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Recover Long Covid workshop Sept 23-25
- Thread starter Jaybee00
- Start date
I’m registered but not watching—2 reasons.
1-A relative is visiting
2- I don’t want to get triggered by hearing people who haven’t read the MECFS literature and are just reinventing the wheel.
Some highlights from his thread so far (my emphases) —
4/ Long COVID is introduced as a team effort. People will disagree with each other and we must remain respectful.
It is projected to affect $1 trillion. 5-12% are affected. COVID has not gone away. Numbers are high with test positivity and hospital admissions. Wastewater helps.
9/ Ongoing scientific meetings as an annual meeting at least. Periodic webinars to share findings from new clinical trial program
13/ Org structure by Joseph Breen. Hopes to bring ME/CFS experience to Long COVID.
Worked closely with other institutions to synergize further.
Transparency and input has been a challenge. Especially to recognize the burden in the community.
18/ Operations will use NIAID resources to design and conduct the trials based on established mechanisms.
Ensure decisions are made with oversight by committee and patient community.
19/ A comment is made about the importance of pediatrics being included. Gratitude shown to help the kids. How much will kids cost with long covid over the lifespan? Trillions, not trillion
26/ A third patient representative was a former flight attendant, yoga instructor, etc. Got involved with RECOVER, shares a video showing her life before and after. Feels like a science experiment. Still asking the same questions 4 years later.
27/ NIAID director invites the three reps to ask questions to executives. Acknowledges their harrowing journeys and thanks them. A slogan proposed of “Nothing about us without us” which was used way earlier in Long COVID too(i remember this personally)
31/ NASEM committee presents definition to support clinical trials.
Patients were there first. Clinicians needed to learn. Expresses the long tail after infection.
No consensus early. Lots of terms internationally. Made it difficult to make progress, manage, surveillance, etc
34/ Acknowledgment that mild or asymptomatic infection can lead to long COVID.
Major challenges were lack of testing early on, lack of vaccines, and no biomarker being the fundamental problem.
45/ A point of the lack of providers acknowledging Long COVID may lead to disparities and how can we address this?
The word is not out even 4 years now. Some are familiar but we need to think about partners in federal agencies to do educational campaigns.
46/ A comment that maybe it should be required for license.
50/ Ziyad Al-Aly emphasizes the 400 million number and it growing. The cost continuing to grow too likely to be an underestimate of $1 trillion.
Zero treatments and emphasizes how this group will change that based on a policy roadmap in addition to RECOVER-TLC.
51/ He continues discussing the research roadmap and talks about the community input.
It affects all organs.
We need better therapeutics like antivirals.
Drop the CBT
Talk about ME/CFS
Safe spaces
Education
52/ He emphasizes patients were right the entire time. That many experts were wrong. To use empiricism, biomarkers, IACCIs, and communicate uncertainty.
To always listen to the patients. That’s rule number 1
63/ Major challenge is identifying a true control given prevalence around the world. Using pre covid data and other exposures to ensure long COVID status.
Peluso talks about biomarkers and the bio specimen repository’s purpose to influence the future plans.
Can look at so much
64/ Leora talks about all the techniques to use with these samples.
Discusses following people with time to see how things change.
A big ask to centralize data. Pushback on what is the best model to do this and scale it out.
65/ Pediatricians are afraid to diagnose long covid because they don’t know what it is and it seems there’s a stigma around it.
Education, EHR, and pattern recognition is crucial.
67/ Michael VanElzakker talks about neuroinflammation. He covers his paper from July. Suggests microglia which were thought they are just “glue”. They are sensitive to pathogens, cytokines, etc.
They activate and change phenotype to signal translocator proteins.
68/ With pre covid controls they compared with a PET scanner and found activation of these translocator proteins in the brain.
Elevated in all PASC.
Took blood before scan and found 7 markers of vascular damage. Fibrinogen was correlated to signal.
69/ Using CRP or cytokines they didn’t find correlation. He calls out the UCSF paper of fibrin of plasma + spike.
Reservoir may produce spike circulating causing microclot. They are working to crack them open and see what’s inside.
NETs are activating with platelets.
85/ PJ Utz discusses bio repositories and biomarkers by pathway.
RECOVER has done a robust job collecting every human specimen at many time points.
About a million bio specimens. Available for distribution.
89/ PJ mentions his godmother died of long covid complications and that many pivoted their careers to research this.
rvallee
Senior Member (Voting Rights)
You're not in traffic. You are traffic. Always.
Want to reduce stigma? Stop engaging in it. You can teach that to kindergartners and most will get it after repeating it only twice.
Nightsong
Senior Member (Voting Rights)
A RECOVER-TLC blog from The Sick Times:
https://thesicktimes.org/2024/09/23...he-recover-treating-long-covid-kickoff-event/
https://thesicktimes.org/2024/09/23...he-recover-treating-long-covid-kickoff-event/
rvallee
Senior Member (Voting Rights)
They have 1M+ samples waiting to be analyzed? Waiting for what?! They don't seem to have much of a plan in place.
From the talks we can say that after 4.5 years of Long Covid, there are more researchers and clinicians interested in solving this, mostly it seems out of personal motivation. There is slightly more factual discussion, and the NIH director is less wishy-washy about it, but nothing to show for it. It seems to be all that can be said. The overall effort is simply mediocre and stuck in the same place as things were 35 years ago when the whole thing was trashed because the psychiatrists took over and ruined everything.
And right now it's not as if the same thing can't happen. By volume biopsychosocial garbage still dominates where it counts: when a patient sees a clinician.
From the talks we can say that after 4.5 years of Long Covid, there are more researchers and clinicians interested in solving this, mostly it seems out of personal motivation. There is slightly more factual discussion, and the NIH director is less wishy-washy about it, but nothing to show for it. It seems to be all that can be said. The overall effort is simply mediocre and stuck in the same place as things were 35 years ago when the whole thing was trashed because the psychiatrists took over and ruined everything.
And right now it's not as if the same thing can't happen. By volume biopsychosocial garbage still dominates where it counts: when a patient sees a clinician.
Probably quite pointless anyways to analyse biosamples when you're comparing someone who had a cough for 8 weeks, with someone who had a stroke, with someone who has PICS, with someone who suffers from ME/CFS.
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"Concepts of a plan" ?
Is there a link to this that isn’t through Xitter