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Letter to Prof. Hugh Brady, VC Bristol University, Nov 2016

Discussion in 'Open Letters and Replies' started by Trish, Dec 15, 2017.

  1. Trish

    Trish Moderator Staff Member

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    I did not put this on public record when I sent it a year ago. I have had no reply or even an acknowledgement. I sent it by snail mail marked Private and Confidential.
    Now that we have a forum for keeping a record of open letters, I've decided to share it here.

    29th November 2016

    Professor Hugh Brady
    Vice Chancellor and Principal
    University of Bristol.

    Dear Professor Brady,

    I am writing to you as a concerned citizen about a medical trial being undertaken at the University of Bristol which is already attracting international attention for its poor quality and for the wide advance publicity making unsubstantiated claims of success rates before the trial has started. There is a serious reputational risk to the University of Bristol, as has happened to Queen Mary University London (QMUL) following the debacle of the forced release of the PACE trial data (see below).

    The Bristol trial in question is called FITNET, a trial of internet based therapy for Chronic Fatigue Syndrome (CFS/ME). You may be aware of controversy surrounding this condition and its treatment. Professor Esther Crawley, the principal investigator, favours treatments based on cognitive behaviour therapy and graded exercises / activity management. She claims there is a sound evidence base for these methods and that they are not harmful (both claims incorrect). She defines CFS/ME in children by the single symptom of three months unexplained fatigue. Neither this overly inclusive definition, nor these treatments are accepted as having any validity by international researchers, apart from a small coterie of British and Dutch doctors, most of them psychiatrists.

    Rather than spell out the problems with FITNET myself, I urge you to read the two attached articles published by Dr. David Tuller, DrPH. David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley.

    At the recent IACFSME conference in the USA papers were presented by biomedical researchers from all over the world demonstrating that CFS/ME is a serious biological condition not amenable to psychological or exercise treatment. There are neurological, immunological, genetic, epigenetic and metabolic findings suggesting a hypometabolic state with problems of energy production which make exercise problematic. Internationally recognised research definitions list post exertional malaise (PEM), not fatigue, as the cardinal symptom defining CFS/ME. I attach a Medscape article highlighting some research reported at the conference. I also give a link to a webinar by Professor Anthony Komaroff of Harvard University reporting on the conference.

    The QMUL case mentioned above refers to the PACE trial of CBT and graded exercise therapy (GET) in adults. There has been international condemnation of the flawed methodology and distorted reporting of the findings of this trial, which, if properly analysed according to protocol, was a null trial. I attach a letter from many eminent scientists and doctors asking the Lancet to retract the paper. QMUL spent over £200,000 trying, unsuccessfully, to prevent the disclosure of anonymised raw data from the PACE trial, which has now been re-analysed, showing that the treatments did not lead to improved recovery rates as the authors had claimed (see attached report). It may or may not be coincidence, but the Principal of QMUL and the Principal Investigator of PACE announced their retirement shortly after the data was released.

    I attach a list of further references to help you understand the saga of CFS/ME research in the UK. This has a long and sorry history, involving psychiatrists at the heart of the British medical establishment, going right to the top, with influence in the Medical Research Council, Science Media Centre, NICE guidelines, Cochrane reviews and government. The story of this scandal is being written as it happens, and will eventually become fully public. I do hope you will not let Bristol University be drawn any further into the scandal and will find a way to stop the FITNET trial before it does further damage to the University’s reputation and to the health of vulnerable children. There are serious questions about all of Prof. Crawley’s research into CFS/ME, which I would urge you to investigate including trials called SMILE and MAGENTA, not yet published.

    If you would like to discuss this situation with doctors who are fully informed about it, I suggest you contact the medical advisors to the ME Association, Dr Charles Shepherd and Dr Nigel Speight, and the medical advisor to Invest in ME Research, Professor Jonathan Edwards (Emeritus Professor, UCL).

    I would be grateful if you would keep my name and address confidential, as whistleblowers can be vulnerable, and my identity has no relevance to your enquiries.

    I may decide in future to publish this letter and (with permission) your reply.
    Yours sincerely,

    Ms Patricia Davis
    (address and e-mail address redacted)
     
    Mark, Chezboo, AndyPandy and 32 others like this.
  2. Trish

    Trish Moderator Staff Member

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    This is the list of references I attached.

