An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years of my life.
Johanna Kaiser gave a brave testimony about the neglect of people with ME during the February 1, 2017 phone meeting with the NIH in which institute leaders answered questions about the planned ME research centers and data center.
Johanna had strong words for the NIH about the inadequate amount of funding being dedicated to the research centers and about the NIH’s lack of urgent action and ongoing rejection of ME grant applications by world-renowned researchers.
Read more about the NIH meeting here.
You can hear the entire exchange between Johanna and Dr Koroshetz here:
Here are her words:
Johanna Kaiser: Thank you.
First, I want to express my deep gratitude for all that each of you are doing, and I mean this.
I am alarmed by the lack of urgency and the low level of funding that’s been put forth. I know you’ve worked hard on this, but I’ve been a patient for almost 40 years, and that’s 40 years of my life that have been taken from me by, not the disease, but the inaction of NIH. And I don’t think that I and people like me should be further punished by [NIH] plodding along at a snail’s pace.
I personally know two ME patients: one who’s in and out of the hospital constantly, and one who is currently fighting for his life and losing. His mother is a pediatrician, and because Kaiser Hospital doesn’t have any ME expertise – I hope you all realize that there are no more than a dozen ME clinicians for 2.5 million ME patients in all of the United States – his mother has been staying with him at the hospital day and night while he’s dying.
So I understand that you have a responsibility to proceed with care, but the funding level isn’t enough; you have to really change this. It’s barbarous; this is not a humane way to treat people like us, and I urge you to reconsider.
We have been told that you [NIH] need more investigators [to apply for grants]. We’ve been told by investigators how their grant applications have been turned down. These are not third-rate people. These are world-renowned researchers. So patients are caught in between what NIH says, and what these world-renowned Nobel Laureates and members of the National Academy of Sciences are telling us. You’ve really gotta quit this and get moving, because this is murder by neglect! I don’t mean to insult you, but you’ve stolen 40 years of my life from me. And thank you for letting me have this opportunity to speak.
Dr. Walter Koroshetz, Director, National Institute of Neurological Disorders and Stroke (NINDS): Yeah, we all hear the pain there and we feel terrible that we don’t have…
Johanna Kaiser: Well do something, please change it for God’s sake. I can’t go on like this and neither can most of us. You give us words, but not action. And the increase in funding is just a kick in the face. You people are not doing enough.
Most of my family died in the Holocaust. They wanted to come to America. If they saw what happened to me they wouldn’t believe it. This is not what America is about. So please, enough with the words, we’ve heard too much; it’s all hollow. You’ve got to up the funding and get moving and save our lives. That’s it.
Dr. Koroshetz: Okay. Yeah, I totally agree, absolutely.
Johanna Kaiser: So will you move with urgency then? I mean, thank you for, really, from my heart, thank you for saying that. Can we expect, then, a change sooner rather than later, because we’re dying? I really do appreciate what you’re saying. Will that translate into urgent action in the near term? I’m desperate.
Dr. Koroshetz: I’m hoping yes, that’s our plan, that’s what the Center program is trying to do, and…
Johanna Kaiser: But that’s five years. I’m not going to make it five years. I’ve had this for forty years. I can’t go another five years at this pace. This is my point.
Dr. Koroshetz: Well we need to know answers, we need more answers, absolutely.
Johanna Kaiser: But you’ve got to fund the people like Ron Davis, the Lipkins, the Solve ME/CFS Initiative that was just… their grant application was just rejected. You know, NIH says one thing and does another, and we want you to know that we’re seeing it. Words aren’t enough; the actions have to change. The money has to change. You know, people are committing suicide, and you guys are going at a snail’s pace. I don’t know how else to make it clear. But you’re being stubborn and letting our lives burn to the ground.
Dr. Koroshetz: It’s certainly not our intent here…
Johanna Kaiser: But that’s the result. And you must acknowledge reality.
Dr. Koroshetz: We’re very knowledgeable about reality. The question is, Where are the answers? And that’s sometimes not so easy to get to.
(Dr. Koroshetz pivots from NIH’s lack of urgency and consistently low funding to “answers.” He also appears to refer to the notion of reality from NINDS’ perspective but not from the perspectives of people with ME, family members and caregivers, clinicians and ME researchers.)
Johanna Kaiser: But you’re not funding the people who want to research this. Good people.
Dr. Koroshetz: Let me just explain this. So the NIH – most of the funding comes in because people write grants, not RFAs, so most of our funding goes out, not in RFAs, but in people sending grants
Johanna Kaiser: And they’re being denied.
Dr. Koroshetz: Let me just finish… so the competition at NIH, because of the funding situation, is such that only 12% of the grants get funded. So that means 88% get rejected. We get about 10 ME/CFS grants a year. So even with those numbers that’s one grant a year. What we need to do is to get 100 times more people interested in working on ME/CFS and that’s what the program that we’re putting out is trying to do.
I wish that I could move things faster and I will do anything I can to do that if I can see an opportunity there.
Johanna Kaiser: But NIH did this for AIDS; and grant [applications] from people like Ron Davis… Norway is making more progress than the United States is. So grant [applications] from people like Ron Davis are being turned down and then we’re being told that low quality grants are being submitted – we just don’t buy it.
Dr. Koroshetz: We don’t say “low quality grants”… lots of high quality grants don’t get funded.
Johanna Kaiser: Oh, in the CFSAC meeting in [August 18] 2015, that’s what we were told. I can’t remember her last name – Susan something. She actually said that; the audience was incredulous. [Note: the speaker at CFSAC was Cheryl Kitt, PhD, Deputy Director of NIH’s Center for Scientific Review].
Dr. Koroshetz: Well we are trying to turn things around. I hope this program will get some really, really strong research going that will just kind of exponentially expand.
Johanna Kaiser: How do we survive these next five years, then – the patients who are so desperately ill?
Dr. Koroshetz: I think just like in medicine we are stuck with always trying to do the best for patients with what’s known, but knowing that we need to know more, and I think that’s the problem with ME/CFS and with many different diseases, unfortunately. It’s quite sad.
Johanna Kaiser: But – our disease has a larger patient population than almost any other, so there really isn’t a comparison. And what was done for AIDS is not being done for us. There was an urgency there – eventually. It didn’t take thirty years – thirty plus years – like it is for us. There are things that should happen that aren’t. Thank you.
Dr. Koroshetz: I agree with you. Thank you very much.
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