Some quick thoughts for what they are worth.
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61. A review of the minutes in question reveals sensitivity among the
researchers in light of the highly politicised and polemic nature of
elements of the public debate noted above. In this environment,
researchers fully expected the meetings to be closed to the public and
the minutes to be confidential.
The area is highly politicised not simply because of patients but also because of the proponents of CBT and GET and statements they have made, which can include talk about entitlements to various disability supports incl. disability payments, coercion, safety of therapies, etc.
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62. These responses express strong views as to the negative impact on
future exchanges and the willingness of some important participants to
be involved, for example, patient representatives whose role is to help
ensure a public oversight and balance of views and who would not
participate if their identities or view/statements as reflected in the
minutes were disclosed to the public.
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I think the patient representative identities have already been released through the minutes that were already obtained under the FOIA.
As I recall, Chris Clark was one of them. He was a well-paid chief executive officer of Action for ME and hence it is questionable that he should get some special protection. He wasn't a patient.
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63. Furthermore, QMUL stated that there are other studies planned and
beginning and disclosure of the identity/opinions of the participants in
the completed study could likely impact participation and exchange of
views and analysis on other studies. Since ME/CFS is an area where
there is a significant need for ongoing research, the public interest in
continuing to perform such studies in an atmosphere conducive to
academic freedom is great with the potential prejudice to its quality and
successful completion real and significant.
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I'm not sure I understand their point. As a counterpoint, greater access can ensure that poor practices, such as the selective reporting of outcome measures, could be reduced. Academic freedom shouldn't be used to allow poor practice.
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64. QMUL explained that the research and its findings have been fully and
timely published in a respected peer reviewed journal, The Lancet, with
access to the findings fully available to the public.
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The results have not been fully reported in the Lancet.
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65. Moreover, these findings have been subject to extraordinary public
scrutiny. The Lancet, in response to extensive public commentary, in an
unusual procedure, subjected the study to a further peer review
process.
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Do we have details of this? Peer reviewers will usually spot something, even if it is minor.
The results of much public scrutiny is that people would like to have the data for the outcome measures in the published protocol.
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68-72. Is this AfME who are saying this? That's disappointing.
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75. The internal review of the trial minutes, manuals, trial protocol, the
Lancet publications, the interview statements and other material
indicated that, in contrast to the complainant’s suggestion, the PACE
trial was not related to a debate about psychiatric understanding versus
biomedical.
76. The trial was intended and designed to test treatments currently
available within the NHS that were based in reversing maintaining
factors in the illness, not causative factors per se, which were a mixture
of physical (e.g. deconditioning) and psychological (e.g. coping
behaviours) factors. The review indicated that the statement of the Trial
Senior Statistician concurred and indicated no scientific justification
existed for disclosing the minutes.
77. QMUL explained that attempting to evaluate if there was proper
balancing of the complainant’s public interest rationale of determining
suggested collusion, predetermined results, conflicts of interests and
lack of scientific rigour as requiring the minutes’ disclosure, the internal
review of the trial management group indicated that it contained more
physicians than psychiatrists.
78. A review of the background literature on CFS/ME indicated that medical
authorities, including investigators, do not regard the illness as purely
psychological in its nature, but as both physical and psychological.
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In an uncontrolled trial
http://www.ncbi.nlm.nih.gov/pubmed/17426416 involving Peter White, CBT was said to bring about full recovery in 23%. If a treatment brings about full recovery, it must have dealt with whatever is currently causing the problem. All CBT deals with is behaviour and thoughts, so that claim is akin to saying that behaviour and thoughts are causing the condition.
Similarly, this PACE Trial centre (King's College) talked about recovery - discussed in this Co-Cure post:
http://bit.ly/Sp7fRJ i.e.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1212D&L=CO-CURE&P=R2977&I=-3
And Peter White talked about recovery here:
http://bit.ly/V1GMb5 i.e.
https://listserv.nodak.edu/cgi-bin/...CO-CURE&P=R2815&I=-3&d=No+Match;Match;Matches
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79. Similar claims of collusion between government, researchers and the
insurance industry regarding disability-related benefits or insurance
payments with respect to a number of the trial researchers involved in
the PACE trial were found to have been previously reviewed in another
context but found wanting previously as indicated by the decision in R
(on the application of Fraser and another) v Nat’l Inst for Health and
Clinical Excellence and another [2009] EWHC Admin (452) including the
unusual Afterword, by Simon J.
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That court judgement related specifically to the people on the NICE guidelines development group, **not** the PIs of the PACE Trial. The report of the parliamentary group led by Ian Gibson could be quoted on this issue. Probably other things also.
Regarding the PIs specifically, I think this particular case involving Peter White is an interesting example:
http://forums.moneysavingexpert.com/showthread.php?t=2356683
