Trial By Error: Jennie Spotila on Collins’ NIH Talk

By David Tuller, DrPH

I’ve never spoken to Francis Collins, who heads the National Institutes of Health. He comes across as a decent, caring man, and by all accounts he is. That’s certainly how he came across in his remarks earlier this month at the NIH’s meeting on ME/CFS research.

But anyone who runs the NIH must play politics as well as direct the country’s medical research enterprise. And there are obviously differences of opinion as to whether the current limits on NIH funding for ME/CFS arise because of scientific concerns or the politics of the illness. The government claims the first. The patient/advocacy community disputes that argument, and so do scientists investigating the illness.

At the NIH meeting, Arthur Mirin, a retired mathematician whose daughter has been ill for years, said the disease burden for ME/CFS should lead to spending in the range of $200 million a year. And Cornell’s Maureen Hanson, who is an NIH grantee, made a passionate appeal from the podium for more funding.

After listening to Dr Collins’ presentation, Jennie Spotila provided her usual sharp, smart insights. As she wrote last week on her blog, Occupy M.E., his remarks gave her a sense of deja-vu. I am reposting Jennie’s blog below, with her permission.

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I Want To Believe Dr. Collins, But I Don’t
(Posted April 17th, by Jennie Spotila)

Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the meeting on Accelerating Research on ME/CFS. For the ten minutes he was present, Dr. Collins said a lot of nice things. I sincerely want to believe it all.

But I don’t.

I want to believe that the meeting is “a real milestone.” I want to believe that the Trans-NIH ME/CFS Working Group will “bring forward ideas about new projects, new kinds of funding,” and that those ideas will have Dr. Collins’s “strong personal support” and thus become reality.

Except Dr. Collins’s remarks this month were strikingly similar, in many ways, to what he said exactly eight years ago at NIH’s State of the Knowledge Workshop on ME/CFS Research. In 2011, Dr. Collins pointed out that “we really need to understand a lot more about what subsets might exist.” He said there had been “hopeful presentations” about approaches coming out of new technologies. He expected “new ideas” to come out of that workshop and that “those new ideas might suggest new research.”

Subsets, the promise of new technologies, and new ideas. Dr. Collins hit all these same notes in his 2019 remarks.

Even so, I want to believe him. Dr. Collins said, “we are part of a family now.” He said he is impatient for progress, just like we are. He acknowledged that NIH has often not seemed to be as responsive as our community wanted, and he regrets that. Dr. Collins was correct when he said that NIH had ratcheted up funding; there was a 75% increase from 2016 to 2017. I want to believe him when he said, “we don’t want to wait a minute if we can see a way to accelerate that progress.”

Except . . . In 2018, NIH funding dropped 17%. Back in 2015, Dr. Collins promised to ramp up funding, but ramps don’t go up and down like a roller coaster. In 2015, Dr. Collins also said, “Give us a chance to prove we’re serious, because we are.” Yet we already know that NIH’s plan is to plant the seeds of the Collaborative Research Centers and then wait. We are halfway through FY 2019 and NIH has made only two new ME/CFS grants, so we are on pace for another decrease in funding.

Dr. Collins said, “We want to be [the National Institutes of Hope] for ME/CFS.” He said, “We want to provide the kind of hope for ME/CFS that is attached to action . . What follows after this meeting is going to be actions as well.”

I want, with all my heart, to believe him. But I can’t.

It’s not that I think Dr. Collins is insincere.

I don’t believe him because we have heard all this before, over and over for many years.

I don’t believe him because the losses are mounting: The money. The scientists. The years. The people.

I don’t believe Dr. Collins because—in this same speech—he signaled to us that we couldn’t. He said, “We have done what we can in terms of the resources, both intramurally and extramurally.”

NIH has done what it can.

Dr. Collins was, I think, trying to give our community hope. He was saying that NIH has gotten the ball rolling with the Collaborative Research Centers and the young investigators meeting. At the same time, he was telling us to be patient. NIH has done what it can, and he wants us to wait for the Working Group to come up with new ideas. As if these new ideas will be a magical substitute for the solution we all know is needed: large scale research funding. He was asking us to hope that actions would follow this meeting, instead of delivering those actions.

I am long past the stage in my life where I will find hope in promises, especially promises from people in positions of power. To believe such promises requires trust, and I have been disappointed too many times.

