USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

News from NIH: Webinar on March 4 about the ME/CFS Research Roadmap

NINDS will be hosting a webinar on March 4, 2024, from 11-12pm ET to provide updates on the ME/CFS Research Roadmap. Speakers will include Vicky Whittemore, Ph.D., NINDS program director; and Research Roadmap co-chairs Maureen Hansen, Ph.D., and Lucinda (Cindy) Bateman, M.D. Please register for the webinar in advance.


During the webinar, attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. For those on the phone, please dial *9 to raise/lower your hand and *6 to mute/unmute. Additional instructions for joining by phone are on the Zoom support website. We regret that we may not be able to respond to all questions that we receive, but we will try to answer as many as possible in the time allotted.


Regards,

The Trans-NIH ME/CFS Working Group

https://twitter.com/user/status/1757471021089632512
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Dolphin said:
News from NIH: NINDS is seeking feedback on ME/CFS Research Roadmap Priorities

NINDS is seeking your input on the ME/CFS Research Roadmap priorities. The goal is to collect broad feedback from the public on the research priorities being developed by the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research Roadmap Working Group of Council that will result in a report presented to the National Advisory Neurological Disorders and Stroke (NANDS) Council in May 2024.


The public comment period is now open and is scheduled to close on March 8, 2024. We encourage stakeholders to review all of the priorities and comment on as few or as many as each individual or organization prefers.


Comments may include input on how the draft research priorities could be enhanced, new research questions that could be included, or challenges that the current research priorities may face.


Comments will be public so please do not include any personal and/or medical information.


To submit feedback, visit the IdeaScale website

To learn how to use the IdeaScale website, watch this instructional video


To learn more about the ME/CFS Research Roadmap and to view the research webinars, visit: https://www.ninds.nih.gov/about-nin...l/nandsc-mecfs-research-roadmap-working-group

If you have any questions regarding the Research Roadmap process or IdeaScale, email MECFSResearchRoadmap@ninds.nih.gov
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Oops @TomKindlon -
I replied to Tom Kindlon's Facebook post (highlighting need for research) with this post*.


*"Hi Tom, re research - NIH are looking for suggestions re what ME/CFS research to fund - think they need to be in by the [EDIT - 8th] March (next month).
I intend suggesting a family based rare genetic variant study - basically rare genetic variants which significantly increase your risk. Possibly this would involve studying families with more than 1 member affected & at least 1 severe.
A rare genetic variant study could benefit a large proportion of those with ME/CFS i.e. if they lead to the discovery of the underlying cause - causes the illness in many people.
M.E Support Northern Ireland Hope 4 ME & Fibro Northern Ireland
 
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@JonathanEdwards @SimonMcGrath grateful if you could highlight research areas which you consider should be funded i.e. to suggest to NIH.
I'm planning on suggesting a rare variant (whole genome study) i.e. looking at families with more than 1 member affected (and at least one severe) plus a (another) GWAS - similar to DecodeME.
 
Dolphin said:
NINDS will be hosting a webinar on March 4, 2024, from 11-12pm ET to provide updates on the ME/CFS Research Roadmap. Speakers will include Vicky Whittemore, Ph.D., NINDS program director; and Research Roadmap co-chairs Maureen Hansen, Ph.D., and Lucinda (Cindy) Bateman, M.D. Please register for the webinar in advance.
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Did anyone attend this March 4 meeting?

If there's a separate thread for discussion would someone post the link?

Thanks :)
 
Hutan said:
Did anyone listen to this?
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I listened to some of this presentation - I'm reluctant to express an opinion - not really qualified to --- but!

Alaedini -
I thought Alaedini talk was interesting - he produced some findings which were unexpected/counterintuitive - I think Jonathan reckons you should pay attention to those!
3.08 (from start) to 3.17 increase in IL10 i.e. suggested in response to gut permeability/LPS migrating across the blood/intestine barrier.
Vicky Whittemore (NIH) asked the question which always comes up - cause or consequence? Which highlight's Simon & Jonathan's point re a genetic study [GWAS - DecodeME (& whole genome sequence studies/rare variant studies?)] - these may tell you cause.

Hanson -
Again interesting findings and I'd support her suggestions re further work [2.03 (from start)]
IL10 (again) upregulated
Suggestions of migration of monocytes from blood to tissue [CSF2 - see Figure at 1.51 (from start)] where they mature to become active i.e. macrophages - but no reason identified. See also (same?) data here*

I'm wondering if those who actually understand this would support it for funding?

*https://www.s4me.info/threads/monoc...ong-covid-2023-scott-et-al.32370/#post-477529
 
FMMM1 said:
I listened to some of this presentation - I'm reluctant to express an opinion - not really qualified to --- but!

Alaedini -
I thought Alaedini talk was interesting - he produced some findings which were unexpected/counterintuitive - I think Jonathan reckons you should pay attention to those!
3.08 (from start) to 3.17 increase in IL10 i.e. suggested in response to gut permeability/LPS migrating across the blood/intestine barrier.
Vicky Whittemore (NIH) asked the question which always comes up - cause or consequence? Which highlight's Simon & Jonathan's point re a genetic study [GWAS - DecodeME (& whole genome sequence studies/rare variant studies?)] - these may tell you cause.

