Nielk
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The one million from NIH was for the XMRV study. The current study is from private funding.Has all that $10 mill gone on this study, though?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The one million from NIH was for the XMRV study. The current study is from private funding.Has all that $10 mill gone on this study, though?
It's really frustrating that in this era of easy access to you-tube, no one at the CDC put thought into the fact that access to this broadcast would be very important to this community. If it needed a "review", that could have been set up to happen immediately.
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.The one million from NIH was for the XMRV study. The current study is from private funding.
Couldn't agree more. We need an effective response, not a knee-jerk one, or several. Ideally different groups, organizations and individuals will come together and seek his input first and then do something in as united a way as possible. That would give us the best chance of a good outcome.
Actually, I don't think it would take a mob of us - just someone with some standing to approach him and come up with something with him. Whatever he suggests is what we should do, I think. And then the mob!
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.He seems to consider these cytokines abnormalities bio markers.
Was he saying that we ought to be getting congress people to get more money for ME/CFS research for the NIH and CDC? If so, would there be any guarantee that they'd fund Lipkin to do the other 90% of the study? Is there something more direct to ask for?
Maybe we have advocates who could work with him to come up with a suitable letter, even if he was just advising rather than signing. He has a much better idea of how stuff works than we do. Does anyone have a contact? Nielk? medfeb? jspotila?
We need to do this well, not on the fly.
A nice idea for a project. Do PM me if you're interested in volunteering to organise this...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?
jspotila said: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.
Happily, there are funds available from the cancelled IOM contract:He said part of the reason that we don't have the money is because sequestration (US budget cuts) and everything is very, very tight. He urged us to write our Congress representatives and persuade them to fund this study.
Synopsis:
Added: Sep 04, 2013 4:12 pm
This request has been cancelled. However, HHS will continue to explore mechanisms to accomplish this work.
true and sad.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.