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

Eleanor said:
Government by magical thinking.
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Unfortunately, this is exactly what has been written down and promoted by actual professionals. In textbooks teaching the new graduates, in supplementary training material, in guidance everywhere. What this actually is is medicine by magical thinking. Written down, defended and overhyped by every part of health care systems.

Here it's possible that this government would do this even if they were shouted at by most MDs that it's wrong, but the almost universal failure of the profession to get its shit together makes it all too easy. This is even how most physicians explain it: it's so easy to just send millions of people down the trash chute, you never see them again, or hear from them, well OK you do hear from them all the time and it's frustrating but after some time you just tune out the lamentations, every single one of those voices eventually stops anyway.
 
Sasha said:
Is there any possible biological rationale why an illness that's real in adults would be purely psychological in children?
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Oh they also think it's fake in adults. It's just an excuse, not a serious reason, so they don't need to say it here, but obviously we know this is why they do nothing. It's what they've been doing for decades: nothing.
 
rvallee said:
Oh they also think it's fake in adults. It's just an excuse, not a serious reason, so they don't need to say it here, but obviously we know this is why they do nothing. It's what they've been doing for decades: nothing.
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Then why fund the study? This really does seem to show a belief that it's real in adults, and psychological in children, otherwise none of the study would be getting funded.
 
Sasha said:
Then why fund the study? This really does seem to show a belief that it's real in adults, and psychological in children, otherwise none of the study would be getting funded.
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It’s about compromises no? Like people in power disagreeing. Many surely think the whole lot’s psychological, but they may have certain money theyre supposed to use to fund long covid research. it gets complicated fast.
 
V.R.T. said:
On a related note, did Altmann say anything else interesting about his studies in his talk?
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It was more an overview, history and call to arms talk. He showed QoL and employment data for their 1000 adult cohort (terrible as you'd expect). He emphasised not becoming siloed with our pet hypotheses and to keep options open and work together.

"During the last four or five years, evidence has appeared of variable quality for all of these. And so they all have some evidence base, some stronger than others. I guess my plea to all of us as a community is not to become tribal or siloed about them, to try and just pull together to try and work out what on Earth is going on. […] Four or five years later and 50,000 publications plus on PubMed later on long Covid, as a group we've learnt a lot and published a lot — we haven't done terrifically well at helping those 400 million people with long Covid."

He talked about the induction of autoimmunity and as a potential driver for symptoms. (Looking at HuProt arrays) —

"When we look at those, we do see clusters of auto-antibody specificities coming up together in a proportion of our patients. They're sometimes extracellular targets, often intracellular targets. Some of our referees have given us a hard time about that. So how can an antigen possibly be involved in an autoimmune disease if it's intracellular? Um, they're going to be horrified when they learn about diseases like lupus and Sjogren's and myositis and the targets in those."

"… often leads you to study T cell auto-antigen targets as well. […] Some of these auto-antigens with really good credentials in potential perturbations of immune responses. We're trying to follow up at the moment."

He did cover it not being "airborne-AIDS" —

"Clearly we sign up to [LC] being a disease of immune subversion […] I certainly feel that on social media and in my email in-box I'm confronted by a lot of people […] who feel that to explain the symptoms the immune system must be shot to pieces and SARS-CoV-2 must have destroyed the immune system. And unless I agree that long Covid is AIDS-like that I've somehow let people down. […] I do think there are immune subset differences, but I don't think it's remotely AIDS-like, I think these are quite nuanced disturbances."

On the things we need —

"In my life I've been involved in two of these, even harder than long COVID. […] This was moving from a complete dog's dinner to a situation where now we have 220 loci, some of them like HLA-B with 10584 alleles where we know them to the nearest nucleotide in any given population, for all their disease associations. […] And that started out in conferences like this […] And ditto all those CD antigens […] Could Sante Fe be known as the transformative moment when we all put our heads together and really did this job and showed that we can do as well for long COVID as we did for the HLA workshops and CD antigen workshops. And just get it sorted to open up the flood gates for all of those biomarkers that we need for the trials."
 
V.R.T. said:
I wonder where they are getting their advice from? Surely not a certain jolly prof who's chummy with this Labour faction?

Whoever it's coming from they are harming kids to an almost unthinkable degree.
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See eg Long COVID in children and young people: then and now (2025)

perhaps none of the above biological mechanisms explain long COVID. The persistence of symptoms is unexplained as in many postviral syndromes in children.
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Conflicts of interest
T.S. is Chair of the Health Research Authority and therefore recused himself from the Research Ethics Application.
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From Ezra Spier (LC Patient Advocate was at Keystone Symposium) on Bluesky:

'A couple important Long COVID clinical trial announcements from Keystone that I want to share!"

"1. BioVie has announced that they changed their protocol and are now allowing people who have had LC for more than 2 years to participate. Here’s the press release: investors.bioviepharma.com/news/news-de...More study sites have been added and more are still to come. More at addresslongcovid.com"

"2. Wes Ely announced that his National Institute of Aging-funded REVERSE-LC trial of baricitinib will now be cosponsored by NIAID as part of RECOVER-TLC and will expand from 4 to 15 sites. The sites are currently being selected, but more info on the trial is here: www.reversinglongcovid.org"

3. "Finally, just a comment from me: the researchers at the conference were incredibly enthusiastic and committed to the field. Funding, logistical, and scientific challenges remain, but the enthusiasm and creativity on display was so energizing (and I've got LC so that really means something)."

