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

I think you're right! Providing an enjoyable thing to do is a good way to get healthy people to support us, and it doesn't even have to involve sponsorship. I had a squiz at Parkinson's UK and they've partnered with an organisation that offers adventure trips (cycling through Southeast Asia, trekking Kilimanjaro and the like) and you can chose to either pay PU full whack to go on the trip with no obligation to fundraise, or to pay less but agree to raise a minimum amount. The trips sound amazing and I would imagine that they'd be a big draw and would pull in the punters to support PU over the long term.

 

Back in the 1990s, many local groups were part of the ME Association. Then the ME Association were tight for money and were complaining the local groups weren’t passing on money. I remember an article with an interesting title which went something like “Our friends in the north” complaining about in particular groups in the north. The MEA took back as much money as it could around 2000. This caused a lot of bad blood. Local groups had to start from scratch.

 

Perhaps another solution would be to offer long-term or lifetime memberships for an initial membership fee with reduced fees for those on benefits or in difficult financial circumstances; if you only need to send out reminders and process payments once every 10 years, or just once per member, that's a significant reduction in administration. Offering regular monthly direct debits or micropayment options would be another way - it might be easier for the average member to justify to themselves when the monthly subscription costs less than a coffee would. It would be useful, I think, to have a wider variety of options for donating specifically to ME research as well.

I looked at what AfME are offering: their standard membership (£21/year) is more expensive than MEAs (£18) although AfME also offer lifetime memberships (currently £350) as well as free membership to under 18s.

 

Maybe we should take into account that part of the reason they're not coughing up is a lack of projects/ideas they think are worth following up?

Funding criteria are tough and it's a competitive process. Not only does your proposal have to convince them it will answer an important question, it has to be more convincing than others.

Conditions where the underlying processes are better understood have a head start because they have knowledge to build on. We don't even know what we're looking for, and that puts our researchers at big disadvantage.

 

As for donations to research - until recent years, I didn't have a good idea of who to donate to myself; almost all the research that I had looked at seemed to have major, glaring flaws & it's really only through S4ME that I've come to learn of the few groups doing genuinely good or high-quality research. And I still don't really know how to target donations optimally; given the last few projects they've funded I wouldn't be comfortable donating to MEA's Ramsay fund any more. (The research funded by MERUK looks generally much better from a quick look at their 'current projects' page - difficult to tell from the brief descriptions - but perhaps still not ideal).

So I don't find it highly likely that donations to the charities' research funds will be spent well and not wasted - for instance, out of the last four studies MEA have announced Ramsay Fund awards for, only one (the electrophysiology one) seems worthwhile to me, although it's always difficult to tell from the brief lay summaries. Obviously they also fund the ME Biobank, which is very much worthwhile, but much of the research they've funded recently is, simply, not. This is not going to affect how the average ME patient donates as most people don't look at the research itself and even if they did most do not know how to make judgements as to its quality, but it may affect a few.

Having said all that, if pwME just collectively donated the money they spend on useless supplements to research we might get somewhere.

 

Yes. Which is why there should be a specific amount set aside for different conditions. Otherwise the condition who attracts the best researchers gets all the funding.

 

Have not been able to follow this much, so just some disconnected thoughts on the topic

I donate but don't fundraise for much the same reasons already posted. I briefly tried in a small way and found it was too much effort for too few $$$ and caused way too much social awkwardness

One unexpected thing I did learn though. If people donate directly to one particular research project many somehow expect that single study to find the cure or at least make a huge difference and when it doesn't they get peeved. They don't have the same unreasonable expectations when donating more generally for x-disease research. In NZ the only way to feel like you're donating to general ME research is when someone does a charity run or similar (which does seem to be one of the more successful ways to raise lots of small donations). The money then goes to the same couple of research teams it would have if you'd donated directly but it's not so obvious to the average punter. The only other options in NZ are direct research donations, with the issues just outlined, and donations to the charities who may or may not funnel some money towards research but the ones I know about have no clear financial, personnel or legal separation between patient support & advocacy activities and research funding activities. The latter is important where people don't trust the charities, which seems to be a recurrent theme, e.g. the MEA in the UK right now. But in the UK there are at least some options to donate directly to general ME research, rather than just individual studies. It may be worth concentrating on those and help them with their fundraising efforts

