Dr. Collins: Transcript of Remarks on April 5, 2019

Dr. Francis Collins addressed the Accelerating Research in ME/CFS meeting for ten minutes this morning. This is my best effort at a transcript of those comments.

Thank you, Walter. I’m really glad to be able to be here for at least a few minutes to address this distinguished group at what I think is a real milestone in our efforts to understand the cause and ultimately define preventions and cures for ME/CFS. I hope you have heard in that brief introduction from Walter, but I’ll tell you myself, how deeply committed I am to trying to find answers in this circumstance.

I get lots of emails from people who are suffering from this condition. They are heart wrenching, oftentimes, in terms of the stories of what people are going through and their sense of frustration at the lack of progress. I was involved in a very significant way ten years ago when it looked as if we might have for the first time a really exciting clue—and even a clue that would lead to treatment—namely, the suggestion that a retrovirus XMRV might in fact be the pathogen involved in many cases. And it was intensely disappointing for everyone involved when that hypothesis ultimately fell apart and left us once again with no answers to understanding why these hundreds of thousands or maybe millions of people are affected with a condition that we understand so poorly and have relatively little to offer in the way of real hopes for cure.

We supported, then, the National Academy of Sciences to conduct that study which reported in February of 2015 a number of really important recommendations about what needed to be done to try to organize a more effective research focus, a clinical care focus. In responding to that, in October of 2015 we did pull together a much more aggressive plan at NIH, convening this Trans-NIH ME/CFS working group, which has been involved lots of scientists from around the 27 Institutes and Centers to work together to try to identify the most effective path we might take. And it did allow us then to ratchet up our funding—not enough I will agree with you—but certainly in a way that has provided the opportunity to fund the centers that we are now seeing at this meeting, producing a lot of very interesting findings in metabolomics, in immunology, in neuroscience. All of these giving us ideas of what may be going on in the circumstance, but probably also underlining that there are different kinds of ME/CFS and if we really want to understand this disorder, just like any other condition we need to understand the subsets that may have different pathogenesis and therefore be susceptible to different interventions.

We are doing that with virtually every other disease right now. I’m on the way to a meeting in New York to talk about how we might do this for schizophrenia and Parkinson’s Disease: identify subsets that have different kinds of molecular basis. We’re doing that with Alzheimer’s Disease. We do that with diabetes. We do that with heart disease. We need to do that here as well to really understand what is going on with a large number of individuals who have somewhat different presentations and it seems also potentially different causes, once we begin to get that data.

So I’m excited about what I see being presented at this meeting. It does seem to me like this really is a milestone where some very bright, capable groups have turned some of the latest technologies to work on this: the single cell biology efforts to look at the immune system; new and more specific ways to understand metabolomics—which are yielding all kinds of clues that suggest things such as maybe this really is a mitochondrial disorder which we need to understand even better.

I was particularly delighted that as part of this meeting on Wednesday there was a meeting of early-stage investigators and mid-career investigators who are just getting into this field. Because clearly if we want to make progress, we need to see that kind of recruitment of new people with new perspectives, new ideas, bring their talents to this circumstance. If history is any guide it will often be the person who didn’t know a lot about the condition, but brought a particular insight to it, that results in some kind of a new breakthrough that everybody else can then jump on and move forward. And so getting that new talent into this space is a critical part of NIH’s agenda.

We have done what we can in terms of the resources, both intramurally and extramurally. Right after I finish speaking, you will hear about the intramural program right here in this building that is aiming to try to understand in a very detailed characterization way—admittedly with a small number of patients because the program is so intense—to see what we could learn by looking at every possible feature of individuals with ME/CFS. And that will add, I think, also to our body of knowledge.

But I come to you today basically to say that we are listening closely to all of this scientific advance, and certainly to the cries of help from the community. We do want to see coming out of this some new ideas that could result in further NIH investments. We don’t know what they’re going to be, but one of the reasons to hold this gathering was to have all in one place the kind of presentations that would help our Working Group identify what those next opportunities might be, that they can then bring forward ideas about new projects, new kinds of funding, present those to all of the Institute directors to see what we can do in this space. And that will have my strong personal support, because I think we are starting to see now the kind of moment that has been needed in ME/CFS and we don’t want to wait a minute if we can see a way to accelerate that progress.

