NIH Long Covid meeting September 23-25 2024

J

Jaybee00

Senior Member (Voting Rights)
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Jaybee00 said:
If they had any interest in addressing Covid triggered MECFS, then this is really bad. Like maybe two people here have any expertise in MECFS. I’m not happy. Somebody calm me down.
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I went through peoples names. If they had involvement in ME research or shown awareness of either ME or PASC with PEM in interviews, I bolded their names and included links. 19 are ME aware or expert, and 24 have not published or spoken about ME that I could find. I left out two people from pharma and some of the NIH names / advocates we already know.

Julie Gerberding, FNIH, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482157/, https://www.nature.com/news/2006/060417/full/news060417-8.html
Lindsey Baden, BWH/Harvard
Dr. Jerry Krishnan, University of Illinois at Chicago
Dr. Sharon Saydah, CDC, https://www.sciencedaily.com/releases/2024/07/240724123010.htm
Dr. Serena Spudich, Yale, https://www.yalemedicine.org/news/how-to-manage-long-covid-brain-fog
Dr. Ian Simon, DHHS/OASH https://thesicktimes.org/2024/02/27...s-office-of-long-covid-research-and-practice/
Dr. Mike Sneller, NIAID
Dr. Ziyad Al-Aly, VA/Wash U
Dr. Leora Horwitz, NYU, https://jamanetwork.com/journals/jama/fullarticle/2805540
Dr. Igor J. Koralnik, M.D, Northwestern University
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8366804.1/
Dr. Melissa Stockwell, Columbia University (talks about PEM in this article) https://thesicktimes.org/2024/02/13...hildren-how-recover-aims-to-answer-questions/
Dr. Helen Ward, Imperial College
Dr. Simon Pollett, DoD
Dr. Michael Peluso, UCSF, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10543503/
Dr. P. J. Utz, Stanford
Dr. Harlan Krumholz, Yale,
https://medicine.yale.edu/news-arti...rly-understood-ailments-like-chronic-fatigue/
Dr. Resia Pretorius, Stellenbosch University
Dr. Alba Azola, https://www.linkedin.com/in/alba-azola-640417129
Dr. Stephen Deeks, https://solvecfs.org/event/lessons-...ew-hope-for-treating-post-infection-diseases/
Dr. Kanecia Zimmerman, Duke
Dr. Upinder Singh, University of Iowa, https://domannualreports.stanford.e...e-and-answers-at-stanfords-long-covid-clinic/
Dr. Eldrin F. Lewis, Stanford
Dr. Julia Moore Vogel, Scripps, https://www.linkedin.com/posts/juli...udy-scripps-activity-7173018706699046912-X8kn
Dr. Heather Stone, FDA
Dr. Timothy G. Buchman, Emory
Dr. Stacey Adam, FNIH
Dr. Josh Fessel, NCATS
Dr. Sarah Read, NIAID
Dr. Sharon Saydah, CDC, https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2821459
Dr. Sally Hodder, West Virginia University
Dr. Priscilla Hsue, UCLA
Dr. Christopher McAleer, AIM Immunotech
Dr. Thomas F. Patterson, UT San Antonio
Dr. Lawrence Fine, NHLBI
Dr. Dean Follmann, NIAID
Dr. Alison K. Cohen, UCSF, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10543503/, https://www.researchgate.net/public...nnective_tissue_disorders_a_literature_review
Dr. Linda Geng, Stanford, https://domannualreports.stanford.e...e-and-answers-at-stanfords-long-covid-clinic/
Dr. Adrian Hernandez, Duke
Dr. Roberta DeBiasi, Children's National
Dr. Gail Pearson, NHLB
Dr. Sindhu Mohandas, Children's Hospital Los Angeles
Dr. Jerry Krishnan, University of Illinois at Chicago
Dr. Catherine Blish, Stanford — advisor to OMF Stanford working group https://www.omf.ngo/collaborative-research-center-stanford-update/
 
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Jaybee00 said:
At the risk of getting mods mad—I’m making this a new thread.

This is the agenda for this meeting. https://recovercovid.org/sites/default/files/docs/RECOVER-TLC_Workshop-Agenda.pdf

If they had any interest in addressing Covid triggered MECFS, then this is really bad. Like maybe two people here have any expertise in MECFS. I’m not happy. Somebody calm me down.
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:hug:
not looked yet but thanks for heads up
I now feel like when you don’t know whether to peer between the finger of your hands you put over your eyes fir a horror film (although as I can’t watch those at all then a scene that came up unexpectedly in something that promised me it wasn’t horror)
 
I think that agenda encompasses an abundance of knowledge with the individuals asked to participate, but to each their own and of course will reserve judgment until the conference commences.

