Sept 10: CDC 'conference call' including Unger and Lipkin
- Thread starter Sasha
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They said they had 200 lines open.I wonder what the call-in number was?
Sushi
I understand that, but at http://cfinitiative.org/research-programs/ you see the CFI's divided into 5 programs. It'd be great to know how much specifically is Lipkin given for his study.
It seems like we really need to get a team to create one central site or subsite on phoenix that outlines all of the current global research projects and explains to the layman (non-scientists) what the implications of successful completion of such a study could mean for people who are suffering / doctor acceptance of ME etc. This way hopefully we could educate relatives friends etc on how important this research is if they are able to easily understand how this could start to transform the lives of people with ME. Then PWME could get relatives and friends to go to the site and undertake some fundraising activities on their behalf.
We could then provide ideas for simple fundraising activities, that are well explained in a step by step process, with printable PDF documents to support the planning of events. We really need a site where people's donations aren't going at all in part towards paying for all of the costs of these charities?
We could then provide ideas for simple fundraising activities, that are well explained in a step by step process, with printable PDF documents to support the planning of events. We really need a site where people's donations aren't going at all in part towards paying for all of the costs of these charities?
I agree. That's what I meant really, but you did a much better job articulated it than me. 
Yes, and that suggests to me that there are a bunch of them which together form a specific profile for ME/CFS. Because lots of diseases cause cytokine abnormalities.
Retroviruses showing up in 85% of samples eh? Hmmm
Also, cytokines are necessary for the immune system to function. Given how little they know about what cause "CFS", its entirely possible the cytokines they are seeing are a "normal" response to a yet un-described pathogen or toxin. Its a bit pre-mature to just assume they are the disease themselves.
Also, I have had very elevated IL-8 on multiple cytokine panels. I wonder what the discrepancy is between the studies finding high vs low IL-8. Maybe it's down to technique? Weird.
Also, cytokines are necessary for the immune system to function. Given how little they know about what cause "CFS", its entirely possible the cytokines they are seeing are a "normal" response to a yet un-described pathogen or toxin. Its a bit pre-mature to just assume they are the disease themselves.
Also, I have had very elevated IL-8 on multiple cytokine panels. I wonder what the discrepancy is between the studies finding high vs low IL-8. Maybe it's down to technique? Weird.
Congress generally does not direct how the spending is done, science-wise. The big allocations to autism and other diseases that you hear about are "authorization" bills, which authorize NIH to spend money on autism but does not absolutely require it. And even that is not so specified as to target specific researchers or types of research.
If we could get an RFA from NIH, that would mean money set aside for ME/CFS research that then researchers have to apply for. I've heard some rumblings that this may be possible, but nothing definite. Then Lipkin and others would have to submit grant apps and go through the scoring as per usual. RFA set aside money is not guaranteed cash - if not enough grants come in or they don't score well then the money does not get spent.
The Lipkin XMRV study was a very unusual case. The money for that was authorized through Tony Fauci and NIAID. It did NOT go through grant review, but was tacked on to a grant Lipkin already had. That is highly unlikely to happen again (and in my opinion probably shouldn't because peer review is an important safeguard).
I've been talking to advocates about how we go about a) getting an RFA and b) getting authorization legislation through Congress. All I can say is that work is being done. BUT the case definition issue is a huge and immediate barrier. If we have a crappy definition, money won't solve the problem. The most important thing we can do right now is push the definition issue, in my opinion.
If we could get an RFA from NIH, that would mean money set aside for ME/CFS research that then researchers have to apply for. I've heard some rumblings that this may be possible, but nothing definite. Then Lipkin and others would have to submit grant apps and go through the scoring as per usual. RFA set aside money is not guaranteed cash - if not enough grants come in or they don't score well then the money does not get spent.
The Lipkin XMRV study was a very unusual case. The money for that was authorized through Tony Fauci and NIAID. It did NOT go through grant review, but was tacked on to a grant Lipkin already had. That is highly unlikely to happen again (and in my opinion probably shouldn't because peer review is an important safeguard).
