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

[NelliePledge]

I don’t have much inclination to get into solutions for uk charities its a big topic I don’t have bandwidth for. One positive comment I can make is that Germany and Austria seem worth looking at to see what they are doing as they seem to have stepped up activity in recent years.

 

[Sasha]

I don’t have much inclination to get into solutions for uk charities its a big topic I don’t have bandwidth for. One positive comment I can make is that Germany and Austria seem worth looking at to see what they are doing as they seem to have stepped up activity in recent years.

That's fair enough, @NelliePledge! We're all short on bandwidth.

Does anyone know what's going on in Germany and Austria that would be helpful to copy elsewhere?

 

[EndME]

That's fair enough, @NelliePledge! We're all short on bandwidth.

Does anyone know what's going on in Germany and Austria that would be helpful to copy elsewhere?

WE&ME seems to have some more innovative approaches to attract funding from the outside as far as their social media presence would tell. Whether their strategies will become successful is of course a different question, at the moment they are still pretty small when it comes to collecting funds.

 

[Sasha]

WE&ME seems to have some more innovative approaches to attract funding from the outside as far as their social media presence would tell. Whether their strategies will become successful is of course a different question, at the moment they are still pretty small when it comes to collecting funds.

Do you have any examples of what they've done?

 

[EndME]

Do you have any examples of what they've done?

I think it's a nice gesture that all of the donations go straight to medical research projects as the costs of running the foundation are covered by the family running the foundation.

According to their feed they've done some of the following things:

They done a lot of work together with Rudi Anschober who is the former Minister of Social Affairs, Health, Care, and Consumer Protection. They've been active at different sport events (RACING4CHARITY, marathons, football etc), they've hosted (or been present) at gala's, auctions and charity events (all net proceeds of the vienna doctors' ball will be going to them this year) and they've showed some presence at different demonstrations. They launched an art/photo documentary on ME/CFS with Brent Stirton and have been present at different exhibitions with art documenting the lives of ME/CFS patients. They launched a "guardian" project where you can become a guardian of a ME/CFS patient. They are also fairly active on social media it seems. They launched a billboard and TV ad campaign.

Having said that they are still a very small organisation (also in amount of donations collected) and whether these things are a good strategy or whether they'll end up being a succesfull organisation I haven't the slightest clue.

 

[Kitty]

One of the things we could do is to keep our powder dry until we've got a story. Something positive, like a study exploring intriguing findings from DecodeME, that we could really raise enthusiasm for.

The fundraiser for a UK Rituximab trial was pretty successful—half a million or thereabouts? The fact that it was specific and based on exciting findings by good scientists made the job a lot easier.

The charities doing the unglamorous ongoing work that's much harder to fundraise for would benefit too. It would raise their profile no end, and some of the people who've been a bit detached because they don't see any real hope in sight could become more engaged.

 

[bobbler]

Out of curiosity, eg looking at the MEA association specific thread that has more details about the circa 2004 issues...

has anyone mapped the income vs public position (bps vs 'working to improve biomedical approaches') over time.

Looking for example at whether when they've been 'less good' on being patient/biomedical-focused the income has dropped slowly I'd assume to a nadir at what 5yrs when people finally realised (or if there were indeed whistleblows or public info on it). And the funding has followed the times when they'd been brave enough for example to be bold about the need for a new guideline.

It's important to me because if people donated on that basis and it wasn't spent near that timeframe and ends up being spent under a different ideology/approach/spirit of compromise.

I'm aware that the income has increased in recent years, and yes we've had long covid but as others have mentioned it is legacies and old charities folging into MEA, but also other donations which I think are dependent on people trusting that what a charity is 'sponsoring' isn't counter-productive vs putting a straightforward stance of what ME/CFS is.

One could argue that for anything it will be a time-lag because you need a year or two to be convinced that you think you know what a charity 'is about' and believe that's what you are backing. And that's if there hasn't been a murky history etc.

