NIH 2023-2024 Webinars thread

[Murph]

The NIH has done a very comprehensive run of webinars. there's 8 of them. each goes for four hours. It's just so much content! A lot of the latest research is in here, and all the big names. Hanson, Davis, etc, alongside many other people I've never heard of who are doing good work.

This is part of a process called the research roadmap that is figuring out where best to spend research funds in future. They're seeking input from everyone, including the community (i.e. us).

What's more the NIH boss Vicki Whittemore has been present for literally all of it. A big show of commitment from her to mecfs, which is welcome.

The first one was August 25, 2023, on the nervous system

10:00 AM ET	Introduction	Vicky Whittemore, PhD NIH/NINDS Webinar Moderator: Jarred Younger, PhD
10:05 AM ET	Lived Experience	Trisha Fisher
10:10 AM ET	Talk 1: Cognition	Gudrun Lange, PhD Pain & Fatigue Study Center
10:35 AM ET	Talk 2: Dysautonomia	Peter Rowe, MD Johns Hopkins Medicine
11:00 AM ET	Talk 3: Cerebral Spinal Fluid Studies	Jonas Bergquist, MD, PhD ME/CFS Collaborative Research Center at Uppsala University
11:20 AM ET	Break
11:35 AM ET	Talk 4: Neuroimaging	Jarred Younger, PhD University of Alabama at Birmingham
12:00 PM ET	Talk 5: Sleep	Janet Mullington, PhD Harvard Medical School
12:25 PM ET	Break
12:40 PM ET	Talk 6: Peripheral Nervous System	Peter Novak, MD, PhD Brigham and Women’s Hospital
1:05 PM ET	Panel Discussion	Moderators: Jarred Younger, PhD and Vicky Whittemore, PhD

 

[Murph]

The second one was on October 19 2023, on the immune system.

11:00 AM ET	Introductions	Vicky Whittemore, PhD; NIH/NINDS
11:10 AM ET	Clinical Immunology of ME/CFS	Nancy Klimas, MD; Nova Southeastern University
12:00 PM ET	Evidence for autoimmunity in ME/CFS	Carmen Scheibenbogen, MD; Charité-Universitätsmedizin Berlin
12:40 PM ET	Immune cell-type approaches to identify mechanisms of ME/CFS	Maureen Hanson, PhD; Cornell University
1:15 PM ET	Break
1:30 PM ET	Predictive and mechanistic insights into immune perturbations during ME/CFS	Derya Unutmaz, MD; Jackson Laboratories
2:05 PM ET	Gut-Immune-Metabolic Interplay in ME/CFS	Armin Alaedini, PhD; Columbia University
2:25 PM ET	Lived Experience	Angela Termini
2:35 PM ET	Lived Experience	Tracy Duvall
2:40 PM ET	Research Priorities, What is translatable clinically?	Moderator: Vicky Whittemore, PhD

 

[Murph]

The third one was on October 26 2023 on Metabolism.

11:00 AM ET	Welcome remarks	Vicky Whittemore, PhD Program Director, National Institutes of Health National Institute of Neurological Disorders and Stroke
	Session 1	Alain Moreau, PhD (moderator) Université de Montréal, Canada
11:05 AM ET	Speaker 1: “Lived Perspective of a Patient – Progress Made via Self-education, Determination, Self-tracking, and Analysis”	Chris Wikman Patient-partner
11:20 AM ET	Speaker 2: “The interplay between metabolism and immunology in ME/CFS”	Shuzhao Li, PhD Jackson Laboratories, USA
12:00 PM ET	Speaker 3: “Investigations and Consequences of Altered Metabolism in ME/CFS Immune Cells”	Jessica Maya, PhD Post-doctoral fellow / Dr. Maureen Hanson’s Lab Cornell University, USA
12:30 PM ET	Speaker 4: “Single-cell Raman technologies for diagnosis and investigation of ME/CFS immune cells”	Jiaboa Xu, PhD University of Glasgow, Glasgow, UK
1:10 PM ET	Break
	Session 2	Alain Moreau, PhD (moderator) Université de Montréal, Canada
1:40 PM ET	Speaker 5: “Studying Metabolomics in ME/CFS – A Computational Perspective”	Wenzhong Xiao, PhD Harvard School of Medicine, Boston, USA
2:20 PM ET	Speaker 6: “Microbial metabolism in ME/CFS pathogenesis: The state of supporting evidence and prevailing knowledge gaps”	Brent Williams, PhD Columbia University, New York City, USA
3:00 PM ET	Speaker 7: “Metabolic characterisation of biofluids in ME/CFS”	Chris Armstrong, PhD Melbourne University, Melbourne, Australia

