Wednesday, December 15, 2010

CFIDS' missed opportunity

Testimony of Association CEO Kim McCleary at 12/14/10 BPAC Meeting

It has long been the Association’s guidance to CFS patients that they not donate blood or organs out of concern for the safety of both the donor and the recipient. Research has demonstrated that orthostatic intolerance, low blood volume and infections with a variety of agents are common in CFS.

While more information may be needed to assess the potential threat posed by MLVs and the prevalence of this family of viruses in CFS patients, there already exists sufficient evidence, in the 5,000 peer-reviewed articles about CFS, to support an FDA policy of indefinite deferral of individuals diagnosed with CFS.

This policy would be consistent with the practice being followed by most of the blood collection centers in the U.S. Based on preliminary data on deferral rates, such a policy is “reasonably achievable without unduly decreasing the availability of this life saving resource,” a policy requirement stated on the FDA web site.

The CFIDS Association of America urges the BPAC to respond affirmatively to the FDA’s question about CFS and we restate our strong support of a policy to indefinitely defer individuals diagnosed with CFS. Read more>>

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