And I don't think the MEA have come across as more clear on this to more people than when it was (in particular CHarles SHepherd) the guideline development stage. So I think the two probably came together (with long covid)

I'm intrigued that their worst period of time financially seems to coincide with when there was a take-over by ... was it just a dodgy CEO? or is what is coming out showing there was more going on (someone hired them at least so it would make sense).

ME has a big issue in that unique vulnerability to opportunists (and deaf paternalism), given any opportunist who is less unwell has a massive advantage they normally are well aware of in playing attrition of stamina and energy draining (something used as standard with normal people anyway to drive them mad and put them off as those people end up drained financially and needing to get on with their life vs a fight never ending). And then on top of it even those close to pwme having been incited to not see how ill they are, not truly, it still being minimised or tainted with nonsense 'what ifs' in a way no other condition has been hammered for no reason.

There's a reason why charities have campaigns - and it isn't just campaigns that are veneers for donations going to the normal pot. There is something to be said for they mightn't be able to make their articles and objects so specific but they could make the choice of who donates to what more specific.

I'd love to be able to have a genius suggestion of the solution to round this one off. BUt all I can say is that I think what the illness has been put through in the past, and the deliberate and ongoing gaslighting of those who are newer to the illness (until they themselves go through getting worse due to having tried this nonsense promised land) does make it a unique case for added protections.

 

[bobbler]

You see it happening all of the time because of our disability + the bullying from the hostile environment deliberately set up to mean we get nothing everyone else assumes makes it OK for them to 'do nothing' because 'there'll be a doctor, care or someone else whose job it is': that we are caught between a rock place of being conned into having to trust people who are the most well offering to fight the fight for us - and because on a 'disposable energy' front then being just 10% disabled (if you imagine essential tasks are 20% , but none of this is linear because you can't do things as efficiently if you can't go to the shop for milk but have to plan, can't just have your hair cut every 4weeks etc, and then the most ill need the most medical appointments and other admin as a load) has an exponential amount of more disposable energy vs someone 60-80% disabled, or 40% disabled having to try and keep a roof over their head.

Yet those who are least disabled and with the most sheltered situations often find it hard to relate or see. Because of the nature of the disability meaning at that stage money does buy a lot of avoidance of issues, eg you don't know what it is like to be moderate or severe in a flat with noisy neighbours if you've always lived in detatched properties with people who look after you. THat ricochets all the way down, including who has most voice even in a membership if everything doesn't absolutely focus on a minimum quorate of severe people being included - and processes have to resolve around making sure that is kept and if they aren't getting it then they need to adapt their engagement (not their quorate).

I think that there is something of a discussion to be had here on this.

 

[bobbler]

When it comes to motivations, I wonder if it'd be useful to compare the MEA to our bat group.

I pay their membership sub of £10 a year. I can't get involved; I've nowhere to rehab injured bats and I certainly can't climb ladders to install, check, or clean out roosting boxes. I can't even visit many of their survey sites, they don't have wheelchair access. But once a year they do a public walk where we all go waltzing about in the dark clutching bat detectors. It's so much fun I often chip in another £10 to the collection.

This means it costs me more per year than an MEA membership, and what I get back is three hours' enjoyment. I don't know much about bat ecology, I don't even see them very often, and I don't have much spare cash. Why would I donate to a bat group and not the MEA?

Because they're really good at what they do. They have people with a lot of knowledge and experience who've not only never earned a penny from it, they've funded their own training and equipment. They welcome and enthuse members of the public, they're very disciplined in best practice and legal compliance, and they'd be willing to fight hard and long if a bat population was threatened by development.

So even though I'm interested in conservation generally rather than bats specifically, I want to support them. If I give them £10 they'll probably get £30 of value from it, by recycling stuff and only paying for what they can't wangle for free. None of it will go into their own pockets.

