Scientists and clinicians on the CFS Advisory Committee said that the
CDC needs new leadership. Questions raised about the program's
openness to external ideas and collaborations persist.
The CDC CFS Research Team Accepted Public Comment on its Strategic Plan.
The Meeting Turned Out To Be A Pivotal Moment in the History of CFS.
Find
out why: Click here!
Short Takes
A
Momentous Day: CFSAC Advises the Secretary of Health
and Human Services to Implement Sweeping Changes
The CFS Advisory Committee met on May 27th to May 28th to
discuss the CDC's CFS research program and pediatric care
for CFS. For the first time, the meetings were carried
to an international audience via NIH videocast.
Researchers, scientists, clinicians, and advocates spoke --
and raised questions -- to a worldwide audience.
During the meeting, scientists and clinicians who are
knowledgeable about CFS raised many questions about the
objectivity, reliability and openness of the CFS program at
the CDC. And on the final day, they issued a
bold recommendation, the CDC CFS research program needs new
leadership. Scientists urged Kathleen Sebelius,
current Secretay of the Department of HHS to make the
changes.
An op-ed on the meeting's significance is also available
Opportunity Knocks
People with CFS can urge Dr. Sebelius to implement the
recommendations of the CFS Advisory Committee. I
can think of no other investment of five minutes that could
be more effective advocacy for CFS, at this point.
The CFIDS Association of America has a form to make
providing your input easy:
The CDC stakeholders meeting on April 27th, 2009 was
truly an pivotal event in the history of CFS.
While I am doubtful it may make much difference to the CDC's
5 year plan, the meeting drew a very clear response to the
CDC's efforts against CFS, a response from both
researchers, clinicians and CFS sufferers.
Cort Johnson is putting together a wonderful resource
page about the meeting. You can find that here:
Ryan Baldwin Case
Tumbles Out of the Shadows onto the Governor’s Desk
Occasionally, governors are called upon to address
concerns of national significance, concerns that go beyond
the interest of their respective states. Soon, a
long-developing situation in North Carolina may present such a case. Governor Bev Perdue
recently was sent a letter
that was signed by a number of well-known CFS organizations,
advocates, clinicians, and researchers.
The letter urges the governor to respond to the case of
13 year old Ryan Baldwin, who suffers from CFS. Ryan, according to friends and
family, has been removed from his family. Advocates have asked to meet with Department of Social
Services head Amanda (Mandy) Stone and the Governor Perdue
not only to speak about Ryan’s case, but to also to share
with them information about chronic fatigue syndrome. The
letter can be found here:
Ryan’s case has received a lot of attention in the CFS
community, and we will print the response from both the
governor and Ms. Stone when it becomes available.
Enterovirus
Foundation Takes Flight
Rachel Landphere and Lisa Ross Faust are co-founders of
The Enterovirus Foundation.
The Foundation, which was founded in late 2008, was
established to fund and oversee research into the role that
enteroviruses play in Chronic Fatigue Syndrome (CFS) and
other diseases. Dr John Chia, who published a landmark study
on CFS and enteroviruses last year, is one of many
distinguished researchers who serves on the Foundation’s
board of directors. The Foundation is not limiting its
research to CFS. Research has revealed that enteroviruses
play a role in many illnesses, from heart disorders to
Juvenile Diabetes. You can read more about the foundation's
efforts here:
NIH kicks to the
CDC’s research definition to the Curb
Dr. Eleanor Hanna, who runs the CFS research program at
the National Institutes of Health also spoke at the CFS
Advisory Committee meeting on October 28. Hanna says that
the NIH has no confidence in the CDC’s revised “empirical”
research definition for CFS, and will continue to use the
simply and more-focused 1994 definition. The new CDC definition was created by the
consensus decisions of an appointed International Working
Group. A recent study has highlighted severe problems with
the definition. An article on that study can be read here:
As I reported earlier, a decision was expected from the FDA on Ampligen February
25, 2009. But now that date has changed, according to a press
release by Hemispherx, the biotech firm that manufactures
Ampligen. The drug's decision date has been pushed back to May
25, 2009, or some time thereafter. The press release attributed the change in
dates to a need by the
panel to look at "additional data".
Whittemore Institute
Interview
The Whittemore Institute was established to perform
cutting-edge cancer and CFS research, using genetics to
learn about the role that the immune system and virus’ play
in these diseases. Founder, Annette Whittemore, and
institute director, Dr. Judy Mikovitz, spoke with Sam Shad
of Nevada Newsmakers about exciting developments at the
center. According to Dr. Mikovitz, the center has recently
completed mapping of the genome of 60 patients with CFS.
The video is posted below. Kindest props to Petterblogg
for uploading this to Youtube.
Petterblogg, who I am grateful took
the time and effort to post the videos, has called my
attention to two more videos that relate to the
Whittemore-Peterson Institute. Those interviews
can be found here:
