#MEAction - UK Organiser

[Dolphin]

Interestingly I have come to the exact opposite conclusion. I don't think we have ever put that responsibility on governments, we've supported one another and fundraised the little bits that we can amongst ourselves for the past 50 years and never had a grassroots movement that puts continual intense pressure on governments to act..

For 50 years?
For the first 20 of those, I don't think much was raised anywhere and it has been going up a lot in the last 20 years. It's not the case that it is some sort of steady amount over the years. Groups like Invest in ME and the Open Medicine Foundation have shown that with enough enthusiasm, new means can be found to fund-raise.

But even now there is not much grassroot fundraising (apart from asking people in the ME community to donate) outside the US and the UK.

Even if globally we could raise 10 times the amount we do now, we'd be miles away from equitable or commensurate funding. But I don't see much scope for that anyway, we are a group of severely disabled people, mostly living on benefits (and many in poverty), who's social functioning is also shown to be severely limited, meaning that we do not have the friendship circles or connections that would help us to raise more funds.

There are all sorts of people in the community. Some are in poverty or close to it, others' situation is not so bad. Given the numbers of people affected, 15-30 million worldwide, people don't have to give or raise that much individually to get a big total.

Millions could be raised each year if more people left money in their wills. Even somebody who might not have much when they are alive, may own the property they live in and so have quite a lot they could leave in their will. Some people will not have children that might expect money from their will. Six-figure sums by an individual could be possible in some cases. I saw the 25% ME Group got £180,000 from somebody a couple of years ago. The Nightingale Research Foundation also got some donation like $180,000 in the last few years. One of the big UK ME charities, I can't remember whether it was the ME Association or Action for ME got £300,000-400,000 from somebody in the last few years.

So I don't accept any sort of nihilism regarding what can be raised.

If people want to lobby because they think it will work, that's fair enough, but I simply don't accept that the massive increase in the amount that has been raised privately in the last 20 years can't be continued when more people put their mind to it. It is coming for a low base in many countries.

I accept some people can't donate or fundraise for research but I don't think others should be put off.

 

[BurnA]

I accept some people can't donate or fundraise for research but I don't think others should be put off.

I don't think anyone was being put off, however it seems this is a bigger (and maybe more interesting) discussion and might worth starting a new thread to discuss this merits of advocacy vs research donations ?

 

[Adrian]

I was going to let it go but as you have highlighted it, I feel I have to comment on it. I find this a negative attitude. There are estimated to be 15-30 million affected worldwide (some estimates would give higher figures). They would have maybe 100 million+ close relatives and know hundreds of millions of people. Such a group can do a lot including raise a lot if it puts it mind to it.

What needs to be done is what works. I think that will vary from country to country. For example, I’m far from convinced lobbying for research will make much difference in Ireland (my country) partly based on some experience.

I think I tend to agree. Charities could raise a lot for research and also an effective way to increase government research funding it to seed some initial research that can be turned into bigger projects that can apply for government funding. One of the issues raised by government is lack of good research proposals so charity funded projects can help there. The thing I worry about with Charities is their ability to choose and target research money and then make sure it is well used.

In terms of Ireland I wonder if its better to push for more EU funding than more national funding?

 

[Dolphin]

Saying all I've said, it does seem possible that in the UK enough pressure in the short- or medium-term might lead to some extra money. Unlike in many countries, I think there is a good case that there has been bias in the past with what has been funded and there are some researchers who taxpayer-funded bodies could support.

But I think the long term strategy should be a mix of public and private money to optimise the chance for progress. It shouldn't be forgotten that outside the US the total research budgets involved are much smaller. I recall looking into it around 13 years ago, and MS charities were raising £13-15 million for research each year. The MRC was giving something around £1 million to MS research. A fair amount might be a few million a year for ME/CFS in the UK.

Anyway well done and thanks to anybody who gives their precious money and/or time to the cause in whatever way they feel is best. A big problem worldwide I think we have is how many people who could contribute in some way, don't. We need to mobilise the millions missing.

 

[Cinders66]

But th

I think I tend to agree. Charities could raise a lot for research and also an effective way to increase government research funding it to seed some initial research that can be turned into bigger projects that can apply for government funding. One of the issues raised by government is lack of good research proposals so charity funded projects can help there. The thing I worry about with Charities is their ability to choose and target research money and then make sure it is well used.

In terms of Ireland I wonder if its better to push for more EU funding than more national funding?