I don't have the same confidence in the MEA. They lack the welcome, the transparency, and the effectiveness. Obviously the two aren't directly comparable, but that doesn't mean it's impossible for the MEA to achieve what the bat group has: making people feel they deserve support, even from those who're not involved much.

Yes if you think about some of the things that get a lot of people I know involved then you've eg

Race for Life: smart because it is about remembrance and those who've lost someone or been through that themselves are surrounded for a day by those who are that day there for something similar and in a similar place

Macmillan coffee mornings: I know a lot who set these off and then even if they leave a workplace those behind continue it and they set up new ones socially and at the next workplace. Even before this Brits were big fans of the bake sale (which I think is about the ritual based on how 'into cake' people really are or what % are, although there's another good amount who also like baking too).

BHF: I mainly know about because they take your old furniture

I looked up the most popular medical charities and St Johns ambulance was top. Which makes sense too because there is that visible presence of knowing what it does.

I've no idea for sure how specific the funds from each are in ring-fencing what it is then spent on, but haven't heard any scandals etc.

 

[bobbler]

UNDERDIAGNOSIS

Problems

• (We’re not sure how many PwME there are in the UK: 250,000 might be wrong.)
• Underdiagnosis may cut the donor pool, caused by ‘obstructive’ GPs, GPs who disapprove of the diagnosis, misdiagnosis with depression, anxiety, FND etc., reluctance to lumber people with milder ME with a stigmatising label, an attempt to protect patients from BPS psychologising, or failure to recognise the condition because it is rare.
• Some PwME may know what they have but don’t have a formal diagnosis.
• People diagnosed with ‘CFS’ or ‘postviral fatigue syndrome’ may not realise they have ME and so may not realise that the charities represent them, though the charities comes top on web searches for these terms.
• (There may be a lot of overdiagnosis but that wouldn’t decrease fundraising.)

Solutions



Of all the levers that we might try to pull to boost donations, I suspect that tackling underdiagnosis would be the hardest for us or our charities. I hope that @Jonathan Edwards is right!

I'll be honest, I don't think this is one that is fixed overnight and it's more nuanced.

But the biggest issue is having somewhere worth donating to. That can be trusted and is clear and is direct about it's mission and precisely what it will do. We have a load of broad-brush ambitious statements from all sorts of areas, to a problem that needs a needle threading. And anyone who has been around for a long time or knows someone who has knows this and is rightly cynical of those newcomers or mainstays that aren't going all out to be specific in order to reassure given every pwme £1 is that much more precious and 'no more what that came from' but also could be spent in an area that takes things back 10yrs not just 'wasted'.

Adn the confusion of so many poor pull their punches compromising with an establishment that isn't balanced, so the balance is half-bigotry or an angle that is overall hard to believe as 'help' means people rightly can't trust that even when something seems OK for now what it will find to spend the money on and whenever that will be will be what they'd anticipated. Hence we can't have what cancer research do, because at the moment we don't have the set up that says 'it will go only on setting up more research that is definitely along the lines of x strategy that ensures we are building on each piece and it will all be from an appropriate attitude/angle'.

The supporting 'gaps' of things like marie curie or macmillan are hard because we don't just have gaps for iller people, but nothing anyone else as ill would assume for granted either ie often no access to any medical care for anything for sometimes decades. And no chance of being accepted in without risk.

It is also an extremely expensive illness to merely short-term survive a hospitalisation and the wrong decisions by the sounds, because what other condition does even other specialist and legal input (if bought in) get ignored and over-ridden.

So we are looking at huge bills not to be able to say that we even took someone's health forward just that some of the damage was limited by shortening the hell of them going through whatever false beliefs stuff that we know can go on for years and each day could be taking its toll.

Don't get me wrong everyone should be morally doing this and thinking nothing is more just and worth-while but we are blocked from even being able to get timely results or good ones currently. People at best finally get home with what they need, having taken a hit that takes them many years to get back to even just where they were before.

