ME charity income versus other illness charities in the UK

Yes, I’m just surprised it wasn’t promoted. I have essentially zero trust or respect in them on CFS after the years as is evident. It was Also interesting that this American researcher seemed to think things had really improved in uk whereas we feel nothing’s changed..., is that what he’s being told. Secondly he said the parliament debate seems to have moved them, are they now moving and looking to put things in place now parliament scrutiny is on them ,will something more on the research and funds front magically transpire before the HoC debate...

 

I meant more the charities who they sit with quarterly at the CMRC. I would have thought it would have just been slipped in the minutes as “good news”, a positive initiative or mentioned by the charities... again, as to us it seems the MRC is a blank walk of nothingness.

When I saw this project announced I’d just thought it was coincidence that the researchers involved also had MRC jobs.

 

Just another SHOCKING interesting figure which really highlights the scale of the progress that’s been available to us versus MS .

The ME association are saying that in their lifetime they have invested £1m into research, I think ME research uk who’ve been going about 20 years have invested £1.5 and combined AFME & IIME about £0.5m (I know iime have funds awaiting allocation): then there was that CFS foundation that ended recently who might have put in £1m. So over thirty years our charities have invested about £4m into biomedical research and the MRC have put in at best the same, probably less.

In MS, in MAJOR contrast the MS society are saying since their onset they have invested £286m in research (not all biomedical research but most is ). Now they have been going since the fifties so we have to halve that to make a fair comparison so it’s £140m say versus our £4m charity investment comparison, then probably a vast ratio difference in mrc nihr Funds too. So we aren’t in a scenario of just “20xs MS papers more per year” equals twenty times the investment. Over thirty years MS has had invested in biomedical research by charities 35xs more and in state funds potentially way more too.


This is why I get frustrated when I write to the mrc or hear at debates the good news that they funded one small study in 2015, because they know darn well illnesses aren’t cracked with the level of activity and investment that’s going on. Even with nearly £300m invested in the UK and replicated in probably every developed country in the world, MS still has far to go. Pretending uk is doing it’s bit for CFS by having invested the odd million every decade is just a joke.

 

Sorry to bang on about MS, I just saw this way there was a call for great funding for MS research and some interesting beliefs that people thought only of the R & R phase and didn’t realise how devastating it can become

https://inews.co.uk/news/christmas-...s-needs-heavy-investment-cambridge-professor/



Robin Franklin, professor of stem cell medicine at the University of Cambridge, said the introduction of an increasing number of increasingly effective drugs over the last 20 years to halt the progress of MS has been “one of the great success stories of modern medicine”. However, he said scientists will only have a much better understanding of the how to rebuild the damaged brain cells within MS patients if much more research money is forthcoming. “MS has not got the attention and proportion [of funding] it deserves, actually,” he told i. “Investment in Alzheimer’s has been colossal – £250m invested by the UK government alone. That’s a disease of the ageing population. MS is a disease of young adults which clobbers you when you’re just setting out on life.”

Speaking from his office at the university’s MS Society Cambridge Centre for Myelin Repair, Professor Franklin, director of the centre, believes part of the problem is that many people think of MS in its early relapsing-remitting phase when people who are in remission can seem relatively unaffected. “I guess the impression of the disease is that it’s not as severe as it ultimately becomes, which is the progressive phase, and the other end of progression is pretty damn grim. This is a really horrendous disease, but people have a mixed concept of it and think rather optimistically about it. That’s not the reality,” he said.

There’s also an interview with Rona Moss Morris if you want to see how she approaches MS versus CFS fatigue
https://inews.co.uk/news/christmas-appeal/christmas-appeal-ms-society-chronic-fatigue-research/

 

Regarding the MRC researchers magically appearing as colleagues in an American, patient funded research project. ...it’s either good that the MRC despite seeming to do nothing here (they’re funding so little research they can’t even pad out a yearly CMRC conference anymore) they are , behind the scenes interested and collaborating ORR...
they are deliberately keeping the UK field stagnating whilst realising that there’s impressive research popped up surprisingly in the USA (the pineapple funds were unexpected it wasnt expected to take off as it has ) and it would serve them well when this fantastic team get results and the shit hits the CFS fan, to be there all along , contributing.

I guess I just find it galling that the MRC are doing nothing over here still when watching the OMF conference presentation it’s wonderfully but painfully clear whet a phenomenal difference having great well funded collaborating scientists working on a topic can Make, that’s all we needed. The MRC maintain there’s not interest over here and the last CMRC meeting had just two researchers I think in attendance but they manage to provide three high end researchers to a USA project... perhaps it wasn’t like that but there’s hardly patient engagement or transparency is there but then again there’s nothing over here to report...