May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

PACE Trial: Petition for withdrawal.

Discussion in 'Action Alerts and Advocacy' started by twopenneth, Jun 28, 2011.

  1. twopenneth

    twopenneth

    Messages:
    22
    Likes:
    0
  2. Esther12

    Esther12 Senior Member

    Messages:
    8,266
    Likes:
    26,669
    Personally, I don't think it should be withdrawn, I just think that the results need to be talked about more honestly and clearly. The results actually support what many of us have been saying about CBT/GET for CFS, and the way they have been misleadingly over-sold to CFS patients - it's just that the writers of the paper got to spin them however they wanted.
     
  3. alex3619

    alex3619 Senior Member

    Messages:
    12,257
    Likes:
    33,634
    Logan, Queensland, Australia
    I am of two minds over withdrawal. I think it is very bad "science" and so should be in the wastebasket. Against that I think I would rather the data were analyzed again by an independent group, and maybe another group formed from the IACFSME, and those results published on this data. I think the conclusion would be: "CBT and GET are ineffective except for a very small minority who are not typical CFS patients, and the incidence of adverse events is extremely high. CBT and GET should never be considered a primary treatment, and only used on patients who respond extremely well and are happy with the treatment." This would discredit the other CBT/GET research, not just the PACE study.

    However, I am still considering signing the petition. A new analysis should still be possible if the paper is withdrawn.

    Bye
    Alex
     
  4. wdb

    wdb Senior Member

    Messages:
    1,337
    Likes:
    2,745
    London
    I'm by no means a supporter of the PACE trial but I hope I never live to see the day that a scientific paper is withdrawn on the grounds of a public petition against it.
     
  5. alex3619

    alex3619 Senior Member

    Messages:
    12,257
    Likes:
    33,634
    Logan, Queensland, Australia
    Hi wdb, the Lancet paper will never be withdrawn on the basis of any petition - ever. This is not about forcing withdrawal, its about increasing pressure. They are playing politics, not science, with ME/CFS patient's lives, hope and futures. We need to make it clear we do not buy it. However, we need to do so rationally. Being rational does not rule out being passionate about it though, it only makes us more careful. Bye, Alex
     
  6. Jenny

    Jenny Senior Member

    Messages:
    1,340
    Likes:
    421
    London
    I agree Esther.

    Jenny
     
  7. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Difficult one this twopennerth - and in the light of all said I'm inclined to leave as real science exposes their ignorance..
     
  8. wdb

    wdb Senior Member

    Messages:
    1,337
    Likes:
    2,745
    London
    If it's not about withdrawal the choice of words are rather misleading - we the undersigned demand that the authors withdraw the paper with immediate effect
     
  9. alex3619

    alex3619 Senior Member

    Messages:
    12,257
    Likes:
    33,634
    Logan, Queensland, Australia
    Hi wdb, what ever the petition says, whatever we demand, the Lancet will never ever withdraw on our say so, nor the authors. They will spin it as crazy patients. They are NOT the target audience. Policymakers who sit on the fence, politicians who are not aware of controversy, scientists who have not really looked at the issue - they are the targets. Plus of course other patients. No scientific journal will ever bow to patient pressure this way. Nor will scientists, nor certain psychiatrists. Making a demand for withdrawal does not mean we believe they ever will. Its about sending a signal that we cannot except shoddy science, and they are never going to succeed, no matter what.

    In my advocacy I have occasionally made over the top demands. I never expect the agencies to comply, ever. I do hope for two things. The first is that they get a message, PUBLICLY. They can never ever say they were not informed. They are also publicly forced to either ignore us or respond negatively. This is then in the public domain. This leads me to the second point: later on we can use this as evidence of denial, evidence of corruption, evidence of incompetence, or whatever, depending on how they respond. Such a petition is not about winning the battle, its about setting up conditions to win the war.

    For example, I sent an XMRV message last year to every health and shadow health minister in Australia. They are informed. Failure to keep up or act is therefore incompetence as the science changes - this is about long term change, long term politics, not short term gains.

    Bye
    Alex
     

See more popular forum discussions.

Share This Page