Donating and fundraising by people with ME/CFS - discussion thread

[tornandfrayed]

I don't fundraise from family and friends because I think it's up to them what they donate to. I feel bad enough even mentioning my own symptoms or difficulties. I don't want to spoil what little contact I have with them by trying to get them to donate.

I have also reached the age where most of my friends and family members of my generation are either dying, seriously ill, or have people close to them suffering from more deadly diseases. How can I ask someone whose husband has died a horrible death from Parkinsons disease, or whose wife has died of cancer to donate to my condition that doesn't appear to be killing me?

I can count on the fingers of one hand the people who have ever shown any interest in understanding how sick my daughter and I are and what our lives are like. All most of my extended family and former wider circle of friends know is that I disappeared from work or social life with something they only see as fatigue. They never asked, they only saw me at my best and disguising my symptoms, and I didn't push any explanation on them. I just wanted to be 'normal'.

As a result I now have very few contacts with the outside world, with extended family far away, and too sick to see friends.

That all probably sounds irrelevant, but I tell it because I think it applies to a lot of us. Many of us are invisible. We play no part in other people's real lives, so why would they respond to a request for funds?

I think we have to be realistic.

I applaud the efforts of Robert and others who have been able to keep up relationships with others and communicate effectively with them to raise funds.

But I also think a better course of action for most of us is to encourage our charities to better efforts at fundraising from big donors.

I agree wholeheartedly with all of this. It's just not worth endangering the occasional contact we still have with a small number of people by asking them for donations.

I can count on the fingers of one hand the people who have ever shown any interest in understanding how sick my daughter and I are and what our lives are like. All most of my extended family and former wider circle of friends know is that I disappeared from work or social life with something they only see as fatigue.

It's odd that no one I have rare contact with seems to think I'm very ill or not involved in normal activities, although they know I've not worked for three decades. Fortunately they're accepting and not judgemental about that, but it doesn't seem to occur to them that I have to have something life-changing for that to be the case.

 

[Binkie4]

Briefly because I have other treatments currently in progress, most of the above apply to me apart from my husband and daughter raising money via sponsorship. Both sums raised were generous but they collected from the same group of people who cannot be repeatedly approached for obvious reasons. Our son has chosen to raise money for cancer charities- his wife died a painful death from cancer in her thirties which overwhelmed him- I am sure he has thought that a much worse condition.

Other people do have their own charitable interests and donations need to be reciprocal.

I cannot seem to ask people directly for money. For a start not everyone has money to spare. What I do do relentlessly is post stuff about ME on my fb page. I don't tweet. Yesterday I posted Decode's latest post. Tom Kindlon's are helpful, occasionally the ME charities. It would be a rare week when I don't post about ME once or twice. I don't care about the stigma attached to our illness or wonder if it will reflect on me. I just do it. I have a sister who shares most of what I post but few other people show any interest.

I have two loyal friends who I keep in touch with mostly by phone who seem to " get" ME to an extent but a large number of friends have dropped away. The stigma and misinformation are dreadful.

 

[Hutan]

Problem

The MEA’s annual subscription is quite high for disabled PwME.

A solution might be for charities to consider dropping the membership fee altogether. Even just the admin is a friction for potential members and a significant cost for charities. At 18 pounds, if the MEA has 5000 members, that's 90,000 pounds. That is not nothing, but take off the, I don't know, 20,000 pounds of admin sending out invoices and reminders and dealing with related issues, and it's less.

If charities made their membership fee zero, they probably would significantly increase their membership numbers and stop the often permanent losses when members have a financially difficult year. A charity with 15,000 members is more likely to attract grant funding than one with 5,000 members. In my experience, grant funding is pretty easy to get for charities that can demonstrate they are supporting people. I'm not talking about funding research there, but for things like funding a support nurse, or for new computers, or providing an information service.

Most importantly, the charities then have a big pool of people potentially reading their emails and other content. They can pull people in to participate in research or advocacy. And they have a bigger pool of people to make donations and leave money in their wills. You only need one person a year or even every five years to die having left the charity their estate to cover the foregone membership fee.

Humans were made to reciprocate. If you charge for a service, the person who has paid has fulfilled their obligation. If the charity does't seem to be offering much, the person who paid might even start to feel negatively disposed to the organisation. Whereas, if the charities make a gift of their core service, members are much more likely to want to give something back. Some will donate annually, others will contribute in other ways.

 

[Trish]

That's an interesting idea, Hutan. If they didn't charge a membership fee, they could recoup a lot of that by not publishing a paper version of their magazine and posting it out to all their members. They could just put it online. And online magazines have the added advantage of not needing to carry advertising, so they'd get rid of the ads for dodgy quacks, and they don't need to fill pages just for the sake of having a full magazine, as an online magazine can be any length.