Hanson -
Again interesting findings and I'd support her suggestions re further work [2.03 (from start)]
IL10 (again) upregulated
Suggestions of migration of monocytes from blood to tissue [CSF2 - see Figure at 1.51 (from start)] where they mature to become active i.e. macrophages - but no reason identified. See also (same?) data here*

I'm wondering if those who actually understand this would support it for funding?

*https://www.s4me.info/threads/monoc...ong-covid-2023-scott-et-al.32370/#post-477529
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Noticed Hanson mentioned Karl Morten's (single cell) Raman spectroscopy work - are they cooperating?
 
FMMM1 said:
Noticed Hanson mentioned Karl Morten's (single cell) Raman spectroscopy work - are they cooperating?
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Listened to the talk on Raman spectroscopy - looks promising as a potential diagnostic tool. Hoping NIH will fund the necessary further investigation.
Interestingly -
  • tryptophan/aromatic (ring structure) amino acids were highlighted - they've turned up elsewhere e.g. Chris Armstrong's work (2015) and the Fluge & Mella paper 2016. They give a strong signal on Raman spectroscopy (owing to the ring structure); and
  • comorbidities weren't relevant (or indeed responses to questionnaires re PEM) - looks like you may be able to select participants for studies based on Raman spectroscopy.
 
From: NIH MECFS Information
To: NIH-MECFS_INFORMATION@LIST.NIH.GOV
Subject: News from NIH: March 4 ME/CFS Research Roadmap webinar materials now available


A video recording and transcript of the March 4 webinar on the ME/CFS Research Roadmap are now available on the NIH ME/CFS website. The webinar included presentations by Vicky Whittemore, Ph.D., NINDS program director; and Research Roadmap co-chairs Maureen Hansen, Ph.D., and Lucinda (Cindy) Bateman, M.D.

https://twitter.com/user/status/1774822963000365155
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NIH RECOVER Research Review (R3) Seminar Series

Next seminar:

PASC in Children: State of the Science and Future Directions

Tuesday, April 23, 2024
12:00 - 1:30 pm Eastern Time
NIH RECOVER said:
The goal of the R3 Seminar Series is to catalyze the formation of a scientific stakeholder community within the RECOVER consortium that can work together to develop a shared understanding of the research field, while keeping each other up to date on their latest insights. Some sessions will also inform the public about RECOVER and other research on PASC.

All sessions will be recorded and posted to recovercovid.org.
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Registration link for this seminar (link also converts time to other time zones)

https://rtiorg.zoom.us/webinar/register/WN_yDtlBe2KRbqqbkXdSW1WvA#/registration

Website for the NIH RECOVER seminar series:

https://recovercovid.org/r3-seminar-series
 
From: NIH MECFS Information <NIH-MECFS_INFORMATION@LIST.NIH.GOV> On Behalf Of NIH MECFS Information List
Sent: Thursday, April 11, 2024
To: NIH-MECFS_INFORMATION@LIST.NIH.GOV
Subject: News from NIH: Save the Dates for upcoming events


Please mark your calendar for these upcoming ME/CFS-related events:



May 2, 2024- PI-ME/CFS Intramural Study Symposium: This will be a hybrid meeting focusing on findings from the NIH ME/CFS Intramural Study. More information about the symposium, including agenda and registration, coming soon!



May 15, 2024—Meeting of the National Advisory Neurological Disorders and Stroke Council: The ME/CFS Research Roadmap will be discussed during this meeting. The open portion of the meeting will begin at 10:00AM ET and will be livestreamed on NIH Videocast. Meeting agenda will be available soon.


May 28, 2024—NIH ME/CFS Telebriefing/Webinar: The webinar will include updates from NIH on ME/CFS-related research activities and a scientific presentation by Dr. Avindra Nath, M.D., NINDS Clinical Director. Registration and Zoom details will be available soon.

https://twitter.com/user/status/1778409200361549942
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https://twitter.com/user/status/1780427512410943791
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Watching this clip is a bit disturbing. The interviewer’s reaction to be puzzled and give her a chance to correct herself is right – she’s not repeating accurate information about the state of research. It suggests she isn’t invested enough in this to understand the science.

Agree.
 
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This was posted and got really big on the r/covidlonghaulers subreddit, I personally tried to post some comments telling people she was exaggerating/not very factual, and got heavily criticised for it.

Unfortunately many people in the long covid community seem to have jumped on the viral persistance ideology, before sufficient research exists. And this interview did not help.
 
Findings from the autopsies, which took place between April 2020 and March 2021, confirmed that SARS-CoV-2 primarily infected and damaged the airway and lungs. But scientists also found virus fragments (viral RNA) in 79 of 85 body locations, with some virus found up to 230 days after patient’s symptoms began.

LINK
 
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