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.
HHS and its leaders have robbed me and more than a million other Americans with ME of our lives, our independence, our livelihood, our passions, our human connections, and our dignity.  Did you have a chance to read talented writer and former body-builder Jamison Hill’s heart-rending article in the New York Times last month? He shared that he has been sick with ME for the past eight years, the last three of which have rendered him bedridden, mostly unable to speak and unable to eat solid food. He wrote,
I, on the other hand, have to do everything in bed — brush my teeth, bathe and use the ‘bathroom’ — a plastic bag for bowel movements and, for urinating, a dubious-looking plastic container attached to a tube feeding into a bucket on the floor.
This is so painful to read. I don’t share Jamison’s words to shock you, but rather to help you better understand the everyday lives of so many people with ME – and why we require urgent action, urgent funding increases, urgent medical education, and more.
Dr. Collins, your negative bias and hard-heartedness continue to condemn hundreds of thousands of Americans to a mostly – or fully – bed-bound life… How can you not see what your refusal to equitably fund ME research has been doing to us? So many of our lives – and the lives of our caregivers – are a living hell.
The Centers grants are far too low. Brilliant researchers who have received hundreds of millions of dollars in NIH funding in other disease areas have been repeatedly denied NIH funding to study ME.  You can increase funding for ME research, but so far, you have refused.  You have been ME’s judge and jury, and our prison guard and executioner. Your bias against ME condemns us to this living death year after year. Your actions have demonstrated that you neither respect – nor value – the lives of more than a million Americans who struggle to survive ME’s – and NIH’s – horrors.
This cannot go on, Dr. Collins, CDC, and HHS. You must act with urgency. You must end the cruel abandonment of, at the very least, your moral and ethical responsibilities to this large population of desperately ill Americans. There are no excuses or justifications.

  • The ME community requires that researchers use a consensus-driven research case definition, which was called for in a federal report. Common data elements are a different animal and aren’t enough. We all heard NIH’s own Dr. Avi Nath publicly comment on this subject when he said, “Garbage in, garbage out.” We agree.
  • The ME community requires concrete, well-coordinated, milestone-driven plans from NIH and from CDC to proactively and aggressively reverse the stigma and the false, but dominant narratives in the medical community.
  • Despite Dr. Collins’s pronouncement two months ago that, “Research, done correctly, takes time,” the ME community knows – far too well – that ME research requires equitable NIH funding.
  • Having lived with ME and its related medical abuse for the past forty years – after all, I and thousands of others have been writing to you about this for years while attempting to survive this man-made catastrophe, how much more time must it take for ME research to be done correctly? Why isn’t forty years enough time for research to be done correctly, Dr. Collins?
  • Without adequate and equitable funding, progress on ME simply cannot be made. Answers cannot be attained. NIH has proven this beyond a shadow of a doubt. Lying by omission is still lying. So please, Dr. Collins, stop lying to us. Lying is beneath the office that you hold. And not one of the million-plus Americans with ME deserves to be lied to by the Director of the NIH. That is a level of disrespect that will never be acceptable.

We don’t deserve to live or die like this, Dr. Collins. Give people with ME a chance; what do you say?
– Anonymous person with ME
#MEAction serves as a non-voting liaison on CFSAC. If you are interested in getting involved with #MEAction’s work at CFSAC, please fill out the volunteer form, or email [email protected]

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