MEAction: Testimonies to June 2018 CFSAC meeting

Andy · Jun 27, 2018

Mother Shares Heartbreaking Testimony about Sons with Severe ME

This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated their lives.

The Chronic Fatigue Syndrome Advisory Committee – CFSAC – 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.
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https://www.meaction.net/2018/06/25/mother-shares-heartbreaking-testimony-about-sons-with-severe-me/

Andy · Jun 27, 2018

NIH Director: Our Judge and Jury, Prison Guard and Executioner

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.
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https://www.meaction.net/2018/06/26/nih-director-our-judge-and-jury-prison-guard-and-executioner/

Tom Kindlon · Jul 21, 2018

https://twitter.com/user/status/1020699295639629825

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MEAction: Testimonies to June 2018 CFSAC meeting

Andy Committee Member

Andy Committee Member

Tom Kindlon Senior Member (Voting Rights)

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MEAction: Testimonies to June 2018 CFSAC meeting

Andy Committee Member

Andy Committee Member

Tom Kindlon Senior Member (Voting Rights)

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