News from NIH: ME/CFS Telebriefing- October 23, 2018

Alvin · Nov 22, 2018

Sunshine3 said: ↑

I just mean fy2018 there were very few applications
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If the NIH is being honest with us. Thats what i meant by Mexican Standoff, if everyone has been burned so many times they may stop wasting their valuable time applying for something they have done so many times and been rejected and scared away from.

Tom Kindlon · Nov 26, 2018

https://twitter.com/user/status/1065473488171999232

https://twitter.com/user/status/1066874661089304576

Tom Kindlon · Nov 26, 2018

Leonard Jason: Thank you. Vicky you mentioned that PAs are going to be discontinued at NIH. I’m wondering if RFAs are also going to be discontinued and if they are not going to be discontinued, is there any possibility of there being an RFA for this field?

Dr. Vicky Whittemore: Program announcements are being discontinued but RFAs are not. I think the distinction is that RFAs typically do have some set-aside funding associated with them, whereas program announcements are essentially just an announcement that we’re interested in receiving grants in a particular area of research.

In addition, there will continue to be program announcements, what are called PARs, which are program announcements that have special review. What that means is that you can have a program announcement with a specially established review group, a special emphasis panel for review. You can also – we’ll be able to have a program announcement with set-aside of PAF, which means a program announcement with specific funding.

We’re are – one of the things on the working group of Council list of things to advise us on, are moving forward whether we should issue any of the PAR PAF category or RFAs. We also are planning to do a survey and discussions with the community about the research gaps to really understand where the research needs are.

It’s one thing to put out a very broad research funding announcement whereas it sometimes it’s much more beneficial if it can be more focused areas of need. Those are some of the things that we’re looking into as to how to be most effective and to really stimulate the research that needs to be done next in ME/CFS. Thank you for that question and hopefully we’ll be able to move on those kinds of things in the near future. The next question, please.
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Tom Kindlon · Nov 26, 2018

Annette Whittemore: Thank you, yes. This is Annette and my question is for Dr. Nath. I noticed that he has made some progress in HERVs, human endogenous retroviral expression. In MS and ALS both with MS HERVW and ALS HERVK and I was wondering, is he pursuing studying the activated HERVs as the potential pathogenic mechanism in ME/CFS and if not would it be possible to take that up with the intramural study group?

Avi Nath: Thanks very much for that question. The answer is yes. As you know endogenous retroviruses were once looked at previously in ME/CFS and the initial reports didn’t really pan out. It turned out to be all contamination. We have to be very careful in looking at these endogenous retroviral elements. Our lab is, – has a lot of expertise in that area and so it makes sense that we’ll definitely look at it. If it pans out, remains to be seen.

Annette Whittemore: I was thinking of endogenous retroviruses versus exogenous and…

Avi Nath: Yes, endogenous.

Annette Whittemore: Right. That’s very encouraging. Thank you so much Dr. Nath.

Avi Nath: You’re welcome.
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Tom Kindlon · Nov 26, 2018

Dr. Vicky Whittemore: Thank you for the question Deborah. As you know many of these programs are addressing current issues such as the opioid addiction problem. NIH has put in place a program to deal with not only opioid addiction but also pain mechanisms and non-opioid treatment for pain. Those programs are actually just being formulated and the RFAs released – I think some of them have been released or will be released soon.

I’d expect and hope that some of those programs that deal specifically with pain could also involve research on pain as it is involved in individuals and treatment of pain for individuals with ME/CFS. Some of the other initiatives such as the BRAIN Initiative, they are currently – let me back up. The first part of the BRAIN Initiative was really to develop new technologies to study the brain.

They’re now moving into ways to apply that technology to studies of the brain – of the brain and brain disease and disorders. Again I’d think that and hope that there’d be investigators out there that could utilize some of the initiatives and RFAs that are coming out within the BRAIN Initiative to apply those new technologies and request funding or submit grant applications as they apply to studies in ME/CFS.

I think that there’s a need obviously for additional research but I think there’s a need to try to also bring individuals outside the ME/CFS field of expertise, say in brain imaging, in pain treatment to the ME/CFS research community. This may be a way in which to do that.
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Tom Kindlon · Nov 26, 2018

https://twitter.com/user/status/1066880117014740993

Tom Kindlon · Nov 26, 2018

https://twitter.com/user/status/1066880779609874432

Stuart · Dec 3, 2018

Alvin said: ↑

Assuming the NIH is not gaslighting us this seems to be a Mexican Standoff. The major players have tried for years to get money through repeated applications but got hung out to dry. They are either applying and still being denied or don't want to waste more resources after being burned so many times.
Assuming the NIH is not gaslighting us and there really is money available...

I don't have twitter but if someone wants to link my post or copy and paste it in a reply to that tweet please do.
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It's all gaslight Alvin. After 35 years it's all the same playbook, just variations of the same moves.

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News from NIH: ME/CFS Telebriefing- October 23, 2018

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