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

[bobbler]

Just look at how I think* (?) many who end up with a diagnosis of fibro as well often prefer to 'identify' with that vs the ME/CFS (and whichever version). I'd guess same with joining groups (because everyone has closer to the same thing - just look at the differences the different severities mean but also the types of lives we lead and whether it affects sleep etc or you can move much etc). And perhaps they'd be more willing to support a Fibro charity - but I don't know much about those.

I think there is a massive issue that a lot of pwme think that other people within these labels have something different to them. the bps stuff about 'how people manage' and splitting the spectrum so perhaps those who can't be out and about either have something different or the psychological maybe you are better for getting up and doing things, or maybe you are worse headscrew.

You are asking people to join something we can't define as a disease and then if you go by defining it as a patient group then we've all taken a hammering reputaiton-wise in a way that probably for most of us at some point meant we thought less of some others who had the same condition that we should have

and yes the fact some get squeamish at using ME then prevails into whether they think those who are happy to use it 'believe in that' and the fact that others who can't stand CFS se some being happy to use it because of that makes them feel judged (because indeed they are assuming).

it's very difficult as well because most of us have to work, but when it gets severe enough we can't even look after ourselves, and the even if we weren't worried about the stigma then attaching ourselves to something publicly because we are trying to fly under the radar with colleagues and employment (because it does affect us and we are just hoping people don't notice our turning up late or being exhausted and so on days)

I do think there is a lot of the current charities certainly historically having just been focused on telling the patients what to do. rather than good advice and pushing for cures and understanding. They also sometimes feel both not fitting the demographic in who leads them (even if you haven't looked up who it is) and not feeling anonymous, establishment in the wrong way. a bit of a whiff of the 'do-gooders' and being seen perhaps mainly as CHarles Shepherd in the MEA (ie OK for advice but limit in 'change the world' research or getting enough people to really listen to what it is who would actually change how we are treated - I suspect however this works for them because I bet the reason most who trust them implicitly including with this latest stuff it's because they think it's mainly him) the adjectives that tends to entail, and actionforME still feels a bit like it's run by allied HCPs in branding which is unfortunate because anyone who'd been chucked through the MUS abuse and then maybe got a diagnosis having been landed at one of the 'clinics' has probably had their fill and got heebeegeebees about that yucky attitude of the certain 'school' of physios, allied psychs and psych OTs even already.

I don't think it feels like we have a genuinely big charity that is definitely independent/not 'establishment'.

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.

 

[Jaybee00]

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

 

[JemPD]

Only able to read the first page of this thread

I think one of the differences in terms of amounts raised by the charities is that 'the public' understands that Parkinsons Disease and MS are horrible serious diseases with no cure. There is lots of incentive for people who perhaps know someone with one of these diseases to choose their charities for their fundraising efforts. So more is probably coming from big public fundraising to these charities than to ME/CFS charities where 'the public' hasn't a clue about ME/CFS or think we're a bunch of scoungers.

This is imho why the amounts raised are low.

the fact that only 20,000 PwME took part in DecodeME (which we could do from home and for all except the most severe was very easy to take part in) suggests

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.

I also find the charities' offer disappointing, and MEA membership is really quite expensive these days, at £18

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

And this

Many NHS clinics will not point people to the charities as they do not share the same model of the illness, whereas I suspect newly diagnosed pwMS or Parkinsons may be pointed to appropriate patient organisations at the time of their diagnosis by the NHS. In fact some newly-diagnosed pwME are apparently told explicitly by NHS clinicians to stay away from support groups.

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.

I also do wonder if some people who are given a diagnosis of "chronic fatigue syndrome" even make the link to "ME" at all.

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

 

[Sean]

For me it is mainly lack of capacity to engage (beyond S4ME, and even that is increasingly limited), and severe lack of funds to otherwise support others' work. I do donate a bit, but after 40 years of well below poverty line income there just is not much to spare. Indeed, now I am entering old age my capacity on both fronts is only diminishing, particularly in this declining economic and housing environment, in which people in our kind of situation get the rough end of the pineapple.

Plus more than a few patients, especially long-termers, will be disillusioned with how some of the charities and patient organisations behave. ME/CFS has a particular history of being shafted by (some of) them.

Another factor on the diagnosis front might be that some doctors at the coalface understand the disaster that has been the psych dominance of ME/CFS, but their hands are largely tied by the authority of those above them in the medical hierarchy who determine policy and practice.

So maybe at least some doctors are trying to protect their patients from the shitfest that an ME/CFS diagnosis will visit upon them by giving them an alternative and unrelated (and preferably non-psych) diagnosis to try sidestepping around all that, in order to give patients as much access as possible to necessary resources as the current system offers. Particularly if a patient has another unrelated chronic disorder – e.g heart disease, diabetes, etc – that will do the job of getting them that access, and which can be used to 'explain' the ME/CFS stuff enough to avoid that diagnosis being necessary.

It is an understandable least worst option strategy, though an utterly appalling comment on the state of play in this field.

 

[bobbler]

To address the second part of @Sasha's original question, 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.

I suspect there are quite a number in that latter group, for all kinds of reasons. They might not even be alert to the fact that the charities could be doing better, perhaps because they haven't had time or energy to think about it, or feel they don't know enough about running charities. But if they were asked specific questions or offered a menu of choices, some of them might engage.

Ironically the MEA is in a good position to do something like that. Assuming they're aware they need a change of leadership, they could grab the opportunity to review all of their work—ideally under the leadership of a paid CEO. Making it clear they are listening could go a long way to rebuilding some of the trust they've lost, and if they managed it really well they might even inspire former members to rejoin.

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}'

 

[Dolphin]

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.

 

[NelliePledge]

Someone asked what’s different between ME and MS/Parkinsons charity environment apart from the stuff that’s outside their control that come from the bps hostile environment like under diagnosis, discouraging involvement with other PWME, there’s the structure- Parkinson’s and MS Society both have local groups as part of their organisation. They get support from head office but also are a fundraising vehicle.

 

[Yann04]

Someone asked what’s different between ME and MS/Parkinsons charity environment apart from the stuff that’s outside their control that come from the bps hostile environment like under diagnosis, discouraging involvement with other PWME, there’s the structure- Parkinson’s and MS Society both have local groups as part of their organisation. They get support from head office but also are a fundraising vehicle.

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”.

 

[Sasha]

It is possible it might be better to [...] not make it a UK-specific discussion.

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.

 

[Kitty]

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

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.

 

[Sparkly Unicorn]

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

 

[Dolphin]

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.

 

[Kitty]

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.

 

[Dolphin]

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.

 

[NelliePledge]

Yes it could but you have to be sure you’re confident in an organisation to give a legacy.

 

[Sean]

I wanted this discussion to be specific to a single country

Oops, missed that bit.

 

[Sasha]

Oops, missed that bit.

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.

 

[Trish]

I'm not sure what you mean by us focusing on UK based solutions, @Sasha. What are you envisaging?

 

[Sasha]

I'm not sure what you mean by us focusing on UK based solutions, @Sasha. What are you envisaging?

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.

 

[Trish]

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.

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.