pwME to NIH: People with ME are Being Murdered by Neglect


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.


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16 comments on “pwME to NIH: People with ME are Being Murdered by Neglect
  1. Laurie P says:

    Outstanding!!! Thank you so much Johanna Kaiser. You’re my hero!

  2. Cindy Downey says:

    Thank you so very much Johanna, for so clearly and emphatically expressing the urgency of our situation!
    My thanks seem inadequate to show my appreciation for your bravery in tackling this issue head on.

    Again, NIH needs to be much, much, much more proactive in disseminating the true nature of ME; not wait for research to “kind of exponentially expand”, or hope the sideline benefit from the research centers will be to raise the view of ME (paraphrased). This is the trickle down effect, and can take decades!

    Our plight should be met with equal energy to put things right! NIH had no problem years ago actively disseminating the wrong information about ME. Now, let’s see NIH be proactive and establish a proper standard of care, nationally adopt the CCC as the case definition, and educate those doctors and other health care professionals about the reality of ME! And, engage world renowned experts directly to fund their applications!

    Thanks so very much Johanna, and MEAction for this strong and inspiring message!

  3. J.A. says:

    Thank you Johanna. You drove the point home!! I hope they will substantially increase funding soon. But they make it sound like a numbers game. They want researchers to submit more RFAs to increase the odds of approval, but they could approve the RFAs that they got. It’s ridiculous! Submitting more RFAs doesn’t magically increase the money they have to give out. They need to turn down grants for male patterned baldness & other non-life threatening conditions & “Give ME the money!”

  4. Janet Dafoe says:

    Johanna is a ME/CFS heroine! Ron Davis and I loved her persistence, honesty and pathos! Very effective! We hope they heard. What she said is accurate and she didn’t let them off the hook with their bureaucratic answers. Yes, Ron’s 2 grants were rejected without even a review! And he said on that call that the funding is inadequate and that just his own team could use $10 million per year!

    1. J.A. says:

      They didn’t even review them? That is outrageous! Then they want more submitted to justify approving them. What idiots!

  5. Tricia M says:

    Mind blowing! Thank you for your courage!

  6. Margaret Smith says:

    Thank you so much Johanna for what you said. I know you are in the US but the situation is the same here in the UK, indeed it seems to be so worldwide. Nevertheless what happens with the US research will undoubtedly have an impact worldwide, so we follow it with interest (and a large amount of frustration).

    Am I suffering from brain fog or is the answer easy? Having read through that exchange, it sounds to me as if Dr Koroshetz should be a politician. He didn’t really answer anything directly did he. Surely the answer is stop throwing applications into a huge hat waiting to be drawn. Just make an exception and pass whichever applications to study ME they do get, providing of course they are up to snuff. Which I’m absolutely certain most if not all of them would have been. There – problem solved. And I did that with a foggy brain and no degree in medicine. Or is that too simple a solution for some mindboggling reason?

  7. J.L. says:

    Thank you Johanna.

  8. Cindy Downey says:

    Yes, thank you Margaret, for suggesting NIH make an exception, and fund all ME research applications that are up to snuff!

    This Catch 22 problem does not seem evident to NIH: cut off the research funding, and say there is no evidence ME is real; severely restrict the funding, turn most applicants down, and say researchers are not interested in applying. Why would any sensible person repeatedly submit applications only to have them turned down? NIH has done an excellent job of drying up a lot of the research interest in this field. How can they expect to get many, many more applications by simply opening up a couple meagrely funded research centres?

    I know it’s government, but can’t NIH think outside the box? To get things going ramp up the application acceptance rate! At this speed, I wonder how research goes for other diseases. It must be agonizingly slow as well. Although, while other diseases have at least had research funding and care from the medical establishment, persons with ME have been dismissed and harmed for decades. This should be treated as an exceptional circumstance.

  9. Steve says:

    We ALL MUST voice our outrage. Almost 4 decades of willful neglect! A little tantalizing hope when all the right words are said AND THEN…NOTHING! OVER & OVER & OVER & OVER AGAIN!

    Look ANGRY, speak ANGRY, answer ANGRY… look into their eyes (NIH especially & NHS & other countries’ Health officials… BUT NIH IS MOST IMPORTANT) with a furrowed brow and gritting teeth…THEY NEED TO BE MADE TO FEEL COMPLICIT WOTH THE CRIMES AGAINST HUMANITY! THEY NEED TO FEEL GUILTY!

    DEMAND! THEY HAVE TREATED OUR POLITE AND RESPECTFUL M.E. COMMUNITY LIKE THE IDIOTS THEY THINK WE ARE.
    WE HAVE 4 DECADES OUR “BACKPAY”… THE MONEYS FOR RESEARCH THAT WE SHOULD HAVE GOTTEN… THE SUM WOULD RETROACTIVELY BE IN THE BILLIONS!!

    Just a small percentage taken off of ALL the other illnesses that are funded, including AIDS (we are all existing with the life of an UNTREATED AIDS PATIENT anyways) would more than cover the $100-$250 MILLION WE DESERVE & MUST DEMAND.

    NO MORE SOFT WORDS. WE ARE DYING. SO MANY OF US ARE AFTER 40 YEARS OF CRIMINAL NEGLECT. Don’t simply allow a trite response or platitude suffice – PERSIST UNTIL CONCRETE PROMISES ARE GIVEN WITH DATES. NO MORE ENDLESS TIMELINES!

    WE MUST CHANGE THINGS & NOW. THIS YEAR. PLEASE. FOR THE LOVE OF LIFE, PLEASE LET US ALL CHANGE AND CHANGE OUR SITUATION DRAMATICALLY.