 

[Sasha]

If charities made their membership fee zero, they probably would significantly increase their membership numbers and stop the often permanent losses when members have a financially difficult year. A charity with 15,000 members is more likely to attract grant funding than one with 5,000 members. In my experience, grant funding is pretty easy to get for charities that can demonstrate they are supporting people. I'm not talking about funding research there, but for things like funding a support nurse, or for new computers, or providing an information service.

I really like your thoughts here, @Hutan, in your whole post!

I wanted to pull this bit out. I think you make a really good point that a charity with a ton of members looks a lot more worth supporting. When you say it could get grant funding, how would the charity identify suitable grant-giving bodies? I had to try to identify trusts that might support my work many years ago using a paper directory and it was agony. Is it trusts you're thinking of?

 

[Kitty]

Interesting thoughts.

They could even set up an automated system where people who've been members for six months get an email about an optional monthly direct debit. If they feel by that time they're getting good value and their finances aren't so tight they have to take their current account right down to zero, a £2 donation is easily set up and the amount's less likely to be missed. It also adds up to more per year than the current sub.

When you say it could get grant funding, how would the charity identify suitable grant-giving bodies?

I don't know if it's so much about identifying trusts (there are third sector organisations that offer grant-finder type services for that anyway), it's about evidencing the value you offer to the community. And it really matters.

The thing I like about this idea is that it's not only about numbers. It's about involvement and consultation. You often have to show how you identified a need for what you're offering, how you worked out the best ways to meet that need, and how you know you're continuing to meet it. You can't do that without consultation and real involvement, and a Facebook page isn't enough on its own. Your community aren't all on Facebook, and it's a shallow type of engagement anyway. To be really convincing, you need breadth, depth, and innovative ways of reaching the people who're furthest away.

In particular, you need to avoid assuming you know what your members need better than they do, banning people with an awkward question habit, operating with neither accountability nor transparency, and publishing tone deaf opinion pieces that will alienate nearly everyone who's paying attention.

 

[Sasha]

They could even set up an automated system where people who've been members for six months get an email about an optional monthly direct debit. If they feel by that time they're getting good value and their finances aren't so tight they have to take their current account right down to zero, a £2 donation is easily set up and the amount's less likely to be missed. It also adds up to more per year than the current sub.

I really like that idea!

The thing I really like about this idea is that it's not only about numbers. It's about involvement and consultation. You often have to show how you identified a need for what you're offering, how you worked out the best ways to meet that need, and how you know you're continuing to meet it.

And this insight!

 

[Hutan]

When you say it could get grant funding, how would the charity identify suitable grant-giving bodies? I had to try to identify trusts that might support my work many years ago using a paper directory and it was agony. Is it trusts you're thinking of?

Yes, as Kitty says, there are organisations that help identify grants, things like disability service hubs. Even just internet searches can throw up interesting options. Helping a charity find such grants and apply for them might be a lot more productive in terms of bringing income in than repeatedly asking/badgering your small circle of friends to donate to your gofundme page.

Of course some of the grantors have onerous requirements, but many do not. And, even if there are accountability requirements, as Kitty says, that can be a good thing as it makes the organisation think 'is this project we are seeking money for something our members will benefit from, how can we show that it is a good use of the money?, how will we know when we have successfully used the money? how will we report about it?'

Also, it's a good way to raise the profile of ME/CFS in the community. A funding trust will usually want to tell the world who they awarded money to, and later they will want to tell stories about the good their donation did. Everyone who reads the media articles and sees that the local ME/CFS charity received funding alongside the hospice and the Boy Scout troop will be more likely to think of people with ME/CFS as being worthy of support. Instead of asking 'have you tried meditation?' or whatever when they next come across a person with ME/CFS, those readers might ask 'have you seen that there is a local ME/CFS patient group, they seem quite active and good?'. Some of the funding trusts even hold events for the organisations they support, which help with networking e.g finding the accounting firm who offers free accounting services for charities, or being able to send one of your committee along to a free training seminar on good governance.

 

[NelliePledge]

I requested donations instead of gifts for my 60th birthday. I was quite pleased to raise a few hundred quid at the time. However I do rather regret the choice of recipient

 

[Kitty]

that can be a good thing as it makes the organisation think 'is this project we are seeking money for something our members will benefit from, how can we show that it is a good use of the money?, how will we know when we have successfully used the money? how will we report about it?'

See also: We might need to get our arses in gear if we want a cat's chance in hell of getting this. Right, how do we let people say what they need us to hear, instead of shutting them down in case they make us look bad?

