Hope123
Senior Member
- Messages
- 1,266
Marc Cavaille-Cole, of the FDA -- government spin and stone-walling at its finest................................even Dr. Jones had to call him out on it.
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Nice explanation Hope. Thank you.
I thought part of what the committee might be getting at was the rumor??? that the FDA didn't approve Apligen because they said "They couldn't approve a drug for an illness that doesn't exist". I guess we're not the only ones who heard that rumor???
Nancy has a great point in the fact that our illness has never had clinical trials in regards to use of drugs for sleep, viral loads, cardiac problems. If a drug get's approval from the FDA for use in ME/CFS (I love saying that, grins) then it would go a long way to legitimizing the illness itself. Right now everything we get is more or less off label use. It's approved for use in say sleep but doesn't have the ME/CFS (that's so cool) use.
What's this? Are we getting a new name??
If I followed the discussion correctly (major brain fog), the committee will be referring to it as ME/CFS and will suggest that the various federal agencies involved do likewise.
I know I love it. ME/CFS, ME/CFS, ME/CFS, ME/CFS, ME/CFS, ME/CFS, ME/CFS, ME/CFS, ME/CFS,!!!!!
I got the impression that the people at CFSAC are the players for the next round and they have more or less decided to just ignore the CDC since the CDC won't play by the rules. Do you get that impression?
If I followed the discussion correctly (major brain fog), the committee will be referring to it as ME/CFS and will suggest that the various federal agencies involved do likewise.
I think they said the NIH is using ME/CFS already. (I think they caught it from WPI).