Hello all -
I just got off the phone with Francis Collins regarding today's announcement. I am convinced we've made a bureaucratic breakthrough at the NIH. For 30 years, they have ignored our illness - that changes today. For the first time since the 80's, NIH will bring ME/CFS patients into the Clinical Center. We have a champion inside NIH, Vicky Whittemore, who wants to crack this illness - and she has support from the top to do so. The new director of NINDS is interested in studying ME/CFS. This is huge. For decades, there has been a "don't go there" sign at NIH. That sign just got taken down. Having an intramural NIH research program dedicated to ME/CFS is a big deal.
Getting a nice pot of money to give to outside researchers is a bigger challenge. Collins is working on it, but the NIH gets its budget from Congress - and Congress is a mess. But he assures me people at NIH are working to launch a robust extramural program.
Collins also asked me to figure out how the NIH and the advocacy community can have a more productive relationship. I think the criticism NIH has received in the past was warranted. But I hope today's announcement marks the start of a new relationship between patients and the NIH. They are not the enemy. Things are moving forward, and there will be more opportunities soon for patient advocates to be involved in how NIH studies this illness.
Brian
Brian, we are super grateful that you were able to add a personal dimension to our 30 year quest for our citizens' rights to be treated like human beings by the NIH. Let me offer a small lesson in accounting, of which I had two years at business school. I understand about journalists not going into too much accounting, with a few exceptions, because editors by and large hate numbers. So:
There are hundreds of millions of dollars scarfed away in reserves at NIH. Think of it like the wine bottles in a big cellar, while the host is claiming the fourth bottle of claret in the dining room is his last.
Dr. Collins good friend Fauci, who has hated us for the 30 years he has run NIAID and kicked us out of NIH with help from Dr. Varmus in 1999(advocates begged Women's Health to take us up or we would have been erased from the American consciousness altogether, and thence our pittances) just happens to have a $250 million allocation scarfed away under the rubric "Clinical Trials." This involves getting a lot of doctors who are needed in their hospitals and offices to waste time on showing up at meetings to stroke Fauci's ego because Fauci pretty much determines who gets nickels and dimes and quarters. Check out the relative budgets of the various departments. Fauci has the most, and spends $3 billion on AIDS, some of it on really stupid and futile exercises, some that have killed people by the 100s in Africa, and a vaccine project (one out of four) that even I know enough to find laughable. If you read your history you will find that Fauci is anything but an expert on clinical trials, and also that there is no reason for NIAID to be spending $250 million on clinical trials -- a topic for 4 geniuses and 6 computers to optimize, not for dozens of America's leading physicians and scientists to spend hours on stroking Fauci's ego. Oh, and it's absolutely necessary to stroke Fauci (or, as ACT-UP did, scare him) because he controls 70% of the world's research dollars through Collins.
By the way, can you please post the budget that made you suggest to Collins that $10-20 million would be enough?
I'd like to know what you have prioritized. A bunch of us are looking at $250 million.
p.s. The executive branch has power to make emergency allotments as was done for Ebola. some of us are dying. We're emergencies.