There are probably ways to be more prepared on this and to have charities that focus on really tackling this issue in a more effective way that the mere firefighting but there's still that sense of people not believing it would happen because of the 'in this day and age, surely'. Then I imagine once there is support who knows how extensive what has been going is when people feel there's a safe option to come out of the darkness and report their situation to... so it's hard to measure how big the need could be (how many are in psych wards or other places and just not heard about for various reasons)


There is just a huge amount to do as everything is so constantly undermined even if it is a fundamental given for any other condition etc. (and that has to be explained in itself)

 

[Sean]

That's the summary done - looking forward to hearing ideas for solutions!

Thanks for this.

 

[Sasha]

Merged thread

In this Twitter post, Robert, a PwME, says, 'I have severe ME/CFS and have raised over £20,000 since 2013, mostly via http://justgiving.com/Rob40'.

On another thread, we've been discussing how it's difficult for PwME to donate to our charities because PwME are often so ill that they have low or no earnings: PwME are less functional and get hit younger than people with most other diseases.

This means that - instead of donating - fundraising by (or on behalf of) PwME is much more important than it would be for other disease charities. We need to get those better-off healthies coughing up!

Robert says at the end of his message, 'If 250k people with ME/CFS raised an average of just £100 a year we would raise £25 million p/a – more than the total UK spend on biomedical ME/CFS research in my lifetime.'

But 250k PwME don't do that. If we did, donations and legacies to the MEA and AfME combined last year would have been much higher than the actual figure of £2m. And we need a ton of funds if we're going to get the biomedical research that we need: ME/CFS research is massively underfunded.

In this thread, I'd like to see if we can begin to tackle this problem. We need to start by understanding why few PwME feel unwilling or unable to fundraise and I'd love to have your honest answers about why you personally don't fundraise - if, like me, you currently don't! (I'll explain why I don't, in a later post.) And I'd like your ideas about how to move forward.

So, questions!

• Why aren't you fundraising? (Not a guilt-trip! I'm not fundraising either! But we need to know what the blocks are.)
• What would it take to get you to fundraise?
• How can we enthuse PwME about fundraising?
• What would be good ways for us to fundraise?
• Are there particular pieces of information and/or resources that would help get us cracking?

Discuss!

 

[ME/CFS Skeptic]

I think the main reasons are:

1) Many ME/CFS patients are not diagnosed yet. Other have received other diagnoses such as chronic Lyme, POTS, MCAS, CCI, etc that cause confusion and break up the patient community into smaller parts.

2) A lot of ME/CFS patients are disconnected from family and friends because these don't get the illness or are dismissive of it. So that ruined the relationships they had and patients are too ill to build new ones. Fundraising is very difficult if you are ill and do not have a social network.

3) For those who still have supportive family and friends, most time and money is already dedicated to supporting the patient. You already ask for so many favours (for example, driving to the doctor) that you can't really ask for much more (such as help in fundraising). Many ME/CFS patients are also in a dire financial situation because they get no benefits or ones that are too low for their medical expenses, so they may already receive financial support from friends and family. Hard to ask them to donate to ME/CFS charities in addition to that.

4) Because of the stigma attached to ME/CFS, people might not want to rally for it. It has a lot of discouraging narratives: patients attacking researchers, it's not a real medical illness, pseudoscience and harmful treatments being promoted on social media, infighting around the name, definition and history of ME/CFS, etc.

 

[Trish]

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 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.

 

[Dolphin]

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.

- An attitude that governments pay for the vast majority of medical research like they do with healthcare (in most countries outside the US where universal healthcare isn’t great). So many people seem to think you just need to lobby and change attitudes and then governments will give the necessary money for prompt progress. However in the UK for example it appears at least as much if not more is raised privately for medical research. One of the best ways to get government funding seems to be having lots of researchers making grant applications which can happen if there is private money to attract to the field and keep researchers in the field. And ideally you want researchers with some pilot data which again can be paid for by private money.

