CFS - misleading reports on effectiveness of CBT and GET - PACE trial results

George Jenson made this Freedom of Information request to Oxford University Hospitals NHS Foundation Trust

This request has been closed to new correspondence. Contact us if you think it should be reopened.

Oxford University Hospitals NHS Foundation Trust did not have the information requested.

Dear Oxford University Hospitals NHS Trust,

1/ Please provide information on investigations/discussions and findings of the trust's investigation into the misrepresentations made by the PACE trial authors.

2/ Interests held by members in positions of influence such as Michael Sharpe with the insurance industry work/funding.

Yours faithfully,

George Jenson

FYI

PACE trial critiques :
https://www.statnews.com/2016/09/21/chro...
http://www.virology.ws/2016/09/21/no-rec...

Serious biomedical pathology presented at the International Association for CFS/CFS
https://listserv.nodak.edu/cgi-bin/wa.ex... .

NOTE:
Micheal Sharpe, Peter White, Trudi Chaldler were responsible for the design, implementation, relaxation of the PACE trial recovery definitions (so drastically that severely disabled persons could enter the trial, deteriorate and be lablelled recovered) and other misleading and false claims published about this trial.

Recently, the principal investigators admitted that the publication of the results was misleading and falsified, the results by a factor of 3-4 times, (published online in the Queen Mary University of London news).
This means that subjective results of people doing GET and CBT, that were statistically insignificant, were widely reported as "cures" - people who remained severely disabled on objective measures were said to be "recovered. Given the widely reported and know harms of GET and CBT to people with CFS- this falsification of results has had extremely adverse results for many UK citizens, it has forced them to partake in harmful activities and has denied them desperately neeeded care, services and pensions.

FOIA (RTH) OUH,

Dear Sir,

Please further clarify your request, please give details of exactly what it is you require.

Regards,

Valerie Gray

Freedom of Information Officer
Planning & Information
Oxford University Hospitals NHS Foundation Trust
The John Radcliffe Hospital
Headley Way | Headington | Oxford | OX3 9DU

Tel: 01865 572470
Email: [email address]

Recipients should be aware that all emails received or sent by this Trust are subject to the Freedom of Information Act 2000 and therefore information within them may be disclosed to a third party. Please note that under our obligations to the Data Protection Act 1998, we will not disclose any personal information without your consent.

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Dear FOIA (RTH) OUH,
Clarification as requested:
I have assumed that the NHS Trust is aware that there are many biological and physiological markers and abnormalities found in people with CFS and that the USA has rejected the idea (still held by the Wessley School of thought and the biopsychosocial school of thought in the UK) that CFS is a mental health disease - see the Centre for Disease Control website, the International Association of ME/CFS conference report. The UK biomedical researchers findings, such as detailed by the UK charity, Invest in ME.

In 2011 a paper was published in the Lancet, about a trial called the PACE trial, that contained grossly misleading claims of the effectiveness of GET and CBT for assisting people with the neurological disease CFS. After a 5 year battle the raw data from the trial was released and even the authors themselves admitted in the QMUL news that they have inflated their claims that GET and CBT help people with CFS by a factor of 3. In fact these "treatments" are ineffective, recovery was not used in the normal meaning of the word recovery, and objective measures showed a NULL effect.

I have made the assumption that the news, that they have been mislead, was of major concern, to the Oxford UNiversity Hospitals NHS Trust, given its reliance on GET and CBT as "treatment" for CFS, and the involvement of PACE principal investigator Micheal Sharpe with the trust.

I have made the assumption that given that the NHS Trust, has been operating under the false claims, made by Peter White, Trudi Chalder, Michael Sharpe, that when these 3 principal investigators, admitted that their claims were misleading at best, the Oxford University Hospitals NHS Trust would investigate, discuss and have findings in relation to this matter.

I have requested copies of information relating to the investigation, discussion, actions made by the NHS Trust on realising that it has been mislead by Micheal Sharpe et al:
1/ Please provide information on investigations/discussions and findings of the trust's investigation into the misrepresentations made by the PACE trial authors in claiming that GET and CBT were effective treatments for people with CFS.

