Fundraising for ME/CFS research - opportunities, problems

@Mike Harley as an individual showed immense courage solidarity and fortitude, to get the word out and the funds in.

As long as I live I’ll think of his work and I won’t be able to without tears in my eye.

 

As actual patients I don’t think we can generate the energy or funds to support ourselves. We aren’t seen as deserving and we are very often impoverished.

 

Since the worst case scenario is actually a much smaller percentage than the not worst case scenario this is a reasonable rational response to not add to one’s burden by contemplating a totally and utterly devastating outcome for yourself. When on probabilities it won’t be like that.


It takes years to reach material survival stability and if or when you get worse such a goal will become impossible.

The other problem is that as you gain understanding in your new role as a patient, with significant physical and cognitive limitations, and with no standard of support for these, you learn how deeply sickness and especially your variety is resented by the medical profession and society at large. There comes a point where you just can’t face any more than the already existing and overwhelming quantity of this in your everyday interactions. You aren’t going to ask people for money who’ve turned down your previous requests for support that would cost nothing, but minor inconvenience if that.

 

I don’t think it has to be like this. I think it can be changed. I those suffering with ME can become seen as a worth cause.

I do think we have a hill to climb getting our reputation restored.

 

Great example. Thanks for doing it. The advantage we have over many illnesses is our numbers: estimated to be tens of millions worldwide. Lots of those are undiagnosed and lots in countries where few are likely to be in a position to donate/fundraise but still large numbers worldwide who might. Tap into that a bit more and we could easily raise millions a year from Facebook fundraisers alone which would be a large fraction of what is currently being raised privately worldwide.

This would pay for research itself and help untap more government funding.

But if people don’t know how important private research funding is they may not do it or alternatively fundraise for a random charity for another cause (I’m Facebook friends with a lot of people with ME/CFS and lots fundraise for other causes. It would be nice if more did them for ME/CFS research at least the odd year).

 

I think it’s hard when you get ill and to an extent where this becomes melded to your identity because your degree of impairment doesn’t allow you to shake it off. Managing to connect with others in the world and support them through fundraising or anything else is a way to regain your sense of self as a full being. Whereas diving even further into the fight for your own life can be narrowing of your focus back onto the worst aspects of your own existence and everything you’ve lost and losses yet to come.

 

You are absolutely right.

ETA: I was more just thinking about individual donations from pwME. I've never asked others to donate; I don't want to be yelled at, scorned, or dismissed. Been there, and try to avoid it.

 

To make sense of that though we need to have an understanding of any chosen comparators - when it comes to fund raising for medical research, size matters: The 5 Most Influential Medical Research Charities in the UK setting aside Welcome, the other four are 'disease named' and wield huge public perception 'gravity' (they literally 'pull in' attention by dint of their mass) part of which is being able to influence media presence through giga sized advertising budgets.

We can't extrapolate to other countries/cultures where charity/public donation may be very different but in the UK we clearly can't use the big extablished charities as comparators for ME/CFS. I haven't got the data to support it but my guess is that Perato's Law likely applies; that would be: 20% of Research Charities recieve 80% of all donations, while 80% of Research Charities share just 20% of donations. The 2021 UK GIVING report gives total charitable donations of £11.3bn of which 9% (£1.017bn) went to medical charities. Allowing 80/20 split between large/small that leaves around £200mn shared amongst smaller orgs of which there are hundreds. The MEA had income of £1,264,843, AfME £2,497,718 and MER £725,693 which is around 2.2% of the likely smaller charity total share. The point here is that only a portion of the ME org income goes to research.

In truth we have no idea wha the real numbers are - what we can say is that ME/CFS affected people are hard to reach, witness the challenges of Decode ME in finding a a tenth of the most frequently quoted number of PwME in the UK. What if half the global patient population are in developing countries ? What if cultural norms denigrate (for exaple) women's health ? We may talk happily about 20 million PwME world wide, but realistically if we are looking at self generated funds we are talking Europe, Japan, South Korea and the anglophone countries pro rata global 20mn, perhaps 3.5 million patients, but on the UK experience only perhaps 350,000 are reachable, comunicable with.

So my argument is that the first problem is how to find and involve the 80%+ who currently aren't engaged with patient organisations/fund raising.

