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

[searcher]

Mary Dimmock read part of the letter in her testimony.

Fantastic!

 

[Undisclosed]

Has the streaming stopped for anybody else?

 

[Scarecrow]

Has the streaming stopped for anybody else?

No but at one point I had to close down and click on the link again.

 

[Undisclosed]

Thanks @Scarecrow That fixed it for me.

 

[caledonia]

Has the streaming stopped for anybody else?

I've had it start "buffering" several times. If I refresh the browser and hit the play button it comes back up.

 

[Sasha]

Argh! Somebody phoned me just at the beginning of the comments and I'm only just back.

Are any people from the floor mentioning the scientists' letter (with which I am now obsessed)?

 

[waiting]

Excellent comments by Deborah Waroff -- the "elephant in the room" about stigma & contempt. She specifically mentioned Lipkin's grant application denial. (Twice denied -- at least once because of a reviewer telling him CFS was considered psychosomatic, therefore denied).

She also mentioned history of application denials of Dr Chia's work.

The NINDS response was that there was now a (new?) process to re-submit or appeal the denial (Whittemore)

 

[Bob]

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. I think this is unusual, and a breath of fresh air.

 

[shannah]

Argh! Somebody phoned me just at the beginning of the comments and I'm only just back.

Are any people from the floor mentioning the scientists' letter (with which I am now obsessed)?

Yes Mary Dimmock did this morning.

 

[shannah]

I'm impressed with the NIH rep. 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?

I agree. She hardly seems like the usual government employee. She said she's new but I don't know if that meant she's new to NINDS as well as CFSAC.

Did anyone mention why she is there or if she's replacing one of the usual agencies that attend?

 

[Sasha]

Yes Mary Dimmock did this morning.

Sorry - I meant in the session that's running now and has been going about 45 mins.

 

[Denise]

Vicky Whittemore is the new NIH ex-officio for CFSAC.
Jennie Spotila mentioned her http://www.occupycfs.com/2015/07/22/the-return-of-cfsac/
"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."

Dr. Whittemore mentioned this morning that some of her graduate work was on ANS.

 

[shannah]

Sorry - I meant in the session that's running now and has been going about 45 mins.

I wondered why you were asking again. I thought 'WOW - you must be some talker tied up that long.' lol

To answer your question, haven't heard it mentioned all afternoon.

 

[Bob]

I feel that our community needs to have access to an expert group who can take over the whole grant application process for our researchers. A group who could take over the whole process of writing funding grant applications, and dealing with the different ways to submit applications, and liaising with all the different departments that consider applications, and taking care of appeals against dodgy decisions. It seems like an immensely complex, niche and expert process that most of our researchers probably aren't equipped to negotiate. Perhaps a group of us on Phoenix Rising could learn to do it?

 

[Bob]

Are any people from the floor mentioning the scientists' letter (with which I am now obsessed)?

Erm, nope, sorry! (Everyone take cover while Sasha throws her mug of tea across the room!)

 

[waiting]

Excellent comments by Deborah Waroff -- the "elephant in the room" about stigma & contempt. She specifically mentioned Lipkin's grant application denial. (Twice denied -- at least once because of a reviewer telling him CFS was considered psychosomatic, therefore denied).

She also mentioned history of application denials of Dr Chia's work.

The NINDS response was that there was now a (new?) process to re-submit or appeal the denial (Whittemore)

So, the response to Deborah's stigma comment was basically that old refrain that the NIH $ would be there IF the application quality was there. I just have difficulty believing that (see MEAction's letter published today in ScienceMag). Are they naive or unaware of the historical stigma? I.e. They just can't believe that's the case? There is likely some truth to the reduction in applications -- researchers have spent tons of $ & time over the decades, only to be denied, so eventually, many may have been forced to stop trying something futile.

 

[waiting]

I feel that our community needs to have access to an expert group who can take over the whole grant application process for our researchers. A group who could take over the whole process of writing funding grant applications, and dealing with the different ways to submit applications, and liaising with all the different departments that consider applications, and taking care of appeal against dodgy decisions. It seems like an immensely complex, niche and expert process that most of our researchers probably aren't equipped to negotiate. Perhaps a group of us on Phoenix Rising could learn to do it?

Good idea. Vicky said NIH can work with researchers to develop a plan. If so, that would be good. But, they haven't suggested this before??

CAA's (now SolveCFS) seed money to researchers was always a great idea, too, which I think Vicky (or someone there) also recommended as a necessary starting point to get grants approved. Does anyone here know if SolveCFS has stats on if their seed money has resulted in a greater grant approval rate?

 

[jimells]

The point about Lipkin and Davis getting their grants applications turned down needed to be said, and be said it really well, and it must surely stop them continuously saying that they don't receive high quality grant applications (he mentioned that as the basis of his talk).

And yet just a few hours later the NIH mouthpiece went on and on repeating the same old excuses about low quality grants, etc.

They need to hire a new PR firm to generate new excuses - the old ones are really, really, really worn out.

 

[Bob]

Vicky said NIH can work with researchers to develop a plan. If so, that would be good. But, they haven't suggested this before??

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.

 

[jimells]

I think she said the test has to be done within 24 hours after the blood is collected, and that normal testing facilities wouldn't achieve this. Obviously an erroneous negative test result wouldn't be helpful, but I'm not sure why they couldn't stipulate that the test be carried out within 24 hours, and any other criteria that are necessary for interpreting the test correctly.

She outlined the problem to be the commercial labs. She said it takes them 48 hrs to deliver samples to specialty labs because all samples go to some centralized processing facility the first night, then samples go to specialized labs the second night. I have seen how this works in practice when the results come back from labs located in different states.

Like every other giant institution, the way the labs operate is so well-structured and rigid that they are incapable of handling any exceptions. And we're always the exceptions, aren't we?