I've been talking to advocates about how we go about a) getting an RFA and b) getting authorization legislation through Congress. All I can say is that work is being done. BUT the case definition issue is a huge and immediate barrier. If we have a crappy definition, money won't solve the problem. The most important thing we can do right now is push the definition issue, in my opinion.
I was actually fairly impressed with Dr. Unger today also. She gave updates to a few new educational courses. One of these has been launched on Medscape on April 13 (something like "CFS a case study") and they have already had over 10,000 viewers (by July) which I find quite amazing -where are these people! About 3,700 were primary care doctors and there was also a number of nurses and other med professionals. They do receive CME's for it (Continuing Education Units).
She did mention that she has gotten several letters concerning the 1-day vs. 2-day exercise challenge coming up in Phase II of their multi-site study. She explained some reasons for choosing the 1-day study including the fact that it would be likely that severe ME/CFS patients would not be able to participate in day-2. I think that it is a valid concern and one that I did not take into consideration. She also consulted others about this. Of course, Dr. Snell prefers the 2-day but he does think the 1-day will provide good info.
She is also looking at protocals to include the housebound patient. I believe that is new, and if memory serves, there may have been pressure from the patient population to include such a group??
I did very much get the idea that she is taking in suggestions and is listening to advice, I think she wants to get this right and I believe Dr. Peterson (in his latest interview with ME/CFS alert) did think that she was on the right path.
She said the data from the Stage 1 CDC study will be reported at the IACFS Conference in March 2014.
While I know I'll get some disagreement here, I do think that it's in good form to write to Dr. Unger and wholeheartedly thank her for putting on these Patient Calls for us. Any parts of the new CDC study that you like should also receive praise, and if nothing else, just thank her for bringing in such a terrific speaker as Dr. Lipkin.
The entire 1 hour of the call was highly organized and information packed. It was better than any hour of a CFSAC meeting by far.
She did mention that she has gotten several letters concerning the 1-day vs. 2-day exercise challenge coming up in Phase II of their multi-site study. She explained some reasons for choosing the 1-day study including the fact that it would be likely that severe ME/CFS patients would not be able to participate in day-2. I think that it is a valid concern and one that I did not take into consideration. She also consulted others about this. Of course, Dr. Snell prefers the 2-day but he does think the 1-day will provide good info.
She is also looking at protocals to include the housebound patient. I believe that is new, and if memory serves, there may have been pressure from the patient population to include such a group??
I did very much get the idea that she is taking in suggestions and is listening to advice, I think she wants to get this right and I believe Dr. Peterson (in his latest interview with ME/CFS alert) did think that she was on the right path.
She said the data from the Stage 1 CDC study will be reported at the IACFS Conference in March 2014.
While I know I'll get some disagreement here, I do think that it's in good form to write to Dr. Unger and wholeheartedly thank her for putting on these Patient Calls for us. Any parts of the new CDC study that you like should also receive praise, and if nothing else, just thank her for bringing in such a terrific speaker as Dr. Lipkin.
The entire 1 hour of the call was highly organized and information packed. It was better than any hour of a CFSAC meeting by far.
one interesting thing I heard which hasn't been mentioned on this thread is that Lipkin specifically said Fauci and Frieden were receptive to (presumably biomedical and infectious) projects for ME/CFS. He said their "hands were tied" evidently because of funding issues, specifically sequestration.
That's good you're on the case, Jennie!
Bit Lipkin already has his cohort - he just needs the money. Isn't the NIH always claiming they don't have enough high-quality studies to spend the money on? I don't think they're likely to turn Lipkin down on that basis. It seems well worth someone working with him on this - he must have all sorts of insights into how this could be done.
I think this is a separate issue to the definition issue.
I think sequestration (funding cuts in the NIH budget) are a red herring. If ME got its due share of the current smaller general fund, we'd have a huge increase and everyone else would go down a tiny bit to compensate. Better to have our fair share of a smaller pot than a tiny unfair share of a previously bigger pot.