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

[Sasha]

Given that forum threads are open to all members, I welcome people from all nations giving their perspective. It can contribute usefully to the discussion.

I certainly agree - everyone is welcome to contribute ideas. The reason I've kept a single-country focus is:

I wanted this discussion to be specific to a single country because I think that the percentage of PwME in each country contributing to fundraising will be different, the sources of data that we have about numbers will be different, and the causal factors may be different.

My reason for starting the thread was to try to identify problems and then problem-solve, if we can - which again, I think, needs a focus on one country at a time.

I chose to focus on the UK because that's where I live and where a lot of S4ME members are based, but I think it would be good to have similar threads on other individual countries, if anyone wants to start them up.

While I applaud the wish to see more donations, I'm not clear what we as forum members can do towards this that isn't better done by the charities themselves. They employ fundraisers and have active members running fundraising activities and encourage their members to leave legacies.

You might be right, but let's see! I'll post my summary later today, I hope.

 

[Kitty]

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.

 

[Sasha]

In the following posts I’ve summarised why we think so many PwME and others aren’t donating to our charities, broken into themes, with one post per theme for ease of discussion:

• Underdiagnosis
• PwMEs’ poverty, isolation and lack of energy
• Stigma/misperception
• Lack of NHS signposting to charities
• Charities not attracting PwME – and driving some away
• Having small/many charities

Shall we now move on to trying to come up with solutions to these problems?

Some issues might not currently have viable solutions; for others, we might come up with ideas that we could flag to activists who are working in that area; for some, maybe S4ME could contact people/charities direct, if the committee agreed; and many/most/all ideas might simply end up on a wishlist for now but I think we’d benefit from clarity about what could be done if the situation changes (for example, if DecodeME comes up positive).

Looking forward to hearing your ideas!

 

[Sasha]

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

If studies like DecodeME and proteomics pick out a biochemical pathway that pins down an area of pathophysiology then ME/CFS will become trendy and doctors will fell it worth knowing enough about it to be able to make a sensible diagnosis.

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!

 

[Sasha]

PWME’S POVERTY, ISOLATION AND LACK OF ENERGY

Problems

• A lot of PwME depend on benefits and can’t donate.
• ME hits people early in life before they’ve built up income and savings, unlike many other conditions.
• Some PwME will have been abandoned by family and friends who would otherwise have donated.
• It might be friends and family rather than patients who are missing from our charities.
• PwME who are sick enough to want to fundraise are too sick, with energy-limitations that are constant, to put as much effort into it as people with other diseases can.
• The small proportion of PwME who recover and can work again and so could donate might want to forget the experience and not be reminded by donating.

Solutions

@ Jaybee00 suggested going after ‘whales’ – wealthy people who would have reason to be interested in ME/CFS. (This is a standard approach to fundraising and I would hope that our charities are already doing it.)

Given that PwME are much more likely to be on very low incomes, and too ill to actively fundraise, I think that getting our friends and families to donate and fundraise on our behalf will be important, even though many of us may not have as many friends and family around as we like.

More thoughts?

 

[Sasha]

STIGMA/MISPERCEPTION

Problems

• Someone with ME might not want to identify as such because of the stigma and may therefore not donate to our charities or ask friends and family to do so.
• Only milder cases have the option of dodging the diagnosis, and they’re the ones still able to work who have money to give.
• The general public know a lot less about the seriousness of ME than, for example, MS or Parkinson’s and may also assume we’re scroungers – and will be less likely to donate.
• There is little public awareness of the prognosis of ME, or how severe it can be.

Solutions

I didn’t see any put forward.

Certainly in my own case, I’ve been reluctant to ask friends and family to donate because I don’t want to be ‘the needy, sick one’, even though they’re fully on board with the reality and severity of the condition, and I avoid telling people who aren’t close to me what’s wrong with me because of the stigma of the condition.

I wonder if we need to offer PwME a form of words to make their ask.

More ideas? Thoughts?

 

[Sasha]

LACK OF NHS SIGNPOSTING TO CHARITIES

Problems

• The NHS points patients with other diseases to their respective charities. Apparently some NHS ME clinics are doing so, but at least the Newcastle clinic in 2020 refused to do so because our charities didn’t share the clinic’s model of the illness.
• It’s unclear to what extent our charities are getting their leaflets into the clinics.
• Some newly diagnosed PwME might be being warned off support groups (and perhaps charities) to avoid having their ‘illness beliefs’ reinforced.
• Some initially ME/CFS-only NHS clinics are now broadening to include pain etc., making it harder to target our charities’ materials to the PwME.
• For other diseases, doctors seem interested in being educated by charities’ information, but apparently not ours.

