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http://forums.phoenixrising.me/index.php?threads/horrifying-article-in-sunday-times.23050/ There's a quote in this newspaper article copied in full , near the bottom. I can't copy it but he says he made recommendations to the MRC on CFS funding that it was best for the bulk of the money to be...

This is the MRC page where they highlight that understanding mechanisms not essential or high priority https://www.mrc.ac.uk/funding/science-areas/population-systems- medicine/cfsme/ 2003 research strategy In 2003 we set up an advisory group, made up of independent scientists and patient...

The MRC around 2004 had a meeting where they decided we didn't need to understand CFSME to be able to treat it, AFAICs there was utter faith in the behavioural model. There's minutes of those meetings I think. That explains why so much money was thrown at pace & FINE, to prove finally what they...

Thank you. I thought it looked wrong!

https://www.bbc.co.uk/programmes/p05y3tpw 2:11 in. Very good interview from knowledgeable, sympathetic interviewer and great interview by SC who I usually think is weak, not today. Covers numbers, why not better recognised /funded and cared for, how Sonya became AFME CEO and her son getting...

We all have the goal of getting much more high quality bio research. It just hasn't happened. Obviously in uk there's many obstacles which imo is why funders should have put in some continuous funding , I'm sure Newton, Bansal, even the biobank resesrchers could have done some good with it and...

However whilst old age is associated with a big slowing Down , becoming weak, frail, aches painy, it's still not really ME-like is it? My Nan hobbled around but could tolerate stimulation and mental activity for hours. ME it often all goes. And muscular wise, a bit of over activity wouldn't...

Its astonishing as unrest airs around the world that the highly controversial, incarcerator of Karina was chosen to speak. One can only assume that none of the bacme folks had watched unrest in an attempt to see what's really going down with patients. It's also bizarre that patient groups have...

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...