Discussion in 'General ME/CFS News' started by Dolphin, Jan 12, 2013.
and the UK is a democracy don't you know!?
Where have they been published? Is it publicly viewable?
Some of the results have been published at:
However, the paragraph from the ICO isn't correct in that all the data hasn't been published. The PIs have said they intend to publish more but also have said they don't plan to publish some of the data.
Hmm. Not good. Not good at all.
What I find most disturbing about this ruling is the assertion that a "patient representative group" requested that the minutes should not be disclosed. Does anyone know who this mysterious group is, and the process by which they were chosen to represent us?
It makes you wonder what they have to hide. I'd expect any representative of mine to be competely transparent regarding anything they said in a meeting.
‘Keeping the Bastards Honest’ – The Promise and Practice of Freedom of Information Legislation
This thesis is presented for the degree of Doctor of Philosophy of Murdoch University in 2006
Johan Lidberg, MA Journalism
Stephen Halpern was a patient rep at Barts for a number of years. Not sure if he was ever a patient rep for the PACE trial in particular.
It will all lead back to AFME would be my guess
MS CLARE MARY FRANCIS MBE, GEORGE ARMSTRONG, MRS NADIA CONWAY, MRS ONDINE UPTON, MR RICHARD EVANS, MR TONY GOLDING, MR STEPHEN HALPERN, MR CHRISTOPHER JOHN CUNDY, MR LIONEL GODFREY, MR MARTIN JARVIS, MRS DAVINA WATSON, MR CHRISTOPHER HOARE, MRS SARAH HELTON, MR ALAN COOK CBE
This is the point that stands out for me, from reading the ruling. The argument seems to be that a "patient representative group" was involved in these discussions, and they would not have felt comfortable doing so if their involvement, and what they were saying during the planning of the study, was public knowledge.
My guess was the same as UKXMRV, that this probably is AFME and AYME, and I think it's pretty telling that they don't want the public (by which we mean patients, really) to know what they're saying to the authorities and researchers behind the scenes. If they are scared of patients knowing what they're saying to the authorities on our behalf, does that not call into question whether they really are a 'patient representative group'?
Two sets of minutes previously obtained under the Freedom of Information Act. Only mention AfME.
If Chris Clarke (AFME) was the patient representative on the PACE trial then it wouldn't be the only time he carried out that role. NHS plus also asked him to be the Patient Representative on the production of their 'Occupational Aspects of CFS: A National Guideline' in 2006.
Some bits that caught my eye:
Any support to this statement, or is this just to keep non-BPS folks from freaking out when adverse events start rolling in?
This seems to reflect an assumption that GET can't harm ME/CFS patients.
On the one hand, excluding "somatization" patients would get rid of all ME patients with physical symptoms. But on the other hand, it's impossible to guess how many of the somatization patients were actual somatization patients and not ME/CFS patients. And including hyperventilation patients seems rather bizarre.
Someone has posted this very important question on AfME's Facebook page, but AfME are ignoring it:
You can also try a Google Site Search
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