Demystifying Long COVID International Conference Dec 2023

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EndME

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The conference "Demystifying Long COVID International Conference 2023" is talking place from 7.12.2023-12.12.2023 in Madrid, Spain. Attendance for patients with Long-COVID is free of charge (both online and in-person). Patients with Long-COVID can register free of charge by writing an email to Hana.Agustine@amededu.com. The program can be found here.

Speakers at the conference include
  • Daniel Kuritzkes
  • Monica Gandhi (let's see if she's changed her perspective on Long COVID only being able to be caused by a severe acute infection and predominantly effectiving elderly people)
  • Brent Appelman (from Rob Wusts group which also investigates ME/CFS) "Mitochondrial Dysfunction- COVID, Muscles and mitochondria"
  • Hung-Jen Chen (from Jeroen den Dunnen's group which also investigates ME/CFS) "Transfer of IgG of Long-COVID patients induces subgroup specific symptoms in mice"
  • Johan Van Wayenbergh "Blood transcriptomics reveal persistent SARS-CoV-2 RNA and candidate clinical biomarkers in a Belgian Long COVID cohort"
  • Upinder Singh (from the Paxlovid trial at Stanford which was terminated mid-way) "Nirmatrelvir/ritonavir for Treatment of Long COVID: What Does the Clinical Data Show"
 
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36:55 Opening — Daniel Kuritzkas
43:12 Defining the syndrome — Andrea Foulkes
1:13:15 Where the gaps are — Helen Ward
2:06:48 Long term impact on innate immune cells — Nicolas Huot
2:24:01 Blood transcriptomics reveal persistent RNA — Johan Van Weyenbergh
2:41:24 Cytokine profile associated with PCC — Marta Massanella
2:58:24 Transfer of IgG induces subgroup-specific symptoms in mice — Hune-Jen Chen
3:13:21 Improvement of immune dysregulation and hQoL at 24 months — Chan Phetsouphanh
3:30:00 LC prevalence, incidence and risk factors — Monica Gandhi
 
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In Helen Ward's talk on the gaps in LC knowledge, she reports responses from patients. Generally a very sensible and sympathetic talk with themes:
  • shift from counting to intervention
  • need for diagnostics, stratification and objective measures
  • lack of scientific understanding and god of the gaps (pseudoscience, psychosocial causation)
  • professional recognition and education, gaslighting
On the negative —

"The comment here that says you could mention 'the god of the gaps' - which wasn't one that I'd actually heard before, but thought was a good way of putting it. That the situation when a lack of scientific understanding leads to people believing in a supernatural deity, was the origin of it. But leads to the gaps, as it says here, being filled by pseudoscience, psychosocial theory — and this has led to gaps."

"Now I don't agree that psychosocial is necessarily pseudoscience [laughs] because psychological and social factors have a huge impact on the risks of and experience of disease. But I do agree that where there is a lack of clear diagnosis, clear pathogenesis and clear treatment, people are vulnerable and go and try all sorts of remedies that they either read about on the internet, they try, trial and error, self-experimentation."

Again, a failure to recognise that the profession itself is guilty of endlessly promoting pseudoscience, and that patients become vulnerable to the poor treatment recommendations or absence of treatments that inevitably result.

On the positive —

"We must work together to advocate for resources. [...] The UK has completely deprioritised Covid and Long Covid research. [...] Now you just compete with everyone else. And we know, we knew that from HIV, that does not work. When you have a new disease you actually need to invest in it and that is not happening."
 
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Here's the video for day two.

I found the talk from Brent Appelman, starting here, interesting. The first half is from a forthcoming study where they looked at muscle biopsies from LC patients and controls before and after a CPET.

They found focal necrosis in muscle in about 40% of LC patients after CPET, compared to roughly 10% of controls. Also infiltration of macrophages.

Lower OXPHOS in LC, lower TCA cycle metabolites:
upload_2023-12-8_21-56-0.png

N and spike protein found in muscle a year after infection, but no difference between LC and controls.

Amyloid containing deposits in muscles in LC, but not in capillaries or lymphatic vessels, so they aren't sure exactly where:
upload_2023-12-8_22-0-28.png

Q&A: They are replicating this study in ME patients, to finish in February. He thinks they will see similar results.
LC patients walked about 4k steps per day, controls 8k steps per day. These changes do not look like changes they have seen from a previous study on 2 months bedrest with European Space Agency.

The second half covers their paper: Prolonged indoleamine 2,3-dioxygenase-2 activity and associated cellular stress in post-acute sequelae of SARS-CoV-2 infection
 
SNT Gatchaman said:
"Now I don't agree that psychosocial is necessarily pseudoscience [laughs] because psychological and social factors have a huge impact on the risks of and experience of disease. But I do agree that where there is a lack of clear diagnosis, clear pathogenesis and clear treatment, people are vulnerable and go and try all sorts of remedies that they either read about on the internet, they try, trial and error, self-experimentation."
Click to expand...
There's a recent opinion piece in a Norway medical newspaper where a GP talks about patients having to learn to take care of themselves so they know when symptoms are serious enough that it it is necessary to see a doctor. I'm sure the problem are the patients, not that due to lack of knowledge in the healthcare system many patients have to come back again and again before getting their diagnosis..

And I can't forget the article "What doctors wish patients knew about masks" when healthcare is one huge institution where patients will repeatedly be told masks are useless, and I've seen more patients in high quality mask than I've seen healthcare (granted, rules in different hospitals may be so that only blue surgicals are allowed for staff).
 
So in all of this talk, of claiming to 'demystify' LC, has there been any mention of ME/CFS?

SNT Gatchaman said:
"Now I don't agree that psychosocial is necessarily pseudoscience [laughs] because psychological and social factors have a huge impact on the risks of and experience of disease. But I do agree that where there is a lack of clear diagnosis, clear pathogenesis and clear treatment, people are vulnerable and go and try all sorts of remedies that they either read about on the internet, they try, trial and error, self-experimentation."
Click to expand...
And what she doesn't say is that some of her colleagues in the research and medical systems will be the ones taking advantage of the uncertainty, by making up such things as the deconditioning model for ME/CFS, or FND, BDS, MUS, SSD, etc etc. All claimed to be based on psychosocial theories, so she didn't really demystify anything there.
 
Demystifying Long COVID International Conference 2023 | Day 3
www.youtube.com/watch?v=AP3qHM3Acz4

Program
  • "A Patient Perspective"
    • Chantal Britt
    • Pauline Oustric
  • "A Perspective from a Family Doctor" - Gemma Torrell
  • "A Two-Sided Coin: A Clinician and a Patient Perspective" - Annemarie Wensing
  • "A Perspective from an Infectious Diseases Doctor" - Giovanni Guaraldi
  • "COVID-OUT Study" - Carolyn Bramante
  • "Nirmatrelvir/ritonavir for Treatment of Long COVID: What Does the Clinical Data Show" - Upinder Singh
 
I think I'll give that one a miss. There might be some good talks eg Day 1, Session 2 on pathogenesis (Peluso, McAlpine, Fraser, Hanson, VanElzakker). But also they've included —

REGAIN Study: Clinical effectiveness of an online physical and mental health rehabilitation programme
Gordon McGregor, PhD
University Hospitals Coventry & Warwickshire NHS Trust, Coventry University, University of Warwick

Admittedly at the end of the last day. See thread.
 
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