Watt from MRC defends PACE in letter to Times

Adrian said:
Data won't be available to patients. We should remember that it was patients requesting and analyzing the data that exposed the spin they had put on it not academics or researchers. Also its patients that are most affected.

So the MRC are essentially keeping data within a small club and probably avoiding criticism. Will the MRC fund someone who does a reanalysis?
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I've just been looking at that site: First, only researchers at institutions can access it, and it was you patient scientists who revealed the flaws in PACE. Second, any new analysis has to be set out beforehand, so no digging around in the data to sniff out problems, and the data cannot be used for any other reason. Three, this analysis has to be approved beforehand.

It's data-sharing, but...
 
Lucibee said:
I seem to remember Peter White talking about it as being a huge hassle - but I can't remember where - was it early during the FOIA tribunal?
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During the FOIA tribunal they used it as an example of someone so concerned about confidentiality that she withdrew her data--in other words, they used it to support her argument. In fact, the only confidentiality she was worried about was that she was in dispute over disability and the PACE authors had connections with insurers. So she was worried her information could leak from the trial to her insurers. I'm not sure where or if White talked about it, but both he and Chalder tried to get her to change her mind.
 
chrisb said:
What would be the point of trying to get an unwilling participant to change their mind when subjective measures are used? they could simply give false responses to try to screw up the results.
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The participant that I know of who withdrew did it after she had finished the trial. That's when she found out they had links to disability insurers. So they already had all her data. That's why they claim it took months to recover from the removal. I fail to understand how, with computers, removing one person's data would take a team on a big trial "months" of work, but that's what the claim is, I guess. I'm not sure who the second person referenced in that paragraph is. The 2011 paper itself only shows one person's data removed after completion.
 
Adrian said:
I wonder if she actually read the statement and removed it but didn't bother reading the letter to the times and just signed it. The whole thing reads like the normal propaganda put out by the PACE team and the SMC - including the appeal to its ok because others found the same and Cochrane say its ok.
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Again, I'm not reading all the posts etc so forgive me for perhaps a touch of repetition but any potential letter being considered in reply to The Times should point out that the allegation of harassment on the level that Watt and others have repeated was questioned in the PACE tribunal and, arguably, very much worked against the case put forward by QMUL.
 
dave30th said:
The participant that I know of who withdrew did it after she had finished the trial. That's when she found out they had links to disability insurers. So they already had all her data. That's why they claim it took months to recover from the removal. I fail to understand how, with computers, removing one person's data would take a team on a big trial "months" of work, but that's what the claim is, I guess. I'm not sure who the second person referenced in that paragraph is. The 2011 paper itself only shows one person's data removed after completion.
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They have a track record of exaggerating.
 
dave30th said:
The participant that I know of who withdrew did it after she had finished the trial. That's when she found out they had links to disability insurers. So they already had all her data. That's why they claim it took months to recover from the removal. I fail to understand how, with computers, removing one person's data would take a team on a big trial "months" of work, but that's what the claim is, I guess. I'm not sure who the second person referenced in that paragraph is. The 2011 paper itself only shows one person's data removed after completion.
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There would have been reams and reams of paper data collected too, and audio records of all therapy sessions etc. And it would have been anonymised too. Probably quite an exercise to make sure they hadn't expunged the wrong participant.

But it's a condition of consent - so they should have had procedures in place to deal with that.
 
NelliePledge said:
Am I wrong to be worried that this attitude is going to have a knock on impact on any possibility of getting MRC to actually fund biomedical ME research. They say they support CMRC, Chris Ponting talked about a window of opportunity is that still ajar?
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I think you are probably wrong to worry. However much they dig heels in on PACE the possibility of letting themselves off the hook by funding some decent biology will be attractive to them. After all, they do not want activism to discourage people from researching ME.
 
Spoonseeker has sent a letter direct to Watt.
Dear Professor Watt,

Like many patients with M.E. I was surprised and disappointed by your letter to The Times wholeheartedly supporting the PACE trial. There are so many misconceptions in the letter that it is clear that you have not investigated this matter yourself but have – apparently- assumed that what the PACE authors tell you about it is correct and what patients tell you is not. I can only assume that this is because they are doctors and we are merely patients.
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Read more at https://spoonseeker.com/2018/08/29/letter-to-professor-watt-of-mrc/
 
dave30th said:
During the FOIA tribunal they used it as an example of someone so concerned about confidentiality that she withdrew her data--in other words, they used it to support her argument. In fact, the only confidentiality she was worried about was that she was in dispute over disability and the PACE authors had connections with insurers. So she was worried her information could leak from the trial to her insurers. I'm not sure where or if White talked about it, but both he and Chalder tried to get her to change her mind.
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When trial investigators glibly and wilfully twist the truth so deceitfully, it seems almost inevitable that how they report their trials' findings is likely to be of the same ilk.
 
Andy said:
Spoonseeker has sent a letter direct to Watt.
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That's a great letter by Spoonseeker.

Your letter also suggests that researchers might be ‘discouraged from working on the disease because of concerns that they could be subject to the level of hostility that PACE researchers have experienced’. The idea that researchers are being discouraged in this way is another often repeated misconception which seems to be intended to vilify patients. Working for the MRC, you will be fully aware of how little funding M.E. has received over the years.

Nevertheless there is research going on worldwide, strongly supported by patients and often funded by them. (Many of these researchers are critical of PACE and have signed the letter to The Lancet requesting its independent reassessment – see above.)
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There has been correspondence on the MEA fb page today requesting the MEA to write to the Times about the inaccuracies about patients in Fiona Watt’s statement




CS has recently posted the following.

“A letter has been sent by The MEA to The Times this afternoon. I will not disclose the wording right now- as some newspapers do not like pre-publlication of letters to the editor. CS“

EDIT: layout, punctuation
 
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Jonathan Edwards said:
I think you are probably wrong to worry. However much they dig heels in on PACE the possibility of letting themselves off the hook by funding some decent biology will be attractive to them. After all, they do not want activism to discourage people from researching ME.
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Let’s hope they go gung ho on the getting off the hook front then £££££££
 
Esther12 said:
Institute of Psychiatry tweeting the MRC statement, and quoting from the Watt's letter on "it is important that researchers are not discouraged from working on [CFS/ME]"

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I have no idea what MEA will be putting in its letter to the Times but I hope it includes something to the effect that this is an inaccurate characterisation of pwme, that we are being traduced.

ETA: grammar
 
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