Action for ME (UK) fundraising

You can also support them by playing a weekly lottery.

"For every £1 you play each week, you'll receive a unique 6-digit lottery number.

Every Friday, a winning number is drawn at random. Match your digits to win up to £25,000!"

ETA: Edited to insert correct link.
 
Last edited:
Action for ME are the ones behind SequenceME right? Sounds like donating to them has a chance of being useful

I wonder if thing works outside the UK.
 
Last edited:
DigitalDrifter said:
What about Invest In ME?
Click to expand...
I have donated to IiME before via fundraisers and sponsored events. Being volunteer-led means all money raised goes to research but it also means they are stuck as a small charity and IMO they really need help to overhaul their identity/media.

For historical reasons they also do not seem to want to colloaborate with other charities, whereas personally I do not believe having multiple charities each running their own small research programmes is the optimal approach.
 
Last edited:
Danny is doing amazing fundraising and is right to try to inspire people with similar capabilities to do the same. I'm not sure it's accurate "The majority of research funding for all diseases comes from charities". I think when I was looking in dementia and stroke material, admittedly in the previous decade, they get more from the state than they raise privately? For dementia, it's probably because of economic cost / global targets to find treatment ...I'm not sure why for stroke, whether they sector struggles to fundraiser or whether the state thinks that it needs extra. It also might be because charity costs are going to towards support vs research, I don't know. It's interesting that a disease like Parkinson's, affecting half our numbers, as well as raising a lot of money and getting a lot of state money - (£100/p/yr) also are able to use privately raised money to pay for things like Parkinson's nurses.
 
Last edited:
Cinders66 said:
Danny is doing amazing fundraising and is right to try to inspire people with similar capabilities to do the same. I'm not sure it's accurate "The majority of research funding for all diseases comes from charities". I think when I was looking in dementia and stroke material, admittedly in the previous decade, they get more from the state than they raise privately? For dementia, it's probably because of economic cost / global targets to find treatment ...I'm not sure why for stroke, whether they sector struggles to fundraiser or whether the state thinks that it needs extra. It also might be because charity costs are going to towards support vs research, I don't know. It's interesting that a disease like Parkinson's, affecting half our numbers, as well as raising a lot of money and getting a lot of state money - (£100/p/yr) also are able to use privately raised money to pay for things like Parkinson's nurses.
Click to expand...
@PeterW looked at a bunch of 'comparable' (difficult call) illnesses to ME, including MS and Parkinson's, and did a comparison over several years of government/Wellcome vs charity funding of research, and found that most of the research funding came from charities. The data haven't been published but are shown in a video interview that I always struggle to find, but here's his summary of it.
 
Sasha said:
@PeterW looked at a bunch of 'comparable' (difficult call) illnesses to ME, including MS and Parkinson's, and did a comparison over several years of government/Wellcome vs charity funding of research, and found that most of the research funding came from charities. The data haven't been published but are shown in a video interview that I always struggle to find, but here's his summary of it.
Click to expand...

Yes I haven’t watched that yet as it’s lengthy but plan to, thanks for the reminder & link! I know it is the case for many illnesses but I don't think it is for stroke, dementia. I will see if the video covers those.
 
Cinders66 said:
Yes I haven’t watched that yet as it’s lengthy but plan to, thanks for the reminder & link! I know it is the case for many illnesses but I don't think it is for stroke, dementia. I will see if the video covers those.
Click to expand...
It's a lengthy (but very interesting) watch, but you can run your mouse along the timeline to see when Peter shows a chart summarising the data for each medical condition pops up. I wish I could find the link again!
 
Here's a blog post I wrote 5 years ago with some figures from the time:

"UK medical research charities spend a broadly similar amount to the taxpayer-funded National Institute for Health Research & Medical Research Council"

forums.phoenixrising.me

DISCUSSION: UK medical research charities spend a broadly similar amount to the taxpayer-funded National Institute for Health Research & Medical Research Council

There is a popular tweet going around by somebody with ME in the UK complaining that biomedical research shouldn't have to be funded/crowd-funded by charities. I have no wish to name this individual; I imagine lots of people have a similar view...
forums.phoenixrising.me forums.phoenixrising.me
 
You must log in or register to reply here.
Back
Top Bottom