The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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MRC Complaint Update

Discussion in 'General ME/CFS News' started by Daisymay, Dec 15, 2010.

  1. Daisymay

    Daisymay Senior Member

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    For information, may be reposted:



    9th December 2010

    Dear Mr Willetts

    On the advice of Gillian Ross in your Enquiry Unit, as research assistant to Professor Malcolm Hooper I am writing to inform you that he has received no response to his complaint about the MRC PACE Trial as you assured him would be the case in your letter dated 8th November 2010 (reference: 2010/0085082PODW).

    Briefly, the history of this significant complaint is as follows:

    1. Because no response to an initial complaint to the MRC itself about the PACE Trial was received, on 11th February 2010, Professor Hooper lodged a formal complaint with the then Minister for Science and Innovation responsible for the MRC, the Rt Hon Lord Drayson.

    2. Lord Drayson replied by letter dated 8th March 2010 (reference: 2010/13270POLD) advising that the complaint should be addressed to Dr Morven Roberts, the MRC's Clinical Trials Manager.

    3. Professor Hooper's complaint was therefore lodged with the MRC on 30th March 2010 and was addressed personally to Dr Morven Roberts. A print-out of the signature for its receipt at the MRC was obtained.

    4. By 18th June Professor Hooper had received no acknowledgement or response, which many people saw as discourteous behaviour on the part of Dr Morven Roberts, so the MRC was contacted by telephone and the enquirer (myself on behalf of Professor Hooper) asked to speak to Dr Morven Roberts. I was variously told that Dr Morven Roberts was not Clinical Trials Manager; that there was no-one of that name at the MRC; that I would not be given the name of the person who was Clinical Trials Manager; that Dr Roberts was Clinical Trials Manager, and that Dr Roberts was in a meeting, whereupon the person at the MRC to whom I was speaking informed me that she was going to put the phone down with no further discussion, which she did. The episode was a quite extraordinary response to a simple request to speak to the Head of a department of a publicly-funded body about a legitimate complaint to which no acknowledgement had been received for almost 12 weeks.

    5. That same day, 18th June 2010, Dr Morven Roberts sent an email to Professor Hooper (which was incorrectly addressed to "Professor Cooper") saying: "I understand you have recently tried to contact me in regard to your complaint lodged with me as Clinical Trials Manager about the PACE trial. I can let you know the MRC are working through the large document you have sent and will respond in due course".

    6. Nothing further was heard from Dr Morven Roberts, so on 7th October 2010 Professor Hooper wrote to the current Secretary of State responsible for the MRC, the Rt Hon Dr Vince Cable MP.

    7. Dr Cable did not acknowledge or respond to that letter, but on 8th November 2010 you did reply, courteously apologising for the delay in doing so and promising a thorough response by the MRC. In your letter, you said "You have taken the correct course of action in raising your concerns with the MRC....I have been assured that you will receive a response from the MRC within the next month".

    8. That deadline has now passed and no response has been received from the MRC.

    It is now ten months since this major complaint was first raised and, given the seriousness of the issues set out in his complaint, Professor Hooper is sure you will agree that such a delay is wholly unacceptable.

    The ramifications of his complaint are legion and if, as expected, the PACE Trial results are interpreted as being supportive of behavioural interventions including exercise strategies for the alleged target group (people with ME/CFS), they may have the potential to cause irreversible iatrogenic harm on seriously sick and vulnerable people in the UK, estimated in 2002 by the Chief Medical Officer's Working Group Report to number 240,000 (which far exceeds the 83,000 people estimated to suffer from the similar neurological disorder multiple sclerosis).

    The Chief Principal Investigator of the PACE Trial himself, psychiatrist Professor Peter White, is on record as stating as long ago as 1992: "Do not exercise if clinically active infection is present" (Invicta LiNC-UP, Belfast Castle, 15th April 1992).

    The evidence continues to mount that ME/CFS is a chronic inflammatory neuroimmune disorder, including the recent evidence of an association of a retrovirus (XMRV / MLV) with ME/CFS, this family of retroviruses being only the third known to man, the other two being HIV (which causes AIDS) and HTLV (which causes leukaemia and lymphoma).

    Professor Hooper asks that you hold the MRC to account over this very important issue as quickly as possible.

    Yours sincerely,

    Margaret Williams
     
  2. Enid

    Enid Senior Member

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    Thanks to Prof Hooper and Margaret Williams for the long battle to remove all psychiatric suggestion (or control) from ME in the UK. Too much international research and findings confirms their mis-diagnosis past and present.
     
  3. cigana

    cigana Senior Member

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    Thanks for posting this dasimay. The good news is that their failure to reply to a formal complaint 10 months after it was sent suggests they are panicking, and are not able to easily compile a quick and ready response because such a response would not stand up to the strength of Prof Hooper's report.

    I am so glad Prof Hooper is fighting for our cause.
     
  4. lancelot

    lancelot Senior Member

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    Good for Prof Hooper but he is undermaned by all them other Weasels. they'll cut his funding and take his license to practice like Myhill.

    What to do? there is only one solution: a REVOLUTION!!!

    God help all of you!!!
     
  5. cigana

    cigana Senior Member

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    I think Prof. Hooper is effectively retired -so no one can threaten to cut his funding - I think we need to recruit more retired people!
     
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Only 1 out of 8 Human Beings will NOT murder another person, when doing so is ordered by an authority figure and for a "good reason"
    I'm sure some folks here will know the psychological experiment that I speak of and the sad implications of it, and thus, why we are being crapped on by the medical establishment and others.

    Professor Hooper is that One in Eight of us who is not gutless, ammoral, weak willed, unwilling to empathize etc etc, in short a person with courage and honour: God bless him! :)
    And may the Almighty show Simon Wessely and others, the true meaning of compassion...
    which is about the worst damn curse you can wish on anyone who's earned and in need of it, sigh.
     

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