Discussion in 'General ME/CFS News' started by Cheshire, Jul 3, 2017.
A very good read. I've written a comment. Do add more.
Denying patients the right to voice their valid criticisms of PACE and other trials is ethical?
How about conducting trials without informing patients of conflicting interests?
Correct. CBT/GET is being promoted for political reasons.
liked the fact Peter couldn't be arsed to reply to emails from a legal ethicist. kinda speaks volumes. why doesn't he just publicly say "i'm going to hide under a rock, i've made a big mistake and my career is ruined". too early to hope for that. he should run for the hills whilst he's got chance. thing is we all know the close clique will stick together. Will be interesting....
@Jill, I think you mean Michael Sharpe, not Peter White. An easy mistake to make, since they are both PACE authors.
yes, its late here!!! crumbs libelling the wrong clown!!
Ive only seen the sly Weasel speak here at Auckland Med School on some topic about postmodern illness constructs. God, what a slippery , bow tie wearing clown he was. Audience lapped all his bull up though.......
I think this is a really good article. Calm but direct. I really enjoyed it and I'm pleased it's been raised as I knew nothing about this seminar. Disturbing that this sort of thing is still going on.
I think it's lucid, calm and powerful. It also has the virtue of being right.
St Cross College seems a bit of an oddity, graduate only & catering to (presumably rich) interenational Students
The Master is Carole Souter CBE
I think David Tuller & Steven Lubet deserve a public right to reply by St Cross College...
Fwiw. Comment deemed 'spam' on Disqus:
This is an excellent commentary, not least for being so benevolent in giving Sharpe the benefit of the doubt given the secrecy and (by implication of the non-responses to a request for information) reluctance to provide proper evidence of the complete lecture, such that Lubet does not 'pronounce' on the basis of the abstract alone. A very professional approach. Sadly unmatched by a similar professionalism on the side of the PACE PI.
As a patient I don't have to be so even handed. I suspect the short abstract is indicative of the presentation itself. The irony is of course that the 'deniers' with all the backing of an Establishment political clout (not to mention thumbscrews on UK media) are indeed the members of the cabal sometimes known as The Wessely School, of which Peter White is a central character. When he says "The use of such co-ordinated pressure group action against science was prominently seen in the field of climate change research but is now emerging in other areas." he is describing himself & the juggernaut of the BPS model which via MUPS is invading every area of British medical life from the top down. It's insidious and very worrying.
We know that PACE has acquired a reputation for being an example of such problematic research practice that it is now being used, & with some amusement in some quarters, in US university lectures and presentations as an example of how NOT to 'do' research. For anyone in doubt about quite how bad the PACE Trial actually is and might ponder the calibre of mathematician who recognises its flaws and is prepared to write about them, look no further than Recbecca Goldin, mathematician par excellence (and clearly a far better statistician that those who cobbled the PACE Trial papers or whom The Lancet employed for its 'endless rounds of peer review' ): (links seem to trigger a spam response. for interest please search for "PACE: The research that sparked a patient rebellion and challenged medicine. Rebecca Goldin').
As a patient it is a relief to witness people of equivalent calibre in their different fields interrogating the 'evidence' that the BPS/ Wessely School have been promulgating for years, and finding it wanting. Thankfully we now have Nobel laureates at work to untangle the intricacies of the mechanism of this severe and very disabling disease (and it has nothing to do with 'aberrant thought processes') , we have journalists (not from the UK needless to say) who are willing to write about the way in which the David and Goliath fight has been maturing over the last 30 years to the detriment of all patients (because until very recently sick patients have had to fight the battle unaided) and we have academics such as Lubet willing to make observations based, in his case, on a proper understanding of what 'ethical' actually means.
When one is told 'black' is 'white' for decade after decade then the acknowledgement that others recognise one's truth for being the reality is reassuring. However, suffering very real and exquisitely disabling physical disease for multiple decades needs more than this. We need care, we need ameliorative options.... biomedical options. The sooner the BPS model is annihilated the better. My thanks goes to all those academics with the intelligence, the morality and the will to change this appalling state of affairs."
From his point of view no doubt he rises above such petty wonderings by not responding. They are all very vexatious. What none of us can see and what we fail to understand is that it's his birthright to to be correct in whatever he says and it is never to be in dispute.
Sharpe's passive aggressive response is not to reply.
Instead there has been an ongoing Crawley/Sharpe/Wessely roadshow decrying proper investigation of the dodgy stuff as an attempt to save their repuatations & careers. Pity people keep phptographign the slides
Peter White has retired,a normal person would enjoy his sizeable pension. However paranoia keeps him going
The emails are worth sending it let's them know patients are well informed, which must be very scary for Team PACE.
*David Tuller has got under TEAM PACE's skin in a way that the UK charities have not. Fair play to DT
*PS sent an email to the "Master" of St Cross College about the Sharpe lecture & Steven Lubet's reply.
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