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Here https://www.nih.gov/nih-me/cfs-advocacy-call-0 is a link to a recording and transcript of last week's NIH ME/CFS Advocacy Call.
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NIH ME/CFS Advocacy Call November 2, 2016
- Thread starter Deborah Kavounas
- Start date
taniaaust1
Senior Member
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- 13,054
- Location
- Sth Australia
Good questions were put to them including something I wanted to know. Thanks Robert Miller and the others who did ask things at this
aaron_c
Senior Member
- Messages
- 691
I kept thinking about Ron Davis' proposal that got rejected, I think because he wanted to gather data that wasn't in support of any particular theory. It seemed like a catch-22--you can't do research into the disease until you come up with a shiny new theory, but you can't come up with a shiny new theory until you do more research. They kept talking about how the grant process is very competitive, all the while very nearly dismissing as sour grapes complaints about how infrequently ME/CFS research is approved.
At one point one of the doctors said that the model they are working off of is one where initial research is done by outside parties, and then once something promising shows up the NIH funds that. But again, it seems like we are being punished for not having an easily categorized or treated disease, all the while being told that we shouldn't be concerned with the lack of grants as it is a natural consequence of our researchers not being at the top of their games this round.
I appreciate that many of the doctors who took part in the call work tirelessly to advance ME/CFS research and we are lucky to have them. But reading the transcript I can't tell if they really have absolute faith in the system or if they just can't criticize the NIH while they work there. At times it felt like the speakers were gaslighting us simply because they didn't have the authority to be more blunt.
Still, I have a limited understanding of how the NIH works. Perhaps they will prove me wrong. I hope they do.
On a different note, I was encouraged to hear that the RFA's should be funded at a level comparable to "other diseases." Time will tell.
At one point one of the doctors said that the model they are working off of is one where initial research is done by outside parties, and then once something promising shows up the NIH funds that. But again, it seems like we are being punished for not having an easily categorized or treated disease, all the while being told that we shouldn't be concerned with the lack of grants as it is a natural consequence of our researchers not being at the top of their games this round.
I appreciate that many of the doctors who took part in the call work tirelessly to advance ME/CFS research and we are lucky to have them. But reading the transcript I can't tell if they really have absolute faith in the system or if they just can't criticize the NIH while they work there. At times it felt like the speakers were gaslighting us simply because they didn't have the authority to be more blunt.
Still, I have a limited understanding of how the NIH works. Perhaps they will prove me wrong. I hope they do.
On a different note, I was encouraged to hear that the RFA's should be funded at a level comparable to "other diseases." Time will tell.
aaron_c
Senior Member
- Messages
- 691
I realized this morning that another explanation is that the speakers were unaware of the specifics of what happened to Ron Davis' grant application. I would say it is the most reasonable explanation, except that at least one questioner alluded to a lack of expertise in the grant-reviewing committee, and whoever answered seemed familiar with the issue.
What is the link for this?
I clicked
on
https://www.nih.gov/research-training/medical-research-initiatives/mecfs
This is the list I got:
Tom Kindlon
Senior Member
- Messages
- 1,734