Dolphin I have never advocated solely focusing on lobbying MRC . To make speed up we need as much cash as possible from both sectors. currently it's not much from one and hardly any from the other. I don't think "not a bottomless pit" talk about research money regarding an illness that's been neglected yet is severe and common is fair. I just looked and MRC two years back put £100m into a dementia institute along with Alzheimer's society equalling funds. So that's £200m injected to help the million people with dementia. If we just had £10m (about the money we were deprived of anyway) for the 200 000 with ME it would make such a difference. Difference is we are not considered deserving. If you don't think tax payers money should fund medical research that's a legitimate opinion but obviously the MRC is there and does do that so I think we should get our fair dues.
My comment about PWME being out of work was related to the fact our physical function and quality of life scores are amongst the lowest of chronic illness. I think I remember that the MRC are funding a sjogrens biobank (we self fund) - is ME on average more debilitating and impactful?
I've never suggested People shouldn't give to ME research privately and have repeatedly said that I have repeatedly done so, I just don't think it's fair that the medical profession have tarnished and stigmatised the illness on the one hand so we are not taken seriously and can raise little and on the other hand , unlike most disabling chronic illness, the MRC have given virtually nothing since the 80s to get the biomedical CFS research field in uk established.
The reality for people on the ground is a miserable quality of life, a thirty year wait for help, far less research progress than has been seen for MS, cancers and HIV and we are apparently costing the state a fortune. A few million investment from MRC , as NIH are doing is a reasonable request. My whole frustration is that patients self financing research, which is essentially what's happening in uk, not much public donations , ISNT working.
Individual lobbying doesn't work no. I've written recently to DOH and got nowhere. The APPG is sadly pretty toothless, few MPS attend and they aren't seemingly requesting much anyway. The Gibson report after independent inquiry did suggest MRC did OWE pwME money and should invest comparably to what they had for behavioural interventions, which they ignored. I wasn't around at the time but assume there weren't campaigns to push for this as that isn't how things are done here. I have t seen campaigns, protests or well organised petitioning in 8 years.