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

[Bob]

Comment from Hillary Johnson, who I believe was not a fan of the CAA:
"People, time to give Carol Head a chance. She is the most eloquent, passionate, believable healthy leader out there. CAA is ancient history."
https://twitter.com/oslersweb/status/633746712624939010

Hillary wrote Osler's Web.

 

[Denise]

I hope following helps a little but ...

The general rule of thumb across NIH it seems is that only about 1 in 12 grant applications get funded.

Keep in mind also that the grant reviewers do not decide if a grant gets funded.After they review the grants (and score them) it goes off for council review. (http://grants.nih.gov/grants/peer_review_process.htm#Second)

"Second Level of Review - Advisory Council or Board
Who Reviews the Application?

The Advisory Council/Board of the potential awarding IC performs the second level of review. Advisory Councils/Boards are composed of scientists from the extramural research community and public representatives ( NIH Federal Advisory Committee Information ). Members are chosen by the respective IC and are approved by the Department of Health and Human Services. For certain committees, members are appointed by the President of the United States.

Recommendation Process

• NIH program staff members examine applications, their overall impact scores, percentile rankings (if applicable) and their summary statements and consider these against the IC's needs.
• Program staff provide a grant-funding plan to the Advisory Board/Council.
• Beginning in September 2012, Council members receive a list of competing applications that will be considered for funding from PD/PIs that meet the threshold for Special Council Review. These are investigators who currently receive $1 million or more in direct costs of NIH funding to support Research Project Grants (see NOT-OD-12-140). Council members will be asked to recommend consideration of funding for applications that afford a unique opportunity to advance research which is both highly promising and distinct from the other funded projects from the PD/PI. This does not represent a cap to NIH funding.
• The Advisory Board/Council also considers the IC’s goals and needs and advises the IC director.
• The IC director makes final funding decisions based on staff and Advisory Council/Board advice."

http://grants.nih.gov/grants/peer_review_process.htm#Second

 

[jimells]

I'm impressed with the NIH rep, Whittemore. She sounds sincere, sympathetic, fairly candid, and like she's keen to help assist the research community. From the way she speaks, my guess is that she's done some homework about ME, so I wonder if she already knows that ME/CFS is coming to her office?

Edit: She's not at all defensive about the NIH's record, but is acknowledging weaknesses, and is acknowledging the neglect of ME/CFS. ...

...while continuing to trash the grant applications and blame the lack of research on the research community. She gets the boot in my book.

 

[jimells]

@Denise
Aren't they still using the Special Emphasis Panel to review *all* "CFS" applications, regardless of the sponsoring institute? At some point they staffed the SEP with psychiatrists and others who know nothing about the disease. I can't remember where I read this - perhaps on Craig Maupin's website.

 

[Kati]

Yes, they have. There has been quite an emphasis on this before. I wonder how many of our researchers are aware of this apparent openness to assist them? And i wonder how sincere the offer is.

I was quite surprised that some of the panel members were saying that their department didn't receive enough grant applications for ME/CFS research and they wanted more. One panel member in particular - I'm not sure who that was - or what department she was from. And they all seemed to be saying that they needed large quantities of applications in order for some to get through. I found it quite a confusing discussion - it may be worth listening to again.

This was said many time by Susan Maier. She said she needed more grant applications in order to get more funding. Chicken and egg. We've gone around and around and around. It's not working.

 

[Bob]

This was said many time by Susan Maier.

Thanks, I couldn't remember her name. Yes, she gave a lot of emphasis, at least at CFSAC, about helping with grant applications. I was never sure if she was being sincere.

 

[Sasha]

I really like the look of Vicky Whittemore. I suspect she's been told some cobblers about NIH's role so far and hasn't had time to hear all sides of it but she seems well-intentioned and eager to help. I bet she has some useful off-the-microphone conversations with the people at the meeting.

 

[Denise]

@Denise
Aren't they still using the Special Emphasis Panel to review *all* "CFS" applications, regardless of the sponsoring institute? At some point they staffed the SEP with psychiatrists and others who know nothing about the disease. I can't remember where I read this - perhaps on Craig Maupin's website.

I am not 100% certain but I believe the SEP (Special Emphasis Panel) reviews grants submitted for the general ME(cfs) funds whereas applications to other institutes would be reviewed by that institutes review panel (though I believe a different term is used).
In the past few years it seems that the reviewers on the ME(cfs) SEP have been less of the dentist/psych variety.

