UK: Funding doubled for brain cancer research

But when it comes to ME research funding, the government has no control over it???

http://www.bbc.co.uk/news/uk-44104730

 

Exactly, AFAIC what can be done depends mainly on how much people in power want it
On a practical level how does the government step in like this, where does the money they promise come from. And yes if they can do it here, and so speedily, why not for ME.

Like when MRC say they can't ring fence funds for ME but can put up in money for research and infrastructure into the dementia fund.

From the DoH response in the media to the calls for funding and from their response to the parliamentary debate I don't think at all that Jeremy hunt or DoH grasps the severity or longevity potential, I think they see it as a condition primarily where the best management approaches need to be identified. If anyone is up to it, perhaps a letter or petition asking for recognition of the IOM definition, severity and commitment to see progress for this as a biological illness with biomedical research funding is in order? Similar to the ones for Scotland, nih, who maybe...

 

Ditto.

 

Three constituents from our local support group visited Alex Chalk MP (Cons) in April -

Copy from part of an email reply from the MP:-

“I really enjoyed our meeting. It was very valuable. There’s nothing quite like meeting properly face-to-face; you feel the full impact of the lives that have been shattered.

The piece is very good. Can I invite you perhaps to tweak ..........Perhaps it could be replaced with something like “Alex was very struck to learn that...” (But you’re right to point that out; I found it really quite upsetting to read about the damage this disease has caused not just to individual careers, but wider society.)”

Final news article regarding our meeting:-

“Alex was very struck to learn that prior to their illnesses Rachel had been a Physics teacher, Linda worked for Land Registry and Louise was studying part time as well as working full time, as this clearly demonstrated the damage this condition has caused not just to individual careers, but wider society.“

He has already made contact with Carol Monaghan as well

 

Cross reference to page 7 current House of Lords/House of Commons Questions raised
(Sorry, not technically able this am to link )

14.5.2018 WPQ was asked and 22.5.18 Reply recd from Caroline Dinenage and “it is not usual practice to ring fence funds....”

https://www.parliament.uk/business/...o=2018-05-22&member=4481&dept=17&keywords=cfs

 

I don't give a flying fig what usual practice is. I've come to see that even that language is slippery because they do ofcourse ring fence , or put money up along with calls for applications, for some things - I posted here a few weeks back on £5m up for MH treatments I think, they did for hiv and addictions too. Then ofcourse there's the money they're Injecting into the dementia platform , whilst the CFS platform rattles on without funds

Yes we see similarities and basically if they can get get away with minimal funds for an illness they nor no one else cares about, they can put it into areas they do and others do instead, very nice.

 

I too was studying part-time and working full-time when the distressing event occurred which led to my developing ME. But the appalling way in which my line manager 'dealt with' my brief absence led to my walking out of my job, and the illness developed over the months that followed while the distress was at unbearable levels.