 

Another cause of the lack of donations may be the lack of bequests. Death from ME is rare, and when people with ME die, they may have gone decades without being able to work or access disability benefits, meaning they have nothing to give.

 

I think you are right that there is a lack of bequests.

But a lot of people in my country own the property they live in by the time they pass away. They may have bought it before they got ill and continued to pay it maybe with the help of disability health insurance or struggling to work on; they may have been a relationship with someone who helped buy their home; Or inherited money that helped them buy a property before they died. Renting in people past the pension age in general in my country isn’t that common (though has been increasing in recent years). I haven’t got the impression over the years here that that a large percentage of members of the ME group I help run that are past the pension age are in rented accommodation. A decent percentage of all pensioners are in long-term social housing they don’t own.

The US I think is an outlier in risk of being homeless.

 

I think part of the reason is that ME is less prevalent than what most sources claim.

 

I’ve said this before and agree. I don’t think it is a common disease like CDC says it is.

 

Thanks Ash, that means a lot to read that.

It's very frustrating that ME attracts so few 'well people' who want to fundraise for research. I also can't help but feel that I would have raised more like £100K and not £50K had the illness been more understood and prominent in the public consciousness.

I think in my case it's kind of annoyed me how the vast majority of people fundraising for ME causes have done so just once and then not been engaged within the community. I don't ever want that to be the case with me as personally it would feel like I've abandoned the hundreds of people I've met and call friends down the years. You're all stuck with me.

How we reach people outside the community en masse and engage them to run/walk/skydive etc I really don't know. From my perspective I've roped in a good friend who by chance has a wife with mild ME (Ben Scott) who has raised £20K for Invest In ME and I'll continue to do what I can where possible.

 

Bequests/legacies are a key target for building long term stability in a charity - as distinct from year to year survival from one off donations or subscriptions. Whether there are particular disadvantages for ME/CFS to attract bequests I'm not sure, again this come down to what the comparators are. If the comparators are the big killers cancer and heart disease then ME/CFS loses out simply on the basis of numbers - in the developed world lifetime prevalence of cancer is 50%, while cardiovascular disease is the greatest single cause of mortality; very simply there are a lot of people either affected (patients and relatives) or who are anxious about diseases, amongst whom a proportion are prompted to make provisions in a Will.

It may be true that PwME have few resources to bequest, however bequests to medical charities are as likely to come from relatives and freinds as from patients. A case might be made that the isolating effects of ME/CFS means that social influences which prompt bequest making for other illnesses are absent and that by the very nature of ME/CFS, PwME are not energetically making the case for fundraising, especially absent being the heroic survivors such as those of radiotherapy or heart surgery.

I still see the underlying problem being the invisibility of a large proportion of the estimated patient population. One might say (nod to @DigitalDrifter, @Jaybee00) that estimates vastly inflate the numbers and there are simply not that many of us - if that is the case, at least in the UK we are in fund raising terms punching above our weight. However I don't think this is the full story, again using the UK because we have data, between them the MEA and AfME have maintained a long term member/supporter base of 8k to 10k, these are PwME plus friends family etc.

Figures (applogies can't find the link) from I think 2017 gave reason for UK sicknes benefit claims - CFS as 50,000, that number would exclude patients with higher earning spouses, under 18s and those past retirement age. The implied total may be significantly lower than the often quoted 125-250k ME/CFS patients for the UK but it still suggests perhaps only a tenth of PwME in the UK are involved with patient orgs and that the vast majority of the freinds and relatives of PwME in the UK have no formal relationship with patient organisations.

One explanation of this low level of engagement may be a disproportionately high level of ME/CFS prevalence within social groups that culturally have lower levels of engagment with formal structures such as non minority framed Health Charities. Some of the (US) epidemilogy data suggests this disproportion is a feature but the image of ME/CFS as illness solely of articulate, socially engaged people persists.

 

Do we actually know how ME is distributed across social classes? Then, do we know how charitable giving is distributed across social classes?

If there is a big mismatch, then that may be a part of the problem.

I would surmise but I can't quote evidence that certain cultural backgrounds have a history of charitable giving and others don't. This may or may not be related to income. This doesn't seem very helpful but it's trying to tease out why private giving is lower in ME, if it is, than many other illnesses.

