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The Recover-TLC Workshop is now on YouTube. It's divided into 43 videos. Edited to add link to workshop schedule in case it helps people find what they want to watch. https://recovercovid.org/sites/default/files/docs/RECOVER-TLC_Workshop-Agenda.pdf

Copied from the YouTube transcript. I can't listen again to correct the transcript. Thread: Oxaloacetate Treatment For Mental And Physical Fatigue In (ME/CFS) and Long-COVID fatigue patients, 2022, Cash and Kaufman...

In addition to MCAS, SIBO and Leaky Gut, he also talked about Inflammation, Autoimmunity, hEDS, CCI and POTS. Regarding POTS, what I thought I heard him say (I can't double check because it's not on YouTube now) is that all Long COVID patients (probably in reference to the patients that he has...

Dr. David Kaufman is her doctor. I listened to the pre-recorded interview with him and found it very disturbing.

Jeannette said: But the issue wasn't that they didn't find POTS in the patients. The issue is that the healthy controls also had POTS. The discussion about orthostatic intolerance continues here Orthostatic Intolerance in PwME (POTS?/NMH?)

Moved post Live video today at 10:00 am. https://www.appropriations.senate.gov/hearings/a-review-of-the-presidents-fiscal-year-2025-budget-request-for-the-national-institutes-of-health Subcommittee Hearing A Review of the President’s Fiscal Year 2025 Budget Request for the National Institutes...

Thank you, @Grigor. I'm so grateful that you use your extremely limited energy to do such outstanding advocacy work! :thumbup: :trophy@:heart:

Post-Exertional Neuroimmune Exhaustion as a Bioenergetic Condition, MECFS &Long Covid

It’s very difficult where I live and I’ve had to deal with escalating things no one in my condition should have to deal with. I hadn’t planned on writing the NIH questions but ended up jotting some things down the best I could before I went to bed the night before the symposium and sent them...

It's available to watch now. ME/CFS Symposium https://videocast.nih.gov/watch=54675

I can copy and paste now. I'm not sure what happened earlier.

Todd Davenport @sunsopeningband Hey @NatureComms. When will you explain why your editors think it’s acceptable for Dr. Anthony Komaroff to be listed as participating as a case adjudicator, acknowledged as providing helpful comments on the manuscript, and listed as a peer reviewer of the Walitt...

If that's how he meant it, he should have been calling out the BS at the symposium and his colleague Mady Hornig should have called it out in the press. Lipkin should be calling out his other colleague Komaroff for Komaroff's constant fence straddling career including promoting the most resent...

Lipkin: To the patients, the people with ME/CFS, people with Long COVID, you are heard. We don’t have enough resources to do what we need to do and if I’ve learned anything at 40 years of doing this kind of work, you need better advocates. The squeaky wheel gets the grease. Komaroff: Indeed...

I don't know what the accusation is based on. I hope they are reading the threads here too! Even if they aren't, I'm sure members here as well as others who read the threads here have been giving them plenty of feedback.

In addition to what others have said, we were told we didn't understand the language of neurology and our picking things apart was bad for their morale. Edited spelling.

I don't understand why the healthy controls were fatigued doing the cognitive testing. Why would healthy people be fatigued doing their simple tests?

I can't believe how they are talking about us already! :banghead:

My concern is that people who would otherwise participate in advocacy and email their Members of Congress may now not do so because of the misinformation that Janet Dafoe is spreading. Has anyone called her out on Twitter?