1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 27th January 2025 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue, 2019, Antcliff et al

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Tom Kindlon, Aug 21, 2019.

Page 3 of 3
  1. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    316
    @Michiel Tack my mistake - I thought there was an online comments section - thanks
     
    PhysiosforME, Oct 5, 2019
    #41
    Amw66 and Andy like this.
  2. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    316
    Sadly the response we received was not encouraging! We have written back pointing out the error of their ways again (more forcibly this time)

    Just a heads up - in their reply they told us that they have completed the consensus meeting to refine the framework (we tried to invite ourselves) and the "associated research paper is being processed for publication" so there will be something else for us to try and comment on soon!

    We also received the same "we don't accept letters" response from the journal!!!!!!!!!!!
     
    PhysiosforME, Nov 18, 2019
    #42
    alktipping, MEMarge, Michelle and 16 others like this.
  3. Trish

    Trish Moderator Staff Member

    Messages:
    57,178
    Location:
    UK
    Thank you so much for trying.
     
    Trish, Nov 18, 2019
    #43
    alktipping, MEMarge, Michelle and 13 others like this.
  4. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    316
    We can only try! We are also thinking about how best to challenge it a bit more publicly if they don't respond to our follow up email
     
    PhysiosforME, Nov 19, 2019
    #44
    ladycatlover, alktipping, MEMarge and 12 others like this.
  5. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,897
    Do we know how much ME knowledge the exercise specialists at Nottingham (? Currently got funding for ME related research) have and whether they would be in a position to provide a quote?
     
    Amw66, Nov 19, 2019
    #45
    ladycatlover, alktipping, Andy and 3 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,468
    Location:
    UK West Midlands
    They have been brought in by OMF because of their exercise expertise. Until then they hadn’t had any engagement with ME. They have attended a couple of events they closed session of IIME London and the Boston event. They are on a learning curve - the announcement of their involvement with OMF was only around 12 months ago. I’m not sure they would be in a position to get involved with the debate at this stage. My understanding is they are putting together a proposal
     
    NelliePledge, Nov 20, 2019
    #46
    ladycatlover, alktipping, JemPD and 6 others like this.
  7. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    316
    Are you able to point us in their direction? We'd love to make contact with them
     
    PhysiosforME, Nov 20, 2019
    #47
    ladycatlover and Andy like this.
  8. Andy

    Andy Committee Member

    Messages:
    23,400
    Location:
    Hampshire, UK
    I'll PM you details.
     
    Andy, Nov 20, 2019
    #48
    PhysiosforME, ladycatlover and Amw66 like this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,468
    Location:
    UK West Midlands
    Have done
     
    NelliePledge, Nov 20, 2019
    #49
    PhysiosforME, ladycatlover, Amw66 and 1 other person like this.
Page 3 of 3

Share This Page