But they haven't over thirty years been successful so what are they then doing wrong? Are they not employing the right staff? We can't just say more could be raised privately when it simply isn't being without showing what needs to change.
In fact charities, even solve ME CFS who've written on this topic, all say they struggle to raise money. Compared to the MS Society in uk who are funding over sixty projects to the tune of millins, our charities just aren't. So there's either a massive failure to inspire their members or get members even - membership is low , again compared with MS affecting many less - or there's many factors impacting our communities ability to give and raise money, including from the general public.

I think our terrible name , terrible public image and PR, mixed message on treatment and prognosis (exercise is cure & vs degenerative and terminal), debilitation and inability to work for money, even get benefits etc etc plus the factors other people have suggested, are major factors making this a stigmatised illness requiring special government measures. We deserve more than MS get due to our neglect and the stigma. In Ireland it might be different as I think it's a low tax low state spend economy and there seems to be some political aversion to state responsibility which people are entitled to but I don't share.

I personally don't understand the invisibility of ME across Europe where there must be millions of people who are doing what? But in uk vs other uk charities we fall. way behind.


The population is prime age , not old age, expecting a large income from wills seems unrealistic. Perhaps the elderly with it are inclined to give to families money when they could not give their energy and time.

I don't think there has been a massive enough increase in money that the community raises and don't think activism on funding represents nihilism but matter of fact response to what's coming In and desperation for more. Plus a sense of justice, we haven't had government funding for biomedical research but we have had Drs trash our illness in the press, rebrand it against our interests etc.

OMF have the world fundraising for them and if you take out large philanthropist individual donations they were falling below their target.

I do think we should be pushing for both, but we haven't been in uk pushing for government funds, there's not been petitions or lobbying on funding at all the past ten years, there's been accepting half measures from the MRC by our charities and absolutely no patient movement being led on it. I've been totally against that. That's why we need #ME Action but is there a deal being set up by the establishment as we debate this.

 

[Cinders66]

The question on why the millions affected haven't to date in any way been mobilised is an interesting one. Why money isn't coming in from the millions affected and their loved ones is obviously debatable, like any issue there will be different opinions, but an interesting one. Perhaps a survey could be organised about donating & fundraising asking how much, how often, why not more etc

People might like to read this thread from last year

https://forums.phoenixrising.me/ind...ident-on-me-cfs-research-funding.50164/page-3

Where it's discussed following the write up from Carol head on this topic. A lot of interesting comments and some arguments, I think it covered a lot , got quite heated, with not necessarily a lot of light given as a year on both sides are saying the same

I personally would welcome discussion on WHY fundraising privately is low compared to in some ways comparable illness MS & Parkinson's, and this looked at from both uk & USA Australia & Norway perspective as well as the quieter areas of the world. . This to me would illuminate IF anything and what can be done about it as well as illuminate the raise privately vs advocating for state funding debate. I might start a thread next week. im guessing #MEAction discusses all this behind the scenes too.

 

[Dolphin]

The population is prime age , not old age, expecting a large income from wills seems unrealistic.

People are all sorts of ages. From what I recall from surveys of groups including the one I help run myself more than half are over 50. And people with the illness don't tend to recover.

Estimate of 15-30 million people with ME means hundreds of thousands of people die with the condition each year. You don’t need that many giving to raise millions, tens of millions quite possible.

In Ireland it might be different as I think it's a low tax low state spend economy and there seems to be some political aversion to state responsibility which people are entitled to but I don't share.

This reminds me of when you replied to me in the thread you linked to saying:

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.

https://forums.phoenixrising.me/index.php?goto/post&id=829895#post-829895
which was a complete misrepresentation of my views. My views are pragmatic. The budget of the MRC and similar bodies are a tiny fraction of health spending. Health research is not like universal healthcare where the state pays for all necessary healthcare. The research budget is simply not there in individual countries outside the US to find cures for all conditions. State funded bodies can fund some projects but to maximise the chances of breakthroughs and cures also having privately funded studies is better.

don't think activism on funding represents nihilism but matter of fact response to what's coming In and desperation for more.

Given I use the word nihilism you are presumably referring back to what I said. I said:

So I don't accept any sort of nihilism regarding what can be raised.

which is completely different to what you said. One can advocate without having to tell the community that they can't raise much or enough money themselves. My impression from being involved in charities is that people look for excuses not to give to things, we shouldn't facilitate this.
I think we are shooting ourselves in the foot to facilitate excuse-making regarding fundraising and donating. We should want to maximise research money from all sources.

 

[Cinders66]

People are all sorts of ages. From what I recall from surveys of groups including the one I help run myself more than half are over 50. And people with the illness don't tend to recover.

Estimate of 15-30 million people with ME means hundreds of thousands of people die with the condition each year. You don’t need that many giving to raise millions, tens of millions quite possible.


