Watt from MRC defends PACE in letter to Times

This is welcome. It may take time to rebuild patient trust, but this statement from @Action for M.E. is positive news. Thank you.

 

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? (I've checked the final docs, but it isn't mentioned there.)

 

If your MP spoke in the recent Westminster Hall debate on ME, it could well be worth drawing their attention to the letter from Prof Watt and asking if they'd be prepared to write to her to convey:

a) disappointment that she has publicly repeated unsubstantiated allegations against ME patients that were shown to be baseless at the Information Tribunal hearing in 2016.

b) surprise that the MRC continues to stand fully behind this trial considering the numerous methodological flaws and the growing concern in the scientific community - especially given the fact that millions of pounds of public funds were spent on this study. The MRC's failure to engage with these issues in any meaningful way raises legitimate concerns about whether it is fit for purpose.​

Professor Watt obviously isn't prepared to listen to privately well-reasoned concerns from people like Jonathan Edwards, but perhaps a bit of criticism from politicians will give her pause to reconsider.

 

from the MRC's website:

from Merriam-Webster's website: https://www.merriam-webster.com/dictionary/some :

ETA: Is there yet a more unspecific wording than saying "some" patients?

 

Facebook post from the MRC

Code:

https://www.facebook.com/MRCComms/posts/1386431784821427

and tweet from them
https://twitter.com/user/status/1034428780918517760

 

Very interesting that that was the reason. Brings that issue into sharp (Sharpe?) focus.

 

Not read it properly yet, but I think it may be very encouraging.

 

Yeah ... a bit like good science seems to be a huge hassle for them.

 

Reading the excerpt from @Brian Hughes' book made me think (it happens occasionally ) that the bad-science psychiatrist' running trials, seem to fall into a trap of their own short-sightedness.

1. They are trialing psychological treatments.
2. There are psychological factors that can influence their trial design and methodology.

They seem incapable of distinguishing between the two. As if they see the whole thing as a continuum, and the methodological psychological factors can just be bundled in with the treatment aspects. If it 'works' (i.e. gives the results they want) then they must have got it right ... .

They seem so wedded to their trials' greatness, and so blind to others' justifiable criticisms, I really do begin to wonder if this is what it is with them. Scientists who really do not understand how to run trials, psychological or otherwise. As if "If it's psychology, then we can do what we want with it's, because it all about psychology anyway isn't it?"

 

Thanks. Could somebody download the file and attach it here or post it somewhere e.g. dropbox. I don't want to give my credit card details to Scribd.

 

There are a few examples of this, but I can only remember the details of this one now.

It looks like the page is now inaccessible, but here's a copy of White submission to a FOIA review that I copied previously. In the second to last paragraph he mentions the trouble of destroying these patients' data, although rather misrepresents the reason this was done (implying it was out of concern data would be released via FOIA):

 

I think the MRC understands the criticisms perfectly well, but has decided that they don't want to acknowledge any responsibility for the failures of oversight that allowed the situation to occur and public funds to be squandered. If they admit that they messed up with PACE, people might start to wonder whether this was indicative of a wider problem and begin looking into how other trials were run or other aspects of the MRC's operation - and who knows what they'll find then.

Like the Lancet and the BMJ, they seem to have decided the best approach is to vigorously deny that there's a problem while refusing to engage with the detail of the complaints, in the hope that the story will blow over.

 

I have emailed Stuart Pocock and he does not want to get involved.

 

Thanks, @Esther12 , that's the one I remembered.

Seems a little different from the account given to @dave30th though.

 

Thanks for doing that. I feared as much.

 

And, that in itself, should be raising red flags all over the place. It seems to have become a political entity, where it's best to keep your mouth shut to keep in with them, rather than an council dedicated to good, rigorous research carried out in the interests of public health.