This is a very tough problem. You all know that better than I do. And it has obviously not been one where the answers come easily or we would have them already. But with the talent of the scientists now engaged in this, and all of you in this room are part of that community, I am more optimistic than I could have been a couple of years ago: that we may ultimately sort this out, find out what the causes are, and figure out the interventions that are so desperately needed.

I know that we have in this particularly community at NIH often not seemed to be as responsive as you would like, and I regret that. But we are a part of a family now. We don’t always agree with each other, but it does feel to me like we’ve come together in a fashion that was needed to address these issues collectively. You should keep pushing us—and I know you will—and we will keep doing what we can to try to find the resources and the talents and the capabilities to move this forward. And you know when we pull this kind of a gathering together again, and we will aim to do that on a regular basis, every time I will hope I will see new faces and new ideas and ultimately very exciting kinds of things that will end up in the front pages of the newspapers: that we finally have come to a place where we understand this condition and we have specific interventions that we know can help people who have waited far too long for that. I know you are impatient. I want to tell you I’m impatient, too.

I wear on my lapel here this little button, which is actually something that got designed back in the dark days of 2013 when we had the government closure for sixteen days. Where this very building had to be emptied out of anybody who was not essential for patient care, and I had to send all the scientists back in the laboratories on this campus home under threat of being criminally prosecuted if they showed up to do experiments. A very dark sixteen days indeed. And I wanted to do something to try to explain to the world why this was a wrong kind of way to try to produce the kind of next insights into medical research that we all needed. I was thinking of black armbands; my wife talked me out of that and said that might be a little extreme. So instead, we decided there had to be some kind of insignia for what NIH is all about. Being a guitar player, I started with a guitar pick. And then it had to have some kind of statement on there, which has now I think caught on a lot of places, basically the statement here is: Hope at NIH. Because we think of the National Institutes of Health also as the National Institutes of Hope. This building you’re in—the Clinical Center—where people come from all over the country, all over the world, because all other options have kind of run out for them is often called the house of hope. We want to be that for ME/CFS.

And yet hope is not something you just sort of throw out there and then walk out of the room. Hope is something that has expectations for actions. Peter Levi wrote this wonderful description of hope which I think of every time I talk about that word: “Hope in every sphere of life is a privilege that attaches to action. No action, no hope.” We want to provide the kind of hope for ME/CFS that is attached to action. That’s what this meeting is about. What follows after this meeting is going to be actions as well. Watch us. Encourage us. Hold us accountable. We want to be part of your family in the best way. Thank you all very much for the chance to say a few words.

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19 Responses to Dr. Collins: Transcript of Remarks on April 5, 2019

  1. Denise says:

    Thank you for transcribing and posting this so promptly.

    Paraphrase
    – history shows us that to make progress with diseases, breakthroughs often come from the insight of folks new to studying the disease.
    – this is a tough disease – you all know that. Answers haven’t come easily. More funding is needed.
    – hope has expectations of action.

    The usual ways of doing things haven’t worked quickly enough for ME.
    NIH and all HHS agencies must INNOVATE in how it deals with funding, grants, trials, recruitment and training of new investigators/clinicians etc. NOW!

    In terms of legislative efforts- this morning Dr. Rowe said patients with ME need a Ryan White-type Act for ME (http://ryanwhite.com/rwcareact.html)

  2. It is very frustrating to have such specific symptoms as cells not manufacturing energy aerobically, and having a very exaggerated over-reaction to exercise, and having the researchers not be able to find out why.

    There are many other subjective parts of ME/CFS, because pain is subjective most of the time, and the few ways of measuring it involve things that are never available to patients in a doctor’s office requesting painkillers. I had some vague memory of some kind of brain scan that showed the differences between people in pain, and people not in pain; here is one such link:
    https://www.technologyreview.com/s/425417/an-objective-way-to-measure-pain/

    But it is difficult to believe that the production of energy from cells research doesn’t show what is going wrong with mine. Metabolism is a basic function of all living things.