This reminds me of when you replied to me in the thread you linked to saying:

https://forums.phoenixrising.me/index.php?goto/post&id=829895#post-829895
which was a complete misrepresentation of my views. My views are pragmatic. The budget of the MRC and similar bodies are a tiny fraction of health spending. Health research is not like universal healthcare where the state pays for all necessary healthcare. The research budget is simply not there in individual countries outside the US to find cures for all conditions. State funded bodies can fund some projects but to maximise the chances of breakthroughs and cures also having privately funded studies is better.

Given I use the word nihilism you are presumably referring back to what I said. I said:
which is completely different to what you said. One can advocate without having to tell the community that they can't raise much or enough money themselves. My impression from being involved in charities is that people look for excuses not to give to things, we shouldn't facilitate this.
I think we are shooting ourselves in the foot to facilitate excuse-making regarding fundraising and donating. We should want to maximise research money from all sources.

Yes as I wrote it I had the sense of "been here before". I didn't search up the PR thread , I searched Carol head and then saw the thread and then it all CAme back. Im sorry if I'm misrepresenting you again but how you write including on the other thread the view that it's not the states job seems to come across but I saw you write then also that you are purely pragmatic.

However I feel on this thread and before you are arguing that those of us who advocate for more government intervention are saying that we shouldn't bother donating or it's not our responsibility to donate which we aren't either. The government recently injected £20m into brain cancer , that could transform our field if researchers could be "bribed" to enter it. Your words have got me thinking though and I do think that the raising funds privately needs as much a boost and attention as the extracting funds from government In countries outside USA. Perhaps #MEaction can inspire both. .

Regarding nihilism ideas on fundraising potential, the fact is that whilst you can argue what could be theoretically raised , I am saying that despite some efforts, consistently the amount raised seems to be low. A discussion on why and what can be done to me would be interesting and something I don't think we do enough but there are some explanatory factors it seems to me, more than people assuming we can buck pass etc, wouldn't that apply to all illness, people preferring others to take up the tag and the bill, but it doesn't. Why are PwME raising less than pwMS? I don't accept they're being sent the message it's not their responsibility because I don't think the charities in particular have at all given the Impression it's the states job. The charities to date have been the ones with reach , are they the issue? Have they set limits on ambition because of low research interest to even raise for?

Is a major problem as stated in the other thread that many people are hoping they'll just get over it and so do their families so don't see the need for THEM to financially contribute? A lot of the narrative has been on " living with" and " self management" and edging forward rather than how are we going to beat this monster. In my opinion the severe haven't been enough of a rallying cause, for those who hope to just get a lot better, to action.

Quoting huge numbers affected discords with the tiny numbers who engage on worldwide forums, protest and seem to donate , 1000 people to David tuller, 2-300 so far to uk #MEaction probably some of the same. Jen said she had thousands of uk subscribers to the uk #MEACTION so I assumed money would pour in but it doesn't. The uk biobank Xmas appeal raised just £10-20 000 despite MEA (mistakingly in my view, not making any appeal as usual, no competition therefore), however action for ME raised £100k almost overnight for their appeal so perhaps part of the issue has been action having most members , including probably high function with income maybe but not being up until now good at/interested In fundraising from them for research ? MEA has just 5000 members. Is the amount they raise good or bad for their size? If #MEAction became a charity perhaps they have an urgency and so on that could change the amount raised for research with members joining who perhaps wouldn't join AFME.

Fundamentally I want to maximise income from all resources too, I think we all do but we aren't effective at any so far so looking at why in detail on both fronts seems worthwhile and interesting to me. One thing to compare is other charity membership numbers vs ME. And why, are there too many, are NHS Drs not recommending it like fir other chronic illness etc etc.m
Anyway it's got rather off topic so I will start a new thread.

 

[Dolphin]

Thanks for your thoughtful post @Cinders66

I think what the #millionsmissing protests on- and off-line as well as Jen's film Unrest have done well is highlight the losses people with the illness and families go through and the impact of the illness. I've been dealing with severe ME for over 2 decades (and was more severe again for a while) and through my charity work have dealt with lots of people with the condition and I was moved so I imagine it has been an even eye-opening for others.

I just want initiatives such as that and awareness raising in general to have the maximum impact in both getting more money from government funding but also in terms of donations and fundraising by the ME community and their contacts. Hopefully having seen the #millionsmissing protests, Unrest, etc people will be less shy about fundraising and also realise that ME is a worthy cause to support in wills etc.