 

[Murph]

The fourth one was on November 1 on genomics.

11:00 AM ET	Opening remarks	Vicky Whittemore, PhD NINDS
11:05 AM ET		Oved Amitay, PhD Solve M.E.
11:08 AM ET	Lived experience Perspective	Hayla Sluss, PhD University of Massachusetts
	Session 1: Large data-sets and Genome Wide Association Studies (GWAS)
11:15 AM ET	Genetic risk factors of ME/CFS: a critical review (GWAS)	Chris Ponting, PhD University of Edinburgh
11:45 AM ET	Combinatorial analysis of Genetic Risk Factors for ME/CFS, UK Biobank	Stephen Gardner, PhD PrecisionLife
12:10 PM ET	Genetic susceptibility in Long Covid and ME/CFS: Long COVID Host Genetics Initiative (international network)	Hanna Ollila, PhD University of Helsinki Vilma Lammi, PhD University of Helsinki Anniina Maria Tervi, PhD University of Helsinki
12:35 PM ET	The use of Large public biobanks for genotype/phenotype analysis: Industry perspective	Slavé Petrovski, PhD AstraZeneca
12:55 PM ET	Q&A
1:05 PM ET	Break
	Session 2: Enriched cohorts and Epigenetics
1:25 PM ET	Characterizing the Genetic Basis of ME/CFS through Case-Control and Family Studies	Fereshteh Jahaniani, PhD Stanford Varuna Chander, PhD Stanford
1:50 PM ET	Contribution of Epigenomics to ME/CFS Pathogenesis: Past, Present and Future	Alain Moreau, PhD Université de Montréal
2:20 PM ET	Closing remarks	Kristina Allen-Brady, PhD University of Utah

 

[Murph]

The fifth one was on November 30, on Chronic infections.

[

11:00 AM ET	Introduction	Vicky Whittemore, PhD NIH/NINDS
11:05 AM ET	Lived Experience	David Holcomb
11:15 AM ET	Chronic infection in Long COVID	Michael Peluso, MD, MHS University of California San Francisco
11:50 AM ET	Discussion
12:00 PM ET	Chronic infection in ME/CFS: non-Herpes viruses	Maureen Hanson, PhD Cornell University
12:40 PM ET	Discussion
12:50 PM ET	Break
1:15 PM ET	Infection/reactivation of herpesviruses and ME/CFS	Anthony Komaroff, MD Harvard
1:55 PM ET	Discussion
2:05 PM ET	Endogenous retroviruses and ME/CFS	Prof. Simon Carding Quadrum Institute, University of East Anglia

 

[Murph]

The sixth one was on Physiology, on December 6 2023.

11:00 AM ET	Introduction	Vicky Whittemore, PhD NIH/NINDS
11:05 AM ET	Illuminating Whole Body Immune Responses In ME/CFS Using PET	Michele James, PhD Stanford University
11:30 AM ET	The Cell Danger Response	Robert Naviaux, MD, PhD University of California, San Diego
11:55 AM ET	Update on the Itaconate Shunt Hypothesis	Rob Phair, PhD Integrative Informatics
12:15 PM ET	Lived experience: searching for mechanisms of ME/CFS in other conditions	Dominic Stanculescu Independent Researcher, Belgium
12:35 PM ET	Consensus report on what is refreshing sleep?	Rebecca Robbins, PhD Harvard Medical School
12:50 PM ET	Non-refreshing Sleep	Maiken Nedergaard, MD, DMSc University of Rochester and University of Copenhagen
1:15 PM ET	BREAK
1:30 PM ET	Metabolism and ME/CFS	Karl Tronstad, PhD University of Bergen
1:55 PM ET	BH4: a potential culprit	Ron Davis, PhD Stanford University
2:20 PM ET	Extracellular vesicles	Ludovic Giloteaux, PhD Cornell University

 

[Murph]

The 7th one is upcoming and will be on less-studied pathologies.