  3. Sharon Kramer says:

    Sounds promising. FYI, I was in DC the week before last with Drs Ritchie Shoemaker and Scott McMahon. We were there to address a problem which dove-tails with this matter.

    Military families are being disabled by their moldy military housing. This includes symptoms which are indicative of forms of ME/CFS.

    When they complain, they are retaliated against rather than helped. The problem has reached such a level that both Congress and the Senate are holding multiple hearings. They are pledging to make the discrimination and retaliation cease.

    On March 14, 2019, the Navy and Marine Corps Public Health Center issued “Guide for Clinicians Caring for Patients with Mold-related Complaints”. It was the same old discriminatory litigation defense argument which is used by the military housing landlords and their insurers to avoid liability for causation of disabilities and deaths via miseducating the physicians that the symptoms are imaginary and not caused by the moldy buildings.

    I am happy to report that the Navy graciously agreed to withdraw the erred physician education on March 29th. Now it is time to get accurate information into federal physician educational materials and policies.

    Below is the link to the now retracted physician miseducation. It is basically the same bad advice that has pervaded the ME/CFS issue for years. I.e. don’t listen to what the patients say & don’t play into their fears by giving any weight to the medical research papers/testing that they provide to you.

    “Guide for Clinicians Caring for Patients with Mold-related Complaints” (retracted on 3/29/19)
    http://freepdfhosting.com/ea543a6042.pdf

    As the name of the game is to get accurate information into physician educational materials, it seems to be a real step in the right direction for all of us, that the military physicians will not be subjected to this misinformation re: the debilitating illnesses caused by moldy buildings.

  4. jimells says:

    “We have done what we can” pretty well sums up 30 years of NIH and CDC policy. Perhaps they have “CFS” and are tired of dealing with us. Poor babies. I suggest a course of CBT and anti-depressants. And a hobby.

    They have been organizing conferences, workshops, reports, more meetings, more reports, etc. at least since 1987 when a CDC workshop defined “chronic fatigue syndrome” as strictly for research. [1]

    And the most we can get from a 30 BILLION dollar a year organization are guitar picks and “We have done what we can [so don’t expect more]”.

    [1] http://archinte.jamanetwork.com/article.aspx?articleid=616488

  5. Roy S says:

    Collins said “We have done what we can in terms of the resources, both intramurally and extramurally.”
    ??????????????????

  6. Pat says:

    Thanks, Jennie, again for all you do for us!!👍👏🏻🙏

  7. Leela Play says:

    I was hoping for announcement of research funding on par with ME ($250/patient) or AIDS ($2,500/patient) rather than the measly $5/patient or less we are still getting. All the rest is words.

  8. Eimear Forde says:

    Let’s see what happens next…. I’m not sure if he ever gave a speech like that before as I’m only on the scene since 2016. I live in hope. We obviously need to keep the pressure on.

    • jimells says:

      It’s always the same speech no matter which NIH manager is giving it. It reads like it came from a public relations firm:

      1. Acknowledge the illness is devastating.
      2. Play up how hard NIH is working.
      3. Play down patient expectations.
      4. Express hope for a breakthrough any decade now.

  9. billie moore says:

    Just the usual bullshit.

  10. Janet Dafoe says:

    His talk sounded to me like the sweet talk of an abuser sucking you in and then he goes right back to abusing.

  11. Rivka says:

    Words. No action. 30 years of this

  12. Nita Thatcher says:

    It sounds like the same pablum of insipid tripe and glossy PR pep talk they have been trying to get us to swallow for all of the 44 years I have have had this damn disease.

  13. Kathy D. says:

    I cheer on Maureen Hanson in the ending panel who really put the NIH and Francis Collins in the crosshairs — and said OK, it’s time for action from the NIH. She was very direct and said what needed to be said. ME/CFS needs research, funding and treatment.

    And others, especially those who are ill or have sick relatives were good, too.

    Subtlety doesn’t work. Direct requests for action and funding are needed.

    Thanks for all you do for us.

  14. Pingback: “Next Steps for ME/CFS Research” – Cornell Center for Enervating NeuroImmune Disease

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