They need at least two strategies. To fundraise within the ME community, due to the lingering trust issues thanks to the likes of PACE, they need to make sure they're extremely rigorous and transparent with selecting studies, and communicate results positively but realistically (no hype and crash) and maybe even do some basic education on how science works and progresses. The ME community doesn't need convincing it's a good cause but it does need convincing their money won't be wasted on useless or even harmful studies

To fundraise outside the ME community, they need to find compelling ways to communicate that pwME need and deserve research into their illness, just as other debilitating illnesses do. Though when it comes to fundraising via a supporter doing a charity run or similar people don't seem to worry much about what they're donating to as long as it's 'charity' and they get the warm fuzzies from supporting that particular person in whatever their charitable cause may be

Taking a big picture and long term perspective, and I suspect this will be controversial, there's a case for investing in some PR strategy advice on how to improve the public perception of ME, increase awareness in a positive way, and ultimately garner more donations. This advice would need to come from consultancy agency experienced in this area. It would also ideally be a joint project of all or at least several of the ME charities and research trusts and foundations. It could even be done in conjunction with a strategic review of the different roles all the ME organisations play in the 'ME-ecosystem' and where each should focus their work for the benefit of all, but TBH I struggle to see them being up for that level of cooperation and there's no point in investing in a report that nobody intends to act on

 

I just can’t get past people thinking many have any money. Most I know from what I guess is the recent generation (since bps) who have me/cfs have literally had to work out how to make their life and future work on their own , maybe with household part of that if they have that.

They’ve avoiding collecting accurate prognosis data or monitoring anyone without gps putting people off visiting by inferring if they are still ill it’s their fault. So any possibility of planning for the future is undermined.

there is something specific about me/cfs in that we might be able to avoid deteriorating permanently to a lower level where we aren’t even independent by drastically changing our career but for most those options aren’t available without huge long term financial penalties , certainly not until we get that severe and ‘prove it’. And then when we do we are so ill we can’t fight to get it.

so most people once they realise this is the illness partly from their own testing of their own body and getting to that point that’s it’s obvious it’s bleak, invidious choices, do really badly and it’s long term it all impacts because they’ll have been affected for many years before that in their career path (which again often tends to open up more possibilities being offered and if you’re on a higher salary or seniority then part time and pension and all sorts is pro rats vs if you missed out on being able to move up over that time).

it’s also not that well accepted re relationships. Certainly hard to both get a career and a relationship and keep it during that phase - the energy just doesn’t divide up. And the misinformation trashes family and friend support and other support is already undermined inc during all those processes

if someone isn’t financially independent from their family/partner they might only donate if that family is also behind that. Those individuals also need to keep their jobs and yes the misinformation has been designed to affect even that - and they’ll be reliant on that one income etc.


I think there are a heck of a lot more complexities in the assumption of money. I think given our level of debility if anyone does get anything then it’s not ‘spare’ . For many it’s not going to cover what they need when you think about the cost of just an hour of care or electric wheelchairs (or vehicles those then fit in) , potentially having to pay fir medical appointments even if it isn’t me/cfs because of the ‘hypochondriac/functional don’t investigate anything’ label cfs put on their records.

And because of the utter exhaustion it affects bith pwme and those caring for them being as involved with extended family etc - and we all know how people react to the ‘well if they don’t make the effort to come to our wedding/birthday etc , even Jim made it and he has cancer /Sarah came with her broken leg’ and even if they aren’t it puts people out of sight out of mind when you don’t go for enough years.

Fundraising also happens through schools, workplaces etc through having the time to ‘be social’ and join the baking or fundraising team/do your bit . So that energy draw whether pwme or carer crimps tgat first often (before you get diagnosed with something which doesn’t then go ‘oh gosh that explains it all’ )

and yes sorry to say it but a lot of parents are the ones who you can see just think or actually reply in a roundabout way that they are more busy and therefore also ‘tired’ because that’s the culture of that demographic atm. And they have their own issues.

