US: Annual ME/CFS Working Group Meetings from 2020. Stanford/OMF

J

Jaybee00

Senior Member (Voting Rights)
Link here https://forums.phoenixrising.me/threads/an-announcement-from-ron-davis-phd.81243/

The ME/CFS Collaborative Research Center at Stanford is pleased to announce the 4th Annual ME/CFS Working Group Meeting on the Molecular Basis of ME/CFS.

However, Unfortunately, the Community Day at Stanford has been cancelled due to the pandemic. However, after our Working Group meeting we will investigate whether we can produce a series of videos that will be accessible to everyone. Hopefully next year we will all be able to get together again.

I would like to get the agenda for this meeting, as well as list of participants @Ben H is this possible?
 
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I was wondering if this was going to happen this year. Glad to see they're still organizing a meeting. It's a bummer they're not able to have the community day this year. I enjoyed going in the past, both for the science and the chance to meet other patients, some who had traveled from all over the world to be there. That was really special.
 
Maybe someone on twitter could tweet at Janet Dafoe to indicate a couple recordings (not all) of presentations that patients would be interested in hearing, e.g. Mark and Ron Davis and Robert Phair.
 
JES said:
+1, last year big parts of the event were live streamed.
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In previous years they had a day or 2 for just the researchers so they could share unpublished information and discuss the research and develop and challenge ideas openly in a way they wouldn't be able to do if it was public. It looks like they are spreading over several short sessions what they would have done in that private time, to fit with different time zones. I wouldn't expect any of this to be made public.

The public talks were a separate event the next day.
 
Some slides which appear to come from the symposium have turned up.

https://www.omf.ngo/wp-content/uplo...ium_Stanford-University_Sept-8-11-2020-v6.pdf

Please don't ask me where I found the link. I open links I stumble across in new tabs to read later. By the time later comes around I can't remember the origin of the link. I've googled but can't find any matching talk or speech notes to go with the slides. I did find a public OMF FB post giving the link to the slides but that's all.

The slides are a little difficult to interpret as they are, without further information. But they give intriguing glimpses into what Moreau is working on. All sorts, including the role of thrombospondin-1, a lipid-modyfying enzyme SMPDL3B, sleep disturbances after stressor, and a slide "MiR-140-5p expression could influence Rituximab bioavailability".
 
Must keep an eye on my sleep records next time I get hit with PEM to see if there's a change to REM sleep. I do know my deep sleep decreases significantly with PEM, I wonder why they didn't look at deep sleep here?
moreau 2020 slide 6.JPG
 
Ravn said:
Please don't ask me where I found the link. I open links I stumble across in new tabs to read later. By the time later comes around I can't remember the origin of the link. I've googled but can't find any matching talk or speech notes to go with the slides. I did find a public OMF FB post giving the link to the slides but that's all.
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Perhaps you found the link from this OMF tweet.
 
There was another working group meeting at Stanford in September 2021.
There's a brief report of some topics discussed including metabolic traps and red blood cell deformity, and a list of attendees on PR here
There won't be a published report or any videos, as it was a confidential online meeting including sharing as yet unpublished data.
 
Just looking back over the slides, from slide 7 there is a long discussion about thrombospondin-1. That's interesting given the latest work on microclots and the findings of elevated biomarkers related to thrombosis, including, I think thrombospondin-1 (Edit - no, it was thrombin - but they are related).
We propose that elevation of circulating thrombospondin-1 (TSP-1) levels could induce a brain fog and PEM in ME/CFS by reducing brain-blood flow. Conversely, a rapid decrease in blood TSP-1 levels could induce an orthostatic intolerance or even POTS.
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Screen Shot 2021-11-06 at 11.09.08 AM.png

I can't understand the graph - they say Cluster 3 showed an elevation in thrombospondin levels after a stress-test, but it looks as though the change in TSP-1 was negative.

Maybe Moreau and his co-investigators have published on this study? Slides 12-13 makes some suggestions on how to reduce TSP-1. (This was where the Nigella sativa suggestion came from.)
 
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