NIH ME/CFS Telebriefing October 23, 2018

Gemini

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Received this e-mail today from the Trans-NIH ME/CFS Working Group:

We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS.

The telebriefing will be held on October 23, 2018, 12:00 pm until 1:00 pm ET.


If you will be calling from the U.S., please use the following dial-in information for the telebriefing.

Dial-in: 866-844-9416

Participant passcode: 7178985

Please remember to register at NIHME-CFSWorkingG@ninds.nih.gov if you plan to join the call.

Thank you in advance for your participation and we look forward to an engaging, thoughtful, and productive conversation.

Regards,

The Trans-NIH ME/CFS Working Group
 

Gemini

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NIH ME/CFS Telebriefing-- "International Callers" CountryToll-free numbers:

ARGENTINA 0800-444-0891
AUSTRALIA 1-800-027-350
AUSTRIA 0800-005-805
BELGIUM 0800-3-8929
BRAZIL 0800-7610654
CANADA 866-845-8493
CHILE 1230-020-5986
CHINA A: 10800-712-2423
CHINA B: 10800-120-2423
COLOMBIA 01800-9-157005
CROATIA 080-08-06-410
CZECH REPUBLIC 800-700-241
DENMARK 8088-2739
EGYPT 0800000-9037
ESTONIA 800-011-1126
FINLAND 0-800-9-14619
FRANCE 080-510-2764
GERMANY 0800-800-1420
GREECE 00800-12-8034
HONG KONG 800-963-172
HUNGARY 06-800-11152
INDONESIA 007-803-011-0169
IRELAND 1800-936-202
ISRAEL 1-80-9212604
ITALY 800-977-454
JAPAN 0066-33-812353
LATVIA 8000-3206
LUXEMBOURG 8002-9169
MALAYSIA 1-800-81-4674
MEXICO 001-866-944-7658
NETHERLANDS 0800-020-0350
NEW ZEALAND 0800-456-285
NORWAY 800-10580
PANAMA 011-001-800-5072373
PERU 0800-53785
PHILIPPINES 1800-111-42417
POLAND 00-800-1213477
PORTUGAL 8008-14925
ROMANIA 40-31-630-01-34
RUSSIA 8-10-8002-5624011
SAUDI ARABIA 800-8-110059
SINGAPORE 800-120-5221
SLOVAK REPUBLIC 0800-002074
SLOVENIA 0-800-81359
SOUTH AFRICA 080-09-82147
SOUTH KOREA 00798-14800-7786
SPAIN 800-300-906
SWEDEN 0200-899-945
SWITZERLAND 0800-001-428
TAIWAN 00801-136-036
THAILAND 001-800-1206-66632
TURKEY 00-800-151-0810
UNITED ARAB EMIRATES 8000-35702387
UNITED KINGDOM 0808-238-9816
URUGUAY 000-413-598-3837
VENEZUELA 0800-1-00-2884
VIETNAM 120-11746

Passcode: 7178985
 

Gemini

Senior Member
Messages
855
Likes
1,714
Location
East Coast USA
Received this e-mail today from the Trans-NIH ME/CFS Working Group:

We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS.

The telebriefing will be held on October 23, 2018, 12:00 pm until 1:00 pm ET.


If you will be calling from the U.S., please use the following dial-in information for the telebriefing.

Dial-in: 866-844-9416

Participant passcode: 7178985

Please remember to register at NIHME-CFSWorkingG@ninds.nih.gov if you plan to join the call.

Thank you in advance for your participation and we look forward to an engaging, thoughtful, and productive conversation.

Regards,

The Trans-NIH ME/CFS Working Group
Bump. Telebriefing is tomorrow.
 

Dolphin

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I forgot about this. I hope some people did listen in or it would give the impression that there is not much interest in such events. This would not be a good message, especially when complaining about the closing of the CFSAC.

I would have been more likely to remember it if they had mentioned who the speakers were going to be.
 

Tom Kindlon

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Tom Kindlon

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Tom Kindlon

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Tom Kindlon

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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.
 

Tom Kindlon

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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.
 

Tom Kindlon

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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.
 

Tom Kindlon

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Tom Kindlon

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