I'm grateful to all those in #MEaction for their work and to anyone who has been supporting them financially. I really hope more money can be extracted from the MRC, NIHR, etc. for more research.

 

[Tom Kindlon]

New thread:

Please consider supporting ME/CFS causes in your will
https://www.s4me.info/threads/please-consider-supporting-me-cfs-causes-in-your-will.4640

 

[Dolphin]

I was going to leave this thread alone but I thought this post from yesterday was interesting.

The development of effective treatments for rheumatoid arthritis has not come from government money. Most of it was patients' own money given to charities for research - which is then research money.

As I say I want to maximise both public and private money for research. I have been ill for 29 years and severely affected for 23 years. I just want progress before my life is over both for myself and for other people.

 

[adambeyoncelowe]

The numbers quoted in this thread for monies raised by ME charities are saddening. That's not an insult to charities or patients, but a recognition that they're tiny amounts. We don't need five-figure or low six-figure sums. We need millions.

ME has evaded understanding in a way other illnesses haven't. £100,000 might be fine if you understand what's going wrong and just want to try something new in that illness. It's not fine if we don't have a clue and need to test lots of different things.

There's also another issue: even if ME patients could afford to support all the research we need, why should we have to? This is a major problem worldwide. There's a duty of governments to find a solution.

The THT example is a good one. They get lots in private donations, but even a few one-off grants from the Government can be enough to embed the foundations of a powerful and successful advocacy movement. It can get dedicated fundraisers who then do nothing else but bid for contracts, and apply to grants and funds. That money complements, or often vastly exceeds, the funds raised by public-facing fundraising activities.

Where public donations really work is when you get big sums from philanthropists. Think the OMF's money from The Pineapple Fund, or the big fundraisers held by celebrities (think of things like the Elton John Foundation). We also have to bear in mind that most patients aren't working, or are only working part-time, which makes it even harder to commit huge sums.

I think donations are of course a vital income stream for any movement, but they can't be your sole income stream. And different income streams are better at different stages. Government money can help us get our feet, make some headway with research, and make charities more resilient, which then puts those organisations in a better position to receive and solicit donations going forward.

 

[Dolphin]

There's also another issue: even if ME patients could afford to support all the research we need, why should we have to? This is a major problem worldwide. There's a duty of governments to find a solution.

Because you don't want a cure not in 100 or 200 years but as quickly as possible. When you crunch the numbers, the research budget of something like the MRC isn't going to find cures for all the hundreds of major conditions and thousands of less common ones in the UK in a short timeframe.

In 2016/17 the MRC’s gross research expenditure, funded by our BEIS budgetary allocation and contributions from other bodies, was £755.5m

https://mrc.ukri.org/about/what-we-do/spending-accountability/facts/

Yes certainly try and get as much as you can from them but to speed up progress get money from as many sources as you can. Researchers also tend to need pilot data to prove that their hypothesis is somewhat plausible before getting government grants.

The THT example is a good one. They get lots in private donations, but even a few one-off grants from the Government can be enough to embed the foundations of a powerful and successful advocacy movement. It can get dedicated fundraisers who then do nothing else but bid for contracts, and apply to grants and funds. That money complements, or often vastly exceeds, the funds raised by public-facing fundraising activities.

I think donations are of course a vital income stream for any movement, but they can't be your sole income stream. And different income streams are better at different stages. Government money can help us get our feet, make some headway with research, and make charities more resilient, which then puts those organisations in a better position to receive and solicit donations going forward.

I don't think governments generally give money to research charities to help build up. The main money that gets given out is to charities that provides services. I don't know whether it might be possible that #MEaction might be able to get grants?

 

[Trish]

I don't think governments generally give money to research charities to help build up. The main money that gets given out is to charities that provides services. I don't know whether it might be possible that #MEaction might be able to get grants?

I hope ME charities don't get government money. If you do, you are expected to do the government's bidding.

 

[Sasha]

dedicated fundraisers who then do nothing else but bid for contracts, and apply to grants and funds. That money complements, or often vastly exceeds, the funds raised by public-facing fundraising activities.

I'm currently reading Doing Good Better (about effective philanthropy) and noticed an average figure of $4 raised for every $1 spent on fundraising (though the range must be huge, because for one charity they looked it, it was $100 for every $1).

But if that's the average, I wonder if it would be worth our charities employing a professional fundraiser - even between them, to raise money to go into a joint biomedical research pot.

 

[Sasha]

BTW, I think this fundraising issue could do with its own thread - it's very important and people with an interest in it might not notice it under the current thread title.

 

[Trish]

I suspect employing fundraisers is only effective if it is for a charity that the 'general public' are likely to support such as a cancer charity. There is already lots of public willingness to give to such charities if it's stuck under their noses.

