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

Dolphin

Senior Member
Messages
17,567
Was that pre or post the public TV apology to ME patients do you know?
Pretty sure it was after. The fundraising was in 2013.

2013:
http://phoenixrising.me/archives/16374

MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!


[I think the final total given was more than this in the end]


I found this but I'm not sure if this is what you had in mind. I think this was the first statement she made.

2015:
Norwegian Prime Minister Gives Opening Speech At Awareness Event

http://sacfs.asn.au/news/2015/06/06...r_gives_opening_speech_at_awareness_event.htm
 

Invisible Woman

Senior Member
Messages
1,267
Thanks for that @Dolphin. Interesting. I wondered if the PM 's apology might have coloured the general public's view of the condition and it's sufferer's.

So, what did the Norwegians do that we haven't? Or is it simply because they didn't have the stereotype view to begin with?
 

Dolphin

Senior Member
Messages
17,567
Thanks for that @Dolphin. Interesting. I wondered if the PM 's apology might have coloured the general public's view of the condition and it's sufferer's.

So, what did the Norwegians do that we haven't? Or is it simply because they didn't have the stereotype view to begin with?
Are you talking about fundraising? As I said, in many countries plenty of people will donate if fundraising events are arranged.

If you are in the country where virtually no one knows about the condition (I imagine there could be the case in some non-English-speaking countries), the chances of the government funded bodies giving payback funds for ME/CFS would be minimal.

Fund-raising also doubles as an opportunity to raise awareness and understanding about the condition.
 

Dolphin

Senior Member
Messages
17,567
A lot more money for ME/CFS research could be raised if people remembered it in their wills. Very few people seem to at the moment.

A lot of people may not have that much money when they are alive but they may own the property they live in and its contents (or inherit it when their parents pass away). Giving a percentage (or even all) of this can be a lot from a single individual.

This is what I intend to do myself (give a percentage to ME/CFS research) when I make a will.
 

Invisible Woman

Senior Member
Messages
1,267
Fund-raising also doubles as an opportunity to raise awareness and understanding about the condition.

I agree. Both situations need to be addressed and we might as well do 'em together. Lord knows most of us are running out of time - in that we will be too old to benefit much from a cure or effective treatment - if something doesn't change soon!

It's just how to go about it....

Edited to add: great point about making a bequest. Perhaps we should have a fundraiser ideas thread?
 

Dolphin

Senior Member
Messages
17,567
Fund-raising also doubles as an opportunity to raise awareness and understanding about the condition.
I agree. Both situations need to be addressed and we might as well do 'em together. Lord knows most of us are running out of time - in that we will be too old to benefit much from a cure or effective treatment - if something doesn't change soon!

It's just how to go about it....

Edited to add: great point about making a bequest. Perhaps we should have a fundraiser ideas thread?
Okay, I have done this now:
Ways & ideas to raise money for ME/CFS research, charities, etc.
http://forums.phoenixrising.me/inde...i-president-on-me-cfs-research-funding.50164/
 

Dolphin

Senior Member
Messages
17,567
Dolphin said:
Fund-raising also doubles as an opportunity to raise awareness and understanding about the condition.
I agree. Both situations need to be addressed and we might as well do 'em together. Lord knows most of us are running out of time - in that we will be too old to benefit much from a cure or effective treatment - if something doesn't change soon!
That's the type of spirit we need, a bit of desperation to make things happen sooner rather than later.

I've been ill 28 years and severely affected 22 years. Progress has been slow. An awful lot more money could have been raised privately if people had put their minds to it.
 

Cinders66

Senior Member
Messages
494
I've not remotely advocated sitting back and only relying on state help. The doing it ourselves model has been what's been done since the 80s and even today it's still very hard to raise large sums of money. Dr Shepherd talked about that for a rituximab phase 3 trial I think, said charities haven't a hope of funding it with "coffee morning style fundraising " its big money from MRC /Welcome etc that's going to have to get involved. If we could fundraise easily we'd have a Brain bank also but it's on hold as we don't have funds. It's taken IIME 5 years or so to raise the £500, 000 to fund a small rituximab follow up study. The microbiome lipkin research that wants $5m has got from patients £200 000 in 2 years? So We already know how much fundraising amongst the ME community is raising and it's small figures. The unaffected public, as Carol ahead says, will donate to MS or arthritis or cancer over us because of all the image issues.

I don't see trying to get our fair share from the state as defeatist but an important part of bringing in funds and something positive and proactive and frankly also a desperate measure. I've been ill twenty years and yet according to most people we are twenty years behind where we should be, progressing twenty times slower than MS and currently in terms of knowledge are where arthritis was in the 70s. DIY within the community over 30 years hadn't got us where we need to be and I don't see why our families who've paid tax have got no help via MRC whilst HIV and Parkinson's and MS and stroke have.

