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

Seems links, to the recordings, are being made available here i.e. as they are uploaded to YouTube*
Nervous System - Immune System - Metabolism & Genetics -- uploaded so far.

*https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/

 

I posted a link to an NIH press release for the Home Test to Treat program in another subforum.

It's not directly related to ME/CFS, so I didn't post it in this subforum. But I wanted post a link here for forum members (especially USA folks) who don't normally look at that subforum:

https://www.s4me.info/threads/usa-n...rogram-extends-nationwide-free-program.36486/

 

Registration is available for the next webinar.

Less Studied Pathologies: ME/CFS Research Roadmap Working Group of Council Webinar 7 of 8 - Jan 5, https://roseliassociates.zoomgov.com/webinar/register/WN_c0WYA2I6SRyV_nBGpSWWGw#/registration

Ilene Ruhoy MD PhD posted on Twitter
"Register now for the January 5th NIH NINDS MECFS research webinar series. I’ll be discussing the state of research and what we need to know and do now on connective tissue disorders and cranial cervical instability."

 

Recording of NIH #MECFS Research Roadmap: Chronic Infections Webinar is now available

https://www.youtube.com/watch?v=s1e4uWYJgGw

Speakers included David Holcomb/Michael Peluso/Anthony Komaroff/Simon Carding

 

Recording of NIH #MECFS Research Roadmap: Physiology Webinar is now available

https://www.youtube.com/watch?v=Y5AvIGvjyO4

Speakers included Michele James, Robert Naviaux, Rob Phair, Dominic Stanculescu, Rebecca Robbins, Maiken Nedergaard, Karl Tronstad, Ron Davis, Ludovic Giloteaux

 

Has anyone worked out the Rose Li And Associates YouTube channel? This where the NIH ME/CFS webinars are posted but unless you have the direct link such as @Dolphin kindly posted above I can't see a listing of all the webinars.

 

Can get to them via https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/

 

Thank you @Andy that helps!

 

https://twitter.com/user/status/1742611463532052714




Tess Falor, Ph.D. | @RemissionBiome
"Additional info from Beth: it's actually going to be a lot more than #MEspine! "Less Studied Pathologies in ME/CFS. Topics include connective tissue disorders; spinal conditions; MCAS; gastrointestinal conditions; neuroendocrinology; & reproductive health"

---------------------------------------

Tess Falor, Ph.D. | @RemissionBiome
@tessfalor

This is going to be a great webinar! Huge to Beth for making this happen. Please register & attend. Let's show that the community wants research into #MEspine structural neurological conditions. #CCI #AAI #TetheredCord #IntracranialHypertension #CSFleaks Thanks in advance to
@julierehmeyer
@RuhoyMD
& others for presenting.

------------------------------------

Julie Rehmeyer
@julierehmeyer
·
Jan 3
Guys, this is what I'm speaking at Friday. Note that it's free, but you have to register at the link below. Beth Pollack, Ilene Ruhoy, Anne Maitland, Petra Klinge, Laura Pace, Emelia von Saltza, Roumiana Boneva, and Elizabeth Unger are all speaking. It's going to be great.

 

https://twitter.com/user/status/1743003768348631116



Hannah Davis @ahandvanish

12h

The NIH is acknowledging these topics for the first time and hosting this webinar is historic and a huge deal! Register here to attend and to show support for future investigation into these critical topics:
https://roseliassociates.zoomgov.com/webinar/register/WN_c0WYA2I6SRyV_nBGpSWWGw#/registration

-------------------------------------

I share Trish's concerns that NIH are giving CCI a platform.

 

Julie Rehmeher has said on Twitter/X that the recording of this most recent meeting is expected to be posted in around 5 days (though unclear whether that is five working days).

 

Here's a web page with all the previous recordings (embedded youtube links):

https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/

I presume they will post future recordings in this same place.

 

Recording of NIH #MECFS Research Roadmap: Lesser Studied Pathologies Webinar is now available

https://www.youtube.com/watch?v=YJ4m1lt7FyE

Speakers included
Vicky Whittemore; Beth Pollack; Ilene Ruhoy; Petra Klinge; Anne Maitland; Julie Rehmeyer; Laura Pace; Beth Pollack; Natalie Thomas; Emelia von Saltza; Roumiana Boneva; Elizabeth Unger

 

Thanks Wilhelmina - do you know if we can make suggestions re research NIH should fund (following these webinars)? E.g. the genomics/genetics talk had references to studies of families with multiple members affected - as a way to find rare alleles which cause disease in those individuals & potentially the pathology in a wider group. Can we suggest/promote ideas like that i.e. genetic studies of families with multiple members affected?
@SimonMcGrath @JonathanEdwards

 

Recording of NIH #MECFS Research Roadmap: Circulation Webinar is now available

https://www.youtube.com/watch?v=Uei0XjFxXSM

Speakers included: Vicky Whittemore; Gwynn Dujardin; Jane Mitchell; Resia Pretorius; Frans Visser; Linda Van Campen; Jiandi Wan; David Systrom

 

Decided to post this on Twitter i.e. and tag NIH -
@SimonMcGrath @Wilhelmina Jenkins
"
Replying to
@LauraAPace
@NIH
@NIH_NINDS
Genetic studies on families with more than 1 member affected by ME/CFS (preferably with at least 1 member severe) - looking for rare variants. This offers potential to identify cause in much wider group.
@SnowyPanthera
@sjmnotes
@SabineHermisson

 

Has anyone watched Jiandi Wan's section (starts 2:28)?

I watched a bit mainly because the name was unfamiliar which made me curious. Turns out he presents quite a bit of unpublished data but I struggled to follow it though I gather red blood cell deformability is still or again on the agenda

According to Wikipedia the drugs mentioned in the slide below are a long-acting β 2 adrenergic receptor agonist used in asthma and COPD (Salmeterol) and a small molecule muscarinic acetylcholine receptor agonist (Xanomeline). I didn't catch why they were chosen

And I'm guessing(!) PO2 stands for partial pressure of oxygen, i.e. how much oxygen gas is dissolved in the blood

ETA: copied to this thread https://www.s4me.info/threads/impai...od-cells-from-me-cfs-wan-nih-talk-2024.37123/ for discussion of this specific presentation

 

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