I think we need to think about which demographic actually could give and what stands in their way because of cost of living currently too . And why they do it.

and also maybe some things are experimental but other things might be that whatever supplement or special diet or whatnot that cautious people have found makes a 5% difference to them that without it is even more debility and dependence.

I think we need to work out how to make something that most people will support because at the moment that seems to be missed in the discussion but I think is the major issue and is part of making THAT thing of me/cfs something more people could/would support publicly - because like it or not there’s a lot of crap stuff and not just baggage but rubbish research or stuff that hasn’t got a next step to get anywhere or things got sent in a dodgy direction part way through that means I think this but is just as important

 

and those who do so need to be well-informed of or have alternatives that make clear what is genuinely useful for those others in the community too.

I don’t know whether other conditions either have better insight into different severities and the exact situations that can occur/what would help and if they have more chance/likelihood of interacting with people who are in that situation

And do a better job at communicating the specific needs eg if it’s support then letting people know what precisely will be offered to who - is it legal support in hospitals or advocates that can be on the ground or is it more generic and ends up as leaflets and a phone line. And why do those people need this etc.

With research it’s finding a way to get across that this is something useful that could get things somewhere if rule some possibility out at least or a strategy or these and and not gates

I have no idea but suspect DecodeME would have been more marketable than eg a generic charity because people ‘get’ that it could get somewhere. And lots of people whatever they mean belief-wise underneath it are happy to click a social media ‘I heart support fir me/cfs’ it’s just few things come without other added complexities

and gone are the days where we had chuggers and people mindlessly put money into tubs or causes without these days becoming aware how much goes where snd on what.

I think this thread could be interesting but not if it’s about only saying pwme ‘should’ without listening to the ‘who can’ and ‘what would it take’ for each of those demographics and situations

and for this supposed big number of patients, even if they have all been labelled, most of them are navigating these tightropes which have long term impacts (eg coming out to colleagues) . And someone becoming worse off from that makes them less able to help etc.

It would be useful to look at some case studies of where other illnesses have done interesting things - particularly where they battle similar structural and stigma issues

 

To put it out there I think the OMF type thing/size is a game-changer because people could believ it could get somewhere vs smaller

I might be wrong but I think that’s what it took for things like cancer often - thinking big enough.

and yes! then there is the making sure it gets into good hands doing the right things according to a big strategy (ie unlocking some of the yes or no possibilities that could narrow down where the issue is and getting stuff replicated).

and to be trusted then you need more meat on the bones of showing you know what you are doing to fend that off and control the pathway there (not just big visions)

and os where relevant if all were solid there is nothing stoping more than one entity joining together in a ‘campaign’ which could be eg research using those who are becoming expert in measuring PEM (to help identify samples and understand what that ‘looks like’ and how long etc) with those who might be then studying other aspects / angles - if it all made sense and wasn’t too convoluted. Or eg some charities doing a ring fenced campaign for a crisis team jointly (and be clear how that’s managed). My point is should there be a sum greater than the parts scenario that crops up then there are options

but heck it’s 1. Thing has to be that it convincingly sounds like it will be wanted by and actually good for those it claims will be the target beneficiaries… and we’ve all been a bit tricked by things in the past.

 

The biggie is race for life which is cancer research and it became smart when it developed the twist where everyone who signed up got a card for their vest (where a number would go for a runner) and I guess associated web stuff saying “I’m running for/in memory of” as in their aunt or friend and a whole family group or office might get together to do it for that as a memorial.

I don’t know how much individual charities make from other events and sponsors for eg the london marathon

the above and macmillan coffee morning have a few things in common
1. Set day each year
2. Different levels of commitment as most who turn up as a team or come to bake sale it’s 30mins (or less in an office popping down for cake) but
3. Those who want to ‘do a morning’/get a team together do more organising and
4. Some others (who lik baking or running or whatnot) will do some baking and setting up or do a rude share to get a few of them to the park.

this might then also become an annual get together like Xmas do fir people might be that once a year for old friends.

Am happy to try and be creative on ideas. But it has to be more full package as cancer research and macmillan were already well known and trusted and so on.