Solutions

This [NHS clinics not pointing PwME to our charities] is huge, though not anything we can expect to change in the short term given prevailing medical attitudes., likewise GP surgeries (unless there is a research breakthrough).

If this is a widespread problem (and we don’t seem to know the scale of it), I agree with Simon – this is what should be a major conduit to the charities failing badly.

Thoughts, ideas?

 

[Sasha]

CHARITIES NOT ATTRACTING PWME – AND DRIVING SOME AWAY

Problems

• A lot of PwME might not trust our charities to spend their donations well.
• Many PwME might feel that the charities don’t represent their views and interests.
• Some aren’t confident that research funds will be spent well.
• Recent events have shown our large charities blind to issues of ‘pacing up’ and easily manipulated by BPS proponents, damaging trust.
• There are concerns about current governance issues at the MEA.
• Not enough personal support/advice is being offered by the charities to PwME in need, which doesn’t attract engagement.
• Local independent ME support groups may be better at offering useful support, diverting PwME from the national charities – whereas other disease charities have local groups.
• Following the charities is demoralising because there is so little progress or good news.
• PwME don’t see any personal benefit in joining the charities.
• The charities’ offer isn’t seen as strong enough.
• Even PwME might donate to other disease charities before ME ones, simply because the others do impressive work for diseases that might affect the PwME’s family/friends, and the ME ones don’t make enough impact or offer enough benefit to be top of mind.
• The MEA’s annual subscription is quite high for disabled PwME.
• Not enough powerful advocacy from the charities.
• The charities aren’t adapting well to the age of social media.

Solutions

I think one of the ways the charities might do better is by running a consultation with people with ME/CFS. Taking as much care as possible not only to include severely ill people, but also those who're not comfortable with/interested in reading research, getting involved in advocacy work, and challenging politicians.

Even if we fix all the problems above – underdiagnosis, the broken NHS conduit, and so on – even I’m not currently donating to our charities for research funding because I don’t trust them to spend my money well.

Is that lack of trust well-founded? Is it simply that the charities aren’t communicating well about what they’ve done?

How can we get them to improve enough to make PwME enthusiastic about joining them and donating to them?

 

[Sasha]

HAVING SMALL/MANY CHARITIES

Problems

• ME has several charities instead of one big one, unlike MS, Parkinson’s, etc., and so PwME confronted with a confusing choice may give up and support none.
• Our charities are too small to attract notice and pull in donations.
• Our charities have less money to spend on public awareness-raising.

Solutions

Do we need one big charity? Is it possible to persuade the charities to merge? How could we be sure that we’d have keep the best of each, and not the worst?

Again, thoughts?

 

[Sasha]

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

 

[EndME]

In the following posts I’ve summarised why we think so many PwME and others aren’t donating to our charities, broken into themes, with one post per theme for ease of discussion:

• Underdiagnosis
• PwMEs’ poverty, isolation and lack of energy
• Stigma/misperception
• Lack of NHS signposting to charities
• Charities not attracting PwME – and driving some away
• Having small/many charities

Shall we now move on to trying to come up with solutions to these problems?

Some issues might not currently have viable solutions; for others, we might come up with ideas that we could flag to activists who are working in that area; for some, maybe S4ME could contact people/charities direct, if the committee agreed; and many/most/all ideas might simply end up on a wishlist for now but I think we’d benefit from clarity about what could be done if the situation changes (for example, if DecodeME comes up positive).

Looking forward to hearing your ideas!

I'm slightly sceptical we can come up with a solution if we don't know where the problem actually lies yet. I think we have to first understand: Are there precentually less pwME donating to charities than for comparable diseases? If yes, then there would be a problem with charities obtaining donations from pwME, if not then the charities are not successful attracting funding outside of pwME. Or are both a problem? I think it might not be very fruitful to come up with solutions here without knowing any actual numbers and as such not knowing what problem one is trying to solve.

 

[Sasha]

I'm slightly sceptical we can come up with a solution if we don't know where the problem actually lies yet. I think we have to first understand: Are there precentually less pwME donating to charities than for comparable diseases?

It appears from the discussion that we don't have an accurate estimate of actual prevalence, or one of the number of people diagnosed with ME/CFS, and we don't know how many donate - but we do know that even if we assume that real prevalence is even half what we've always assumed, we've still got only about 8% of PwME who are members of our charities, contrasted with about 30% of the Parkinson's and MS charities.

If yes, then there would be a problem with charities obtaining donations from pwME, if not then the charities are not successful attracting funding outside of pwME. Or are both a problem? I think it might not be very fruitful to come up with solutions here without knowing any actual numbers and as such not knowing what problem one is trying to solve.

Either way, wouldn't we want to boost both the number of PwME donating and the success of our charities in pulling in donations from others?

