Monday, October 26, 2009

Support the 500 Professionals of the IACFS/ME – Reeves Must Go


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 slowly strangled.

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 like CFS.”

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 alternative.

Reeves must go.

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