XMRV Professors: No Contamination found in PACE Trial

DWP & Swiss Re's PD White (to NICE): "You stress the "great care" required in providing any helpful intervention for such patients. It is enough to put off any self-respecting GMC/RCN fearing healthcare professional in trying to help patients with CFS/ME. Is this really what you wish to convey?

PDW: "...Chronic Fatigue Syndrome/ ME is most often not." [a chronic disease]

PDW: "Equipment and aids may hinder recovery".

PDW: "We are in no doubt that it is a powerful message for a therapist of any sort to provide such aids".

PDW: "Sometimes acting as an intermediary between patient and employer may encourage dependence rather than fostering recovery via empowerment".

PDW: "Referral to specialist care should depend on the severity of disability, not severity of symptoms".

PDW: "The ultimate goal of GET is to evoke a behaviour change and increase activity levels by using the medium of exercise to facilitate this (rather than being amount based)".

PDW: "Severity of symptoms is not a contra- indication for GET ... Why should someone who is only moderately disabled require any such equipment? ...... aids should never be seen as a permanent solution to disability in this illness".

PDW: "If it takes "years" to achieve goals, then either the goals are wrong or the therapy is wrong ... If a therapy is not helping within a few months, either the therapy or the diagnosis or both should be reviewed and changes considered"

Bavinton (PD White's GET Manual Co-author) "Physios will need to be patient with outcomes as it can take months if not years for progress to be made"

PDW: "We do not know any evidence that would support different strategies for severely disabled patients ..."

PDW: "We do not agree that drug treatment should be initiated at lower dose than in usual clinical practice".

PDW: "Why should anyone with concentration difficulties find it easier to use audiovisual technology ... Would it not be more effective to negotiate a simple graded programme of reading ..."

PDW: "The symptoms of severe CFS/ME are no more "varied and complex" that those with less severe disability".

PDW: "... patients diagnosed suffering from CFS/ME do sadly commit suicide."

(A mother to NICE):"My daughter .. a long-term ME sufferer, died by her own choice on ... her 27th birthday. Her condition was in fact better than it had been for many years, but she was due to re-apply for her DLA benefit, which enabled her to live an independent life. The stress associated with such applications caused major relapses. At previous applications she had been treated in such a horrendous and disbelieving manner, that she said that she would never ever apply again. Her course of action meant that she never had to".

DWP Version 4 April 2009 Chronic Fatigue Syndrome - Guidelines for the Disability Analyst MED/S2/CMEP~0017 The author and Medical Services gratefully acknowledge the contribution of the authors (Professor S Wessely, Professor P D White and Professor M Aylward) of the enclosed articles and their kind permission to reproduce them in this module (Acknowledgement from version 1)

Category:

Nonprofits & Activism

Tags:

• XMRV
• PACE
• TRIAL
• DWP
• ATOS
• UNUM
• mrc
• wessely
• peter
• denton
• white
• sharpe
• gerada
• chalder
• CBT
• myalgic
• cfs
• cfs/me
• NHS
• AYLWARD
• mikovits
• McClure
• AFME
• AYME
• DLA
• MRC
• me/cfs
• ISRCTN54285094
• 54285094
• Swiss
• Re
• LANCET
• G0200434
• coffin
• nih
• isrctn
• Ioannidis
• false
• research
• published
• finding
• AEGON
• UK
• taxpayer

[titusLcarus]

meassociation

16 February 2011

Professor Stephen Holgate, Chair of Medical Research Council (MRC) Expert Group on M.E.

Professor Holgate gave a brief history of M.E. research, and explained that scientific peer reviews had tended in the past to involve mainly those with a background in neuroscience. This had led to research that did not reflect the views of those who believed that the condition has an organic cause

[titusLcarus]

J Couper Australian and New Zealand Journal of Psychiatry 2000

[titusLcarus]

First, a report from the Chief Medical Adviser’s Expert Group was published commenting on diagnostic and prognostic issues so as to be able to give ‘meaningful advice on social security benefits’

[titusLcarus]

The Australian draft document suggests that a CFS case of greater than 5 years of disability, during which the person is incapable of gainful employment, should be regarded as ‘permanent disability’ for medicolegal purposes.

[titusLcarus]

As we have seen, the very inception of the UK consensus report arose in large part from a wish to challenge the notion that such pronouncements can yet be made in relation to a disease concept where so much remains uncertain.

[titusLcarus]

In contrast to the eight psychiatrists on the sixteen-member UK working group, the Australian group ought to be less vulnerable to criticism that it is ‘top-heavy with psychiatric experts’

[ShowalterdontlikeME]

"Voluntary" work for insurance companies! How public spirited!!!!!

[titusLcarus]

Further studies demonstrated the importance of patients’ illness attributions in predicting clinical outcomes after viral infections and, controversially, demonstrated that membership of a CFS/ME selfhelp group could be associated with a poorer clinical outcome.

[titusLcarus]

Encouraged by these and other insights from contemporary research, UK psychiatrists in the mid-1990s began to take up more opportunities to comment in the electronic media and in the press on the potential benefits of psychologically informed management strategies for CFS

[titusLcarus]

Psychiatrists were emboldened to comment further in the media on the CFS/ME issue in the role of leaders in research and clinical management