First Do No Harm — My Statement To The Chronic Fatigue Syndrome Advisory Committee in Washington, D.C.

I will not be invisible anymore. Chronic Fatigue Syndrome has taken a lot from me, but I still have my voice, and I will be heard. With my voice I hope to help bring awareness and visibility to a disease that has been misunderstood and ignored for too long.

On May 16th and 17th the Chronic Fatigue Syndrome Advisory Committee will meet in Washington, D.C. where a dedicated group of top CFS experts and advocates – will report on the latest research findings and patient needs, and submit budget allocation recommendations to the Secretary of HHS.

I was hoping to attend this meeting and give a five minute statement to the committee, as both a patient and an advocate of this disease. Unfortunately, for a variety of reasons I will be unable to attend. However, the committee has agreed to enter my statement into the record, and for this I am very grateful.

The following is my statement…