It is so disheartening listening to NIH...they never leave us with much hope. The rate of progress on the intramural study is also terribly slow. They just piss me off. Sorry, no other way of putting it.
---Chronic Fatigue Syndrome (ME/CFS) Researcher and Patients Shine During NIH Call
NIH ME/CFS telebriefing's aren't always the most stimulating listening but this one was different.
Vicky Whittemore's introduction of a "foundational" NIH program to maximize ME/CFS research was definitely good news, but things really got going when Derya Unutmaz revealed how he managed to snag one of the NIH's ME/CFS research centers. (How did he do it? He's got great findings - none of which have appeared yet).
Then, during the discussion period a doctor with ME/CFS introduced a potential ME/CFS diagnosis I'd never heard before but Dr. Koroshetz strongly supported and which made total sense, at least to me. Check out what Derya Unutmaz has found, and what condition you may actually have in
Chronic Fatigue Syndrome (ME/CFS) Researcher and Patients Shine During NIH Call
https://www.healthrising.org/blog/2017/12/09/me-cfs-researcher-patients-shine-nih-call/
So here we are – five years after an immunologist [Derya Unutmaz] new to this field received 20 samples from the SMCI in the mail – leading an NIH ME/CFS research center. This is the kind of pattern we want to see duplicated again and again. New investigators coming in, bringing their talents and insights to this field and being rewarded for doing so.
We've been in initial contact with him and he sounded keen to interact with us, but further conversation is needed to actually arrange anything. We are waiting for his team to get back to us now.Note to self: Must learn more about Dr. Unutmaz and his research...
Nailling this down is perhaps the greatest challenge, and the most important area for patient input, in my view. I think there is much to do here.The Common Data Element Working Group for ME/CFS has eleven specialized subgroups/panels covering data elements associated with fatigue, sleep, post-exertional malaise (PEM), autonomic testing, imaging, neuroendocrine test and biomakers and others.
Personally, I’d like to see fatigability considered alongside fatigue
Does anyone know if the NIH are planning to post a recording of the call? I'd love to hear what was said.
@Sasha -yes, they said the recording and transcript would be posted. (I had understood they were to be posted last week but they haven't been yet.... I plan to email and ask about it in a few minutes. Will let you know if I hear back.)
@Sasha -yes, they said the recording and transcript would be posted. (I had understood they were to be posted last week but they haven't been yet.... I plan to email and ask about it in a few minutes. Will let you know if I hear back.)
EDIT to add: (I heard back quite quickly - that's always nice) It seems the transcript should be posted soon. The recording wasn't mentioned.
And here's the link (at last)
NIH telebriefing transcript/recording