 
'Open Access Content & Highlights from Long COVID & Other Post-Acute Infection Syndromes Conference'

'These conditions, alongside others with less obvious triggers such as ME/CFS or chronic fatigue syndrome, have long been neglected and even dismissed as non-existent by doctors, scientists and the general public.

What is unprecedented, is the acknowledgement of this collection of mysterious and under-appreciated illnesses and the progress now being made in understanding them, thanks to the attention brought by Long COVID. Scientists from diverse fields across immunology, virology, neurobiology, cardiovascular disease and many others are converging to unravel the etiology behind these diseases, and their varied constellation of symptoms for which there have been no explanation for over a century.'
 
Thankyou. To respect the unpublished data of the respected authors - how do we properly quote, and discuss, this Open Access Content?

These scientists were required to approve this release of their conference input. So IF quoting the actual presentations, how do we protect their data, with all due respects?

The discussion video below is an Open-Access discussion with the panel of scientists. It is not priced, and sold, behind a pay wall, as an On Demand presentation video.

But it is from the conference, so does it contain unpublished data - "that individual's scientific results"? If so, do their results need protecting, and permission to quote?

As asked, nicely, here:

"Given the appetite for sharing scientific progress and research outcomes in the field to accelerate advances,

Keystone Symposia worked with Global Virus Network to produce and film an open-access panel discussion as part of the conference program.

In addition, the Closing Remarks are being released as a summary of advances and future directions resulting from this seminal meeting.

Keystone Symposia and the Long Covid meeting organizers encourage the broad sharing and distribution of these videos, to inform both patient and research communities of ongoing work in the field.

We thank the scientists for their approval of the release of this information, as required by our conference policies to ensure the protection of unpublished data

for more information see below:

"In particular we ask that all writers attending .... gain approval from a speaker (or poster presenter) prior to quoting or publishing that individual's scientific results.

This policy applies whether you are

.. a professional writer / journalist

or

.. a non-journalist blogging about the conference

or

.. otherwise sharing information among a group of individuals."

Meeting participants must abide by our Media Policy when sharing information about the conference

due to the sensitivity of unpublished data presented at our conferences.

This applies to all participation types: In-Person, Livestream, and On Demand.
.

This "more info" is info about protecting data being priced and sold - the scientists' unpublished data.

This extra info is given at the bottom of the Open Access web-page. Its given linked to On Demand presentation videos being sold. Its associated with the Open Access video.

So its not clear to me if it also applies to the Open Access video. I don't know if there is unpublished research data in the Open-Access discussion video, so not to be quoted without permission?

Confidentiality was discussed on page 1 of this thread with:

* some Conference Policies - given here

* a Global Alliance consensus on the copyright of conference papers - given here as also linked here

Given by @SNT Gatchaman, @Utsikt, and @Stuart79,

Conference Participant Dr. Maggie Bartlett said:
Beyond the science itself,

what made the Long Covid conference transformative was its structure.

Patient–scientist co-leadership

ensured research questions aligned with lived experience.

Discussions were not only about mechanisms

but about action:

.. diagnostics

.. therapeutics

.. systems change.

This altered the tone, shifting debate

from

incremental refinements

toward

urgent problem-solving.
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Dakota15 said:
'Open Access Content
&
Highlights from
Long COVID & Other Post-Acute Infection Syndromes
Conference'
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Video of Panel Discussion on 


Long Covid:

-- Mechanisms, Diagnosis & Emerging Treatments


developed in collaboration with the Global Virus Network


This panel convened experts to address
key aspects of Long Covid, including

.. pathophysiology

.. diagnostic challenges

.. long-term management strategies

.. policy implications

The discussion also explored

the intersection of Long Covid with
social determinants of

.. health,

.. equitable care delivery

.. the impact of ongoing research initiatives.

.. foster interdisciplinary dialogue,

.. identify knowledge gaps

.. generate actionable insights to improve patient outcomes and inform public health strategies
wow, thats a plan offering what the British M.E Delivery Plan offers: to generate actionables to educate the National Health Service to improve outcomes. So which plan will adopt the other plan?

I think Britain can't inform public health strategy since maybe Britain cancelled the Public Health Service, before - or in preparation for - a pandemic. So maybe I blame top-heavy middle management.

Expert panelists include:

2 Panel Moderators:-

Maggie Bartlett
Global Virus Network
&
Johns Hopkins School of Public Health

Sten H. Vermund, 
University of South Florida

===============

Akiko Iwasaki, 
Yale University / HHMI

Anders G. Vahlne, 
Karolinska Institutet

Resia Pretorius, 
Stellenbosch University

Janet M Mullington, 
BIDMC
&
Harvard Medical School

Annukka A Antar, 
Johns Hopkins School of Medicine



Edits to

- remove a space, add a comma, remove a comma,

- put L into long Covid, and change the niggly Long COVID to Long Covid

- give the context being Open Access Content, and quote Dakota15 to give a link for the 2 videos etc, on the Symposium website

- aaaarrrrghhhh reverse the sequencing of the phrases in most of my sentences today...

- link to local & global rules on conference-confidentiality, found on page 1 of this thread
 
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bicentennial said:
Thankyou. To respect the unpublished data of the respected authors - how do we properly quote, and discuss, this Open Access Content?
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It's fine to discuss whatever is in the open access video approved by the speakers. What we need to avoid revealing is material from individual speakers that was in their talks but hasn't been made open access. So people who attended the event and watched the talks aren't allowed to publish screenshots or copies of data from those talks.
 
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