Regarding Norway I don't know how much they raised within it for rituximab , I thought it was less than 1 million ££, Norway government gave £1.5m didn't they and then the rest of the world was part of the initial fundraising campaign which I gave to. Without the Norwegian government stepping in there was lots of talk it wouldn't get off ground or that it would take years to fundraise. and fundraising for what sounded a wonder treatment drug is much easier than fundraising for something exploratory.

I think we already know roughly what CFS as it's framed in U.K. Is able to raise per year In the Private sector and I don't see that changing much within three years. 3 years is a long time.
 
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Cinders66

Senior Member
Messages
494
I've watched people on the IiME page desperate,y fundraising with many great ideas. Unfortunately we hear regularly of disinterest and lack of support from friends and family who don't regard the illness as serious or long lasting enough to be deserving of funds I'm really surprised there's comments saying private fundraising will be the answer when the last twenty years have had such SMall amounts of cash raised, many are too struggling with ill life to be doing it and I don't feel the public are sympathetic. One alternative is getting a respected powerful celeb to champion the cause and so on but again I don't think pwME themselves are going to raise much nor do I think waiting on wills (via deceased sufferers for whom the race wasn't won fast enough) is going to.
 

Dolphin

Senior Member
Messages
17,567
I don't see trying to get our fair share from the state as defeatist
I didn't say lobbying was defeatist. I said the attitude that we can't raise any more than is already been raised privately was defeatist.

I simply don't accept that an estimated population of say 200,000 in the UK with millions of family members and friends can only raise £300,000-£400,000 a year as you have said.

One more person leaving £100,000 in their will would be an increase of 25-33%.

Lots and lots and lots of families still don't raise anything for research. It is actually the rare exception that does in my experience. Even the voting contest for the National ME/FM Action Network in recent months only got
a 4 digit vote figure. People had 18 votes to give it one time. This suggests that only a few hundred people voted. In previous years $5000 was won for research but this didn't happen this year because most people didn't bother. People can thumb their noses at raising money privately for research if they are solely focused on lobbying.

Also £300,000-£400,000 a year in the UK is many multiples of what is raised in other countries. A big problem is that there is little or no fundraising at all in most countries. Even if the limit is £300,000- £400,000, that would be millions if it was replicated around the world..
 
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Tuha

Senior Member
Messages
638
I've watched people on the IiME page desperate,y fundraising with many great ideas. Unfortunately we hear regularly of disinterest and lack of support from friends and family who don't regard the illness as serious or long lasting enough to be deserving of funds I'm really surprised there's comments saying private fundraising will be the answer when the last twenty years have had such SMall amounts of cash raised, many are too struggling with ill life to be doing it and I don't feel the public are sympathetic. One alternative is getting a respected powerful celeb to champion the cause and so on but again I don't think pwME themselves are going to raise much nor do I think waiting on wills (via deceased sufferers for whom the race wasn't won fast enough) is going to.

I dont agree here and for exmple the amount of money raised in UK which mentioned dolphin is very bad. If everyone from us would do a small effort we would do much better. I am a member of a small ME community (200 members) and I raised there a topic that if we dont struggle financialy we should consider to donate to ME research. I think noone from the community did it before (regarding the reactions) and they even didnt think about. I know that 2-3 members donated and maybe more.

What I do and is really the easiest way I ask my parents and the closest friends 1-2 times a year if they can donate. Noone refused me. We can talk about this topic in our ME communities. I am planning to do a small dinner for my friends where the entry will be money donation for ME research. It´s our life so we should try everything possible. Now the patients are able to bring around 5 mil. USD a year for ME research. If more ME patietns would do a small effort and the things which I mentioned it could be 15 mil. USD and this could help several research projects (OMF, Lipkin,IiME) move much faster. We need some evidences (like those metabolic findings) to convince federal agencies to fund ME research. So in this periode where there is only a small support from federal budget - patients donations is the only way how to finance ME research
 

Dolphin

Senior Member
Messages
17,567
I dont agree here and for exmple the amount of money raised in UK which mentioned dolphin is very bad. If everyone from us would do a small effort we would do much better. I am a member of a small ME community (200 members) and I raised there a topic that if we dont struggle financialy we should consider to donate to ME research. I think noone from the community did it before (regarding the reactions) and they even didnt think about. I know that 2-3 members donated and maybe more.

What I do and is really the easiest way I ask my parents and the closest friends 1-2 times a year if they can donate. Noone refused me. We can talk about this topic in our ME communities. I am planning to do a small dinner for my friends where the entry will be money donation for ME research. It´s our life so we should try everything possible. Now the patients are able to bring around 5 mil. USD a year for ME research. If more ME patietns would do a small effort and the things which I mentioned it could be 15 mil. USD and this could help several research projects (OMF, Lipkin,IiME) move much faster. We need some evidences (like those metabolic findings) to convince federal agencies to fund ME research. So in this periode where there is only a small support from federal budget - patients donations is the only way how to finance ME research
Well done and thanks, Tuha.

