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)
http://www.biomedcentral.com/imedia/1083914155124266_comment.pdf 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.
Regards,
Tom Kindlon
http://www.hhs.gov/advcomcfs/meetings/index.html
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
priorities.
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