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So all the time the MRC were setting up and funding a platform for dementia they didn't think to do something similar for us till now? I was reading back on simons report of the 2013 launch. It all seemed so promising, get in lOTs of funds , the severely affected were supposed to be an...

The cost quoted by Alzheimer's uk was £26b p/a. That's 8 times more than us (although I think £3.3b low as MS quote £3-4b) for a population 4 times the size but probably requiring heavy care. Plus it's a number expected to increase. They had in 2014 £90/yr/person combined charity/gvt research...

Thanks I'm still a bit confused because the CMRC initiative (supposedly bringing lots of people together ) plus ring fenced funding could have equalled quite a similar thing to the dementia platform couldn't it? but the MRC refused to take essentially exceptional measures for this illness and...

The cynic would say that why they were transferred.

David Cameron is now president of Alzheimer's uk. I didn't know that thats a catch. As PM he was very behind increased funding. https://www.gov.uk/government/news/pm-announces-funding-for-uks-first-dementia-research-institute

I'm confused about this dementia type platform idea. If MRC have resolutely refused to inject sums of money into CFS both in 2007 and as a continuation of the one off 2012 grant, why do people think they're now going to inject sums as part of a CFS platform now? Because The platform idea is so...

I'm less outright skeptical now necessarily but resentful. I really don't see how 10 years on from the setting up of the ME expert group (CMRC Predecessor and around the of MRC refusing to give money as per the Gibson enquiry recommendations) how patients are now supposed to go wehay...

This looks really good. I'm severely affected and as this research has been emerging my mystifying dysfunction (rather than fatigue) seem to make more sense. I'm grateful for that alone. What treatments could come for this though....

This should have been MEA main aim for decades. Sophie's story isn't new or unusual. She's not a single Case. The severe form of ME should be right up there with huntingtons and MS as regarded as a horror of illness, yet it's been completely lost in the debate around CFS, fatigue and exercise...

Following on valentjin Regarding the report thing, 1) could this mean that the report will be "waited on," before action from funding and policy makers? 2) is it necessary- can't uk just look and learn from the IOM report and CMRC commissioned funding report 3) can we trust uk to do as a good a...

Really the charities involved could do us all a favour and do a Q & A on the FND study and the researchers. We have concerns eg around their supposed treatment part, why they are using the terms FNS or FND when the MEA themselves are campaigning against this classification and terminology and...

What they're studying and definitions are important and not really covered much. To date they've been doing CFS research essentially with Oxford or NICE criteria. Are there examples of the MRC funding Fukuda or CCC research? Most of the new CMRC members are likely have academic interest in...

It started 2012 didn't it or 2013. He's certainly had five years there too but was apparently unanimously voted back in. Before that he headed the ME expert group which ran from 2007-8 and was supposed to be about coming together to further research too. Similar people involved. It folded when...

I'd been using a link on meruk website where I'd thought more than 0.5% went to them from amazon. It's worth doing as I regularly shop there simply for convenience, or price but it doesn't make amazon a hero, their tax affairs and many other companies give good cash back on sites such as easy...

There does seem a different feel to the minutes of February, more sense of energy, action and urgency. I wonder if unrest has made an impact, or the nih doing stuff or Esther leaving which opens up space for new approaches

What I find odd about CMRC are how few people part of it are actually doing biomedical research or otherwise involved in the field. So Holgate hasn't done research for a long time, parry just did odd post mortem stuff, Chris pointing , does he actually do CFS research or care? Crawley mainly...

https://www.dementiasplatform.uk/about/governance £53m from MRC since 2014 Dementias Platform UK is a public-private partnership funded by the Medical Research Council. We are proud to work across traditional boundaries, bringing researchers from universities and industry together in the fight...

Hmm Well these people have AFAIC piddled about with groups and conferences since 2008 and not achieved much so don't expect applause for stepping up a gear on the biomedical research side. That's a decade of my life lost, it's not ok. They mention the dementia uk platform, I looked that up in...

Yes they offer services and sometimes fund help. I've only known of them in the context of severe ME , they helped a well known sufferer stay in Burrswood when it used to be a rare inpatient option. Dr paul worthley used to work at Burswood hospital and run the ME section. Before Burrswood...

I need 8-9 but often get around 7. I don't sleep in the day. Sleep is the first thing to go with PEM, I take meds so I get off to sleep but wake early if I have PEM and can get as little as about 4 hours those days. Im in bed all day and I wish I slept all my resting time as I'm so fed up with...