Search results

One slightly positive take-home message from this ridiculous research project - it's the second study I've seen on recovered patients, the other being a published paper consisting of interviews with recovered patients, which was also from a BPS standpoint. Figures like Michael Sharpe have long...

The information sheet for the study also makes a big deal out of honouring patients' knowledge - which is a bit hilarious when they've entirely self-selected the patients they're going to listen.

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 and the UK. In terms of common estimates for ME/CFS and Long Covid - around 250k have ME/CFS and up to 2mn have Long Covid in the UK. In 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 straightforward cluster of psychogenic illness.

Merged thread https://www.theguardian.com/world/article/2024/jun/03/canada-email-leak-new-brunswick-mystery-illness Quotes: "A leading federal scientist in Canada has alleged he was barred from investigating a mystery brain illness in the province of New Brunswick and said he fears more than...

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. Here's his paragraph on that: "The intramural study findings have prompted a bevy of further studies. A Veterans Administration / intramural NIH study...

Hope biosciences just tweeted: “200 million HB-adMSCs are packaged in 20ccs of saline. They are then suspended into a 250cc saline bag for intravenous delivery. The placebo is the same minus the cells”

Results just released, not great. https://www.businesswire.com/news/home/20240531123002/en/Hope-Biosciences-Research-Foundation-Announces-Topline-Results-of-Cell-Therapy-Clinical-Trial-in-Long-COVID "The trial enrolled 79 participants, with 39 subjects in the treatment group and 40 in the...

100%, this has also had the NIH running terrified and putting the cart before the horse, spending hundreds of millions on substandard clinical trials without having funded almost any biomedical research.

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 of money for a field that has historically received no funding - so it would be incredibly messy at first. My sense of RECOVER is - the NIH were...

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 you say, the likes of Walitt pose an existential threat to the future of ME within the NIH. However, my argument was that the response to the study...

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 research funding than ME advocacy, imo that is largely because it is much easier to demand funding for Long Covid research. In terms of ME and an...

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, immunological studies, viral persistence studies, autonomic studies and so forth and I'd assume you'd get a lot of null results, but that'd actually be...

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 other diseases, does the NIH consistently fund large treatment trials but also then fund lots of smaller biomedical studies? Because the average disease...

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 large-scale funding over a 10-year period (the moonshot has demanded $1 billion a year for 10 years), and b) there has actually been a great deal of emphasis...

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 biomedical research globally - the levels of research funding in other developed countries are far smaller. The research the NIH has funded has had a...

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 sorry will be logging out for the rest of the day, have had a torrid few days healthwise so need to get some good rest!)

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 about strategy – figuring out what approach works in a given situation and what approach doesn’t work. Part of my criticism of the response to the...

Exactly. I think there are cases where strident criticism of researchers is justified and also works very well - for instance following the PACE trial. More generally I’m much more OK with strongly pushing back against BPS researchers in Europe because these are people who are working directly...

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 budget for ME, the much bigger problem is that annual budget rather than the study. So advocacy should focus on the former rather than the latter, and...