viggster
Senior Member
- Messages
- 464
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
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