 

[Sasha]

Yes, as Kitty says, there are organisations that help identify grants, things like disability service hubs. Even just internet searches can throw up interesting options. Helping a charity find such grants and apply for them might be a lot more productive in terms of bringing income in than repeatedly asking/badgering your small circle of friends to donate to your gofundme page.

Is that something that people here on the forum would be able to do, given the right instruction? (Because I'm thinking primarily about research funding, it would really be the national ME charities I'd be thinking would be the beneficiaries rather than the local support groups.)

 

[Hutan]

See also: We might need to get our arses in gear if we want a cat's chance in hell of getting this. Right, how do we let people say what they need us to hear, instead of shutting them down in case they make us look bad?

Yes. I don't think it's hard - just respond to the needs and concerns expressed? Recognise that there are things that need to be better and make it clear that your charity intend to fix them. Possibly you could even include a project to fix recognised deficiencies in your organisation in a budget you apply for grant funding for. I think plenty of funders would respond well to an organisation demonstrating that they are self-aware and determined to be better. For example, in the case of the MEA, maybe funding could have been found for charity governance training, for existing trustees, but also for some potential new trustees. In my country , the Institute of Directors has a range of services for directors of charities.

Personally, I think ensuring our patient charities are effective, that they are using the funds they have wisely and that they are maximising their capacity to get funding from sources other than patients, is usually a better use of patient's time than most fundraising efforts undertaken by individuals.

Is that something that people here on the forum would be able to do, given the right instruction? (Because I'm thinking primarily about research funding, it would really be the national ME charities I'd be thinking would be the beneficiaries rather than the local support groups.)

Yes, of course. But, I don't think we need to think only about research funding, or even national level charities. If you have strong local charities, you help create an informed active community - research funding, in fact so many good things, flow from that. I think that national patient charities should be strengthening relationships with local patient charities. (In much the same way as I hope S4ME can provide support to patient charities at all levels, with the fact sheets and through networking.)

 

[bobbler]

Problem


A solution might be for charities to consider dropping the membership fee altogether. Even just the admin is a friction for potential members and a significant cost for charities. At 18 pounds, if the MEA has 5000 members, that's 90,000 pounds. That is not nothing, but take off the, I don't know, 20,000 pounds of admin sending out invoices and reminders and dealing with related issues, and it's less.

If charities made their membership fee zero, they probably would significantly increase their membership numbers and stop the often permanent losses when members have a financially difficult year. A charity with 15,000 members is more likely to attract grant funding than one with 5,000 members. In my experience, grant funding is pretty easy to get for charities that can demonstrate they are supporting people. I'm not talking about funding research there, but for things like funding a support nurse, or for new computers, or providing an information service.

Most importantly, the charities then have a big pool of people potentially reading their emails and other content. They can pull people in to participate in research or advocacy. And they have a bigger pool of people to make donations and leave money in their wills. You only need one person a year or even every five years to die having left the charity their estate to cover the foregone membership fee.

Humans were made to reciprocate. If you charge for a service, the person who has paid has fulfilled their obligation. If the charity does't seem to be offering much, the person who paid might even start to feel negatively disposed to the organisation. Whereas, if the charities make a gift of their core service, members are much more likely to want to give something back. Some will donate annually, others will contribute in other ways.

that circles back a bit to governance. I hope that (but can't work my brain to check it complies today) it's OK to post this, but it makes me think of when there were signifant changes to political party membership in UK and all the various opinion-based discussion of how much that impacted the possibilities for things like entryism.

ME/CFS is much more open to this issue because if you think of around 2000s there being finally the introduction that people could be 'time poor' whilst not being money poor, there is absolutely another level for energy-limiting conditions in today's society. And then combine it with issues that involve people considering things before 'doing' vs all the tech advances that allow them to do in quite swift ways but critical thinking and considering the different sides of an issue and whether any of the arguments put forward are indeed valid and 'evidenced' as they claim... well that's a toally different level of time hurdle altogether.

 

[bobbler]

I really like your thoughts here, @Hutan, in your whole post!

I wanted to pull this bit out. I think you make a really good point that a charity with a ton of members looks a lot more worth supporting. When you say it could get grant funding, how would the charity identify suitable grant-giving bodies? I had to try to identify trusts that might support my work many years ago using a paper directory and it was agony. Is it trusts you're thinking of?

this in itself feels like an area where support on a more national and regional basis could be useful to help those who might be doing somethign local but I guess these applications at least have similarities in the local processes/support needed.

