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

Based on the time taken to release the recording of the first talk - roughly a month.

 

Missed Chris Ponting's talk.

From memory the independent summary* (doesn't bind NIH), at the end, included a recommendation that NIH should fund a GWAS - similar size to DecodeME? I'd welcome that since in Dementia, a number of large GWAS studies were required to identify relevant genes/focus research.

Other options identified in the independent summary* (doesn't bind NIH):
1) a study of families who have more than one affected member. This seemed like a good way to identify rare variants. Is this type of study also a way to get around the heterogeneous nature of ME/CFS?
2) study family with one affected member, i.e. using siblings as controls.

*University Utah?

 

Don't suppose we have any experts/knowledgeable people who can comment on these types of studies?

 

I got this newsletter via email from NIH but it took me a while to find where it was posted on the nih.gov website.

To save others the trouble, links to NIH ME/CFS newsletters are at the bottom of their resources page (scroll down):

https://www.nih.gov/mecfs/mecfs-resources

 

We already have this study, conducted by Fereshteh Jahanbani who spoke at the webinar, it's just not being funded properly.

 

Thank you - so it needs to be larger --- go beyond whole genome ---?

 

My understanding is that she needs funding for the study to go ahead. It's very large and comprehensive.

 

Other than the webinar, which should be available in about 1 month (start December) is there anything in the public domain on this (proposed) study?

 

The recording of the NIH ME/CFS Research Roadmap: Immune System Webinar is now available https://www.youtube.com/watch?v=6al3hkRo4mo
Speakers included Vicky Whittemore; Nancy Klimas; Carmen Scheibenbogen; Maureen Hanson; Derya Unutmaz; Armin Alaedini

Thursday October 19th
Time Topic Speakers/Moderators
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
2:55 PM ET Closing Remarks Vicky Whittemore, PhD
3:00 PM ET Adjourn

 

Free registration is now open for "Chronic Infections: ME/CFS Research Roadmap Working Group of Council Webinar" on Nov 30 https://roseliassociates.zoomgov.com/webinar/register/WN_AtqQHc3IT7SaHUznXu-hXw#/registration

Thursday November 30th


Time Topic Speakers/Moderators
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
2:30 PM ET Discussion
2:40 PM ET Adjourn

 

I'm not sure if this YouTube channel will stay available or whether an official CDC link will appear later. I listened to Nancy Klimas' talk —

Nancy Klimas - Clinical Immunology of ME/CFS
6:17 - 43:33

Spoiler: Topics covered

Inflammation
- mast cells
- NK cells
- T cells
- cytokines
- endothelial damage/dysfunction
- microthrombosis
Neuroinflamation
- oxidative stress
- glial activation
- PET
- MRI
Viral reactivation
- EBV, HHV etc
- latency in DNA viruses
- persistence with RNA viruses
Microbiome
Metabolism
- mitochondrial dysfunction
Autoimmunity
Treatments
- LDN
- omega-3, curcumin, glutathione, NAC
- nutraceuticals
Research priorities
- ME/CFS Clinicians Coalition
- patient diversity
- gender and age-related studies

(For anyone listening, a couple of minor mis-statements I happened to notice, away from the core discussion of immunology: capillary flow is slow, not fast; and brain MRIs show T2/FLAIR hyperintensities not "type 2 flares" and we don't know if they represent small regions of inflammation.)

 

A recording of the NIH ME/CFS Research Roadmap: Genetics/Genomics Webinar, held on November 1, is now available:

https://www.youtube.com/watch?v=3Sv93qHF0WQ

 

Wednesday November 1st


Time Topic Speakers/Moderators
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
2:35 PM ET Adjourn

 

From talks of Fereshteh Jahaniani and Varuna Chander both from Stanford. TYRO3 and ABCA1 identified with machine learning methods in 2017 and 2018 respectively.

and

This post has been copied and following discussion moved to
Machine Learning-assisted Research on ME/CFS

 

