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

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Sasha

Fine, thank you
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searcher said:
A clip of Cheryl Kitt from NIH claiming that there aren't quality research applications.
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She mentions Nancy Klimas by name (she's currently the head of the review committee, if I've got that right), saying that she would back up that statement if she was there - but isn't Nancy Klimas one of the people who have been saying for years that her NIH applications for HIV grants got funded but her ME stuff didn't?

I wish she'd still been there to address that claim.
 
B

Bob

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Sasha said:
She mentions Nancy Klimas by name (she's currently the head of the review committee, if I've got that right), saying that she would back up that statement if she was there - but isn't Nancy Klimas one of the people who have been saying for years that her NIH applications for HIV grants got funded but her ME stuff didn't?

I wish she'd still been there to address that claim.
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There's a recent video of her saying that she finds it very difficult to get funding for ME/CFS, and so she relies on funding sources for her GWI research. Her research has been frustrated, and says, because reviewers don't believe ME is a severe illness. She recommends that ME/CFS advocates seek to get a congressional mandate for ongoing research funds, which is what GWI has, and she suggests that's why she can get GWI funding.
 
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searcher

searcher

Senior Member
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Sasha said:
She mentions Nancy Klimas by name (she's currently the head of the review committee, if I've got that right), saying that she would back up that statement if she was there - but isn't Nancy Klimas one of the people who have been saying for years that her NIH applications for HIV grants got funded but her ME stuff didn't?

I wish she'd still been there to address that claim.
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I assumed she was talking about Nancy Lee? If she was referring to Dr Klimas I hope that Dr Klimas makes sure to corrects this misinformation.
 
S

Sasha

Fine, thank you
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searcher said:
I assumed she was talking about Nancy Lee? If she was referring to Dr Klimas I hope that Dr Klimas makes sure to corrects this misinformation.
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Oh! Maybe I'd got that wrong. I was surprised when I thought she said she was the head of the review committee. Perhaps she said "Nancy" and I filled in "Klimas", forgetting there was another Nancy in the room. But Nancy Lee was still there when that woman said that Nancy would back her up (if she was there??)... can't remember.

Sorry, I'm confused and confusing!
 
B

Bob

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usedtobeperkytina said:
I missed all but the first four recommendations. Can someone fill me in? I got all the ones about research and the first one about creating a research criteria, using CCC in the mean time. But I missed all after that.
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I took a break during their discussions re recommendations, partly because I found my brain freezing over, so I can't help.
 
searcher

searcher

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Sasha said:
Oh! Maybe I'd got that wrong. I was surprised when I thought she said she was the head of the review committee. Perhaps she said "Nancy" and I filled in "Klimas", forgetting there was another Nancy in the room. But Nancy Lee was still there when that woman said that Nancy would back her up (if she was there??)... can't remember.

Sorry, I'm confused and confusing!
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Someone else said they thought she was referring to Klimas which is incredibly infuriating.
 
S

Sasha

Fine, thank you
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A.B. said:
I suspect the problem is that the grant applications are peer reviewed by people who believe it's at least partially psychosomatic.
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That was certainly the case for Ian Lipkin's application very recently (2013?) - I was amazed that these people aren't vetted out of the peer review process.

Perhaps we should be demanding that. I can see Vicky Whittemore going for that.
 
S

Sasha

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medfeb said:
Its not just that reviewers think the disease is psychogenic. Lipkin said that one reviewer said that everyone knows its a herpes virus infection so there's no point in looking in the gut. Bias and misunderstanding about the nature of the disease.
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These reviewers need to be stopped before they ever get onto the panel. It's wrong to have such poor panels and then expect researchers to appeal or resubmit while patients are desperately sick with all our lives on hold.

How do we get this changed? How do we stop these incompetent reviewers getting onto the panel?
 
V

Valentijn

Senior Member
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I'd love to hear them explain what was supposedly wrong with Lipkin's grant application. And if they're now admitting that was a total screw-up on their part, I'd love to hear how they're intending to rectify that specific situation (his funding for ME research), and how they're going to fix the underlying process.

People with that sort of bias would not be allowed on a jury, so I really cannot fathom why they are allowed to decide who gets funding. And I also cannot comprehend why their decisions are allowed to stand when they are based upon blatantly flimsy, incorrect, and prejudiced reasoning.
 
Scarecrow

Scarecrow

Revolting Peasant
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Sasha said:
Been away from the computer since this started today - anything interesting?
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Dunno. I arrived late too, just before the morning break while they were taking comments.

I haven't heard any mention of your latest obsession, btw, if that's what you mean by 'interesting'. ;)
 
Cheshire

Cheshire

Senior Member
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They're now talking about the name. Here's their proposal (not yet discussed)
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