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.
Nath is the only dedicated ME/CFS speaker and they have also invited Tonix pharma that is trying to make big money off of a sublingual formulation of cyclobenzaprine. https://www.tonixpharma.com/tnx-102-sl/
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/
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.
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.
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.
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
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 (edited)
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.