I'll edit this post after it comes out.

 

[Murph]

The 8th and final one will be on circulation.

 

[Zebra]

Hi, @Murph

How lovely of you to organize and post these resources for us! Really appreciate it!

 

[Murph]

Of everything I've seen so far maybe the most surprising is this slide.

1. it comes from a woman i've never heard of, michelle james of Stanford. She's an Australian who has made it to assistant professor at Stanford at a rather young age, which makes me proud.
2. She found a big signal of inflammation in bone marrow. What does that mean?!?

 

[Murph]

I can't edit the older posts. Anyway, here's the seventh one, on lesser studied pathologies

11:00 AM ET	Introduction and welcome	Vicky Whittemore, PhD NIH/NINDS Beth Pollack MIT
11:05 AM ET	Lesser Studied Pathologies: Overview; Prevalence and Comorbidities Inclusion in Research	Beth Pollack MIT
11:15 AM ET	Connective Tissue Disorders, Spinal Conditions, and ME/CFS	Ilene Ruhoy, MD, PhD Mount Sinai South Nassau
11:55 AM ET	Break
12:05 PM ET	Tethered Cord Syndrome	Petra Klinge, MD, PhD Brown University
12:30 PM ET	Mast Cell Activation Disorders and ME/CFS	Anne Maitland, MD, PhD Mount Sinai
12:55 PM ET	Neurosurgical Conditions in ME/CFS	Julie Rehmeyer
1:00 PM ET	Break
1:10 PM ET	Gastrointestinal Dysfunction in ME/CFS: The Role of the Neuroimmune Axis	Laura Pace, MD, PhD University of Utah
1:40 PM ET	ME/CFS and Female Reproductive Health	Beth Pollack MIT
1:45 PM ET	ME/CFS and Neuroendocrinology	Natalie Thomas, PhD The University of Melbourne
1:55 PM ET	Endometriosis & ME/CFS	Emelia von Saltza
2:00 PM ET	Reproductive Health in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)	Roumiana Boneva, MD, PhD CDC Elizabeth Unger, MD, PhD CDC
2:20 PM ET	Break
2:25 PM ET	Panel discussion with all speakers
2:50 PM ET	Closing Remarks	Beth Pollack MIT Vicky Whittemore, PhD NIH/NINDS

 

[Murph]

number 8 on circulation. Some great stuff in here on microclots at the one hour mark.

 

[Murph]

number 8 on circulation. Some great stuff in here on microclots at the one hour mark.

THis last video contains some pretty cool findings on blood flow that aren't published yet. A lab at UC Davis in California has looked at how red blood cells are supposed to become softer and more squishy ("deformable") in response to lower oxygen concentrations ("PO2"). That makes them go faster so thy can deliver oxygen when needed. in Me/cfs that doesn't happen as much. So the body can't respond when oxygen levels get low, and symptoms worsen.

They showed that very clearly. But what is really cool is they also looked at things that can fix that. Here's some unpublished info showing something called xanomeline can restore the responsiveness of red blood cells. The slope gets steeper in the chart on the left the more xanomeline they pump in.

Xanomeline isn't fully available yet, it remains experimental, but it did just pass a phase 3 trial so it's not at the beginning of the process either. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)02190-6/fulltext. What's also interesting is that, like abilify, it is an antischizophrenia drug.

 

[andyguitar]

Xanomeline isn't fully available yet, it remains experimental, but it did just pass a phase 3 trial so it's not at the beginning of the process either.

Another drug gets a mention-Salmeterol- which is available and is used to treat Asthma and COPD. Used as an inhaler.