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

I'll add that I guess this is probably the exact really important one point where you have to conclude this is where the need for a new name comes in - and if you were only focusing on this and the factors feeding in to it, then it would be 100% one way that we need a new name.

Because the issue is that people have to 'take on' and 'accept' the 'cattle brand' that the name of the illness gives to them and all the disgusting baggage that puts onto someone

I think it is one thing sponsoring a 'cure' or a discovery - which indeed you might do whether you had that condition or not (if a colleague saw you on social media)

and having to be far enough down the line on all the identity stuff and ... what is it that you are getting behind (because there are so many things you could support where even if they get the gist of offering right then the tone or 'way' is pretty damn wrong and makes you cringe, if living in this wasn't enough cringe already) is something you want to encourage more of in its 'whole'. I think we all know, almost everyone does with charities now, that if you drop £x in a pot for one then it's seen by those behind it as endorsing whatever they want to think of themselves 'as great' - and that wrangles, even if it might be a ring-fenced project within something so you at least know the money isn't being spent on the rest.

I can't think of a condition where culture matters more in what 'feel' comes off from a charity, and yes I think there is a cyclical thing happening with the big players.

I'll be honest I think a lot of people also don't want to hear about the history stuff - certainly not in the way its done. and don't want to feel dragged into being campaigners or activitists (looking 'hard done by' or 'being victims') eg like the COchrane petition and not think of that as activism but something else so I think broad-based charities where there a lot of things needing to campaign on probably will suffer from that 'fatigue' thing from people not wanting to join something that makes us look like we whinge about everything - tbf it would be better if we bundled it all up together more sometimes (because there is the same underlying problem to some of these), and think carefully about tone.

So the future looking aspect of soemthing like DecodeME or charities that have a certain focus and mission like eg science probably have a lot better explanation for what it is they choose to do and it not feeling like that etc.

 

I think there are 2 issues—not directly addressing OP question.

1. Do small donations matter? A google search says yes. E.g. https://neonone.com/resources/blog/small-donations/

2. Big donations definitely matter hugely. In the USA, Vinod Khosla and Steven A Cohen https://www.mountsinai.org/about/ne...on-for-the-clinical-care-of-long-lyme-disease
donate large amounts of money (although I have definitely articulated I have problems with the recipient(s) of the SAC gift).

Are there any such whales in the UK? Maybe someone could approach this guy? https://www.s4me.info/threads/johnny-boufarhat—mystery-illness.42021/

In Ireland (why yes, I do know that this is not part of the UK!) there is Patrick Collison (and his brother) who is very interested in funding biomedical research. He co-founded the Arc Institute and also funded the Covid fast grants program.

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

https://patrickcollison.com/

You can email Patrick here as I have, and ask him to fund ME CFS research (also on Twitter)

Email: patrick@collison.ie

or you could email his wife, who is head of the Arc Institute https://en.wikipedia.org/wiki/Silvana_Konermann and perhaps ask them to have a research focus area on ME/CFS.

silvanak@stanford.edu

 

Only able to read the first page of this thread

This is imho why the amounts raised are low.

I think not wanting to hand over your DNA was a big part of the 'relatively' low numbers, i saw loads of suspiscion & fear about that (privacy etc) on social media, in fact i had to repeatedly counter misinformation regarding it on fb. Also people think they will let others do it.

Indeed, i think its possible that due to stigma etc PwME may have less income comparitively speaking.

And this

Is i think behind the low numbers. I have had 3 significant non-ME/CFS related diagnosis in the last year or so. At every appt i was shocked to receive leaflets from the relevant national charities & in follow up appointments when i raised things from those charities' medical advise pages, the drs at follow up were all interested in being educated by those charities information. I was staggered by the difference in attitude. Its another world when you have something else. Its like being in a different universe.. until something related to 'why are you in wheelchair' comes up, then the arctic tundra returns.

especially by lazy/ignorant drs who only give a dx of "chronic fatigue syndrome"

 

I think there is a lot of identity stuff (which we don't have much control of left, given what we've been deliberately targeted with taking so much true about us away) to do with this, as well as the 'not wanting to pick fights' or put their name to it (safety, naivity thinking there are ways of moving forward without callin out the iterative same tactics that are used to stop this happenning and structural issues etc)

I also think who does what with regard to bringing up past issues matters as it changes the angle of why.

I think this area is pretty fascinating because whilst we all have to be aware of the power out there and have limited energy etc to go around I think some of it is down to things like not wanting to have the victim badge pinned to them. And we are all fed up with hearing about Wessely. It's a shame it isn't a broken record.

I think that sometimes we have so much stuff that falls under this injustice and danger - present, and then past - and it all fits together and not only explains but shows the pattern that we can have a hard job. For example people being abused in hospitals right now who are severe, without this context some assume the DOLs might be for 'reason' or 'one offs' (and that person maybe had something different to them), and with context it becomes a huge read.

In the context of who/which audience would read what and it might make them donate or join something. Maybe if a charity did offer protection (and eg a promise to start bringing up a plan to unpick all of this secret 'functional' gatekeeping at every entrance to any health service and hospital dept) so there was somethign positive to support then such a campaign would also make sense as well as providing information to patients/supporters and the general public about what was going on.

