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I hear you, and I'm accountable. I can phrase better, when I meant immediate threat of being gunned down in broad daylight versus implications of the book but I honestly couldn't find the right words to put down (both clearly pose a threat to health, safety, well-being, justice). I am remorseful...

@V.R.T. I agree with you on all of that. Sincere apologies in not trying to invalidate. I share the anger on the book, and how Wessely was able to use any influence. It's beyond maddening and this specific explanation does help me see that clearer in that way. I shake my head how this is...

Really appreciate that @Trish and appreciate you

Thanks @Trish. I understand the outrage of this book, and share that severe disappointment. It's not okay. But it's just hard to get there emotionally right now, when I live less than 15 minutes from where Renee Good & Alex Pretti were murdered by our own federal government (and then lied...

@dave30th Thanks for this write-up. Thanks for calling out the atrocities playing out in Minneapolis, too. I've been taken aback a little bit if those in the ME/LC community (stateside and abroad) aren't seeing or comprehending what is transpiring in MN. This has ripples to trust in federal...

Boston Globe: 'Daughter of Ben Affleck and Jennifer Garner calls for action against long COVID at United Nations' 'Violet Affleck, the daughter of actors Ben Affleck and Jennifer Garner, spoke about the dangers of long COVID and the importance of clean air at the United Nations headquarters in...

Passing along. 'The University of Florida in United States invites applications for vacant Postdoctoral Positions’ (posted 7/15/25) 'An NIH-funded postdoctoral position is available in the Fatigue and Underlying Neurobiology (FUN) Lab, directed by Dr. Agostina Casamento-Moran within the...

@DHagen Off the top of my head: These were actions committed to at the Roundtable: - ARPA-H LC program - Pharma roundtable How can patient advocates be involved in this? How can we collaborate and be centered in this strategic plan that the ARPA-H Director said would be formulated...

i may be biased but I think there’s some sort of light with ARPA-H. Of course my faith in anything bureaucratic is exceedingly low, but I’m curious to see this strategic plan that will be going out to the community in a few weeks time (allegedly). Also Sen. Young seems determined to move...

Some excerpts from the 2nd half of the HHS LC Roundtable (just getting to now): Jason Roos, ARPA-H Director: "This is a problem we all have to tackle together...I'm here today to listen...how do we maximize the use of our resources? We are committed to moving the needle..." Bhattacharya: "The...

Pulled out some excerpts so far of roundtable. RFK: "We've already put $1.15 billion into NIH to solve Long COVID, and we've got literally nothing from it." Makary: "We've spent $1.5 billion with essentially nothing to show for those dollars allocated...in the end people suffering with the...

Colorado: 'Lt. Governor Dianne Primavera and National Jewish Health Host Long COVID Roundtable to Advance Care and Collaboration' 'Lt. Governor Dianne Primavera joined National Jewish Health today for a Long COVID Roundtable and clinic tour, bringing together leading researchers, health care...

Sharing for tomorrow... When: 9/18, 2PM ET Link to watch:

MDH is starting their focus groups this week that includes leadership of the state health department & those with lived experience of LC & ME "with the purpose of this opportunity to help inform statewide recommendations to better support people with post-viral chronic conditions." Hopefully...

10/31/25: University of Michigan, '2025 IACC Long Covid Case Competition' 'A student-led initiative at the University of Michigan aiming to raise awareness and drive industry engagement around infection-associated chronic conditions (IACC) like Long Covid, Postural Orthostatic Tachycardia...

Of the RECOVER Pathobiology Studies, I'm most curious on the 'Vascular metabolic dysfunction in skeletal muscle for explaining post-exertional malaise in PASC’ led by Robert Motl out of University of Illinois. I believe their target date for publication is late 2026. I know the study is using a...

C&EN by Rowan Walrath :'NIH plans to test GLP-1s, other drugs for long COVID' 'The RECOVER initiative is plotting new clinical trials' "We need commitment. We need candor. Patience is growing thin." - Mike Zissis, long COVID patient advocate “I’ll add a few words,” Zissis continued. “Urgency...

9/10/25: 'David Tuller Interview with Ian Lipkin' Covers Columbia University's Center for Infection and Immunity (CII) recent ME paper on heightened innate immunity Lipkin: "So our goal is to try to get to precision medicine with ME/CFS. And I think we're going to get there by using various...

9/10/25, The Cribsiders Pediatric Podcast: 'Long Story Short' 'In this episode, we’re joined by Dr. Peter Rowe from Johns Hopkins to unpack the recognition, diagnosis and treatment of Long COVID in pediatric settings.' Host: "I think one of the things that Long COVID has, or the COVID pandemic...

STAT News: 'Reforming NIH: A blueprint for 21st-century medical research' 'Bust the silos, incentivize bold ideas, and other ways to transform a tired institution' 'NIH has been criticized for a lack of full transparency and accountability'