Discussion in 'General ME/CFS News' started by Indigophoton, Apr 9, 2018.
I imagine he’s going to just ignore this one on twitter. I can’t see how he could wriggle out of it. It’s a direct contradiction to multiple things he’s been saying.
and also contradicts some of the things Simon Wessely tweeted
I took that to indicate bias rather than harm per se. And one account is not enough while they're all like "didn't see it. didn't happen."
This is pretty close to direct, and if that participant was prepared to talk to Carol Monaghan, they might (but their choice of course) be prepared to go directly on the record. But the above is a pretty close second to having that. Also interesting that the above quote includes "and that despite patients not recovering (or in some cases worsening), they would publish that the treatment was successful". That very strongly suggests that other PACE participants were also adversely affected by GET, and that the investigators obfuscated that in some way. Maybe why so much resistance to releasing all the data?
Edit: Just realised that is from the Feb debate, but still valid.
Edit 2: "and that the investigators obfuscated that in some way" ... would that be of interest to @dave30th or Steven Lubet? If it could be proven?
Oh, that's fantastic. Does CBT help pathological liars, maybe he needs a dose of his own medicine?
He seriously underestimates the ability of pwme to do the detective work to dig up these inconvenient documented truths.
"I have played a leading role in the development of cognitive behavioural treatment for the previously untreatable chronic fatigue syndrome (CFS/ME). From 2005 to 2011 I co-led the MRC national PACE trial of treatments for CFS/ME (publications 2011-15). This has shaped NICE guidance and services in the UK and internationally."
Wasn't he refuting his involvement in the PACE papers and that he was not a centre lead?!!
That was SWessely this is MSharpe
I haven't read through these so not sure if they would provide anything useful
https://www.dropbox.com/s/kbjmmuc1u...Evidence Based Guidance January 2018.pdf?dl=0
This is the problem: PACE trial stories
[Yes, there is nothing there]
Is there a thread on here where we are recording PACE stories?
I found this one: http://copingbadly.blogspot.com/2018/03/reanalysis-of-pace-data.html
(I'm having trouble tracking down any more - my computer seems to be on strike and is doing everything ..... very.... slowly .... at ...... the ........ moment.)
Is this any use?
Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome
Author links open overlay panelDominicDougallaAnthonyJohnsonbKimberleyGoldsmithcMichaelSharpedBrianAnguseTrudieChalderfPeterWhiteg
And another - left as a comment on Keith Laws blog:
This is concerning because the trial was well over by then - so what on earth were they doing still recruiting patients?
[Edit: Thread moved to here]
He doesn’t seem to understand that he can’t have both shaped NICE guidelines and not had any effect at the same time. It’s a one or the other deal.
My ultra-slow computer won't let me see that.
It’s a collection of 19 public statements from participants collected for the tribunal in a pdf.
There’s too many to post unfortunately.
Mildly encouraging, I wonder if this data sharing platform will be more independent than the Cochrane group.
I've uploaded it directly.
Separate names with a comma.