Wednesday, October 28, 2009

Special Thanks to MAME

October 27, 2009

Mothers against Myalgic Encephalomyelitis (MAME) Issues Reminder of
Forthcoming Meeting of the Chronic Fatigue Syndrome Advisory Committee now
Accessible to People with CFS
(Salem, MA)  MAME wants to remind those interested that the Chronic Fatigue
Syndrome Advisory Committee¹s (CFSAC) next meeting on October 29, 2009 will
be videocast for simultaneous viewing on the Internet at 9AM EDT by
connecting to   This, the second such simulcast,
comes as the result of MAME¹s five year campaign to enable people with CFS
(PWC¹s) to observe the exchange of information between the CFSAC, assembled
experts and advocates.  Many PWC¹s are physically unable to attend these
meetings because of inability to travel to Washington D.C., let alone attend
two consecutive days of meetings.  The videocast enables them to view the
meetings either in real time or in archived segments, as their illness
allows.  PWC¹s can then communicate with the CFSAC immediately, if need be,
to corroborate, correct misinformation and challenge assertions.  In the
past, PWC¹s were obliged to await the release of CFSAC meeting minutes, some
of which were distributed months later.  Too often, comments or questions
from PWC¹s were given little attention particularly due to the passage of
time and the CFSAC¹s sense of more pressing current business. That changes
with videocasts.

MAME¹s formal campaign for access began as request for accommodation under
Section 504 of the Disability Act of 1973, initiated in June 2004.  MAME
asked for videotaping of the meetings for transmittal by DVD or
videostreaming, which the National Institutes of Health already did for
other committees at the time.  The CFSAC, concerned about privacy and cost,
rejected this.

MAME then filed a formal complaint in December 2004 with the US Office of
Civil Rights (OCR) which enforces Section 504.  OCR took over one year to
act on the complaint which it dismissed, prompting MAME¹s rebuttal of OCR¹s
action.  OCR must respond to such rebuttals within 180 days.  However, OCR
failed to respond in spite of MAME¹s repeated telephone inquiries.  MAME
pursued other alternatives including political organizing and raising funds
to retain counsel to sue OCR. These actions consumed time and effort on the
part of MAME as well as other Disability Rights advocates such as Wisconsin
CFS Association, PANDORA, Florida-based CFS advocates, and VT- CFIDS, who
coordinated ³empty seat² projects.  Still, near the end of 2008 there was no
OCR response, clearly a violation of PWC¹s civil rights.

In November 2008 Dr. Wanda K. Jones, Deputy Assistant Secretary for Health
in the US Department of Health and Human Services, and head of the Office of
Women¹s Health (OWH), became the designated federal officer  for CFSAC.
Moving CFSAC to OWH improved the logistical and technical support for the
CFSAC¹s work.  MAME saw immediate results when contacting Dr. Jones in April
2009 to share MAME¹s 2004 request to the CFSAC.  She saw the legitimacy
under Section 504. Within days, she arranged to videocast the May 28-29
meetings of the CFSAC.  That videocast is now archived on the NIH website
enabling PWC¹s worldwide to view it and subsequent meetings, and offer
timely comments, suggestions, and resources.  For this reason, MAME
encourages PWC¹s and others to take advantage of the forthcoming videocast
on October 29, 2009 at 9AM (EDT).  MAME¹s President, Jean Harrison, ³thanked
Dr. Jones for breaking the logjam² allowing a significant victory for people
with disabling medical conditions, who seek to participate in the
proceedings of committees charged by the Federal Government to investigate
and take steps to address their medical conditions.   This, along with the
exciting research at the Whittemore Peterson Institute provides PWC¹s with
welcome inspiration.



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