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Subject: Urgent: November CFSAC concerns
Hi, all,
It has come to my attention and was confirmed today that the CFSAC
arrangements next month are concerning for a number of reasons, some
of which seem to indicate that the government is once again
marginalizing people with CFS:
a. The meeting was moved from a government building off-site to the
Capitol Holiday Inn. It is not clear why this is being done. One
thought is that the gov't is afraid of protesters (go Rivka!) and
changed venue partly because of this. I know some folks are talking
about demonstrating at this meeting too.
b. The meeting will not be broadcasted live on-line like it has the
last 2 years. Again, it is not clear why it will not be. Instead it
sounds like audio will be available only with possibly video
available later on. Certainly, this cannot be for lack of viewship --
I have somewhere in my old notes that several hundred people watched
it live -- 700+ at least for the May meeting. This is a huge increase
as before the videocasts, I understand, less than 100 people usually
attended the meetings in person and the majority of CFS patients
could not attend due to health or financial reasons. It should be
noted that many, many NIH and DHHS meetings are videocasted live and
probably with a lower number of people watching. The number of
testimonies has also gone up over time and I believe this is partly
due to patients better understanding what CFSAC is.
c. People who have not presented at the meeting before will be given
priority to present. Although this is done prima facie for fairness,
it might also mean that people who are knowledgeable/ experienced
about CFS and the gov't's history of dealing with it might be shut
out from testifying. Does this apply to reps from groups like IACFS/
ME, PANDORA, CFIDS Association of America, or can different reps from
these groups still testify?
I believe these are concerns that advocacy groups, patients, and
their carers should be aware of so they can consider writing or
calling the government representatives and questioning them about it
directly AND SOON since the meeting is coming up.
Dr. Nancy Lee is the new designated federal official and her e-mail
is: Nancy.Lee@hhs.gov.
http://www.womenshealth.gov/about-us/who-we-are/national-staff/nancy-lee.cfm
Dr. Howard Koh is the rep for the Secretary of health and contact info is at:
http://www.hhs.gov/open/contacts/ophs.html
Finally, in terms of preparation for CFSAC, the CDC website is
currently under review and many I am sending this e-mail to have
participated with the CDC on that. I suggest that we encourage people
writing or testifying at CFSAC to mention what negative impact the
CDC website has had on their lives (e.g. how their docs took the
information, how it might have skew media perception of CFS, etc.)
and how the website could be modified to make the situation better.
Signed,
A concerned patient advocate
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