There may be some value if one can show a bias but I just thought I would highlight that decisions on funding are generally separate. I just thought I would highlight the difference to the US system where lobbying can pay a bigger part in how much illnesses get.
I'm not sure why you would think that for an illness that affects maybe 200,000 people in the UK, that only £300,000-£400,000 could be expected to be raised privately per year. There is potential to raise much more than that. I remember looking into the MS charities around a decade ago and they were raising £13-15 million per year for research.
By comparison, the medical research council was giving around £0.6 million per year from multiple sclerosis research. I doubt MS was particularly discriminated against by the Medical Research Council.
I think people can think because there is universal healthcare, that it is government's responsibility to pay from most of the research. However outside the US research medical research budgets are tiny compared to healthy spending. There are a lot of illnesses to go around. Depending mainly on governments (outside the US*) to raise most of the necessary money is likely to lead to slow progress.
*The situation in the US is different. A lot of people are not helped that much by the US health system e.g. if they have their own private health insurance. So possibly as a way to help everyone, they invest a lot more in medical research
But MS is a validated respected illness. As my original point said, the reason in uk we suffer is because of the double whammy, an illness that can raise hardly anything privately and an illness given virtually nothing by the state past thirty years. If we'd had the £0.6m / year given to MS over past twenty years (as we should) that's £12m we would at least have gotten somewhere and in my view that's £12m AT LEAST that the double MS pwME population are now essentially owed.
If you add up what our charities are raising privately per year for research - AFME £40 000, MEA 100, 000 , IiME £100, 000 , MERUK £ 80 0000? It's NOTHING compared to what MS can raise despite having more sufferers and MS charities have money on top to fund MS nurses for their severely ill, fund a brain bank along with Parkinson's UK which we haven't got, whilst incidentally MRC is fundin many others.
I also wouldn't call the ring fencing for HIV extraordinary measures in the normal sense of the word because it's no Big deal, Norway and America are doing it, MRC have done it for CFS , they've done it for addictions etc I think. It's just notsomething . They usually do but hec, prior to ME striking, laying in a darkened room all day wasn't something I normally did, nor most people so I would argue SOMETHING beyond plodding on at a snails pace needs to done for this highly debilitated and neglected patient group and we HAVE NOT had our fair share of the state research budget. That's what I'm asking for, an injection of cash now to makeup or the neglect since the 80s. It would make a big difference and it's only fair.
(Plus our health service hasn't exactly injectedmoney into ME care either so we aren't being looked after on any hand)