The CMRC's new biomedical focus and big ambitions (my new blog)

Simon M said:
as far as I’m aware, the government did not allocate specific funds to dementia.

But you’re right that this will require a sea change in attitude from funders. The key point about the dementia platform is that it moved on from the current “competitive funding“ approach, with the MRC let’s researchers apply for when ever they want to research With no plans for any disease, saying “no, this disease is different, and it needs special attention and we need to ramp up activity by doing things differently”.

The challenge now is to persuade the MRC and others to do the same for ME/CFS. The CMRC have already presented to the MRC about this, and got a positive response, as I mentioned in my blog. That’s why I also mentioned the hints about other good things happening in the background, such as contact from senior decision-makers/Politicians. Of course, the acid test is actually delivering on this, but the helpful example of what the Dementia’s platform has achieved, The initial positive reaction from the MRC, and the indication that good things are happening in the background or suggest that something good can happen from this.


That’s a very interesting point about an international collaboration. Chris said in his statement that he is keen to consult with patients and with other researchers about how to do the study, and I hope that other researchers will include the biobank team.
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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 I've written to them expressly for this and you get the reply "this is not something they normally do" reply whilst at the same time doing it essentially for dementia. If they now will then , at last basically because they did it for HIV too but I'm not sure if it's the dementia platform example that is supposed to be behind this change of heart or if the platform idea allows them to put in money with a certain infrastructure in a certain way so it's more apoealling or if it's just CFS is now considered needy, worthy or viable and wasn't before...
 
Trish said:
I think we are in cloud cuckoo land imagining ME/CFS will get the sort of funding dementia research is getting, whatever fancy platforms are set up.

Dementia research has huge public and political backing because of the cost of caring for dementia patients, and because everyone knows someone with dementia.

ME/CFS, however much we know it has just as great need for research, is simply not going to cut through with the public and politicians in the same way.

I hope I'm wrong.
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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 spend. We have probably around £2-4 I think. They want a lot more and think funding should be commensurate with economic and human cost, our argument too. One different argument for increased ME spending is that it impacts prime years.

Alzheimer's uk say

"Dementia research should receive a level of investment that matches the economic and human cost of the condition. The total cost of dementia to the UK is estimated at £26 billion a year but only £90 is spent on dementia research per patient per year (Alzheimer's Society, 2014). This is only a fraction of the amount spent on research into some other health conditions. Progress is being made in securing further investment in dementia research. Since 2009/10, annual government and charity spend on dementia research has increased from £43.6 million to almost £74 million in 2013. However, in 2012/13 cancer research still received seven times that spent on dementia (Alzheimer's Society, 2014). The UK needs a national and long-term plan for dementia research that it is funded in proportion to its impact on society and with greater co-ordination between funders of dementia research"
 
Not sure if this is the right place to put this, but it does concern dementia.

I've been following (subscribed to her blog so get email when a new post) a lady called Wendy with early onset dementia. She has a blog, and her book about living with dementia was published a couple of weeks (?) ago. Her latest blog post is Working Together to Beat Dementia Event….

I've thought for a while that the way dementia research is being carried out is much more inclusive of patients. Wendy is involved a lot speaking to researchers, and to students too. Some of the ways she manages remembering to do things seem quite useful for brainfog in ME too!
 
Sly Saint said:
Just incase anyone else is affected or knows someone affected:
https://www.s4me.info/posts/49017/
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Thanks for the link @Sly Saint. Wendy is too young to claim Attendance Allowance. She got PIP initially, but when it came up again she lost it all. Did the Mandatory Reconsideration, but didn't feel up to going on to fight at Tribunal - I did try to encourage her, but understand why she decided not to do it. I imagine if Wendy lost her PIP most others with early onset dementia are likely to as well. It's stuff like this, and also how ME patients are treated by PIP assessors and tribunals that really makes me MAD and wish I had sufficient health and knowledge to help people. I despair of this unfair and cruel system.
 
Sly Saint said:
Did you see the bit about council tax reduction?
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I don't know if Wendy gets that. I imagine her daughters are onto anything like that. I only know Wendy through her blog, so don't really feel able to ask for more details.

Know this is getting a tad off topic, but we do get a council tax reduction of 1 band because we have a downstairs toilet/shower room because I'm disabled. I don't remember exactly what happened as it's several years ago now, but basically someone came from the council to inspect so they knew it was really there. Not been back since, but I expect they'll want to again at some stage. I don't think having PIP was a requirement, but don't remember.
 
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