Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

MRC PACE Trial complaint - update on the situation

Discussion in 'General ME/CFS News' started by Daisymay, Dec 23, 2010.

  1. Daisymay

    Daisymay Senior Member

    Messages:
    698
    Likes:
    3,691
    Update on Professor Hooper's MRC PACE trial complaint - response from Mr Willetts office, followed by Professor Hooper/Margaret Williams reply. Permission to repost.

    ..................

     
  2. cigana

    cigana Senior Member

    Messages:
    945
    Likes:
    749
    UK
    Thanks for posting this Dasiymay.

    I wonder if we will know anything different this time next year!
     
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    7
    Europe
    This is an extraordinarily good, eloquent and clear letter outlining the biomedical deficits in ME/CFS and the lack of scientific credibility of the PACE trial as a result.
    Outstanding - thank you.
     
  4. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Great to read - thanks for posting.
     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,047
    Likes:
    582
    Raleigh, NC
    This is may be the most important topic in the PACE trial; who was excluded? and how many were excluded. The Trial should list how how they found potential participants, how many people were interviewed for the trial, how many were excluded and for what reasons. The Trial always should have a had a list of exclusionary factors....did it not have that?

    This has been maybe the key complaint about the PACE trials and CBT studies; that researchers are excluding certain types of patients from the studies....I'm amazed this wasn't dealt with from the beginning.
     
  6. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Quite agree Cort. And of course all those bedbound too ill to go anywhere are automatically excluded so they will not have a true sample in any case.
     
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,047
    Likes:
    582
    Raleigh, NC
    And from just about any other study as well....the Invest in ME/WPI XMRV study is the only one I can think of that tried to include these people. They don't show up in ....immune studies, HPA axis studies, CBT HHV6 studies....they are missing from CFS research as a whole.
     
  8. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    It's unbelieveable. Surely the most sick should be those to investigate - just seems common sense that should reveal more at the height of this illness. Mind you didn't much appreciate my few investigations at the time. But there is more knowledge and better tests now to identify pathologies.
     

See more popular forum discussions.

Share This Page