Support the 500 Professionals of the IACFS/ME =96 Reeves Must Go
On May 27th and May 28th, 2009, the Chronic Fatigue Syndrome Advisory=20
Committee (CFSAC) convened in Washington, D.C. Among their =
recommendations=20
to the Secretary of Health and Human Services was a call for new and=20
progressive leadership at the CDC=92s ME/CFS research division.
We, the public, need to back the IACFS/ME and the CFSAC. Under Bill =
Reeves=92=20
regime, funding has routinely decreased and increasingly broad =
definitions=20
which have ceased to have any clinical meaning or research value have =
been=20
implemented. Under Reeves=92 direction the CFS program is being slowly=20
strangled.
A couple of weeks ago, Dr. Judy Mikovits, who is a retrovirus expert at =
the=20
Whittemore Peterson Institute, released the results of a study which=20
provided overwhelming evidence that xenotropic murine leukemia =
virus-related=20
virus, or XMRV, could very well be the third human retrovirus. Mikovits =
found that in a study of 101 CFS patients, 67% were found to have XMRV =
in=20
their cells, but this is really not new news. In 1991 Dr. Elaine =
Defreitas=20
found retroviral DNA in 80% of her study=92s 30 CFS patients. The CDC=20
=93replicated=94 her study, did not follow her exact procedure, and =
ended the=20
study prematurely while ostracizing Defreitas.
What does Reeves say about Mikovits recent discovery? Without doing any =
study or due diligence Reeves dismisses the findings by saying that they =
are=20
=93unexpected and surprising=94 and that it is =93almost unheard of to =
find an=20
association of this magnitude between an infectious agent and a =
well-defined=20
chronic disease, much less an illness like CFS.=94
Incompetence has increasingly become the order of the day. The money =
that CDC has received and allocated for CFS under Bill Reeves has been =
terribly mismanaged and biomedical research has stalled as a result. =
Inappropriate management of funds prevents collaboration with biomedical =
experts, and has instead been used to collaborate with psychiatrists =
who are trying to build a career in psychosomatic medicine. Reeves must =
be held accountable.
Inaccurate stereotypes persist because Bill Reeves has not been =
accurately=20
educating the public on the seriousness of this disease. CFS is not a=20
disease of =93feeling a little tired,=94 no matter what you call it; =
this is a=20
severe neuroimmune disease of among other things, debilitating =
exhaustion=20
completely out of proportion to exertion. Patients may be too exhausted =
to=20
even be able to chew their food, leave their beds and much less even =
work =96=20
and remain so year after year. Is that your neighbor=92s experience of =
tired?
Perhaps you suffer from CFS, perhaps your patients do, or perhaps a =
loved=20
one does; your best interests are not and have not been at the heart of =
the=20
CDC=92s program. Under Reeve's leadership, very little has been done to =
combat and track this horrible disease.
We need you now more than ever. Right now is the first real chance that =
we=20
have had in nearly 30 years to fight Reeves in force; to fight for you, =
your=20
loved ones, or your patients. Everyone from researchers to advocates =
are in=20
agreement =96 Reeves must go. And we must make it happen. No one will =
do it=20
for us.
Join members of the IACFS/ME at the CFSAC=92s October 29-30th meeting in =
Washington, D.C. Do not let the hard work of other advocates and=20
researchers over the years be for nothing. We need to show that we =
cannot=20
be silenced and we will never give up.
If you cannot personally attend, find someone to attend in your place. =
Ask=20
your parents, your children, your spouses or friends to attend in your=20
place. Ask your elected officials to have aids attend. The answer is=20
always no if you don=92t ask =96 we must make it happen =96 none of us =
can live=20
with the alternative. Reeves must go.
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