 

[Yann04]

- 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.

This is a big one.

The it’s not a real illness therefore you as an individual have to take the agency to solve your illness yourself means people spend money on random drugs instead of charities.

 

[BrightCandle]

I spend time promoting the researching charities when they do good work rather than doing a personal gofund me. I feel like it makes more sense to do that and hand their details out to people wanting to help than personally collecting it only to send it to them.

 

[bobbler]

I think the main reasons are:

1) Many ME/CFS patients are not diagnosed yet. Other have received other diagnoses such as chronic Lyme, POTS, MCAS, CCI, etc that cause confusion and break up the patient community into smaller parts.

2) A lot of ME/CFS patients are disconnected from family and friends because these don't get the illness or are dismissive of it. So that ruined the relationships they had and patients are too ill to build new ones. Fundraising is very difficult if you are ill and do not have a social network.

3) For those who still have supportive family and friends, most time and money is already dedicated to supporting the patient. You already ask for so many favours (for example, driving to the doctor) that you can't really ask for much more (such as help in fundraising). Many ME/CFS patients are also in a dire financial situation because they get no benefits or ones that are too low for their medical expenses, so they may already receive financial support from friends and family. Hard to ask them to donate to ME/CFS charities in addition to that.

4) Because of the stigma attached to ME/CFS, people might not want to rally for it. It has a lot of discouraging narratives: patients attacking researchers, it's not a real medical illness, pseudoscience and harmful treatments being promoted on social media, infighting around the name, definition and history of ME/CFS, etc.

I’d add in that going public isn’t always safe due to ‘stigma’ (let’s be honest it’s far far bigger than that word implies) for people on an individual level vs joining more organised things where it’s less like telling all your neighbours or colleagues of your situation.

In essence it involves spreading the word.

And whilst not everyone is nice applies for everything the impact and protections from it being used unpleasantly or behaviours incited by the bps misinformation means people have done things to us that are substantial- and others being less likely to step in as they would if someone picked on or was saying things about a person with cancer or heart disease or something else.

And it’s an unusual enough one to fundraiser for then you often are prompting the story of ‘why this’ whether for a relative or friend or yourself.

combine this with it having been created so whatever level the majority have precarious situations that are in themselves unsustainable/not yet working to keep them from getting worse whilst being secure in what they need and they can’t take any more risks/hits.

I think it’s also much harder when you’ve got to debunk and think of the info on the illness because of back-briefing and misinformation vs a condition where people either know the issue or take your word for it. Combine that to how disabled in so many ways we are and even if we had the energy most are limited in most of the menu of options (that involve physical or talking or baking or being somewhere at a set time) so you end up with things like social media and these two things / issues combine in a difficult way .

The lazy cliche vs sometimes there is a sense a disabled person has to do something superhuman to impress norms doesn’t work when having a shower is that

our lack of being able to be present or know we’d be defended by others when we aren’t somewhere leaves us vulnerable to lots of talking behind our backs

 

[Sasha]

Just tagging @PeterW, in case of interest...

 

[Kitty]

1. Why aren't you fundraising?
2. What would it take to get you to fundraise?
3. How can we enthuse PwME about fundraising?
4. What would be good ways for us to fundraise?
5. Are there particular pieces of information and/or resources that would help get us cracking?

1. I'm terrible at it. I can't ask people for money, and I'm not sure I want to.

2. See above, and add that I don't know enough people to fundraise from, and I've already got far more on my things to do list than I have capacity to achieve. People with ME/CFS may resent the pressure of yet another expectation, which will probably end up making them feel a failure (again) when they find they can't meet it.

3. You can only do that if they want to, are able to, and know what it is they're fundraising for.

4. Beyond having a big shiny project to share news about, I'm not sure.

5. I don't know if it's the right question, if any of the above bears out for other folk too?


I hate to sound so negative, but it is how I feel about it.


[Point 2 edited slightly]