Carol Head, SMCI President, On ME/CFS Research Funding

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....or:

If a bequest is made to the MEA the solictors chain could donate a portion of their fee to the MEA....

they'll be getting more income off the back of the initiative anyway....

Sorry - the MEA and @charles shepherd - I'm dragging your name into this and you might not want to consider it at all. It's just it would need to be done under the banner of a charity I think and I don't think many of us would consider it if it involved inAction for ME.
 

Cinders66

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I'm open to debating any suggestions about anything to make research progress raising money In The next five years but discussing how better things might get through my and other sick people leaving money in wills is just too depressing for me sorry, I want hope soon and a chance to live as I'm sure we all do , I just can't focus on stuff like this,. Feel free to carry on without me , I've said enough anyway...
 

Dolphin

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As I said politically some might Feel a distaste at suggestions the state intervene whereas I'm on the left and think it's the states job. It's not that I think government should fund all research, we know MS , CANCER etc raise millions Privately which is great but they should fund some and ,due to the name, stigma, complex narrative I just don't think ME can raise the same type of money that it also deserves to make proper progress. It can't compete in the public sphere. Outside the mild 25% the rest of sufferers won't be in work and are possibly impacting on their families ability to work which must impact fundraising capability.
By the time people are ill with lots of illnesses, they are often not in a good position to work (especially conditions that affect children or older people). I really don't think an exception will be made for ME.

If one puts one's mind to it, one can probably make excuses not to give to any charitable causes and say that the government's job.

Personally I think it's less justifiable to say it's the government's job to fund the necessary medical research than many other situations. Funding medical research is a bottomless pit, there will always be people who want more.

I have no idea why you are saying people have a distaste for the state giving money to research. I am simply arguing to do what works, not arguing from any ideological position. Solely depending on lobbying for research I don't think is an optimal strategy for making sure there is progress. People have been trying to lobby. For example in the UK there has been an all-party Parliamentary group for the last 2 decades. There were lots of protests, petitions, people writing to members of Parliament, parliamentary questions, etc in the UK.
 
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I'm sorry to depress you @Cinders66, but the reality many of us would like to do something and can't afford to.

When I first got ill I was a bright young thing with my life ahead of me. Now, my life is well past the half way, if not approaching the 2/3 point. I could never have imagined I would still be so ill all this time.

I am very hopeful for the new research - it's fantastic. I have more hope than ever. But there is still no guarantee of a recovery in 5 years. It can take a long time for things to filter through to actual patients.

In the meantime if I fell off my perch tomorrow, for whatever reason, I would quite like at least a portion of my assets to go towards making a difference to others in my situation. At least that way I could feel positive that I might be contributing something positive. Because I have been able to do naff all to help my fellow man since I got sick.
 

Cinders66

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Dolphin I have never advocated solely focusing on lobbying MRC . To make speed up we need as much cash as possible from both sectors. currently it's not much from one and hardly any from the other. I don't think "not a bottomless pit" talk about research money regarding an illness that's been neglected yet is severe and common is fair. I just looked and MRC two years back put £100m into a dementia institute along with Alzheimer's society equalling funds. So that's £200m injected to help the million people with dementia. If we just had £10m (about the money we were deprived of anyway) for the 200 000 with ME it would make such a difference. Difference is we are not considered deserving. If you don't think tax payers money should fund medical research that's a legitimate opinion but obviously the MRC is there and does do that so I think we should get our fair dues.

My comment about PWME being out of work was related to the fact our physical function and quality of life scores are amongst the lowest of chronic illness. I think I remember that the MRC are funding a sjogrens biobank (we self fund) - is ME on average more debilitating and impactful?

I've never suggested People shouldn't give to ME research privately and have repeatedly said that I have repeatedly done so, I just don't think it's fair that the medical profession have tarnished and stigmatised the illness on the one hand so we are not taken seriously and can raise little and on the other hand , unlike most disabling chronic illness, the MRC have given virtually nothing since the 80s to get the biomedical CFS research field in uk established.

The reality for people on the ground is a miserable quality of life, a thirty year wait for help, far less research progress than has been seen for MS, cancers and HIV and we are apparently costing the state a fortune. A few million investment from MRC , as NIH are doing is a reasonable request. My whole frustration is that patients self financing research, which is essentially what's happening in uk, not much public donations , ISNT working.

Individual lobbying doesn't work no. I've written recently to DOH and got nowhere. The APPG is sadly pretty toothless, few MPS attend and they aren't seemingly requesting much anyway. The Gibson report after independent inquiry did suggest MRC did OWE pwME money and should invest comparably to what they had for behavioural interventions, which they ignored. I wasn't around at the time but assume there weren't campaigns to push for this as that isn't how things are done here. I have t seen campaigns, protests or well organised petitioning in 8 years.
 

Dolphin

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If you don't think tax payers money should fund medical research that's a legitimate opinion but obviously the MRC is there and does do that so I think we should get our fair dues.
I never said that and I'm not happy at this misrepresentation of my position.

I said it's not like universal healthcare where the necessary money comes from taxpayers.

I'm not sure I should spend much more energy discussing the issue with you given the way you have misrepresented what I said.

I just looked and MRC two years back put £100m into a dementia institute along with Alzheimer's society equalling funds.
So private money helped release more funding. Same thing happened with rituximab trial in Norway.

My whole frustration is that patients self financing research, which is essentially what's happening in uk, not much public donations , ISNT working.
Not giving or raising money privately is a worse solution.

And if more people and families and friends donated and/or fund raised the money raised would be much more. Not that many people have left money in their wills for example. Nor do that many families actively fundraise.

Too many people have been leaving funding of research to governments and washing their hands of the problem. This has been a big contributor to the situation where biomedical research has been underfunded.
 
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Dolphin

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It is probably harder for us than some other conditions to raise money privately for research.

But I would say that's all the more reason we can't waste resources by too many people not trying at all. You need to make the best of life and the situation you find yourself in:
“Things work out best for those who make the best of the way things work out.”
 

Tuha

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I agree with dolphin. Private funding is important source for ME research and especially in our situation when there is almost no public funding. Even if we will get for example 100 mil. USD from NIH why not to get another 20 mil. from patients donations? Research is very expensive. We need all possibilities
 

Cinders66

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Dolphin

I agree there's not much point discussing further as we both have points of view and disagree which is fair enough. I didn't intend to misrepresent you, people can read your comment and if you feel I misinterpreted /misrepresented fair enough, I apologise. I feel you also have repeatedly misrepresented me by saying things like wrong in "relying solely on government" which I've never advocated. Throughout, my point has been to yes raise what we can ourselves but the states taxes should also do it's fair share.
Maybe I'm wrong again but I think:

You believe we could raise more if we tried harder and think relying on government is part causing that failure.
I think there's many reasons why, even the intense IIME rituximab campaign struggled raising private cash in the uk including outreach, people attending clinics not being given full information, the we all get better in the end narrative, issues even with families taking it seriously etc and therefore, more than most respected but comparable illness, we NEED state help too

But there's two contrary opinions. I very much respect the advocacy work you do and we can just agree to disagree on fundraising and the MRC etc. .