I agree that invisibility of the condition seems likely to be a factor.

 

Regarding bequests:
A sad aspect of the illness is that a higher percentage of people with ME/CFS have no children. However in terms of bequests, I imagine that most people give a large proportion of their assets to their children while people with no children may feel more free to give a lot or even all their money to charity.

Like people have said, a lot of people with ME/CFS are relatively short of funds (and many really struggle financially) when alive. But as I have said, at least in my country and I expect in some other countries too like the UK, a lot of people with ME do own a substantial asset, the property they live in, by the time they die. I think there is a lot of potential for money to be raised for ME causes from bequests.

 

I think that (and it is obvious from looking at some of the fb groups and so many having to write posts anonymously, and I understand why they do) lots of people with ME/CFS have to hide it. Or certainly don't make it public beyond those who either need to know or are trusted. If it isn't their choice specifically they might have chosen because those close to them would prefer not or in case of issues there (e.g. if they have children at school, partners in certain jobs, family who there is some issue there).

People are also aware that even if all are great currently your boss/neighbour/colleagues/teacher/head/workplace culture/GP could change at any point and so you have to think about the 'you can't put the genie back into the bottle' and that anyone who gets desperate in certain situations might do things you mightn't think they were capable of if they feel they need to in order to save their own skin or whatever and how things can then be twisted.

Many pwme or 'who have been given a cfs diagnosis' (mightn't believe it is correct) or think they have it don't even join groups or like things in case it somehow shows up if someone searched their profile

And whilst holding a Macmillan coffee morning or something for the BHF/one of the big charities doesn't mean 'outing oneself or a close one' for anything more unusual then people might feel that they are.

There are plethora of reasons behind this issue but it is very real and needs to be discussed in a very real context of those reasons being sensible concerns from people who are vulnerable in the ways that they are (milder people in the workplace, 'competing' with others and so on). And is there a way, even if a long-term plan that any of them can be changed to make people feel safer.

I'd guess that there are many illnesses others keep private too, unless you can't because of the nature of the presentation etc.

I also remember the rebrand to Scope from the Spastics Society and would be intrigued to look into that

But one thing that is known with legacy in various different sectors is that development of a relationship over time is often something that makes that more likely. And there is an issue about people who might want to but don't feel safe because they are scared of others knowing/privacy not being reassured. Which of course would make it much harder for such charities.

It also means that, along with some not wanting to meet others with the same condition due to disunity being deliberately sewn (and there really is a mixed group with some who are actually really into the more psych/alernative stuff or who have even gone into business along those lines for whatever reasons), PR and rumour and all sorts, there is work to be done on how there is any connection that can be developed when the only public comments will be those who can't hide or got to the point where they've decided to break their silence and be outspoken on things that others have chosen the opposite strategy for.

I'd be somewhat surprised, although I bet there are some, if the one common ground for most - whatever they actually have and believe works for them - wasn't the idea of research getting to the bottom of the condition and finding some form of treatment that takes away illness/a cure. And even trolls for other stuff to do with ME would find it hard to object to that 'principle' (even if they do focus on trolling by saying 'the cure found will be psych' blaaa, they can't be seen to actually say the words 'don't research'). It's like that old meme of 'destigmatise mental health' that noone could object to but could have been by anyone selling anything (which could be stigmatising or wrong) underneath it.

I think DecodeME did well? - particularly to me sensible in managing to focus on the 'get to te bottom of/find treatments/a cure' part, the scientific rationale (and how it fits into a big picture) and be supported by but not so connected to the charities whose focus rightly might be on information regarding support, advocacy or information and so on. Which I'd be interested to know whether it made it more shared/shareable - because it 'depoliticised it' and perhaps could have been supported without feeling like it was either personal or saying what that one person someone might know with it is capable or incapable of doing etc. but gave little for someone to be objecting to or concerned about. Heck someone might just be supporting good science/innovation.

 

That obviously hasn't helped - in comparison many specialisms actively encourage patients to become involved in patient orgs and carry literature from orgs. However the annual numbers seen by the CFS clinics is small relative to the incident levels that would be needed to meet a patient population of 125-250k so would only have a limited effect.