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There was no AfME rep there so that may have contributed to the delay with this set of minutes.

I haven’t watched the video but see in the MEA summary a figure of £110 million is given for productivity costs. Sounds like this was based on the Collin, Crawley et al study on the 5000-odd people who attended the NHS CFS-ME clinics. This figure definitely shouldn’t get quoted as total...

I heard that the Barclay brothers paid for a lot of the research by the Behans and related teams 20-30 years ago. Lord Sainsbury funded The Linbury Trust. Unfortunately a lot of the ME/CFS research they funded was biopsychosocial. A number of wealthy individuals have funded research in the US...

If people with ME/CFS even gave 1% of what they spent on treatments, that would be great. It could be thought of as diversifying your assets, rather than putting all your eggs in one basket. [Unfortunately, that doesn't happen with the majority of people giving nothing]. Indeed, an ex-member...

My guess would be that only a small percentage of people with rheumatoid arthritis donate to research. And just like with ME/CFS, a lot of people with significant resources don't donate to research. Perhaps some think they can get better if they just keep trying treatments. I know in my...

https://jamanetwork.com/journals/jama/article-abstract/2705188

Like Solve ME/CFS Initiative here. I'm pretty sure you won't find that they gave them money to do this paper review. They gave the money to do specific biomedical studies. This is what I have found on a quick search: Actually, although the Solve ME/CFS Initiative gave money to Carmen...

Looks like a review paper. My impression is this is generally not the sort of thing biomedical researchers would apply for grants for from national research entities. You might mention people who are funding your other work.

Just regarding Dr CS: he is a medical doctor so is a lot less replaceable than other people who could be active. He has also built up a lot of knowledge. A lot of people only stay active for a few years and move on. I have less confidence with most other doctors with regard to media interviews...

Big list of PACE Trial coverage from 2011 somebody sent me in 2015

Any use? http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html

Yes indeed. 15-30 million people around the world have it with maybe 100 million first degree relatives and hundreds of millions of people who know people with the illness. I think a lot more could be raised privately if people put their minds to it. This would lead to more applications to...

If one accepts that the money from the Chief Scientist Office in Scotland and the Department of Work and Pensions is included in the MRC money, one gets £4,579,938 from figures below: £2,076,363 £1,800,600 £702,975 that's £5 million, rounded to the nearest million. We also know that...

I just posted this on another thread, but there seems to be a lot of different people on this thread so, given it took me little time to write, I thought I would post it here. --- Most countries in the world don't look at total budgets for each condition to try balance things out across...

I remain to be fully convinced. The MRC in its accounts has things like e.g. Medical Research Council Expenditure on CFS/ME Research, by Project, from 2004/05 -2016/17, £k1 has £2,779,000 for PACE: If the Medical Research Council actually funded a smaller amount, I would think there is a...

Separately £4,919,938 from figures below: £2,076,363 £1,800,600 £702,975 £250,000 £90,000 I think rounding to £5 million, particularly in tweets where there is not much space to say things, is reasonable. ------

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