CDC CFS workshops - can people try to find out who they are inviting

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Oct 2, 2009.

  1. QuayMan

    QuayMan Member

    (From Co-Cure)

    I wonder would it be possible for people to send in Freedom of Information
    Act (FOIA) requests to find out who the CDC have been inviting to the
    meetings below. And also with the first one, who attended. I don't live in
    the US so I think it should be done by somebody from there.

    With a management workshop, people are unlikely to change their opinions at
    it: if you support a Graded Exercise Therapy (GET) approach (or CBT based on
    graded exercise therapy), you are unlikely to change your mind (people like
    Peter White are unlikely to "budge an inch" I think). While the Leonard
    Jason et al study in 2007 found that a programme based around pacing of
    activity did better than the exercise arm and the CBT arm of the trial.
    Also in another paper, the envelope theory was found to be useful. These
    are different approaches. Ellen Goudsmit has published papers and a trial
    on pacing.

    So it's very important to see who is being invited to the workshops.
    We may be able to influence who attends at future meetings organised by the
    CDC if enough fuss is made about say the management workshop.

    We have seen that Peter White, when he was a peer reviewer, criticised the
    empirical definition (Reeves, 2005) but then he
    signed the 4-man external review of the CDC program which actually praised
    the empirical definition (Reeves, 2005). So at the workshop on the
    definition we need people who are willing to challenge the empirical
    definition (Reeves, 2005).

    If this could be done before the CFSAC meeting at the end of October, it'd
    be great.

    If not, if the CFSAC members could ask for this information, it'd be great.

    But the best situation is if people have the names in advance and it can be
    circulated in advance of this meeting where the CDC's 5-year plan will be
    presented. In the last 8 years, the only person from the UK the CDC has
    been inviting has been Peter White who is not representative of all opinions
    there. Similarly Gijs Bleijenberg from the Netherlands.


    Tom Kindlon

    Comments from Bill Reeves at CFSAC May 2009 meeting

    Workshops and International Research Networks

    - International Workshop - Clinical Management of CFS. I haven't sent the
    emails yet, but we're hoping to do it by September or October. Comments from this
    committee discussing such a workshop would be appreciated.

    - International Workshop - Research, Clinical, and Pediatric Definitions of
    CFS - I would like to try to get together by the winter of 2009. I know the IACFS/ME
    is interested in this. We want to include countries such as UK that have CFS
    care completely integrated into their healthcare system.

    - International CFS Study Group - Identify Research Priorities. We need
    people from countries that have successfully done it to help identify research
  2. LindaJones

    LindaJones New Member

    each cfs patient should be evaluated on an individual basis
    physical therapy can help in some cases
    the physical therapist must be specially trained to help people with cfs
  3. QuayMan

    QuayMan Member

    Perhaps physical therapy can help some patients with ME/CFS to an extent (I think they're more helpful for Fibromyalgia but this thread is supposed to be about CFS or ME/CFS, not Fibromyalgia).

    But what is offered in some countries is only Graded Exercise Therapy and CBT based on GET.

    This is also used to deny people other supports e.g. disability payments, wheelchairs, parking badges, etc - people such as Peter White and Gijs Bleijenberg say these can get in the way of people sticking to their rehabilitation.

    These treatments are hyped so that doctors feel that is all people require.

    Also drug companies don't become interested because they feel that it's hard for their treatments to compete with exercise which is good for everyone.

    If people have followed what has happened in the UK, for example, they should know the problems of what will happen if management guidelines just recommend GET and CBT based on GET.
  4. QuayMan

    QuayMan Member

  5. QuayMan

    QuayMan Member