As Summer Ends, A Warning to NIH


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 deliberatelypersistently 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

 


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8 comments on “As Summer Ends, A Warning to NIH
  1. Rivka says:

    This is excellent! Every word of this is true. Shame on the NIH. Shame on Francis Collins. Shame on Koroshetz. My friends are dying — and the ones who have not died are living a living death, stuck in their beds and unable to function for decades on end. And I am doing the same. When will the suffering finally be addressed by the very people who are supposed to help us? We are begging for your help, Drs. Collins and Koroshetz. We are begging for our lives. Shame on you for letting this tragic neglect of up to 2.5 million disabled Americans continue for 30 years now.

  2. Toby says:

    Very well said. I couldn’t agree more. I’ve been suffering for 22 years. I second every word in this article.

  3. Lara Henderson says:

    Very well said Adriane! You rock! Its such a blessing to have Jenn, you, Ashley, Ben and SOOOO many of YOU ;I could never name you all!) that have backgrounds in writing, editing, PR kind of talents, filmmakers, advocates and technology literate in our illness community. Such Strength! Look what all YOU have accomplished in such a a short period of time!

    You are ALL rock stars! Screw Iron Man, Super Woman and the Justice League…lol
    HERE ARE YOU REAL LIFE SUPER HEROES!
    I appreciate you ALL so much!
    🦋💜💜💜💜🤗🤗🤗🤗
    🥄🥄🥄🥄🥄🥄🥄🥄🥄

    1. You are so kind, Lara! You’re right; we are superheroes! I’m going to request a cape for Christmas 😉

      But, just to be clear, Johanna Kaiser wrote this important letter to the NIH – not me! I only posted it to our website.

  4. Joanne says:

    I fully agree! It is a desperate situation! I am a caregiver and almost can’t bear to read the sad messages on support sites anymore. We MUST offer more hope to these suffering patients! It is not uncommon to hear of another suicide. Please, read about these people! We can’t keep letting them down! Please!

  5. Laurie P says:

    The two words that continually go through my mind when I read or listen to your activism/advocacy are WOW and THANK YOU! This letter is no different. Wow, Johanna, this is a great letter and thank you so much for writing it and sharing it with us. I’m so sorry that you are so very ill with this horrible disease.

    I think that not only should Dr. Koroshetz and Dr. Collins watch Llewellyn King’s video about very severely ill ME patient Tom Camenzind of San Ramon, California; which everyone did an excellent job on, but that Dr. Nath and Dr. Walitt and the rest of “Team Tired” (see CMRC Conference 2017 day 1 – Dr. Avindra Nath https://www.youtube.com/watch?v=Biv-MkYaBt4 end of video at 26 minutes) should also watch Llewellyn King’s video.

    We are not “tired”, we are desperately ill. It’s unconscionable that they would name their team, “Team Tired” further adding to the stigma and misrepresentation of this disease.

  6. Kathryn Mullins says:

    “Team Tired”??? For real??? Nobody should even be part of a team regarding ME/CFS if that’s what your calling yourselves! It’s disrespectful, demeaning and shameful! Especially coming from people who are supposed to have knowledge of the debilitating, life changing disease of Myalgic Encephalomyelitis.
    I want to remind you of what it’s like to have ME/CFS for over 20 years:

    Constant pain that is not relieved even by narcotics, imagine thousands of hot needles all over your body along with the worst bone ache as if all of your bones are broken or the muscles feel like they’ve been ripped to shreds. Then try getting to the bathroom only 20 feet away!

    Cognitive impairment including memory loss, brain mud (much worse than brain fog), not able to find words or form sentences but knowing that you can’t do those is very frustrating!

    Chronic viruses including but not limited to: EBV, HHV6, PARVO, CYTOMEGALOVIRUS, MYCOPLASMA PNEUMONIAE, KLEBSIELLA
    I’ve had 5 active at one time. I have 3 active now and my Dr advised that I should stay on the antiviral the rest of my life.

    Immune system deregulation so it’s not being helpful because it doesn’t know what to attack

    LOW NATURAL KILLER CELLS

    Extreme unrelenting EXHAUSTION:
    only able to walk to the bathroom by leaning on the walls or crawling, eyes too fatigued to read, arms too weak to hold a bowl of food

    POTS or OI: not being able to stand for any length of time. Not even able to sit in upright position without feeling like your going to either pass out or you HAVE to lay down NOW

    There’s more I could add but I’m just “too tired” to go on because this has taken me over 2 hours to write.

    I will make one more comment though that it is SHAMEFUL and DEGRADING how ME/CFS patients are treated by the government, the medical community, loved ones and friends due to lack of FUNDING, RESEARCH, EDUCATION IN MEDICAL SCHOOLS, which leads to the general population unaware of the magnitude of this “life as you once knew”, devastating, debilitating disease.

    What is so very sad is that you Dr Koroshetz and Dr Collins have the ability to change all of that!
    NO MORE EXCUSES!!!!! MAKE ME/CFS YOUR NUMBER ONE PRIORITY NOW!!!!

  7. Janet Flynt says:

    I think these comments fail to take in the bigger picture of how our government research programs work. I prefer to thank Dr. Koroshetz and Dr. Collins for recognizing this ailment and moving the research forward. They are many illnesses where individuals need help and they are obligated to balance funding among these. I am a patient who has been bedridden, lost her career, almost lost her marriage, and paid a lot out of pocket to try therapies and obtain resources that would help. Coordinated Research done right takes time and requires communication overhead, so I encourage accepting that an answer may be awhile in coming. Throwing lots of money at a problem may or may not achieve an answer. At the same time, I recommend talking to philanthropists who have money and can funnel it into the NIH or other Institutes. Channel angry energies where there is positive leverage instead of into degrading highly intelligent and committed doctors who are working on our behalf. Also, we need enlightened social workers who can help sustain our life so that we get to the doctors, have nutrition, get the self-care we need. If you need to write a letter like this fine, but delete it before you send it! I would prefer to ask what would it take to get more funding?

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