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This is an absolutely fantastic idea - some of the drug trials are quite good (ivabradine, IVIG), and the NIH over the past year has received an additional $200 million for these trials. It also puts things into perspective. The intramural study was just $8 million, which is nothing in the...

I think it's actually really important to listen to Nath here. Good advocacy isn't necessarily about doing what is right and moral - it's about doing what most effectively gets you what you want. In my view several things are true at once. The intramural study was a complete mess. Walitt poses...

https://www.sciencedirect.com/science/article/abs/pii/S0022399924002204 Objective We aimed to identify clinically relevant clusters among patients with post-Covid-19 condition (PCC) and assess prognosis overall and within clusters. Methods Prospective cohort study of patients with PCC...

One other small detail I really like about the piece and that quote. When Parker talks about "anti-recovery activists," he's probably referring to patients, and drawing on the long-standing BPS trope of suggesting the ME debate consists of scientists (themselves) and patient-activists who at...

Yeah honestly from the BBC, which is generally very risk-averse and non-confrontational, I thought the article was as good as it could've been. I’d say the piece is what a damning BBC article looks like.

It honestly reminded me a tiny bit of the Prince Andrew interview - you’re delighted if you get a quote like that out of someone as a journalist. ‘Anti-recovery activist’ is so self-evidently ridiculous. The rest of the piece is quietly damning, and a quote like that coming from the horse’s...

To be fair, them including the quote about ‘anti recovery activists’ is probably more damning than anything they could have written. Making ppl look ridiculous using their own words is a v powerful journalistic tool.

I was very impressed by the article. It was stronger than what I'd expect from the BBC. It's quietly damning, which is always good for a journalistic piece. My favourite moments are: "I'm afraid now we've strayed very, very far from neuroscience," Dr Nord says, calling this an "abuse" of...

That does sound like a much healthier approach! I've heard of ppl using HR/HRV pacing in all kinds of ways: - I know quite a few ppl who do something quite similar to you - they have a smartwatch on all the time, but only check in with it once every couple of days or so. The data allows them to...

I have to say I personally hated using a heart rate monitor (a garmin watch) to pace. There were several things that really put me off it - a) I found it very difficult not to become slightly obsessive about it. Perhaps if I was less severe and had more distractions I'd have found this side of...

I don't think it's yet a formalised organisation, it's more a grassroots effort at the moment. There are more prominent members with large twitter followings, but I'm not aware of there being a defined leadership. I'm only partly "in the know" here - I'm not a part of the moonshot initiative...

So this was the state of play early yesterday @wingate . I've heard an unconfirmed rumour that Senator Gillibrand has also signed.

Cross-posting from US news on how to support the moonshot's current appropriations effort: We’ve just gotten word that Senators now have until FRIDAY, MAY 10TH to sign the FY25 Long Covid funding letter! 7 Senators have already signed on, but we need your help to get more onboard. If you...

The moonshot initiative is currently trying to get funding for Long Covid research from the 2024/2025 budget. This is distinct from Bernie's proposed moonshot act, which would provide funding over the course of ten years. Money from 2024/2025 appropriations would last one year. They're looking...

Creating a thread to discuss the "Long Covid Moonshot" campaign. Its core demand has been $1 billion a year in funding for Long Covid research, and the organisers have done some incredibly effective advocacy. Their initial calls to senators helped prompt the HELP hearing on Long Covid, and...

From the moonshot initiative: We’ve just gotten word that Senators now have until FRIDAY, MAY 10TH to sign the FY25 Long Covid funding letter! 7 Senators have already signed on, but we need your help to get more onboard. If you haven't already, please consider helping out: - Call your...

Some big action items from the Long Covid Moonshot initiative. Deadline for these two things is tomorrow. They're trying to get $1.4bn for Long Covid from the 2024/2025 budget a) Call your legislators (~4 mins) http://longcovidmoonshot.com/call-guide This is the most impactful action you can...

It's surprisingly difficult to find people who have done the lightning process, particularly in the more biomedically oriented circles as you have to be somewhat "vetted" to do it.

The Department of Defense has "announced the approval of a clinical trial award of up to $13.1 million from the U.S. Department of Defense (DOD) to evaluate Bezisterim (NE3107) for treating neurological symptoms associated with long COVID." The funding is going towards a private pharma company...

Post copied from News from the USA The Department of Defense has "announced the approval of a clinical trial award of up to $13.1 million from the U.S. Department of Defense (DOD) to evaluate Bezisterim (NE3107) for treating neurological symptoms associated with long COVID." The funding is...