***Please distribute far and wide!***
Support the 500 Professionals of
the IACFS/ME - Reeves Must Go
On May 27th and May 28th, 2009, the Chronic
Fatigue Syndrome Advisory Committee (CFSAC)
convened in Washington, D.C. Among their
recommendations to the Secretary of Health and
Human Services was a call for new and progressive
leadership at the CDC's ME/CFS research division.
We, the public, need to back the IACFS/ME and the
CFSAC. Under Bill Reeves' regime, funding has
routinely decreased and increasingly broad
definitions which have ceased to have any clinical
meaning or research value have been implemented.
Under Reeves' direction the CFS program is being
A couple of weeks ago, Dr. Judy Mikovits, who is a
retrovirus expert at the Whittemore Peterson
Institute, released the results of a study which
provided overwhelming evidence that xenotropic
murine leukemia virus-related 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 their cells, but this
is really not new news. In 1991 Dr. Elaine Defreitas
found retroviral DNA in 80% of her study's 30 CFS
patients. The CDC "replicated" her study, did not
follow her exact procedure, and ended the 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 "unexpected and surprising" and that it is
"almost unheard of to find an association of this
magnitude between an infectious agent and a
well-defined chronic disease, much less an illness
Deceit and incompetence have increasingly become
the order of the day. The money that Bill Reeves has
been receiving has been terribly mismanaged as he
desperately strives to forestall the slow but
inevitable pace of biomedical research.
Inappropriate management of funds prevents
collaboration with biomedical experts, as well as
collaboration with psychosocial experts who are not
trying to build a career in psychosomatic medicine.
Bill Reeves must be held accountable.
Inaccurate stereotypes persist because Bill Reeves
has not been accurately educating the public on the
seriousness of this disease.
CFS is not a disease of "feeling a little tired," no
matter what you call it; this is a severe neuro-
immune disease of among other things, debilitating
exhaustion completely out of proportion to exertion.
Patients may be too exhausted to even be able to
chew their food, leave their beds and much less even
work - and remain so year after year. Is that your
neighbor's experience of tired?
Perhaps you suffer from CFS, perhaps your patients
do, or perhaps a loved one does; your best interests
are not and have not been at the heart of the CDC's
program. What's at the heart of the program is job
security for Bill Reeves, his paycheck and
collaboration with his pals - not finding ways to
combat and track this horrible disease.
We need you now more than ever. Right now is the
first real chance that we have had in nearly 30 years
to fight Reeves in force; to fight for you, your loved
ones, or your patients. Everyone from researchers to
advocates are in agreement - Reeves must go. And
we must make it happen. No one will do it for us.
Join members of the IACFS/ME at the CFSAC's
October 29-30th meeting in Washington, D.C. Do not
let the hard work of other advocates and researchers
over the years be for nothing. We need to show that
we cannot be silenced and we will never give up.
If you cannot personally attend, find someone to
attend in your place. Ask your parents, your children,
your spouses or friends to attend in your place. Ask
your elected officials to have aids attend.
The answer is always no if you don't ask - we must
make it happen - none of us can live with the
Reeves must go.