Johanna Kaiser, a person who has had ME for decades, sent this open letter over Labor Day to Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS) and Dr. Francis Collins, director of National Institutes of Health (NIH). Staff member Adriane Tillman only posted the article. 

Dear Dr. Walter Koroshetz and Dr. Francis Collins:

While you each are enjoying the Labor Day holiday this year, please remember the estimated 836,000 to 2.5 million Americans with Myalgic Encephalomyelitis (ME) who you continue to condemn to a living death by deliberately, persistently and severely under-funding extramural ME research.

We are certainly thinking of you, and how NIH’s obscenely low funding and refusal to fast-track ME research extends our decades-long and inhumane suffering.

Dr. Koroshetz, you continually admit – in public, and on video here and here – that NIH funding for ME research isn’t enough.  Jennie Spotila wrote quite accurately about this in Part Two of her blog.

More than that, you couldn’t even describe the horrors of the disease with any accuracy during the June 9, 2017 meeting of the Advisory Committee to the NIH Director; You said,

“…where people are completely disabled for decades because of this terrible fatigue and inability to exercise.”  (emphasis added)

The ME community was shocked that as Chair of the Trans-NIH ME/CFS Working Group, your description of ME was so inaccurate and trivializing; you made it sound as though we could no longer go to the gym!  For your information, I can no longer shower, brush my teeth, or care for myself; my cognitive function and memory are significantly impaired and I can no longer read anything longer than a few paragraphs. I have lost my autonomy and independence, my ability to work and earn an income; I am unable to sustain relationships and even have conversations on most days. Without one medication to treat ME, I lie here rotting in my bed day after day, year after year while you dither and distort the truth about NIH’s handling of ME.

People with ME that include Whitney Dafoe and Tom Camenzind, among many others, cannot even eat or speak; they are fully bed-bound and are near-comatose. “Inability to exercise” is an outrage, Dr. Koroshetz.  With “friends” like you, who needs enemies?

If you are unable to accurately describe what ME does to human beings, I suggest that you ask someone knowledgeable to write this out for you and read that description aloud – instead of trivializing ME as you did with your ignorant statement in the June 9, 2017 meeting. You are the director of an NIH institute; you owe it to the ME community to do better.  There is no excuse for your shameful and irresponsible failure in this regard.

2: Multiple ME researchers have told you that the Center grants are too small to accomplish what needs to be done, yet you remain indifferent and immovable. From the June 9, 2017 meeting of the Advisory Committee to the NIH Director:

Ian Lipkin, MD, Columbia University and member, NIH Advisory Committee to the Director:  “It amounts to, by the time you’re done with kicking in for various things it’s about $800,000 a Center. Per year. In direct costs. And if you involve many organizations there’s very little to do with science. Is there any chance that that might be increased?”

 

Walter Koroshetz, MD, Chair, Trans-NIH ME/CFS Working Group:  “…I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across.”

 

Lipkin: “…But $800,000 for a center, is… it’s a challenge.”

 

Koroshetz: “This program is about $6 million a year. That’s how much we have.”

 

[Comment: Dr. Koroshetz, as Chair of the Trans-NIH ME/CFS Working Group, $6 million a year is all that YOU made available. It’s not just that it’s all that NIH has. This was your choice. Realistically, no other institute or office was going to give more than the paltry sum you committed from NINDS.] 

 

Lipkin: “I understand that, but if you do the math on that – these are getting very granular – but you’ve gotta kick in $300,000 for some cross-center project …and have to have an admin core, and by the time you remove that and the IC and everything else it’s about $800,000 a year in direct costs which, you split across say, three or four institutions, that’s less than, it’s far less than a R-01 for each of the investigators.  I just… it’s a problem.”

 

Koroshetz: “No one ever comes to me and said they gave me too much money (laughs).”

 

[Comment: Yours was a flip response to Lipkin’s legitimate feedback on the low RFA amounts. You were the only person who laughed, Dr. Koroshetz. Making jokes at the expense of the millions of severely ill people with ME spoke volumes about how out-of-touch you are with the magnitude and severity of this public health and human rights crisis.] 

 

Koroshetz: “But I think you’re right, we’ve gotta move this field it’s gonna take a lot more money. The budget’s gonna have to be ten or twenty times what it is now.”

Just a month later during the July 10, 2017 NIH ME/CFS Advocacy Call you said, 

“We totally agree that the amount of funding for ME/CFS research is not even close to the burden of illness… ME/CFS certainly is in a condition where really big changes are needed.”

As Jennie Spotila so insightfully pointed out in her blog,

“This is a remarkable statement. I don’t think we have ever heard such a public and specific admission by NIH that their ME funding is falling so far short of what is needed. From the context of his statements, it appears Dr. Koroshetz means ten to twenty times the present RFA budget of $6 million per year. That translates to $60 to 120 million per year, at least. While still far from commensurate with disease burden, that level of funding would certainly support robust research into pathogenesis and treatments.

The salient point is not, “Hurray, Dr. Koroshetz admits we need $120 million a year.” 

The takeaway message for people with ME is, “Dr. Koroshetz admits NIH needs to do 20 times better, but nothing is changing.” 

I’m trying to think of another context where a leader would say we’re falling twenty times short and then do nothing to try to make up the gap. If a company needs to increase its sales by ten or twenty times, you can bet they do something. If a government had a budget shortfall of that magnitude, you can bet they would raise taxes at the speed of light. And remember that Dr. Koroshetz – who is Chair of the Trans-NIH ME/CFS Working Group – chose to kick in only $2 million per year for the RFAs. This low investment from the Chair was not going to be exceeded by any other Institute, thus guaranteeing the smallness of the RFA.”

Drs. Koroshetz and Collins, if you have the courage, I challenge you to watch Llewellyn King’s video about very severely ill ME patient Tom Camenzind of San Ramon, California.

How do your consciences allow you to continually underfund research on such a savage disease?

Dr. Koroshetz, you have a habit of telling us how sad it is. We know this far better than you, so please stop patronizing the ME community. What we demand is NIH fund ME research commensurate with the burden of the disease now. Fund and fast-track extramural ME research now.   We need appropriately-funded RFAs to understand and study ME. We need RFAs related to the B-cells that are identified in the Rituximab studies and RFAs related to metabolomics. We need RFAs for clinical trials for Rituximab, Suramin, Ampligen, and other potential treatments. 

Today, as I have each day for endless years, I continue to lie here in my bed growing more ill and disabled because of NIH’s leadership’s discrimination against those of us who have this disease. Dr. Koroshetz, you’ve said repeatedly that “we need answers,” but at the same time you refuse to acknowledge that researchers cannot find answers unless you, the Chair of the Trans-NIH ME/CFS Working Group, fund extramural ME research commensurate with the burden of the disease.  Please stop distorting the truth; we all see and hear what you are doing. Stop patronizing us.

How much longer will NIH decision-makers such as yourselves condemn us to this horrific suffering? Do not patronize us by telling us to wait another five years or more for NIH’s underfunded “Centers” program; that is too long for us to wait. People are dying because of your professional failures and personal capacity for cruelty. Your choices drive the continued suffering of millions of Americans.

What will it take for you to make the necessary changes this year? When will you begin fast-tracking ME research and issuing desperately needed RFAs? When will you begin funding extramural ME research commensurate with the burden of the disease? The world is watching you and noting your choices, Dr. Koroshetz and Dr. Collins. What changes will you make in the near term?

– Johanna Kaiser