I have had nothing but positive interactions with Davenport, Seltzer, Peter Rowe, Al-Aly, Meriquez Vázquez, McCorkell, Krishnan, Koralnik, Azola, Krumholz, Davis, Utz, Deeks, Peluso, Moore Vogel, Patterson, Geng, Breen, and Singh. This is just my experience, but each of those individuals to me, displayed a pretty apt knowledge of ME, in my opinion (and from what I have visibility to, their track record would probably reaffirm that notion).

I’d encourage to not slander this whole group (or questioning ME expertise) before they even take the stage, but just my two cents.

I’d heed your own advice & calm down - be your own critic as a virtual attendee of the event before going overboard on this. Then make your judgement. You can always write to NIH leadership on your thoughts on this (or to your elected officials) as well.
 
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And in the non-expert participants I notice many who are very well-versed. Not so bad considering the awful start. Should be a lot better, easily, but compared to the usual input this is a bit above average.

It's frustrating that they are taking the longest way around, the profession is so heavily invested in finding anything that veers the whole thing off and leaves us behind, but that's the only way it can happen. This is mostly a political process, about managing perceptions, with science a distant third after the cultural ego issues they have to get over.

The only question is whether this is enough to get to the starting line, or if money runs out before they get around to doing real work. Which doesn't look likely.

What would be really great here would be to convey the simple message that leaving us out, and the same is true of other chronic illnesses, IBS for example is very prevalent in LC, means they leave everyone out, that the whole thing will fail and they will end up helping no one at all. It will mostly fall on deaf ears but it's true and saying it out loud is still important in a context in which it will come back to haunt them.
 
shak8 said:
I wish Tonix would give up on that. They've been at the sublingual flexeril for FM treatment for YEARS showing nil to poor efficacy.
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Ar en't the results of the RESILIENT study quite significant though, or do you consider that poor efficiency [no offense, genuine question]?
https://www.healthrising.org/blog/2024/04/15/tonix-tomnya-fibromyalgia-sleep-pain/

Meanwhile, they are going ahead with FDA approval:
https://ir.tonixpharma.com/news-eve...ceuticals-announces-that-fda-will-not-require
 
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Kronos said:
Ar en't the results of the RESILIENT study quite significant though, or do you consider that poor efficiency [no offense, genuine question]?
https://www.healthrising.org/blog/2024/04/15/tonix-tomnya-fibromyalgia-sleep-pain/

Meanwhile, they are going ahead with FDA approval:
https://ir.tonixpharma.com/news-eve...ceuticals-announces-that-fda-will-not-require
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Thanks for bringing this up @Kronos. I didn't realize there had more trials with stronger doses.

Here's Tonix's report of the trial. From FM researchers that I've read, they consider a 50-60% mean pain reduction significant.

Until I see a published report in a medical journal, I won't know how meaningful the pain reduction might be.

https://ir.tonixpharma.com/news-eve...harmaceuticals-announces-highly-statistically



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3/17/25, NIH: “IRP’s Paul Hwang Discovers How Muscle Cells Gear Up for Training”

‘Dr. Hwang’s lab is also looking at a gene, WASF3, that disrupts the function of mitochondria, making muscle cells unable to accommodate exercise in people with chronic fatigue syndrome’

“It’s really hard to plan for discovery; instead, we follow the science, or, in this case, we follow the molecules,” Dr. Hwang says. “That’s one of the great things about NIH: we’re given the freedom to follow the science, and with my clinical background, do translational studies that bring clinical relevance to our findings about human biology.”

https://irp.nih.gov/blog/post/2025/03/working-out-the-chemistry-of-exercise-endurance
 
MedPage Today: 'Will Memoli Be the Next NIAID Director?'

"During an on-camera interview with CBS News last week, HHS Secretary Robert F. Kennedy Jr. said that Matthew Memoli, MD -- currently the principal deputy director at NIH -- will be the next director of the National Institute of Allergy and Infectious Diseases (NIAID)."

"Memoli, "the top flu researcher at NIH, is going to be running NIAID," Kennedy said in response to a question from Jon LaPook, MD, CBS News chief medical correspondent, about who is making decisions about NIH research.”
 
Sharing for sight

From Sick Times newsletter:
  • An NIH study is assessing whether the tracer 11C-PS13 — a molecule injected into the body before an imaging scan — can help identify inflammation in people with neurological Long COVID. The study will enroll 60 people in Bethesda, Maryland, and will include up to five clinic visits over 11-14 weeks. Contact: Tara Turon, tara.turon@nih.gov.
 
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