    I AM SO, SO FURIOUS. PLEASE JOIN ME IN DISPLAYING OUR OUTRAGE AND INSISTENCE ON EMERGENCY FUNDING.

    OF COURSE IT CAN GO QUICKLY, IF THEY WISH FOR IT TO!

    Their is something about M.E., that they do not want to have found… I BELIEVE IT HAS TO DO WITH VACCINES WHICH EITHER MADE US SICK RIGHT AFTER INNOCULATION or the Vaccines we received have slowly predisposed us to coming down with M.E. suddenly hard, or more gradually with smaller, sudden worsening. JUST LOOK AT HOW THEY ARE BATTLING THE AUTISTIC COMMUNITY — AND WE HAVE MANY THINGS IN COMMON: SYMPTOM-WISE, MOLECULARLY, MITOCHONDRIAL SCREWUPS AND OTHER BIOMARKERS, NOT TO MENTION THE VISCIOUS ATTACKS AND GIVEN OUR INNABILITY TO BE PRESENT IN MASS DEMONSTRATIONS.

    (WE NEED ALL THE MILDLY TO MODERATELY ILL PEOPLE TO HELP OUT AT PROTESTS… ITS TOO EASY TO IGNORE THE ILLNESS IF YOU CAN LIVE DECENTLY WITH INSURANCE OR WITHOUT… PLEASE, FOR GOODNESS SAKE HELP YOUR FELLOW SERIOUSLY ILL SUFFERERS. WE CAN MARSHAL MANY MORE PEOPLE FOR DEMONSTRATIONS… BRING HEALTHY FRIENDS, THE GAY COMMUNITY HELPED OUT DURING THE BIG PROTESTS, NOT JUST THOSE WITH HIV.
    ONE DAY WHEN YOUR IN DIRE STRAITS YOU’LL DESPERATELY WISH FOR THE SAME! Please help those who, for the grace of God or the luck of the draw, [take your pick] were unfortunate enough to get sicker than you!

    Sincerely,

    A bedridden, very sick Myalgic Encephalomyelitis patient of 25+ years that has seen the same routine of dragging their feet, giving false hope… delays…. then disappointment happen over and over and over again.

    BE ANGRY! DEMAND THE CRIMES AGAINST HUMANITY TO STOP!

  10. Annette Pittari says:

    Joanna, I don’t know how you maintained your energy and resourcefulness through this. Dr. Walter Koroshetz evaded and stepped around your statements. It was infuriating to read. Thank you for putting yourself out there to deal with him.

    Thank you.

  11. Roxanne McCart says:

    It is murder by neglect and therefore the doctors don’t believe us so we get abused and bullied by them as well, I’ve been ill 48 years and am not doing that well. Please get us help….Thanks Johanna…

  12. jeremy bearman says:

    thanks mrs kaiser for this excellent effort
    unfortunately its blatantly clear from what and how koroshevitz said, that they are going to carry on in the same lousy duplicitous fashion that they have evinced to date.

    researchers have become totally discouraged because of so many grant applications being turned down and therefore they give up after a while. and therefore the number of applications go down
    its a sickening lie that the quality of grant applications in this field, is poor or their other bull story that the grant applications were not properly formulated!

    the nih attitude is worse than disgusting, and i really wish that they would have the decency to at least be honest with us and say that they couldnt give a stuff about our ruined lives instead of trying to take credit for really caring about this deeply marginalised patient population.

    i dont know how pastor francis collins can lie with such a straight face about racheting the level of cfs research upwards by several orders of magnitude.

  13. Luke D says:

    Thank you for speaking up for us!

    There are individuals, even prominent ones in the me/cfs community, who seem absolutely ignorant on how to negotiate for real funds for this disease. One of the prominent bloggers on me/cfs wrote an article where he appeared he was trying to be “rational” about what we could expect to receive to expect in funding. This kind of “rational” approach… we use to get x which was a small amount so we can expect to get 10x now… which is still a small amount… gives these people a way out…”this small amount will be accepted by the community and get them off our back”.

    No!!! We all need to be activists and FIGHT for serious.. massive… increases in funding. This is not enough.. should be our mantra. And it can be backed up by the facts and evidence like Ron Davis not getting grants and incredible teams of researches who are not being funded.

    If anyone thinks there is going to be any real progress made on me/cfs on the little funding it is currently getting you need to think again.

    We need to fight!!! When this disease reveives $300 million a year in funding then and only then is any progress going to be made.

    And if we are only $10 million away from a cure and treatments that work… so be it. The NIH can cancel the next year of me/cfs funding and be happy they have solved this disease and saved the economy billions of dollars going forward.

    Anyone thinking currwnt fudning is good enough is delusional and i can only imagine has a fairly mild case of this god forsaken disease… and is irrational.

    1. Janet Dafoe says:

      @LukeD: Yay!! Applause! Fight on! Thank you!

  14. leon tressell says:

    Johanna did a great job of putting this NIH bureaucrat on the spot. The ME community needs to reach out to other communities to help us with our protests. We need to think about peaceful civic disobedience to put pressure on the authorities. Petitions and lobbies can help raise awareness but I do not think they really put any pressure upon the medical establishment/government to do anything.
    Sit down protests in the offices of relevant organisations would be a start.
    Look at the examples of the Suffragettes and the unions. They won advances by taking direct action to force the authorities to give women the vote/improve workers conditions.
    My life is passing me by and I simply cannot wait.

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