 

[EndME]

It appears from the discussion that we don't have an accurate estimate of actual prevalence, or one of the number of people diagnosed with ME/CFS, and we don't know how many donate - but we do know that even if we assume that real prevalence is even half what we've always assumed, we've still got only about 8% of PwME who are members of our charities, contrasted with about 30% of the Parkinson's and MS charities.

Where are these numbers coming from? From what I initially stood the numbers were just numbers of members not numbers of patient population per charity? Or am I wrong, do we have those numbers?

Either way, wouldn't we want to boost both the number of PwME donating and the success of our charities in pulling in donations from others?

I think the answer to that will be that you will want to do what is financially optimal, which requires an understanding of where the problem lies.

I would think that any well run charity will have asked themselves all of the questions being asked here. Perhaps one can obtain some answers or numbers from them. If they haven't asked themselves these questions they are probably not well run which might then be the answer to all the questions...

 

[Sasha]

Where are these numbers coming from? From what I initially stood the numbers were just numbers of members not numbers of patient population per charity? Or am I wrong, do we have those numbers?

Does this below answer your question? It's from my first post in the thread:

There are an estimated 250,000 PwME in the UK, not counting the influx from Covid, and yet only about 20,000 joined DecodeME (a low-effort, patient-friendly, crucial study), our two main charities probably have a total of about only about 10,000 members/supporters (the MEA has 5,000 so I'm guessing AfME is similar), and our charities get very little in donations per patient compared to other disease charities.

The charity Parkinson's UK, by contrast, has 40,000 members despite lower prevalence (137,000 in the UK), and the MS Society has 45,000 members (150,000 PwMS in the UK) - both about 30%, compared to ME/CFS's 4%.

 

[Kitty]

How can we get them to improve enough to make PwME enthusiastic about joining them and donating to them?

I don't think we can.

We could help them, if they recognised they needed our help and were willing to engage in good faith and as equals.

But we can't persuade them to do it. They have to decide that.

 

[EndME]

Does this below answer your question? It's from my first post in the thread:

But my understanding is that that post is not correct (or does 30% and 4% refer to the amount of members that are patients that donate?). We have no idea whether or not ME charities get very little donations per patient compared to other diseases since we don't know where members and donations are coming from for any of the charities.

My vague understanding has been that for example the Michael J Fox Foundation, which is often quoted as success story for a successful charity, receives most of its funding from people who are not patients.

 

[Kitty]

I wonder if we need to offer PwME a form of words to make their ask.

I'd say we need charities we trust to use our donations first. If we're not giving to them or talking about what good work they do, why should anyone else?

I never ask friends and acquaintances to give to charities I support anyway. I can't easily think of anyone who hasn't already formed a shortlist of charities they want to support with whatever they can spare, and it doesn't seem my place to suggest they support mine instead. Theirs might have been chosen for deeply personal reasons, and none of us has much money.

It would be different if I was just sharing an appeal on social media, or if I was taking part in a specific fundraiser. My workplace did a sponsored swim for Childline every year, and I didn't mind asking colleagues to chip in because they genuinely supported our efforts.

 

[Sasha]

But my understanding is that that post is not correct (or does 30% and 4% refer to the amount of members that are patients that donate?).

The percentages are numbers of members divided by the numbers of people with the disease. AFAIK, we don't have data on how many members are patients. Does anyone here have that information?

We have no idea whether or not ME charities get very little donations per patient compared to other diseases since we don't know where members and donations are coming from for any of the charities.

Parkinson's UK reported £47m income in its 2023 annual report, 39% of which was from donations and membership (not legacies). The MS Society reported £12m income in donations (again, excluding legacies). The MEA got £0.8m from donations and legacies, and AfME got £1.2m from donations and legacies. You're right that we don't know what proportion of all this is coming from patients but it's clear that per patient (as opposed to per patient-donor, which we don't know about), ME/CFS donations are way down. I don't know if it could get so low without both patients and others donating less than they do for other diseases.

My vague understanding has been that for example the Michael J Fox Foundation, which is often quoted as success story for a successful charity, receives most of its funding from people who are not patients.

That's very interesting!

 

[Jaybee00]

My vague understanding has been that for example the Michael J Fox Foundation, which is often quoted as success story for a successful charity, receives most of its funding from people who are not patients.

ALS got huge amounts of funding from the ice bucket challenge—like $115 million— these people didn’t have ALS.

https://en.wikipedia.org/wiki/Ice_Bucket_Challenge

 

[Sasha]

ALS got huge amounts of funding from the ice bucket challenge—like $115 million— these people didn’t have ALS.

https://en.wikipedia.org/wiki/Ice_Bucket_Challenge

This is another hopeful example in addition to @EndME's because of how impoverished and debilitated PwME are, which I think is likely to be a huge barrier to our donating and fundraising ourselves.