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.


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.

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