An American who has suffered with ME/CFS for more than 38 years, who is mostly bed-bound, wrote this pointed letter to the National Institute of Health (NIH).
Francis Collins, M.D., is the director of NIH; and Walter Koroshetz, M.D. is the director of the National Institute of Neurological Disorders and Stroke (NINDS) at the NIH.
Dear Dr. Collins and Dr. Koroshetz,
Below is a recent photograph of 23-year-old Tom Camenzind. He is dying of ME/CFS. A few short years ago he was an active young man, a lifelong straight-A student and sophomore in Stanford University’s Computer Sciences program.
Since Tom became ill with ME/CFS in March of 2014, NIH’s deliberate inaction and the absence of any FDA-approved treatment for ME/CFS has rendered Tom completely bedridden. Tom has become so severely ill with untreated ME/CFS that he is now unable to speak, eat, sit up, bathe himself, brush his teeth, read, or even get to the restroom. He cannot tolerate any light or sound. He has not been able to open his eyes for months due to neuroinflammation. As of February 2017, Tom has been hospitalized for more than 36 days with a PICC line and feeding tube.
The recent NIH ME/CFS RFA funding amounts are grossly inadequate: three research grants per year at $1.2 million each is shamefully low. Without adequate NIH investment in research, investigators cannot get to the “answers” to which NIH often refers. This is simple cause and effect: As long as NIH continues to offer grossly inadequate research funding, we will never have answers about and solutions for ME/CFS.
Please do not continue to repeat NIH’s meaningless trope about NIH grant approval rates being at 12%. This is baseless and insulting spin that people with ME, our families, caregivers, researchers and clinicians do not deserve. The ME/CFS community knows that NIH can do more, but has so far refused to do so. NIH refuses to act with urgency after more than thirty years of knowing about this disease, and after calls for urgent action in the 2014 P2P and 2015 NAM/IOM reports.
In the February 1, 2017 NINDS telebriefing Ron Davis, PhD, Director of the Stanford Genome Technology Center and father of very severely ill ME/CFS patient Whitney Dafoe said,
“I’m a little worried about the amount of money being put up at the beginning. I’m pretty confident that I could use ten times that amount of money just in our own group of people that we put together that could very effectively do good research with that amount of money. Of course we’ll do the best we can with the amount that we get.
The photograph below is what NIH murder-by-deliberate-neglect looks like (to borrow the phrase spoken by a commenter in the February 1, 2017 NINDS Telebriefing). Please look at it carefully. What you cannot see is what Tom’s suffering is doing to his brave and loving family. You cannot feel everyone’s suffering and utter despair.
It is not too late for NIH to begin to treat people with ME/CFS with humanity and dignity. So far we still wait for this to even begin. Please – increase funding now before more of us die. End our suffering with appropriate levels of NIH investment in ME/CFS research – commensurate with the burden of the disease. Place ME/CFS in an Institute. Stop giving this community bureaucratic excuses.
I have had ME/CFS for more than 38 years, if not longer. NIH inaction has robbed me of nearly everything. I am home- and mostly bed-bound. If either of you have any humanity at all, my family and I beg you to act with urgency now, not later. Not next year. Not in five years. NIH’s stubborn inaction continues to cost us and our families our lives, and cause our immense suffering and ultimately, our death.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the