Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Tribunal was right to order release of PACE data: Prof Jo Edwards

Discussion in 'General ME/CFS News' started by Simon, Aug 27, 2016.

  1. Simon

    Simon

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    Tribunal was right to order release of chronic fatigue trial data - The Conversation (by Professor Jo Edwards)

    After nearly four months deliberation a tribunal has dismissed an appeal.PDF) made by Queen Mary University of London (QMUL) against a requirement to release data from the PACE trial – a trial that investigated treatments for chronic fatigue syndrome. This is an important step towards the increased transparency we need for balanced analysis of clinical trials where the methodology is questionable.
    ...
    Good science doesn’t need protection
    ...
    The core of the dispute appears to be that the QMUL authors feel they are entitled to protect their study from those who might wish to discredit their interpretation. Hopefully, we are moving towards a consensus that there is no such entitlement. If scientific interpretation is poor it deserves no protection. If it is good it needs none.

    ...From my perspective the importance of this decision is in emphasising that everyone has the right to access to scientific data and to express their opinion. Confidentiality of patient identity is essential but should not be used as a smokescreen...

    read the full article
     
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  2. lansbergen

    lansbergen Senior Member

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    yep
     
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  3. aimossy

    aimossy Senior Member

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    Excellent.
     
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  4. Esther12

    Esther12 Senior Member

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    Thanks a lot to @Jonathan Edwards ...

    I bet that when you first joined this forum you didn't expect it to lead to all this.
     
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  5. Sasha

    Sasha Fine, thank you

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    :thumbsup::thumbsup::thumbsup:

    Thank you, @Jonathan Edwards. I agree that

    If scientific interpretation is poor it deserves no protection. If it is good it needs none.

    is great. We should all have it printed on t-shirts!

    Thanks very much for working so hard to help patients. If only the PACE authors hadn't made such hard work necessary.
     
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  6. A.B.

    A.B. Senior Member

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    A good summary.
     
  7. James_B

    James_B

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    Sorry for my bad English but was the suspicion right that patients did not have ME/CFS or was the PACE study right that PACING is good for ME/CFS? :)
     
  8. A.B.

    A.B. Senior Member

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    The walking distance and physical function scores were that of seriously ill patients.

    I vaguely remember that there were problems with the case definition, so the patient sample was probably even more heterogeneous than studies using the CDC case definition. I don't think this matters much in the end. Early criticism of PACE focused on this since it accepted the claim that some patients improved, but that is in doubt now.

    In my opinion the correct interpretation of what's known about PACE is that no treatment was effective. The positive results are false positives due to methodological problems. Pacing seemed to a little bit better than the other interventions in improving fitness, but that observation is based on a graph for which the data wasn't released.

    Once the data is released we will have a clearer picture.

    Edit: the treatments tested were cognitive behavior therapy (a special form, that aims to cure the patient), graded exercise therapy, treatment as usual by the doctor, and adaptive pacing (which is not really pacing since it includes a therapist and sets targets, whereas real pacing is entirely self managed).
     
    Last edited: Aug 27, 2016
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  9. Mary

    Mary Senior Member

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  10. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @James_B

    The issues with the PACE trial--despite the name -- are not really about pacing but about whether the use of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are good treatments for patients with ME.

    If you are interested in knowing more there are many threads. One thread:

    http://forums.phoenixrising.me/inde...he-pace-chronic-fatigue-syndrome-study.40664/

    discusses some of the issues raised.

    Also, some (or all--not sure) of the principal investigators in the PACE trial had conflicts of interest having done work for insurance companies--a conflict they failed to disclose.
     
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  11. msf

    msf Senior Member

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    Prof. Jo Edwards? Did they find a (new) way of crossing Jo Cambridge with Jonathan Edwards?

    Thanks Prof Jo Ed!
     
  12. taniaaust1

    taniaaust1 Senior Member

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