When actions prove that a person can be trusted, then I will trust. When I see sufficient actions, then I will have hope. To me, hope looks like that 75% increase in funding, but repeated many years in a row. Hope looks like a dozen more Collaborative Research Centers funded by NIH in the next five years. Hope looks like one hundred NIH-supported postdoctoral fellowships.

There are so many people affected by ME who need hope in order to keep going. They believe that research money and treatments and public acceptance are on the way, and soon. They believe that they can trust our government to do the right thing, if we just provide the right information, if we ask in the right way. Reasonable people, when presented with the facts, will do the right thing. I would like to believe that too.

Yet hope is not a plan. Hope, without action, is just a wish. Dr. Collins quoted Peter Levi, and said, “No action, no hope.” I would like to see every #MillionsMissing event blanketed in signs that say: “No Action, No Hope.”

With all my heart, I want to believe the good things Dr. Collins said. But given everything I have witnessed in the last 25 years, I need a lot more than words.

I will believe in the National Institutes of Hope for ME/CFS when NIH starts acting like it.

Comments on this entry are closed.

  • Wendy Boutilier 23 April 2019, 8:28 am

    There’s always a sack full of reasons for the CDC to lie as plainly and as often as the Doofus in the White House. Follow the money is my response. They’ve been gaslighting #PWME and #PWCFS for years. It’s unfortunate that Patient Stakeholders can’t get together long enough to iron out what all of us need inclusive of the right criteria to be used for each individual. There is no reason in the world why those with CFS & those with ME can’t represent all. If the entire community were to pen their needs as one group, the CDC would be forced to listen. Instead, too many small groups raise their voices for the charities benefitting from funding who take their orders from the funder then spin it to sound like paradise.

  • jimells 23 April 2019, 9:07 am

    If I had the strength to travel I would set up a mock retirement party for Collins and Fauci at a May 12 event.

    It was 20 years ago that “Dr. Anthony Fauci, NIAID Director, met with the Dr. Harold Varmus, Director of NIH, and concluded that CFS was more complex and activities should be relocated from a single NIH institute” (CFSAC minutes Sept 2003). That decision effectively killed the CFS research program, and we are still waiting for it to be reversed. The Trans NIH Working Group is a very convenient way to make sure no one has responsibility or authority to organize a proper research program.

  • Couch Turnip 24 April 2019, 9:45 am

    I concur with what Jennie said:

    “When actions prove that a person can be trusted, then I will trust. When I see sufficient actions, then I will have hope.”
    ” Yet hope is not a plan. Hope, without action, is just a wish.”

    Patience isn’t a virtue when people are suffering horrendous pain and distress. Politicians and those in leading positions should stop acting like patients are just a bit tired and that any time will do.

  • Jen 25 April 2019, 10:04 am

    Action speaks louder than words. After patients have been treated, words and promises are meaningless. So much time lost already. There needs to be action and it needs to happen now and generously to make up for decades of neglect.

  • Graham McPhee 25 April 2019, 6:13 pm

    In 2016 NIH spent around $8 per patient PER YEAR on research into ME/CFS, and around $8 per patient PER DAY on research into HIV/AIDS. A 75% increase in peanuts is still just peanuts.

    Perhaps if we focus the funds on ensuring that ME is transmitted through sex we would do better. Somehow that seems to have a more significant impact on the decision makers and those with influence: I wonder why.

  • Benjamin M Blumberg 26 April 2019, 7:41 am

    As long as nobody believes the ME/CFS connection with HHV-6, not to mention the other HHV-6 connections with the nervous system that are being ignored, such as autism, MS and PML, peanuts will remain peanuts.

  • Rivka 26 April 2019, 8:30 am

    Two treasures in our community: Jennie and David.

    Fauci helped push this disease into the shadows decades ago, and more recently, for the last decade, Collins is helping to keep it there.

    The thing is, the disease is becoming so prevalent that it is now impacting people in positions of power; their own children are getting it now, their nieces, their god-children, etc. They are getting a first-hand picture of what we have been living with for 30 years. I would never wish this disease on anybody, not even those who have hurt us. But eventually one of those impacted by the disease will be a senator or high up leader at NIH or world class researcher (sound familiar?) and they will be motivated to put politics aside and truly help us.