And I wonder whether part of the issue is whether for many of these scandals whilst people might sympathise and say 'how terrible' for the victims, what really gets them talking is anger at the injustice in particular the 'whatever' about the perpetrators or cover-up etc. even though in the right context they might sign something as 'not right' and more like 'outrage at the Post Office management', sorting out that bad/wasteful dept, finding out the stuff you've been putting in your recycling bin is being dumped or incinerated, who's to blame for Grenfell (and the whole cladding situation).

It doesn't in itself make people stretch to donate to victims who in these examples they would see as deserving justice not charity etc.

edited to add: but it's up to us to then have a sensible 'ask' in its place - I mean most laypersons can't believe we don't have normal staff in clinics at least, but all of this instead. It just isn't communicated well because we get caught up in comprpomise or politics of it, as well as of course the who will put their hands up question. But really a campaign saying 'staff clinics with medical doctors, biomedical scientists, and staff who don't harbour beliefs of psychosomaticism/rehabbing untreated illness instead of ... {insert term we need to come up with}'

 

Interesting discussion.
Like some has said, the membership model where you get a newsletter/magazine as the chief benefit of your membership may not be that attractive to as many with so much free information easily available online.

But charities are still relevant for at least one reason: financially supporting research.

It is possible it might be better to divide this discussion into different parts e.g. why do not more people with the illness and their families not donate to and/or fundraise for research specifically; and also not make it a UK-specific discussion.

One thing I’ve noticed from running a national ME group for nearly 30 years is people in their 20s and early 30s very rarely have donated to anything (including our research fund). Here they get the full disability payment. If they were living on their own, that’s a lot of financial responsibility but many live at home. In many/most cases they may be giving up money but still would have disposable income.

Also many people in their 70s and most in their 80s lose interest. They can be developing other health problems (sometimes they mention this explicitly) and possibly because there are no objective tests showing their ME, the symptoms may be forgotten about/seen as just aging.

 

Yes. Among BPS doctors there’s the belief that interacting with others with your illness will actually make you worse, they likely pass that belief onto the patients they “treat”.

 

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.

 

Yes. And despite knowing their decision making sometimes raises questions, I'm willing to donate to the Ramsay Research Fund. I wouldn't expect to agree with every decision an organisation makes.

The MEA did well to give the fund its own identity. For me at least there seems to be enough separation, even though Ramsay and its decision makers are still linked to the main charity. It's done some good work, and has the potential to do more.

But at the moment I'm not willing to donate to the MEA. That money would be for what they do to represent, inform, support, and listen to people with ME/CFS, and for their work in advocating for change. They don't do some of it well enough, and it appears that's partly because having an asset like Charles Shepherd isn't enough to cancel out having a problematic figure like Neil Riley. Sort that out, and I'll look at it again.

 

If it's just considering a donation front a significant amount of donations to charities is actually legacy funding. So when people die they donate houses, stock, larger sums. So diseases that affect the older population or a high mortality rate are better funded.

Yet with the chronic and often long duration of ME without work many don't have the financial resources to donate significantly.

But on membership it can be a vicious circle as without strong presence through advertising or PR (which takes £) then people don't know about ME charities. But it might also be why join? The reasons have to be clear and for there to be clout behind the charity.

If one looks at the heart charities, before the BHF there were lots of little ones and they merged to found a big stronger org. There are pros and cons with this approach though

 

People with ME eventually die too.

So they could leave a legacy for ME in their will.

But it appears fewer do than with some illnesses.

I have wondered whether some people with ME think it would be a waste putting it in their will as they may get better before then and it would be messy to change their will. When in fact most people don't recover from ME.

 

A lot of us don't have assets to leave anyway because we were never able to earn enough. I rent both my property and my vehicle, so there's unlikely to be much left after my estate's settled my bills and paid for me to be planted in the green burial site! And if people have partners or children, they will probably want them to benefit from what they are able to leave.

I imagine the typical profile of someone who leaves a substantial sum to charity is either that they're leaving enough to help the next generation along as well as make a charitable bequest, or they bought/inherited property during their lifetime but don't have surviving family to leave it to.

 

You are certainly right that some people don't have much to leave.

But lots of people I come across own the property they live in by the time they reach the traditional retirement age.
Some of this will have been due to inheriting money from their parents.
So while they may be cash poor when alive, when they pass on there can be a substantial asset there.

Also that there are probably more people with ME who have no children than on average in society.
Like you suggest, I think it's the people who have no children who are some of the freest to give a lot of their money to charity.

I think a lot of money could be raised from legacies from the ME community.

 

Don't worry, most of the commentary does anyway apply generally, but as we move into considering solutions, I think it will be important to keep a UK focus.

 

I'm in the process of preparing a summary of the thread so far, which has mostly identified problems but not solutions. Then I'll invite everyone to put forward solutions. Because we've been talking about the UK (as per the thread title and my first post, but I realise that people may have forgotten about that focus!), I'm assuming that the solutions that we put forward will relate to the UK by default.