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.
Collins is either disingenuous or incapable of leading his agency. In either case he needs to retire — and take Fauci with him. A campaign to “encourage his retirement” would raise the social cost of the Policy of No Research. When the social cost of present policy rises high enough, the policy will change. Until then it will be business as usual.
I partially disagree. I don’t think Collins is disingenuous; I think he genuinely believes what he said. And overall, he has been a very good administrator for NIH. I think that he, and NIH, believe that the business as usual approach to growing ME/CFS research is appropriate here. I disagree with that. And I think he believes NIH has done all it “can” at this point, and I definitely disagree with that. Collins has many very very strong political (and scientific) allies. A campaign calling for his retirement not only will be unlikely to succeed, but is a distraction from the real need: immediate actions to increase ME research funding, in addition to the long game approach they are already taking.
Yes I am aware that Collins is politically protected and has boatloads of awards. That doesn’t protect him from being promoted to his level of incompetence (the Peter Principle).
Can all three of these statements really be true?
1. NIH has a policy to develop an effective and adequately funded ME research program.
2. NIH Director Collins is successfully directing NIH to implement the policy.
3. There is no effective and adequately funded ME research program.
Well said, Jennie. I’m amazed at what the ME/CFS patient community has been able to accomplish in the past 3 years. I see only incremental help coming from the agencies that we so desperately need. As you said, “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.” A Decrease in funding. Now? That says everything about how seriously Collins and the NIH regard our disease.
Thank you, Jennie. You are expressing what many of us are thinking.
I would like to ask Dr Collins and the whole NIH group, ‘what is stopping you?’ ‘What has stopped you for so many years of watching patients suffer and die?’ (I won’t speculate here.) Yes, they’ve been saying there haven’t been enough good quality applications. I don’t believe this can’t be arranged.
I imagine, if they wanted to, they could put out the word, invite researchers from several specialties and say to them, ‘here is the problem, we are putting up some funds, what proposals can you come up with?’ I think if they put the money out there, they will come! Am I wrong? So why don’t they do that?
Yes! What is stopping NIH? And you are 100% correct that if they put the money up, the applications would come in.
If medical researchers were told there was grant money ear-marked for ME/CFS there would be many applications from good scientists- I have no question. You are right Susanna. My husband is a MD at a major medical institution. When the NIH calls for grant requests the researchers start working on the grants.
I agree!!!
I don’t think the “No Action, No Hope” theme would reach anyone in the NIH. And that’s because our version of action is totally different from theirs. We want from the NIH more funding, more research centers to be set up, a real push for new researchers to enter the field. They see their current efforts as action, and the Trans NIH Working Group as their ultimate action.
“We have done what we can in terms of the resources, both intramurally and extramurally” should headline every letter to Congress, post, etc. that we write, followed up by how many people are missing and dying and how that phrase is the equivalent of letting people die in prisons in third world countries. It is a stupendously callous statement from the head of one of the richest departments in the U.S. government.
The signs we create for our Millions Missing demonstrations need to include his name, so he is held accountable.
“Dr. Francis Collins: We are losing our lives to ME. Where is the promised NIH action and ramp up?”
“Shame on you, Francis, Director of the National Institutes of No Hope.”
Frankly, I was shocked by how vacant his NIH conference talk was and by the lack of urgency and any sense of taking this disease seriously.
Rivka
I suggest reading The Plague by Judy Mikovits and Kent Heckenlivvely, then you would understand what has really happened with ME/CFS. After you finish, watch the movie Vaxxed and educate yourself on what has happened and continues to happen with vaccines-they are connected. I had a career in biotechnology before being diagnosed with ME/CFS and know that death threats, commingled loyalty-being paid by the CDC, NIH or IOM and cashing in on patents from pharma or receiving large grants for research centers after editing data to hide the truth in scientific papers is not good science and serves the needs of no one except to enrich those that continue to commit this fraud. I no longer wait with baited breath as another excuse is offered by Dr. Francis Collins or more scientific fraud is committed by Ian Lipkin. I am now moving forward with a treatment protocol that is helping and if I had listened to Collins, Lipkin, etc. I never would have.
Please review my blog policies. Accusing someone of scientific fraud is getting close to the line of personal attacks.
http://occupyme.net/comment-policies/
Jane is stating reality. This is not personal attack. It is the real science.
Totally debunked for over 20 years worldwide. Tell all the children and those increasing numbers of people who now have the measles because they were not vaccinated.
Jane,
Good science? If anyone has committed the exact opposite it’s Mikovits, who’s book is nothing more than laughable fiction. If she had indeed discovered that a retrovirus was responsible for ME/CFS, then the drug companies that have made billions from helping HIV patients get their lives back, would’ve thrown a few million towards her research.
They didn’t, because XMRV was a contamination, and 14+ studies, including the one she signed off on said so.
But no, she was running out of money so she wrote a book claiming it was connected with autism, parkinson’s, alzheimers, MS, ALS, you name it, all without a scintilla of evidence. No research, no studies, nothing.
The only person to blame for her downfall is herself.
You are right about the NIH as usual, Jennie; but I can still find hope in the OMF and the work of such as Naviaux, Mella and Fluge, Julia Newton and her team–there are still good people working on our case, and getting somewhere despite their problems with funding. NIH seems deeply reluctant to let money escape into the world outside of themselves.
I think there are many reasons to hope! NIH is not one of them, yet.
Thank you Jennie. As always spot on! Collins’ seemingly innocuous statement that we need to keep pushing the NIH strikes me as condescending. Of course it’s true but coming from Collins himself, who holds the power to me rings more as humouring than truly working together.
Great job – Jennie – particularly bringing out the 2011 statement. Nice! Agree with everything. We must keep the heat on.
So good, Jennie. Thank you so much!
Great blogpost, Jennie! I agree except I would think it highly unlikely that Collins is not being disingenuous.
Is someone going to ask him what is stopping him and NIH from offering up funds to researchers and asking for proposals? Perhaps it could a theme of MEAction and awareness day.
‘Dr Collins, what is stopping you from properly funding the dreadful disease ME/CFS?
Words don’t create hope. Research funding does!’
Very good statement, Jennie. Thanks so much.
I’m for more direct slogans like: NIH: All talk, little action!
Fund ME/CFS Research & Treatment Now!
NIH: ME/CFS Needs Funding, Not Promises!
I wish we could take direct action and do more, but so many
of us are stuck at home. I remember fondly the actions that
ACT-UP held in New York. They had a lot of allies. We need
more allies to help with activism, although there are many
wonderful people out there, as at the NIH conference, who
spoke well.
Well, I wonder what we can do next. MEAction is doing
things.
Thanks again,
Kathy D.
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