 

What I do agree with is that somehow we need patients to take control in what that narrative is and to try and get together with consistent coherent messages that have enough specifics decided that people on the outside know what the ask sbd sun is and when it’s being subverted.

I’m not convinced it will be government wanting to convert the public and will need to be the other way around, by reaching a critical mass of understanding and acceptance/ acceptability with enough people to make snarking with misinformation look antisocial as it would fit other conditions

I don’t think coming up with convoluted compromises of what the condition is ‘to appease the established bps (who won’t ever be appeased btw - they’ll always push for more)’ in some misguided sense that’ll make things better when it just means that rather than the illness make sense as a paradigm it’s done weird concocted two halves thing no one including pwme understand - Because it’s just a political construction

of course no one ‘gets’ an illness where every charity and org says something different about it

and where it’s just decades of revolving talk about distractions on how much social life and exercise ‘those people’ should have. With some nonsense compromise about CBT - a treatment next to no one understand but think they do without even asking ‘which content’ and why. Just happy to play the ‘ill people arguing, I can’t be bothered’ card then happily parrot ‘apparently it helps you cope with symptoms’

maybe the next question is :

what charity would you support

fir what campaign with what end ?

And combos I guess could be fine as are caveats (like ring fencing or wanting to know there is a follow up) - we can probably keep it as simple as those reasons unless it’s history or fact someone mighnt know

whether it was donating or going public to help /asking contacts for something really good and well thought through

 

Indeed but so are ALS and cancer and yet the ice bucket challenge or the Livestrong Armbands have been a big success. Of course there are people and charities that have tried something similar (more recently the LemonChallengeME/CFS tried to go viral) for ME/CFS but simply haven't quite had the success others have enjoyed.

 

Nope, absolutely not. It might be that some part of any illness community might take steps to boost research money available but it should be up to society, and government as a supposed proxy for society, to support and improve the lot of those less fortunate.

 

That's an interesting thought, but I posted the quote not because of that aspect (which I hadn't thought about as deeply as you but had assumed wouldn't work in our context) but because of its messaging - 'We're a community! You can be part of it! You can make good things happen! We'll give you lovely updates!' - which I thought was a very powerful way of bringing people in, as opposed to, 'The planet is doomed so you should give us your money so it will be fractionally less doomed'.

All the more reason to nick the best bits of other people's fundraising strategies!

 

I agree, I think HIV is a good example. They had to deal with a very negative label of their disease. They managed to turn that around and have very good funding now. Maybe this could be used as as a example for us.

 

This is important when it comes to what would make a difference to our lives.

In nearly five decades, research has never made any difference to mine. (I accept it's made a difference to some people's—psychosomatic research meant they got much worse.)

But if I had £15 a month to spare, I'd call a taxi to do one of my errands instead of having to face the exhausting process of unloading then reloading the wheelchair.

If I had £30 a month to spare I'd treat myself to three dishes from the south Asian restaurant, so I'd get a bit of variety in my diet without having to cook it myself.

If I had £50 a month to spare, I'd find a cleaner to come in once a fortnight.

Any of those would make a real, immediate difference. It might look like short-term thinking, but the fact is that donating to research can't compete with them for priority.

I could spend several hundred pounds a month on services that would improve my life enough to push funding research down the list. The concept of spare money only kicks in after that, and as I'll never have hundreds of pounds extra, it's theoretical anyway.

 

I think you have your priorities right, @Kitty! Extremely ill PwME who are living under such extreme circumstances with very little money shouldn't feel obliged to give.

There are others who can give. I think we need to find ways to excite those people about research, and make them feel good about giving, so that those who can give do, and give more than they would otherwise.

Some years ago, I followed someone doing a fundraising blog where each week, they would come up with a tip for saving money (like buying a year's worth of loo roll when it was on offer) and donating the savings to ME research. Of course, not everyone can do that - you need capital to invest in that loo roll! And some things took a little effort. But I did it, and did things that I normally wouldn't have bothered to do to save money, because it was fun and I felt part of something good and worthwhile. Altogether, I think I saved a few hundred quid and donated it. The point being that it was the fun aspect and the community thing that drove me to do more than I would have otherwise.

 

Do you have a link. Sounds interesting!