We have the added hill to climb of not being a popular cause in the public imagination. We have a whole level of awareness raising to go through first for the 'general public' to even consider us a worthy cause. I have no idea whether a professional fundraiser is the right person to do that.

I am guessing if most people were given a choice of donating to cancer research and ME research the cancer charity would get most of the donations.

 

[Dolphin]

I suspect employing fundraisers is only effective if it is for a charity that the 'general public' are likely to support such as a cancer charity. There is already lots of public willingness to give to such charities if it's stuck under their noses.

We have the added hill to climb of not being a popular cause in the public imagination. We have a whole level of awareness raising to go through first for the 'general public' to even consider us a worthy cause. I have no idea whether a professional fundraiser is the right person to do that.

My family and other volunteers have held many blue ribbons in public places in Ireland over the years raising tens of thousands. We had to stop for a few years as we didn't have charitable status but are now restarting. Attitudes have generally been good with with often no negative comments in 10+ man-hours of collecting.
The normal sum asked for was €2. It doesn't mean these people would necessarily give large sums.

We have also successfully done all sorts of other fundraising e.g. golf classics. Particularly when there is a family connection (to the organiser/one of the organisers) people will often support.

 

[Trish]

Thanks, @Dolphin, that's good to hear.

 

[adambeyoncelowe]

Not all grants are for services (many funds will specifically give grants for 'core costs', which includes staff and day-to-day advocacy), and even those that are usually factor in some amount to contribute to overheads (in 'project management', usually).

Some grants are really 'donations', but they come with strings attached (specific outcomes that meet the aims of the grant body). As Trish points out, that can be a problem, but I would deal with that bridge when it comes to crossing it (hopefully with bags full of money in hand).

In my opinion, the concept of patients trying to crowdfund biomedical research is understandable but it also isn't working fast enough. We're not getting the results we need, nor the follow up, to give us answers. For every one good trial we're getting now, we need at least two more to show the findings are reproducible.

It's probably no surprise to anyone that research into ME has been mostly very poor. I'm just not convinced that continuing as we have been will yield a vastly different state of affairs any time soon.

Donating to advocacy now might ultimately result in more money for research tomorrow, if we take the long view. Of course, it might fail, and I think that's part of the fear--why give up one bird in the hand for four in the bush? But it's hard to know if we don't at least try it.

There's also a moral and political point here: disabled people shouldn't have to crowdfund their own treatments. That's partly what the state is there for--to manage public health. Of course we do, and we want to, fund research, but we shouldn't have to. It's a travesty that we do.

It's true that governments only have limited funds to inject cash into research, but we're not saying they should support everything all at once either. What gets funded and what doesn't is political. The more high profile a thing is, the more likely it is get funded for at least a short while. ME has been neglected for a long time, so now is the opportune moment to finally speak up and say, 'It's our turn.'

Ring-fenced funds are usually only for a limited time period, but they're what we need to make some headway. Imagine what we could do with guaranteed cash for three, five or even ten years! It doesn't have to come from the MRC even. Government has other discretionary pots of money to use, especially if it's teaming up internationally with other states to tackle the issue. The UK Government recently contributed £100m internationally to malaria, for example. Other countries put in too. Granted, it was on prevention rather than research, but it shows that health can be a priority. Imagine if 10 nations put in £100m each for ME...

There's also some evidence that when governments (and charities) invest in medicine, it encourages private companies to increase their expenditure too: https://www.rand.org/blog/2016/04/public-funding-of-medical-research-pays-for-itself.html. That means pharma support may follow even a short-term investment by the UK Government. (There's 99p invested in R&D by private organisations for every £1 invested of public money.)

Return on investment for public health initiatives ranges from 125-3900%, according to this: https://www.sciencedirect.com/science/article/pii/S2211335516000036.

Likewise, 'In 2013/14, for each pound spent on generating funds (excluding investment management), £4.21 was raised' among charities, non-profits and community organisations. (Source: https://data.ncvo.org.uk/a/almanac16/generating-funds/)

I'm currently reading Doing Good Better (about effective philanthropy) and noticed an average figure of $4 raised for every $1 spent on fundraising (though the range must be huge, because for one charity they looked it, it was $100 for every $1).

But if that's the average, I wonder if it would be worth our charities employing a professional fundraiser - even between them, to raise money to go into a joint biomedical research pot.

It's similar to the figure I found (above). My guess is that fundraising here means from public, private and governmental sources in total. That's still very good. And all that extra money could be put towards new studies, or reproducing the studies we're currently funding.