    IACFSME conference reports:

    Medscape articles

    http://www.medscape.com/viewarticle/871552

    http://www.medscape.com/viewarticle/871482

    Professor Anthony Komaroff (Harvard) summary of conference webinar:




    Countess of Mar’s formal complaint to the BBC about Professor Crawley’s recent media blitz

    http://www.margaretwilliams.me/2016/bbc-complaint-mar-nov16.pdf


    TYMES trust (The young ME sufferers trust):


    I page statement from Dr Nigel Speight ‘Does graded exercise therapy cure ME’

    http://www.tymestrust.org/pdfs/vision2011-1insert.pdf


    Published paper on harms of forced GET and child protection issues.

    http://www.tymestrust.org/pdfs/falseallegations.pdf


    Banned from sleeping - 1 page detail about why sleep restriction is counterproductive

    http://www.tymestrust.org/pdfs/ttbannedfromsleeping.pdf


    List of Tymes publications

    http://www.tymestrust.org/tymespublications.htm


    Virology blog - including articles by David Tuller:


    An open letter to Dr Horton, editor, the Lancet

    http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/

    Second letter with full list of signatories

    http://www.virology.ws/2016/02/10/open-letter-lancet-again/


    Non-recovery data reanalysis of PACE trial data following release

    http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/


    Open letter to Principal of QMUL requesting data release

    http://www.virology.ws/2016/09/06/open-letter-to-queen-mary-university-london-about-pace/

    About harassment

    http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/


    About FITNET

    http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/


    http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitness-nhs/


    Dr Keith Geraghty - paper in the Journal of Health Psychology on PACE-gate:

    http://hpq.sagepub.com/content/early/2016/10/27/1359105316675213.full.pdf.html

    Dr. Geraghty’s article in Nursing in Practice June 2016 not all in the mind. Gives good overview of history.

    http://www.nursinginpractice.com/ar...gic-encephalomyelitischronic-fatigue-syndrome


    Faculty Lounge - a US legal ethicist on PACE-gate and conflict of interest in those promoting a therapy researching it and influencing outcomes - also relevant to FITNET.

    http://www.thefacultylounge.org/2016/11/the-pace-study-open-access-and-conflicts-of-interest.html

    Open letter to Professor Sir Simon Wessely (key proponent of the now discredited biopsychosocial model of ME and instigator and supporter of PACE.) and his response.

    http://www.thefacultylounge.org/201...simon-wessely-defender-of-the-pace-study.html


    Information commissioner tribunal ruling

    http://informationrights.decisions....iversity of London EA-2015-0269 (12-8-16).PDF

    (See p24 for Professor J. Edwards comment on poor quality of trial, and p36-7 for comment on harassment.)


    MEAction Network statement about FITNET with useful links. http://www.meaction.net/2016/11/02/...bt-in-treatment-for-chronic-fatigue-syndrome/


    Parliamentary questions about ME research and NICE guidelines http://bit.ly/2gyJ0il
     
    Hutan, Inara, Melanie and 16 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Reminds me that I had more energy a year ago than I have now. Sigh!

    Should I send it again, by e-mail and ask why he didn't reply?
     
  4. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Yes just keep resending it and editing the bit underneath saying since my last letters on the x y and z I haven't heard from you... ? Perhaps put one of those nice stamps with a snowman on it and in a coloured envelope?
     
    Hutan, Inara, Melanie and 11 others like this.
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    It seems they were all brought up with the view, attributed to B Jowett, "never retract, never explain, never apologise," or possibly the even more contemptuous "never retract, never explain, get it done and let them howl."

    In any event VC's probably have more time consuming things to do.

    Such as contemplating their emoluments.
     
    Inara, Melanie, Barry and 9 others like this.
  6. Valentijn

    Valentijn Not a moderator

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    You could also post a link to it on twitter and tag Bristol :)
     
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  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Definitely resend. Great letter Trish. Thank you for using your energy on it.
    Could you include a sentence in your covering letter referring to the significant progress by' real scientists' especially in the US over the last year since you sent your letter to him?
     
    AndyPandy, Hutan, Melanie and 9 others like this.
  8. Allele

    Allele Senior Member (Voting Rights)

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    @Trish, I'd resend without asking why you've not had a response. Instead I would do as @Binkie4 suggested and include updated science as your incentive to resend.
     
    AndyPandy, Melanie, Wonko and 6 others like this.
  9. Barry

    Barry Senior Member (Voting Rights)

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    Excellent letter @Trish. I hope that one day future investigations may consider why letters such as yours go completely unacknowledged, let alone not responded to. A pattern of behaviour that seems highly telling in itself.
     
    Inara, MEMarge, chrisb and 7 others like this.
  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks Trish.

    I think that this is right, but that also, it could encourage Brady to dismiss your concerns. One of the many annoying things about all this is that things are so bad, the truth can seem implausible to those in positions of authority!
     
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  11. Trish

    Trish Moderator Staff Member

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    Thanks @Esther12 . That part of the letter was particularly addressed to Prof Brady, because, when I looked up his biography, I saw that he is from Dublin, trained in Medicine there, then spent a large part of his career in the USA in academic medical research posts before returning to Ireland as a Professor. He is relatively new to Bristol Uni, and is not part of the 'British Medical/Political Establishment'. I hoped he might therefore have a more open mind on this.
     
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  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    Ah... yes, that does make it a play more likely to pay off. Good thinking! People from outside the UK can find our Establishment absurd... or be keen to fit in with it. Shame Brady seems to be so poor on Crawley. I think Lewandowsky is at Bristol too, and he's another academic from outside of the UK who seems utterly credulous on all this.
     
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