Keystone symposium Long COVID and Other Post-Acute Infection Syndromes August 10-13 2025

Cort Johnson is live tweeting the conference

Apparently Nath has an IVIG trial. Did we know this?



Keystone Long COVID POST Acute Infection Syndromes Symposium -neuropathy - #longCOVID #MECFS - Nath is in the midst of his own IVIG LC trial :). Melamed says benefits generally show 3-6 months; most patients do not want to go off IVIG. RECOVER also doing IVIG. LC trial.
 
Michelle Scoullar (paediatrician) from the Burnet Institute runs the paediatric side of a private long covid clinic in Australia. She's seen just over 60 patients, the youngest 5 ("definitely long Covid"). Relatively equal sex distribution which she suspects is likely to reflect pre-puberty/lack of hormonal effect. 63% meet POTS criteria (>40 bpm) with another 11% >30 bpm.
 
I feel bad about this—Cort probably had about 200 posts summarizing the conference—this sucks.
I’ve never been to a medical conference, but I can’t really see how it would be appropriate to live-tweet the entire thing. There are especially two things I would be concerned about: sharing info that wasn’t supposed to be shared widely at the moment, and misrepresenting or misquoting the content.
 
I have mixed feelings. Keystone was always in some sense designed to serve a "privileged" in crowd. I detest secrecy in science. But if delegates are putting out distorted information in the era of social media it begins to be legit.
 
Keystone Symposia said:
By making virtual viewing possible through Livestream and On Demand,

Keystone Symposia seeks to provide

- to the remote audience

access in a dynamic engaging format

- to most or all of the main presentations of the meeting

Access to the latest scientific advances

- should not be restricted based on country of origin, residence or citizenship.

We aim to empower scientists locally and globally

- to continue to drive science and medicine forward

- by connecting with these discoveries and with each other,

- on the virtual platform.
  • $175 USD
    ($150 discount off regular rate)
That is the the student discount. Maybe I am not that kind of student. My browser won't load the page for registration so I can't find out. Maybe a whiparound

Livestream and On Demand meeting products:

On Demand registration alone does  NOT include a livestream component.

On Demand recordings are available approximately 1-2 weeks after the meeting has concluded. Access lasts for a period of 6 months from the end of the meeting.

Livestream registration includes On Demand access.

Plenary session and workshops that occur in the main conference room will be broadcast;

roundtables, poster sessions, and events in breakout rooms are not typically included in the livestream.

Both products include networking capabilities ??? through the event mobile app.

In some cases, speakers may opt out of the Livestream and / or On Demand products.
 
Keystone Long COVID POST Acute Infection Syndromes Symposium - #longCOVID #MECFS - My coverage of the Keystone conference has ended, and all tweets are being removed as per the organizers' request/order.
This is insane. If I understand correctly, they charge a hefty fee to attend, allow anyone who will pay their toll to attend, and then they censor public discussion of the information presented. Unless they have some sort of NDA in their licensing agreement for attendees, I can’t see any legitimate basis for demanding deletion of social media posts. I’m generally not a fan of public shaming/cancel culture, but it seems warranted here.
 
From the Conference Policies —

Keystone Symposia supports the broad dissemination of research and is happy to help promote any announcements related to presentations at our conferences on social media. Tag us on Twitter: @KeystoneSymp and use the meeting hashtag, and we will retweet your announcement!

Copyrighted Materials:
Keystone Symposia recorded sessions are copyrighted materials. Conference sessions, presentations or segments of thereof, may not be recorded, published, or otherwise reproduced without the permission of Keystone Symposia and the presenting author. Elements of posters, such as a figure, table or summary statement, presented at Keystone Symposia may only be published with the express written permission of the author. The data themselves are the property of the authors and study sponsors.
 
According to Global Conference Alliance Inc., conference papers (and presumably accompanying presentations) are covered by copyright. So Cort should have asked for permission.

A few images and quotes here and there would probably not have gotten the same reaction. 200+ posts probably tipped the scale.

 
According to Global Conference Alliance Inc., conference papers (and presumably accompanying presentations) are covered by copyright. So Cort should have asked for permission.

Copyright probably applies to posting photos of full slides, but it should have no impact over summarizing the information presented in X posts. Keystone needs to pick a lane. If the information is confidential, don’t try to profit by offering admission to the general public for a fee. Once they offer admission to the public, they have traded money for letting the cat out of the bag.
 
Without posting screenshots I'll quote from Emma Wall's (Francis Crick Institute / UCLH / StimulateICP) talk:

"An Innate Inflammatory Signature Is Consistently Enriched in the Plasma of Adults Living with Long COVID Across all Clinical Symptom Groups"

The factors that associate with faster recovery […] vaccine before or after the onset of long Covid.
The factors that were associated with non-recovery were fatigue, myalgia and postural symptoms. […] but the people with severe fatigue, a presenting FAS of 35 or more, they're more stuck

Regarding plasma proteomics —

We could see three clusters that separate out across PC1. […] This is not a problem with QC, not a problem with batch. These three clusters are real.

Are we looking at particular symptom clusters? And really interestingly we're not.

Comparing with a really well-matched control population (age, sex, time from last infection) —

We saw remarkable differential abundance in people living with long Covid.

Highlights TGF-β1, Thrombospondin-1 and Peptidylprolyl Isomerase A.

… when you've got 271 of them. So instead we put them in Reactome clustering algorithm to look at pathways. […] We found three really interesting clusters in our patient proteome. The first is around platelet activation and degranulation. The second is around Fc-gamma-mediated phagocytosis by macrophages. […] And the third is around membrane trafficking and vesicle transport. […] What are those macrophages eating? Are they eating what's in the vesicles? […] And are the platelets reacting to that?

And in the centre […] there's this really abundant rho-GTPases. […] suggesting there's a lot of cell activity, a lot of cell movement going on
 
The second is around Fc-gamma-mediated phagocytosis by macrophages.
What are those macrophages eating? Are they eating what's in the vesicles?

Following a question —

The thing I've really charged our proteomics team to detect is hybrid proteins because I wonder if there are circulating fragments of virus — are they bound to a plasma protein like amyloid? Like something else, making a hybrid protein that's driving inflammation.

@Jonathan Edwards
 
This all sounds like standard immunobabble to me I am afraid, tacking together things that could mean anything to support the mantra of today - inflammation, vehicles, amyloid...

One problem is that "Long Covid" will include people with all sorts of other lurking health problems because it is so grossly non-specific. There are bound to be differences between people attending a clinic and healthy controls.

What does "around endocytosis.. " mean? We want data, not preinterpreted in terms of someone's textbook vision of immunopathology.
 
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