I know you have also have done great work promoting and getting votes in the voting competitions that have raised over $200,000 if I recall correctly in recent years.
 

Dolphin

Senior Member
Messages
17,567
There is no reason if one thinks lobbying to get money for research is useful, why one can't do that and also donate and/or fund raise (and/or encourage family members to donate and/or fund raise) for research.

But based on what I've seen there is a lot more potential to raise money privately if people would take ownership of the problem rather than simply say for example that is governments' problem. This idea that it is governments' responsibility to fund all or nearly all of the necessary research I think is why more money privately isn't being raised.

As I said, governments outside the US don't raise that much from medical research when one considers the hundreds of major conditions and thousands of rarer conditions and also that they also fund basic research studies that isn't specific to particular illnesses.

And also to get a fair share of it you need a good amount of researchers to be making applications for funding. And money to fund some of the projects which inevitably won't get funded.
 

Cinders66

Senior Member
Messages
494
The numbers I quoted we are raising in uk was a guesstimate based on what I observe charities reporting that they are funding. It wasn't a negative estimate as to what could be raised , it was An observation of what is being raised with all the efforts out there to date to encourage donation. I do agree more could be done on that front especially by the charities and raising for specific projects has been more successful than just waiting for donations.

I agree that there is apathy/inaction in certain quarters, especially maybe those in the mild category who perhaps just arent aware of the seriousness/longevity of the illness or how others are affected. In the severe category where people are acutely aware they are usually very cash strapped, trying to fundraise just for advocacy etc and trying to survive generally. ofcourse MEA a couple of years had their Christmas appeal on educational materials for GPs instead of research so money is stretched thin.

Regarding is lack of giving is due to expecting the state to provide, maybe some people are very naive, but it's not as if there's been visible effort getting the state to step up diverting attention. I have actually gone without niceties of life and given in desperation because I've been well aware that the research projects won't get off the ground unless patients self finance them. 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.

Re taking ownership, maybe a fresh new initiative could take off in uk if it could outreach and rally but I don't know else what can be done to change things so that next year we are drawing In much more than this, even on forums there is just a very small group who contribute and I assume the many thousands rest are just getting on with it or so, how are they reached outside charities, I don't know and AFME are just diversion. . Hope of big breakthroughs and good Drs at the helm can inspire giving but in uk I don't know that we have the ingredients. both MEA and AFME have paid fundraisers I think but it's not elevating it.
 
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Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
So, what did the Norwegians do that we haven't? Or is it simply because they didn't have the stereotype view to begin with?

I asked Jørgen Jelstad that question years back, he gave me the impression that things in Norway are more similar than it may appear from the outside (stigma etc). But perhaps it might be worth someone asking him again.
 
Messages
2,125
A lot more money for ME/CFS research could be raised if people remembered it in their wills

The problem is knowing who to leave it to; I am currently looking at having to write a new will as when I did the last one (some time ago) I left a substantial percentage to Action for ME:eek:

Some of the big (not ME) charities offer a subsidised/free will making service, and others are on a scheme which is only for one month of the year.

(Cost of a single, simple will is from around £200).

eta: Hopefully, I'll live to see the day when there is treatment or even a cure:) but even if/when that day arrives there will always be sufferers who will need help and guidance.
 
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Invisible Woman

Senior Member
Messages
1,267
The problem is knowing who to leave it to; I am currently looking at having to write a new will as when I did the last one (some time ago) I left a substantial percentage to Action for ME:eek:

Some of the big (not ME) charities offer a subsidised/free will making service, and others are on a scheme which is only for one month of the year.

(Cost of a single, simple will is from around £200).

Here is the MEA link for bequests:
http://www.meassociation.org.uk/how-you-can-help/legacy/

£200 is a lot of readies - especially for someone not working....

I wonder if we could band together somehow - perhaps via an MEA initiative? If we, in the UK, could over a period of say 6 months, commit to making a will and all use the same nationwide chain of solicitors and perhaps get a percentage discount if we make a bequest to the MEA? Win-win all round? What do you think @charles shepherd ? Would the MEA be prepared to broker such a deal?
 

Cinders66

Senior Member
Messages
494
So when we all die, there might be a bit of a boost in uk research funding for the illness that got so little whilst we were alive? I am unable to see encouraging sick people to make wills leaving money to ME research as the answer.
 

Invisible Woman

Senior Member
Messages
1,267
So when we all die, there might be a bit of a boost in uk research funding for the illness that got so little whilst we were alive? I am unable to see encouraging sick people to make wills leaving money to ME research as the answer.

Right. Lets all do nothing at all then.....of course we want the money NOW but in the world of finance and charities, knowing that there may be some income in the future can help.

Also, it might just help folk who need, but can't afford, to make a will now.

If we're just going to shoot down suggestions, then no one is going to bother suggesting anything.