PACE authors did not disclose their conflict of interest with the trial participants. It is my understanding that Michael Sharpe works for the Oxford University Hospitals NHS Trust and hence I have asked what his links to the insurance industry are. I also want to know the interests of other persons who may benefit from misleading claims that GET and CBT are "treatments" for CFS. It appears that the insurance industry, has a vested interest, in claiming that GET and CBT are "treatments" for CFS and that any failure to respond to such "treatments" is the fault of the patient. This vested interest by the insurance industry is at odds with the interests of the patients who want well developed, scientifically sound research into the disease CFS, and is at odds with the UK tax payer. Neither the tax payer nor the patients and their carers benefit from the false claims made by the Wessley School of thought and the PACE authors. In fact CBT and GET are harmful to many patients and are a waste of tax payers money. Further, the convoluted claims and massaging of data in order to uphold the idea that CFS is a mental health disorder, has stifled research into biomedical causes/treatments that will reduce the enormous impact of this disease on the health service/tax payer, and improve patients lives.

2/ Interests held by members in positions of influence such as Michael Sharpe with the insurance industry work/funding.

I trust that this clarifies my request, please feel free to ask any questions you have in relation to this request for information.

Yours faithfully,

George Jenson

FYI

PACE trial critiques :
https://www.statnews.com/2016/09/21/chro...
http://www.virology.ws/2016/09/21/no-rec...

Serious biomedical pathology presented at the International Association for CFS/CFS
https://listserv.nodak.edu/cgi-bin/wa.ex... .

NOTE:
Micheal Sharpe, Peter White, Trudi Chaldler were responsible for the design, implementation, relaxation of the PACE trial recovery definitions (so drastically that severely disabled persons could enter the trial, deteriorate and be lablelled recovered) and other misleading and false claims published about this trial.

Recently, the principal investigators admitted that the publication of the results was misleading and falsified, the results by a factor of 3-4 times, (published online in the Queen Mary University of London news).
This means that subjective results of people doing GET and CBT, that were statistically insignificant, were widely reported as "cures" - people who remained severely disabled on objective measures were said to be "recovered. Given the widely reported and know harms of GET and CBT to people with CFS- this falsification of results has had extremely adverse results for many UK citizens, it has forced them to partake in harmful activities and has denied them desperately neeeded care, services and pensions.

Yours sincerely,

George Jenson

FOIA (RTH) OUH,

Dear Mr Jensen,

 

I am writing to respond to your request sent on the 18^th November 2016.
OUH can confirm that it does not hold the information requested.

 

1/ Please provide information on investigations/discussions and findings
of the trust's investigation into the misrepresentations made by the PACE
trial authors – N/A.

 

2/ Interests held by members in positions of influence such as Michael
Sharpe with the insurance industry work/funding – N/A.

 

 

Yours sincerely,

 

 

Valerie Gray

 

Freedom of Information Officer

Planning & Information

Oxford University Hospitals NHS Foundation Trust

The John Radcliffe Hospital

Headley Way | Headington | Oxford | OX3 9DU

 

Tel: 01865 272470

Email: [email address]

 

Recipients should be aware that all emails received or sent by this Trust
are subject to the Freedom of Information Act 2000 and therefore
information within them may be disclosed to a third party. Please note
that under our obligations to the Data Protection Act 1998, we will not
disclose any personal information without your consent.

 

 

 

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Dear FOIA (RTH) OUH,

I am stunned by your response that you have not any information pertaining to the misrepresentations made by the PACE trial authors, given the serious nature of these misrepresentations- an over stating of the effectiveness of GET and CBT for patients with CFS by a factor of 3-4. PLease check .

1/ Please provide information on investigations/discussions and findings
of the trust's investigation into the misrepresentations made by the PACE
trial authors – N/A.

Likewise I am stunned that you do not obtain information on the finnancial interests of members in positions of influence. Micheal Sharpe is in a position of influence depsite his conflict of interest, given his finnancial links to the insurance industry. How many others with vested interests are leading health care policy? PLease check .

2/ Interests held by members in positions of influence such as Michael
Sharpe with the insurance industry work/funding – N/A.

Yours sincerely,

George Jenson