Polybio Fall 2023 Symposium

E

EndME

Senior Member (Voting Rights)
Polybio Fall 2023 Symposium

"Join us online Friday Oct. 20 for updates on PolyBio supported projects & collaborations including those spearheaded by the #LongCovid Research Consortium. "

Register on Zoom:https://us02web.zoom.us/webinar/register/WN__cnUbsaISb-D0AtXQ9yGbQ#/registration

Speakers (in brackets the Polybio projects they are working on):
 
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There was mention at the beginning of collecting samples from people with LC,ME/CFS and Lyme, but all the later talks seem to be about LC.
I think they've borrowed 'trickle down economics' where rich people getting richer is supposed to trickle down to making everyone better off. Only it doesn't. Similarly, LC research is supposed to trickle down to give pwME benefits too. We'll see. There's clearly more money for LC research than ME research. Let's hope it can help all of us.
 
Trish said:
There was mention at the beginning of collecting samples from people with LC,ME/CFS and Lyme, but all the later talks seem to be about LC.
I think they've borrowed 'trickle down economics' where rich people getting richer is supposed to trickle down to making everyone better off. Only it doesn't. Similarly, LC research is supposed to trickle down to give pwME benefits too. We'll see. There's clearly more money for LC research than ME research. Let's hope it can help all of us.
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I think there are already LC researchers that have taken the opportunity to start studying other diseases like ME/CFS too. From the Netherlands I know the team Rob Wüst is working with has been collecting samples of ME/CFS patients because they want to study us in unison with LC patients. I think Akiko Iwasaki has made statements about wanting to research ME/CFS too. A lot of researchers seem at least aware that this could tie in with ME/CFS so I'm fairly confident that we will see a lot of research done into our group specifically.

My only fear in this is that LC gets "solved", it in turn solves a significant portion of ME/CFS but then some others who've not had a viral origin will see rapidly decreasing interest.
 
Trish said:
Similarly, LC research is supposed to trickle down to give pwME benefits too.
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But LC patients who meet MECFS diagnostic criteria have MECFS!!

Solstice said:
My only fear in this is that LC gets "solved", it in turn solves a significant portion of ME/CFS but then some others who've not had a viral origin will see rapidly decreasing interest.
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Probably true unfortunately. However FWIW I’m not a big subset person. But it does appear that there is a group that experiences more physical issues (like can’t raise their arms) and another group with more fatigue and brain fog. Whether this has anything correlation with disease origin I don’t think is known.
 
Jaybee00 said:
But LC patients who meet MECFS diagnostic criteria have MECFS!
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The problem with LC is that it is such a strong „brand“ that lots of researchers are getting confused what they are talking about. I know of discussions between researchers and doctors where some were talking about LC and meant people with organ damage, while others meant ME, while everyone was saying LC.
I fear that lots of LC research is useless because they just refuse to recruit specific subset, like ME, and just have a big pile of long covid. That’s what we are seeing in the research area on this forum. We are years into the pandemic and it still seems like most LC researcher never Heart of ME. If you search for „long covid“ on pubmed you get nearly 28.000 results. How come the yearly results for ME are stagnant or going down? That’s insane. We should have talked about subgroups in LC at least two years ago. From a organisation which is supposed to be interested in ME I would have expected more. But I might be naive.
 
Jaybee00 said:
But LC patients who meet MECFS diagnostic criteria have MECFS!!



Probably true unfortunately. However FWIW I’m not a big subset person. But it does appear that there is a group that experiences more physical issues (like can’t raise their arms) and another group with more fatigue and brain fog. Whether this has anything correlation with disease origin I don’t think is known.
Click to expand...

And there are those who cannot raise their arms (as well a having other biomechanical issues) and have lots of fatigue, cognitive problems, OI, easily triggered PEM, etc....
 
Now available on YouTube: 4.5 hours

00:00 Amy Proal — Intro
10:23 Michael Peluso — UCSF LIINC Study and LC tissue program
21:30 Christopher Dupont — Microbiome and single cell analysis platforms
30:00 Michael VanElzakker — Neuroinflammation and vascular abnormalities in LC & ME/CFS
40:41 Mark Painter for John Wherry — Antigen-specific B & T cells in LC
54:07 Akiko Iwasaki — Probing the role of endogenous and latent viruses in LC
1:05:52 Alessio Fasano — SARS persistence in MISC-C and paed LC
1:18:01 Michela Locci — Decoding LC lymphoid tissue adaptive responses
1:29:16 Gene Tan — Identifying serological biomarkers of immune status in viral chronic disease
1:41:03 David Price — SARS reservoirs in lung in LC
1:53:43 Max Qian — AI for identifying LC end-types
2:07:19 Resia Pretorius — Biofilm and endothelial debris in LC and ME/CFS
2:17:47 Marcelo Freire — Immune, clotting and infectious biomarkers in saliva/blood
2:29:49 Annie Antar for Diane Griffin — B cell responses for SARS persistence
2:39:54 Maayan Levy — Serotonin reduction and viral persistence
2:52:21 Lael Yonker — Paediatric Covid, gut permeability
3:01:57 Timothy Henrich — Whole body PET imaging for T cell activation and viral persistence
3:14:06 Matthew Frank — Multi-hit model for LC
3:30:49 Michael VanElzakker — Whole body fibrin PET imaging LC and hi-res MRI in CCI ME
3:43:26 Sara Cherry — GI viral reservoir in LC
3:51:24 Steven Deeks — Infection-associated chronic illnesses - experimental therapies
4:00:46 David Putrino — Clinical care and trials in infection-associated chronic illness
4:14:39 Final Q&A
 
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Which is then supported and extended in 54:07 Akiko Iwasaki — Probing the role of endogenous and exogenous latent viruses in LC.

Along with EBV, VZV, following work on SLE, her team now also looking at HERV envelope antibody complexes that stimulate neutrophils and NETosis. "We have this really great preliminary data in my long Covid study". (Not sure which viruses that statement is referring to).

From 59:55 —

Screenshot 2023-10-24 at 12.07.46 PM Large.jpeg Screenshot 2023-10-24 at 12.08.58 PM Large.jpeg

Refs —

Antibodies against human endogenous retrovirus K102 envelope activate neutrophils in systemic lupus erythematosus (2021, Journal of Experimental Medicine)

ERVmap analysis reveals genome-wide transcription of human endogenous retroviruses (2018, Proceedings of the National Academy of Sciences)
 
Watching it was actually pretty doable after splitting it into 10/15 minutes bursts. The most interesting talk for me was that of Putrino. He wasn't talking about any findings, just that they've set up a facility to study post-infectious or infectious diseases with an aim to make treatments available as quickly as possible. If I'm correct they're having both research and clinical work in one facility. So if something's found to work they'll start treating patients with it and scale from there. Goes for LC, ME, Lyme and a number of other diseases I forgot about.

Second thing of note to me was that several scientists mentioned VZV and SLE. Having someone with SLE in the family I'm quite curious to see what comes out of that. It's as bad as M.E. and LC from what I have seen.
 
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