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@Wilhelmina Jenkins, does this mean that ARPA-H is (likely) dead in the water for now? https://www.politico.com/news/2021/10/08/biden-biomedical-research-agency-spending-bill-515666...

Just wanted to pass here that the Pulminary Wellness Foundation's documentary film, “Long Haul” started yesterday and will run from October 11-24, 2021 as part of the Urban Mediamakers Film Festival. If interested: you can screen the complete film at https://www.urbanflixtogo.com as part of a...

I was just reading on ARPA-H yesterday while I try to get up to speed on it. When it says "under consideration" by US Congress, do we know what next steps are? How would this get passed?

https://www.nejm.org/doi/full/10.1056/NEJMp2109285 "Confronting Our Next National Health Disaster — Long-Haul Covid" This is an exceedingly well-done feature by New England Journal of Medicine, which is among the most prestigious peer-reviewed medical journals around. “The health care...

https://www.healthrising.org/blog/2021/08/14/chronic-fatigue-risk-coronavirus-infection/ "Nancy Klimas, by the way, has begun a study assessing both symptomatic and immune responses to the mRNA vaccines in ME/CFS patients that should help us understand why some people are better with the...

(Because this also mentions Long COVID/PASC, wanted to share, mods feel free to move if best fit elsewhere) Passing along this Twitter thread today from a Mayo Clinic MD on Severe ME Awareness Day. Many of us know how difficult it has been to inspire change at this specific facility, so this...

Because it was in an e-mail format (sent 2 days ago), I will try to screenshot & share:

You + ME surveyed 208 ME patients regarding the vaccine. 15% said they are "somewhat worse" or "significantly worse". Nova Southeastern also expressed that Dr. Klimas is aware something has gone amiss in a subset of patients, and would be "making a statement soon". Not sure what that entails...

I may be late to the game with this convo - but don't you think at least with Dr. Patterson's background, he deserves some benefit of the doubt before we label him snake-oil, no? Maybe it's my blinders on, but I can't imagine the former Medical Director of Diagnostic Virology at Stanford...

I thought I'd post the tool from Solve in case it hadn't been posted, that takes less than 60 seconds to complete for any US citizens, that will go directly to your Representatives asking to support and sign...

Sharing for visibility with vaccines. ME/CFS and the Coronavirus Vaccine: Is There a Better Way? https://www.healthrising.org/blog/2...-vaccine-chronic-fatigue-syndrome-better-way/ "Most people with ME/CFS appear to get through the vaccination process fine and a surprising number of people...

https://www.globenewswire.com/news-release/2021/06/21/2250254/19782/en/CytoDyn-Inc-Announces-Positive-Preliminary-Results-of-Unblinded-Data-from-Long-Haulers-Trial-Showing-Greater-Improvement-in-Leronlimab-Group-over-Placebo-in-18-of-24-Symptoms.html "CytoDyn Inc. Announces Positive Preliminary...

Just curious, what happened in this reference to Dr. Peterson?

I appreciate your input @Jonathan Edwards. I really do. My doctors believe MCAS is part of my ME/CFS picture, but I respect everyone's opinion and viewpoint. I know this field is anything but simple to dissect. I don't intend to de-rail this thread, and I know you've posted a document...

This thread has been split from Concerns about craniocervical instability surgery in ME/CFS ....I know you have a lot of pull on here @Jonathan Edwards, but I didn't know you didn't believe in MCAS being a real diagnosis. As I live in the States, I have to say that there seem to be a lot of...

..did anyone pay to register/watch then? Just curious.

Just sharing this article since Natural Killer Cells have long been associated with ME/CFS (and I live in Minnesota, USA hence how I came across it). From the StarTribune: https://www.startribune.com/univers...42/?ref=nl&om_rid=3520749001&om_mid=979813833 " "University of Minnesota turns...

(my fault, totally just saw this is a duplicate post) Just sharing from a post I saw on Phoenix Rising: Stanford (California, USA) is hosting a "fire side chat" with Dr. Fauci on Monday. There is an opportunity to submit questions on the link below. I just submitted a question on Covid-19...

My ME trigger in April 2017 was sinusitis / pressure behind the eyes / forehead congestion. I never had a flu-like feeling, temperature, cough, etc.

@Jonathan Edwards I'm sure you've probably answered it elsewhere so apologies if so (and I know it can't be answered definitively obviously) but what do you think caused, say, the Incline Village outbreak?