Next CFSAC Meeting - August 18th & 19th, 2015

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Sasha

Fine, thank you
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OccupyCFS said:
Fourth, the new NIH ex officio is Dr. Vicky Whittemore from the National Institute of Neurological Diseases and Stroke. This is huge news. For the first time that I can remember, the NIH ex officio is from an Institute, rather than the Office of Research on Women’s Health. Furthermore, Dr. Whittemore has acted as the Program Official on ME/CFS grants to Dr. James Baraniuk, Dr. Mary Ann Fletcher and others. Whether this signals changes at NIH remains to be seen.
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Is it also big news that she stayed for two days? I seem to remember that the NIH rep used to shove off as soon as they'd given their update, but do I have that wrong?
 
Seven7

Seven7

Seven
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CFS should be called: Mizaru or Mikizaru (all 3)
In honor to all the ignorance we have suffered. Like the 3 monkeys.

The three monkeys are Mizaru, covering his eyes, who sees no evil; Kikazaru, covering his ears, who hears no evil; and Iwazaru, covering his mouth, who speaks no evil.
 
shannah

shannah

Senior Member
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1,429
Kati said:
In fact the DFO herself reminded the committee about a recommendation to the health secretary from 2010 and she was alluding they should keep on the same track so the said recommendation would not be made invalid. It speaks volume.

2010 recommendation has not made it past a recommendation, along with so many more.
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I burst out laughing when I heard this. A 5 year old recommendation buried along with dozens, probably hundreds more not acted upon. She obviously must have looked this up before the meeting to speak it out so freely.

The crazy part is, she actually made this statement with a straight face. I'd have thought one would be embarrassed to bring that up or at the very least, speak it out rather sheepishly.

Honestly, if you can't make a decision after 5 years about a name the rest of the world has been using for years before that, and want to keep consistency with that 5 year old recommendation that's going nowhere, that's very telling, pathetic state of affairs.
 
jimells

jimells

Senior Member
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northern Maine
halcyon said:
It's true, but it sounds like HHS adopted 'ME/CFS' based on a past CFSAC recommendation.
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I have a vague recollection that the name "ME/CFS" came out of yet another committee-based naming process that had nothing to do with CFSAC. There have been so many of these naming and definition committees that it is near impossible to keep them all straight.

Although NIH seems to mostly use "ME/CFS" recent CDC published studies still use "chronic fatigue syndrome". So HHS has not really adopted "ME/CFS" across all its agencies.
 
Kyla

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
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http://www.meaction.net/2015/08/19/nih-mecfs-research-applications-low-quality/

Janet Dafoe has put out an appropriately scathing reply to the suggestion that ME applications are being turned down due to "low quality":

Janet Dafoe, wife of Stanford geneticist Ron Davis and mother to Whitney Dafoe, a very severely ill ME patient, had a succinct reply to this claim: “This statement from NIH is just insulting to all the good researchers geared up to do research and to all the suffering millions of US citizens who need answers and treatment!” As she explained, “Ronald W Davis, renowned Stanford researcher, submitted two applications for grants with co-investigators Mike Snyder, Chair of Genetics Department and Mark Davis, Chair of Immunology Department, and Ron Thompkins, Harvard PhD, et. al, and was told by NIH not to even submit the full grant proposal because they wouldn’t fund it. Wouldn’t even review it!”
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She has also added in the comment section:

Janet Dafoe says:
August 20, 2015 at 12:50 am
For Ron Davis’s grant proposals he was not even allowed a peer review. They require a pre-application to get permission to send the full grant proposal. Ron and his colleagues sent a detailed summary of their proposals and were told they would not allow them to even submit the grants. This is a higher up decision. No peer review. Ron has written a document with their reasons and his responses. He is allowing it to be made public. This is excellent cutting edge research. Very comprehensive. Best researchers in the world. That woman from NIH should be ashamed! Ridiculous statement and blatantly, verifiably untrue. Insulting.
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M

medfeb

Senior Member
Messages
491
halcyon said:
It's true, but it sounds like HHS adopted 'ME/CFS' based on a past CFSAC recommendation.
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No, not as a department.

NIH adopted the term "ME/CFS." FDA and possibly other agencies refers to it by two separate terms - "ME" and "CFS."

CDC uses the term "CFS" and explicitly ME and CFS definitions together under the "CFS" label but has split them apart in the ICD-10-CM which is due to roll out. I expect HRSA uses "CFS" since they have provided material from CDC to their networks.
 
W

waiting

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Snow Leopard

Snow Leopard

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searcher said:
"We need many more people interested in the problem and applying for research dollars. As Vicky said, we fund the best science. If applications come in… in fact ME/CFS is a very high priority for us. If there were meritorious applications to fund we would fund them. If Nancy were here she will tell you the challenge in peer review of these applications— I have to tell you they’re all not that great. You wouldn’t want us to fund those applications. We want to fund the best that will benefit you.

And so that’s the challenge for us. We get very few per year. Just throwing money out there will not get people to ...sometimes they suddenly get interested, but they have to be poised and ready to go with a good idea and a good methodology to do it. It’s not that we won’t fund it, we would if there were applications there -- and meritorious, that pass peer review. I hope that helps you understand."
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Platitudes from the NIH.

We are stuck in a catch-22 researchers are sitting on the sidelines waiting for the next 'big breakthrough', before they are willing to dip their toes in. Meanwhile, very few researchers are submitting applications and getting funding - because they are afraid of wasting their time due to an extremely high rate of being knocked back.

We need to encourage a specialist focus on ME and be willing to fund speculative/risky pilot studies. (but obviously still science based)
Many of these studies will not get any substantial results, but this is how breakthroughs are made and how science progresses. Science is risky.

In other diseases, they have strong charity groups which fund pilot studies and researchers are also willing to borrow funding from other areas to fund pilot studies on the sly (yes this is corruption and it sucks that this is the norm - this is the main way researchers have to do risky studies, because it is so hard to get funding otherwise)

It is so sad that funding agencies don't understand the need - why funding (many) risky pilot studies will ultimately pay off in the end.

The big game changer is crowd funding. The CAA and now Solve-CFS focused their efforts on funding pilot studies with the hope that it would lead to researchers having preliminary evidence to apply for funding from other funding.

Just as important as the big studies (eg the Rituximab studies, or the microbiome project) are smaller pilot studies and potentially we could create our own crowdfunded organisation and review body to fund them. (optimistic, but there you go...)
 
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