 

[Sasha]

Yes, of course. But, I don't think we need to think only about research funding, or even national level charities. If you have strong local charities, you help create an informed active community - research funding, in fact so many good things, flow from that. I think that national patient charities should be strengthening relationships with local patient charities. (In much the same way as I hope S4ME can provide support to patient charities at all levels, with the fact sheets and through networking.)

That's a very interesting possibility. I wonder what happens at the moment with ME/CFS support groups. ME/CFS is such an outlier in so many ways. Things are so bad, and people so debilitated, that many support groups might have a very limited scope and I wonder if they're far more focused on helping people survive than on getting them involved in research funding.

Other disease charities, such as Parkinson's UK and the MS Society, have local support groups, and I assume those groups get access to all the national organisations' support systems, educational materials, and - importantly - fundraising/donating/membership messaging. The MEA, in contrast, will signpost people to local ME/CFS groups but these are not MEA local groups and the MEA says it can't be held responsible for them. Action for ME doesn't appear to have local groups of its own.

There's potentially a lot of scope for getting more PwME interested in donating/fundraising there, but all of the issues and barriers to PwME doing so that we've discussed upthread still apply.

 

[Sasha]

I just wanted to thank the people who have posted their personal reasons for not fundraising, some of which are painful reasons and not easy to talk about, and many of which I share. Without this information, we're not going to understand the problem, and if we don't understand the problem, we can't fix it.

I mentioned that I don't currently fundraise. I don't fundraise even though I think that research funding for ME/CFS is mission-critical and that without it, most of us aren't going to get even a fraction of our lives back. So why aren't I fundraising?

• I don't want to be 'the sick person' in the minds of my friends and family. They know I'm sick, of course, but I hardly ever bring it up in conversation, partly because I don't want it to be my identity, and partly because it's a miserable and boring topic and I'd rather talk about fun, interesting things. I would probably feel the same way whatever my crippling disease.
• I don't want to ask when I can't give in return. And if I ask for donations to ME/CFS, I'm fair game to be asked for donations to cancer, or whatever other people are interested in, in which case I might as well just give what money I can straight to ME/CFS rather than go the fundraising route.
• I don't want to regularly tap up my immediate social circle - if anyone did that to me, I wouldn't like it.
• I don't want to tap people in my wider social circle because most of them don't know that I'm disabled (until recently, I could 'pass for normal' for about half an hour a day), or if they do, they don't know that I have ME/CFS and I can do without the stigma.
• There is no UK charity who I trust at this time to spend its research money well. My mistrust may be misplaced but I don't see any of them giving me information that would reassure me that they have processes and criteria in place to stop them wasting money on poor-quality research. Both of our big charities have shown poor judgement in certain areas lately, in my opinion. I have lately actively prevented family members from fundraising for them or donating to them and asked them to keep their powder dry.
• There is no big, exciting project to fundraise for. The only time in 40 years of being ill that I have ever contacted friends and family and asked them to donate was for the Rituximab trial. If DecodeME had needed funding, I don't think I'd have felt comfortable tapping them up again but would have done what I could to fundraise by other means.

So, those are the big barriers for me...

 

[Sasha]

We've talked about why we don't fundraise, and although some of the issues are ME/CFS-specific, I don't think they all are. If I had Parkinson's or MS - non-stigmatised diseases - I still wouldn't keep tapping my social circle for money in order to fundraise.

This raises the question: what kind of fundraising to do other disease charities get their members to do? Are there any ideas that could be copied or adapted to fundraise for ME/CFS?

I'm going to have a rest now but will then be taking a look at the Parkinson's UK fundraising page and the MS Society's. What pops up first seems to be a lot of 'Join our sponsored run!' and of course, PwME can't do that kind of thing but what we're looking for is ideas that could apply to us, or ideas that we could adapt.

Can anybody think of diseases where patients would be, like us, unable and unwise to expend energy? Or couldn't be very active for some other reason? Their charities might have ideas we could nick.

What we're looking for, I think, is a form of fundraising that wouldn't require us to call on our own social circles - even once, let alone repeatedly - and that wouldn't involve any expectation of return from the PwME ('I donated to your charity so you should donate to mine'). Maybe it would be fun, and that would be the quid pro quo!

(I should add that I don't rule out conventional fundraising for us, because the circumstances, health and attitudes of PwME vary enormously and what is impossible for some may be possible for others. But I'm looking for new approaches that many more of us could handle.)

 

[Sasha]

I recently stumbled over what I thought was an absolutely stellar fundraising mechanism by an Berlin-based rewilding organisation called Planet Wild that is building a community of people to support rewilding projects. Every month, it partners with a different organisation that is working on such a project and uses money from Planet Wild’s supporters to make a substantial contribution to a specific aspect of that project.