From: NIH MECFS Information <NIH-MECFS_INFORMATION@LIST.NIH.GOV> On Behalf Of NIH MECFS Information List
Sent: Monday, November 20, 2023 7:34 PM
To: NIH-MECFS_INFORMATION@LIST.NIH.GOV
Subject: Register today for the NIH ME/CFS Research Conference, Dec 12-13


Registration https://web.cvent.com/event/efc45a4d-bcc1-4832-b537-8905ae828077/register is open for the upcoming research conference, “Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID,” which will take place on December 12-13, 2023 at NIH Campus in Bethesda, MD. This will be a hybrid meeting where you may attend in-person, or virtually via your browser by joining the NIH Videocast, a live-streaming video platform. For more information about the conference, click here https://web.cvent.com/event/efc45a4d-bcc1-4832-b537-8905ae828077/summary

 

Liked the fact that Chris Ponting made the case for US (NIH) running a large ME/CFS GWAS study - 50K participants. Recommendations, re research NIH should fund, will be submitted next May (2024) - hopefully this will be funded.

1 hour 11 minutes from the start of the ME/CFS Genetics/Genomics Webinar presentation PrecisionLife [who specialise in analysing data from large disease populations "combinatorial analysis"] claim to have identified Dutasteride i.e. as an effective treatment in covid.
There's a separate thread here* and Simon points out that the DecodeME data, which PrecisioLife will analyse, will be split in 2 - so predictions derived from half the data can be checked against the other half.
I'm hoping that this type of analysis may turn up some targets for research.

*https://www.s4me.info/threads/genet...analysis-2023-taylor-et-al.34243/#post-501652

 

ME/CFS Genetics/Genomics Webinar presentation.
Slide titled - "Genetic correlations with ME/CFS Results"*
Diseases listed include:

• objectively diagnosed (?) diseases - "Raynaud" & "Sjögren" & "Asthma"(objective?) - makes me wonder if the ME/CFS symptoms could be due to those?
• (presumably) subjectively diagnosed diseases -"Insomnia" & "Morning Chronotype"; however, these could be measured objectively i.e. using actimetry [FitBit type devices]. There is a study on fatigue, i.e. Aberdeen University, so that might provide tools to objectively measure fatigue & retest the relationship between ME/CFS & Insomnia ---.

*

https://www.youtube.com/watch?v=3Sv93qHF0WQ

- 1 hour 38 minutes from the start

 

CORRECTION - mt DNA loci are contained in the DecodeME study. The limitation is that it is all common variants.
So (future) US study could look for rare variants.

Interesting Q&A at the end of this section [Genetic correlations with ME/CFS Results]. Seems mitochondrial [EDIT - rare variants] sequencing isn't being done in DecodeME and there was a consensus that it should be included in ME/CFS genetic studies. Chris Ponting suggested that this should be included in the (suggested) US genetic study.
Also, seems to be complicated since muscle (biopsy?) samples may be required i.e. since there may be more mutations in muscle.
Must (re)listen to the summary at the end of this webinar.

Looks like this is something that needs research i.e. [EDIT - rare variants] mitochondrial sequencing.

Some Notes -

Steve Gardner PrecisionLife [1 hr 54 mins from start] - AMPK function - gene AKAP1
made me recall the 2016 paper by Karl J. Tronstad & Øystein Fluge - "Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome" [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/] Don't recall this paper being trashed/debunked so that may be why the OMF folks are highlighting need for [EDIT - rare variants] mitochondrial sequencing.

Maureen Hanson [1 hr 56 mins from start] - need mitochondrial [EDIT - rare variants] sequencing

Fereshteh - [1 hr 58 mins from start] more [mitochondrial DNA] [EDIT - rare variants] mutations in some tissues e.g. muscle? Also, "hemoplasma in mitochondrial sequencing" needs to be considered?

Chris Ponting [1 hr 59 mins from start]

Fereshteh - [2 hr 3 mins from start] 2.03 - family studies - some evidence that disease coming from mothers side + epigenetics

2.04 - break.

@Dolphin