An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome.
*Note, an anonymous person gave this testimony. #MEAction has published it but did not write it.
Good morning.
This month marks the end of my fortieth year trying to survive ME.
That’s forty years of NIH under-funding of ME research. Forty years of no available treatment. Forty years of overwhelming human apathy and negative bias that have robbed me of my right to live. Not to simply be alive, but to live.
I know that you’re not here today, NIH Director Dr. Francis Collins; nevertheless I direct my testimony to you. While we’re testifying about the unimaginable suffering that suffuses our daily lives and the lives of our loved ones, fed by J-tubes and no longer able to speak or eat, caregivers who can only watch as ME-specific medical care and treatments remain non-existent or inaccessible, I cannot help but struggle to understand how you can move so slowly and continue to under-fund ME biomedical research by so many orders of magnitude.