@leokitten may be able to help clarify/correct re institute grant reviews. (please)

 

[jimells]

The most interesting presentation was by Dr Fletcher - she's an associate of Dr Klimas? Anyway, it turns out the IOM report is crooked as a dog's hind leg. Dr Fletcher examined the immune studies cited by the IOM and found that in each case the study was badly misrepresented, to the point where the study conclusion was opposite of what the IOM report claimed. Dr Fletcher's presentation cited all the details, down to the offending page numbers in the IOM report.

Being diplomatic, Dr Fletcher suggested it might be a "technical error", but in any case the errors need to be acknowledged and corrected by issuing an errata. Even more troubling is the fact that some of the misrepresented studies were conducted by....

members of the IOM panel

This fits in quite nicely with Jeanette Burmeister's recent revelations of CFSAC recommendations being massaged by HHS staff, along with all the other continuing BS.

 

[jimells]

The biggest part of the afternoon session was taken up with the full committee's review of a list of about 14 recommendations based on the P2P and IOM reports. It was very tedious to try to figure out what was going on over the telephone. They are working on a great list of recommendations. These folks are trying to do something useful for us.

Unfortunately it was also very depressing to hear them struggle to try to figure out just how to structure their document so that Our Dear Leaders might deign to read part of it. There was an implicit understanding that their list would likely be ignored once again, assuming The Leaders actually bother to read any of it.

Versailles on the Potomac sure makes the original King Louis and Marie Antoinette look like pikers... (Let them eat CBT)

 

[jimells]

One of the recommendations is to drive a stake through Fukuda. I found it encouraging that this was not controversial and was quickly approved unanimously.

They also are recommending that the research program be moved to the NINDS (Neurological Disorders and Stroke) while continuing the Trans-NIH Working Group. There was some discussion about having the Trans-NIH Working Group led by both the NIAID (Allergies and Infectious Diseases) and NINDS, but I couldn't make much sense of it.

Another recommendation is to issue an RFA, and I remember a discussion about requesting $250 million for research, but I'm not sure if that was a public comment or a committee recommendation.

There was also something about using the NIH clinical hospital to conduct treatment trials - it was quite technical in the bureaucratic sense so I had trouble following it.

 

[searcher]

A clip of Cheryl Kitt from NIH claiming that there aren't quality research applications.

Edit: Transcription for anyone who would rather not watch the video:

"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."

 

[usedtobeperkytina]

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.

 

[catly]

I only got to listen into the last 1.5 hours today and probably won't get to listen much tomorrow, so I just want to say thanks to everyone who posted a play by play for todays meeting

 

[Kati]

I believe it is the first year I can watch CFSAC from my IPAD which is a good thing.

 

[jimells]

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.

They only finished one through nine (I think). The rest are supposed to be discussed tomorrow, although at this afternoon's slow pace, there seemed to be some doubt about having enough time. Maybe it's a way to avoid more public comment time. Today's comment time was cut off early - I couldn't understand why. There was no mention of it in the afternoon session.

I'll try to take notes tomorrow. I prefer to be specific and accurate, and my memory is anything but.

 

[SOC]

A clip of Cheryl Kitt from NIH claiming that there aren't quality research applications.

I found that stunning in the face of the researchers' letter (which she obviously hasn't seen yet). I can only assume she's naive or oblivious, working under the assumption that the system works properly... because she surely cannot be saying that Nobel laureates, members of the National Academy of Sciences -- researchers of the caliber of Lipkin are not producing quality research applications.

The poor woman unintentionally made herself look ill-informed and foolish. I was quite embarrassed for her. No doubt she has faith in the system in which she works and can't believe personal bias has affected the funding of important research. I hope someone educates her very soon so that she doesn't continue to put her foot in her mouth in that embarrassing and (I'm assuming unintentionally) insulting way.

ETA: Oh dear. She's the Deputy Director of the Center for Scientific Review. Maybe we have some deep denial going on here.

 

[usedtobeperkytina]

Ok, does anyone have a paraphrase of the last five recommendations discussed today?

 

[acer2000]

I don't think the issue is that Stanford or Columbia don't know how to write grants. Its almost certain that the NIH committee reading them doesn't take the illness seriously. Or the people they put on the committee reviewing the grants don't have the required expertise needed to evaluate them.

But then again, we all knew this.

 

[Kati]

I don't think the issue is that Stanford or Columbia don't know how to write grants. Its almost certain that the NIH committee reading them doesn't take the illness seriously. Or the people they put on the committee reviewing the grants don't have the required expertise needed to evaluate them.

But then again, we all knew this.

Or would it be that NIH doesn't want to have to deal with a multi-millions disease, and that perhaps the insurance company is paying them to not fund research?

i know, likely far fetched but conspiracy theory is so tempting today. I wonder why.