. Apologies to all.

 

MRC now have lengthier response on their website. Below for link. My response is this:
Well regurgitated, lengthy BS doesn’t make it any better. As boris johnson said eloquently “you can’t polish a ****”. I think we are all getting very weary of the establishment defences, refusal to engage with legitimate criticism, patient blaming and their woefully underfunded massive umbrella CFS approach