That youtube channel is American and seems to interview patients who have recovered from Long Covid, ME/CFS, and post-viral fatigue in both the US...
Clearly Simon Wessely is losing his touch. 15 years ago, he would have already done two interviews with the BBC describing this as a...
Merged thread https://www.theguardian.com/world/article/2024/jun/03/canada-email-leak-new-brunswick-mystery-illness Quotes: "A leading federal...
The thing that caught my eye was him saying that 8 other studies have resulted from the intramural one, which is new information to me at least....
Hope biosciences just tweeted: “200 million HB-adMSCs are packaged in 20ccs of saline. They are then suspended into a 250cc saline bag for...
Results just released, not great....
100%, this has also had the NIH running terrified and putting the cart before the horse, spending hundreds of millions on substandard clinical...
Yes - personally, I'm more convinced by $1 billion a year as a political demand and less as an actual figure. It would be an extraordinary amount...
Just to say - I was in no way advocating for silence around the intramural study. There does absolutely need to be a strong rebuttal because, as...
Also I hope I'm not coming across as being too critical/dismissive of ME advocacy. If Long Covid advocacy is more focused in its demands for more...
I think there are enough hypotheses about what's driving ME to spend $200 million a year - you could throw a lot of money at neuro-inflammation,...
But being realistic, how do you create a situation where that $30 million for baracitinib goes to 5-10 exploratory studies? Why, in the case of...
I don't think this is a fully accurate portrayal of LC advocacy logic in that a) almost every major LC advocacy organisation has demanded...
Two things are true: a) The NIH is indeed the only institution with the resources to change our lives. It's by far the largest funder of...
I'm also sorry if I expressed myself too strongly haha, I can get carried away, but this is all such an important conversation to have. (Also...
To address specific points. First, it isn’t about blame, it’s about strategy, and to do effective advocacy you have to think very seriously...
Exactly. I think there are cases where strident criticism of researchers is justified and also works very well - for instance following the PACE...
Certainly - I don’t want to completely dismiss the importance of this study. My argument boils down to - if this study was half the NIH’s annual...
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...
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...
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