They make a short (10 mins or so), high-quality, wonderfully engaging, informative, positive and exciting video about the project, which anyone can watch on YouTube for free (look at this lovely one about little owls!). Their personable narrator tells you about the project on-site - no talking-head scientists frozen in terror giving over-technical explanations - and at the end of the video (see here), he gives what I think is a superb message about why you should become a backer yourself, worth repeating here in full:

"Now, none of this will be possible without our community. And a big thank you goes out to everyone who has been chipping in to make this happen. And a warm welcome to all of you, who have joined Planet Wild for the first time this month. This mission is your personal success,
and you have just unlocked the new mission badge in our app to show for it. If you haven't heard of Planet Wild yet, we are a community that
anyone can join to give back to nature and help our planet bounce back, one mission at a time. If you want to become part of this, click the link in the description. As a backer, you can vote on how we spend the money, connect with me and other members on our app and Discord, and see your own impact in video reports just like this one. The bigger our community grows, the bigger these missions we'll get. I'm looking forward to seeing you. Over and out."​

I watched every single one of their amazing videos and then I put a three-month subscription on my Xmas list for my family, and sent them all a link to the videos so they could be as entertained and amazed as I had been. It wouldn't surprise me if some of them sign up off their own bat.

Planet Wild have grown very rapidly from a handful of supporters for their first project 18 months ago to 10,000 members now. And I'm not surprised - I've never seen such an engaging ask for donations.

One of their founders is a film-maker, which explains a lot about how they were able to provide such high-quality films from the get-go. And we are not as cute as those little owls, or pangolins, or sun bears.

But I wonder what we can learn from this in terms of what our charities could do for fundraising.

There is money in the ME/CFS community. I know that many patients live in poverty and that their families' finances are strained. But that's not the case for everyone. And as well as big donors, it's hugely important for charities to have a regular stream of many small donations, even if that's only £1 a month, or £5 a year. The problem is getting people to see the point of it and to want to join in. I think Planet Wild offers an object lesson in how to do that in the context of rewilding. How could we adapt its approach to ME/CFS?

 

[Kitty]

Is that something that people here on the forum would be able to do, given the right instruction?

Probably not. You need a lot of information about how individual charities operate to work out whether they're even eligible for funding schemes, and that information isn't necessarily in the public domain. You also need to know whether they have the staff resources available to draft applications, and to deliver projects within the funders' timescales if they were successful.

In any case, I see this partly as a way to encourage charities to do their jobs better. We can't force them to change; they have to want to do it, then start to think through how they might do it, then realise they need to begin a conversation with members right from the outset. (All the members, not just the undemanding ones.)

If, for instance, the MEA decided to consider the advantages and disadvantages of doing away with a compulsory membership fee, it'd be an indication they're open to reviewing the way they work with the wider ME/CFS community. That could be the point at which people let them know, for instance, that they're currently viewed as being unnecessarily defensive, even when people are only trying to be critical friends.

If they won't even listen to ideas, we'd probably be banging our heads against a brick wall.

 

[Sasha]

I accept there can be difficulties to raise money. But there are other issues: People think the condition is treatable so they spend a lot of time and money on treatments. If people invested 1% of what they spent on treatments into research, a lot of money would be raised.

I think that spending on unproven treatments is logical and understandable, given that we don't know what does and doesn't work, especially for individuals, that most things will never undergo trials, and that there are no effective treatments being given out by the NHS - and that donating your tiny bit to research will be a drop in the ocean in finding a treatment that will help you, maybe in twenty years.

And, given the catastrophic effects that ME/CFS has on our lives, I would imagine that for a lot of people, trying these things out is the next priority in spending after food and heating. It's certainly mine, and I don't regret a penny of what I've spent, even though I don't think any of it has worked (yet). I wouldn't want to pop my clogs thinking, 'I'm really glad I never tried any unproven treatments! One of them might have let me live a life but at least I never got fleeced.'

I don't think it's realistic - or even justifiable - to expect patients to see a spend on unproven treatments as a waste of money that they should instead have been spending on research, especially since all the research so far has turned up precisely zero in terms of effective treatments. I don't think this should be our messaging.

Instead, I think it's worth asking ourselves why those PwME who could afford it don't spend some of their money - even a little - on research funding, and try to address those reasons in our messaging.

I think it will need to be something along the lines of what climate-change organisations do - be real about the terrible direction we're heading in if we don't take action, but don't make people sit there looking at the gorgon and being turned into stone - instead, show them a positive and exciting path that they can tread as part of a growing community of people taking action that will be powerful if they all come together.