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Article: No Money Available for ME/CFS? Think Again - Testimony to CFSAC

Comments

Pretty sure that was spent on CBT/GET/PACE though, Sasha, not biomedical research :)

This is exactly the difficulty we have in the UK - because questions in Parliament always make the mistake of asking 'how much funding is being spent on ME research ', to which the confident answer will always be 'a lot of money' which sounds good - but actually this is money spent only on researching 'management strategies' such as PACE.

So actually we need to be consistently emphasising/asking 'what money has been spent on biomedical research' specifically and the answer, I suspect, is still a great fat zero (unless the MRC funded one of the XMRV studies of course, which they may well have done). Until we insist on biomedical research questions, (and keep the field much broader than XMRV), we will keep wasting great opportunities.
 
Pretty sure that was spent on CBT/GET/PACE though, Sasha, not biomedical research :)

This is exactly the difficulty we have in the UK - because questions in Parliament always make the mistake of asking 'how much funding is being spent on ME research ', to which the confident answer will always be 'a lot of money' which sounds good - but actually this is money spent only on researching 'management strategies' such as PACE.

So actually we need to be consistently emphasising/asking 'what money has been spent on biomedical research' specifically and the answer, I suspect, is still a great fat zero (unless the MRC funded one of the XMRV studies of course, which they may well have done). Until we insist on biomedical research questions, (and keep the field much broader than XMRV), we will keep wasting great opportunities.
Totally agree - but also don't see much difference between a paltry 109k and zero in the context of the millions and millions that get spent on other stuff. This DoH habit of calling ME research a priority area and then saying they spent 109k on it in an entire year just makes me want to... want to... :eek: