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

Andy said:
To actually address the topic of this thread, they don't see any personal benefit, and if they do then they can't afford to. So solve those two issues and the problem will be solved.
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Maybe part of the story, but for the vast majority of ME patients who aren’t “activists” or very “informed”, they don’t see ME the same way we do.

It’s often a shameful thing doctors tell them not to focus on. Something that their family doesn’t take seriously. Or to them it’s just one label in their pile of diagnoses with FND, FSS, Depression and whatnot.

They see it as a shameful problem they have to personally overcome. Which is not at all the kind of mindset that leads people to donate to and join charities.
 
boolybooly said:
The question I am asking myself is how many of the 250k estimated prevalence have a solid ME diagnosis? It took me ten years to get an ME diagnosis. I got the impression NHS GPs were reluctant to diagnose ME. How many have been told to take it gently and wait and see? Or to try to get exercise etc by well meaning physicians who do not recognise the syndrome?

With Parkinsons and MS there are comparatively clear diagnostic symptoms so there is no denying it when patients are diagnosed. With ME the mild and moderate cases can have more nebulous and fluctuating symptoms. People with a mild case can try to keep up appearances and there is a lot to be gained from doing that in terms of social happiness and self esteem as long as they rest a lot in between and I would not begrudge anyone their happiness. But that can include not identifying as a PWME and not wanting to get involved in the politics etc.

For similar reasons, I get the feeling many of the small but real proportion of ME patients who recover, don't want to go back there. They would rather move ahead with as normal a life as they can and forget their time with ME. In a competitive work environment it can be seen as a sign of weakness to associate yourself with a medical condition especially ME. How many of the 250k (Chris Ponting estimates 690k including longcovid) people with ME/CFS shun the diagnosis and identity of being a PWME and prefer to tough it out?

That places us in the invidious position of trying to recruit the mildly affected who dont want to be recruited and pumping the more severe who are forced to accept their condition, for money. The problem with that is the main ME charities have not proven to be entirely convincing. Only a few days ago the MEA editorial upset a lot of people and suggests you can't quite trust the MEA to give the right kind of advice. A few years ago A4ME were following a policy of critical engagement which was constructive in the long run but put them in with the psychobabblers who eventually walked out when they lost the game. That has changed now but was a scarey time and for those who are trying to survive with an ME diagnosis, the memory of that might be offputting. Question marks hang in the air.

S4ME itself was formed to create an haven of reason where stressy discussions could be avoided and science given the focus. I think the cognitive symptom of emotional lability in ME is real and can be quite toxic in relation to less carefully moderated online communities. That is another thing which could put people off engaging with online communities, call it the Lord Of The Flies factor.

I think your observation is fair @Sasha but I think we have to be careful and sensitive about all these issues when we try to decide what to do about it.
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That’s Bout it. I think only a positive research type thing such as decodeME dud pretty well can unite people in any kind of way
 
Yann04 said:
Maybe part of the story, but for the vast majority of ME patients who aren’t “activists” or very “informed”, they don’t see ME the same way we do.

It’s often a shameful thing doctors tell them not to focus on. Something that their family doesn’t take seriously. Or to them it’s just one label in their pile of diagnoses with FND, FSS, Depression and whatnot.

They see it as a shameful problem they have to personally overcome. Which is not at all the kind of mindset that leads people to donate to and join charities.
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I don't disagree, but I would group that under the "not seeing any personal benefit" heading.

Sasha said:
What benefits do you see a PwParkinson's or a PwMS getting from their respective charities that ours don't provide?
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I don't know, you'd have to ask them.
 
I guess when we look at other threads about the charities, there's a why on earth would I join them? Especially, the MEA, whose seeming USP is a quarterly magazine and some Facebook posts.

We are being let down by both the main charities in terms of reasons to actually join them - but it's probably a bit of a chicken and egg situation; they need the will and membership fees to make their reach, PR etc. a dynamic meaningful proposition, but without this, they don't have the ability to have this reach because they don't have the income to make this happen (I include will because this is an important aspect, especially given recent events with MEA).

We've seen ThereForME make more of an impact (albeit, with by the sounds of it, some support from other orgs), but the fact the a recently formalised group of 3 people who are either ill with ME/LC or careers for someone with ME/LC has made more impact than the established charities combined over the last 12 months, with one of those charities booted out of association with ThereForME, it shows just how woeful the establishment is.

I joined both MEA and AfME when I first got ill, 5 years ago, I thought that was the right thing to do, I wanted them to prosper, I then realised how little their offering was so let my memberships lapse on renewal.

Perhaps I'm being too hard on AfME who are at least somewhat more open and professionalising of their presentation and, yes, they are supporting Decode, but really, is that it?

IMHO, fundamentally, until there is a meaningful, dynamic, offering that screams 'join us, we are kicking in doors and going places other have feared to tread on your behalf' why would anyone join?
 
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BrightCandle said:
90% are missing because they don't have a diagnosis.
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I'm not sure.

How many people in the UK have been given a diagnosis? (150k?)
The Samms/Ponting study last year using NHS hospital episode statistics for England stats found 100k PVFS cases. PVFS is the NHS diagnostic code most closely matching ME (there is another one for Long Covid). This also fits with several surveys of BACME clinics (where most clinics replied) indicating around 10-11k patients a year are seen, and almost all get a diagnosis (a separate issue). The NHS data almost all comes from outpatients, and that data has only been available since 2014; the study covered 2014-2023, i.e. 10 years which gives around 100k diagnosed cases, broadly matching the NHS data.

100k cases for England would be about 120k for the UK
This will exclude patients not referred because there are no clinics (still quite common) where patients who don't want to go to a clinic or GPs won't refer them. This will be biased to milder cases.

But still, The 120k outpatient diagnoses would probably be 150k people given a diagnosis of CFS/ME.

ADDED: sorry, the extra 30 K cases comes from GP-only diagnosis. It was late and I was tired.

It excludes most people diagnosed before 2014 who have not since had an outpatient appointment for ME/CFS.

We could see that as the target audience, plus people not yet diagnosed who suspect they have ME. This is also the recruitment pool for DecodeME, which required a diagnosis for participation.

Of course, most of them might have recovered after attending specialist clinics. But most had also probably been ill for many years before doing so, reducing the likelihood of recovery.
 
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Nightsong said:
Many NHS clinics will not point people to the charities
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This 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). My Dad had Parkinson's, and I think I was pointed towards Parkinson's UK multiple times by different parts of the NHS, including the NHS-supported local PD group.

Nightsong said:
I also do wonder if some people who are given a diagnosis of "chronic fatigue syndrome" even make the link to "ME" at all.
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It is possible.. Certainly searching Google in a private window (ie doesn't know my ME history) had the NHS as the top hit linking ME with CFS, followed by the CDC. Restricting it to the UK, the MEA comes second, again with the link to CFS flagged.

Nightsong said:
Then there's the question of representation. Looking at different online spaces for pwME the charities don't seem to feature strongly in discussions (except the more recent focus on policy & governance). I suspect a reasonable number of pwME feel as I do, that they're just not representative of their views & interests.
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That's a really good point.
I wonder if there are any figures on how many people belong to the main social-media support groups & how many use social media to discuss ME/CFS?
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And that would provide some solid evidence. I don't even know which social media spaces are used for these discussions.

I also suspect that many of the 'missing' PwME are not advocates and currently have little or no opinion of the charities.

They also seem to be struggling to adapt well to the age of social media.
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Another good point. Though it is worth noting that both the MEA and AfME have about 30k followers of their FB pages, so they have some presence. And they were still small organisations before the social media age, though I think there is some evidence their membership base has shrunk a little (maybe too, membership is going out of fashion as an idea).
 
The OMF in my view has been the most successful at creating an online presence and establishing itself as the charity of choice for pwME to donate with (atleast in an international sense). (Not that it’s the best charity, but in most online groups, it’s the first charity to come up when people ask about donating).

I think Unrest -> Whitney getting “famous” -> Ron Davis getting “famous”, is sort of the reason? But I wasn’t around back then so I’m just guessing.
 
Ash said:
Better drugs coming down the pipeline?
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But that's presumably the benefits that people might expect at least from the MEA and its research fund - better drugs (that is, some drugs at all!) coming down the pipeline.

I'm wondering whether there's something that ME charities are uniquely short of in terms of their offer that other charities have.
 
Sasha said:
But that's presumably the benefits that people might expect at least from the MEA and its research fund - better drugs (that is, some drugs at all!) coming down the pipeline.

I'm wondering whether there's something that ME charities are uniquely short of in terms of their offer that other charities have.
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Probably not because we’re so far off from drugs by not yet having a mechanism that it’s just not so much of a realistic possibility.

Well I think what’s missing that’s different from other charities is the lack of proof of disease in the context of an abundance of speculation that there is no ill health at all.
 
Ash said:
Probably not because we’re so far off from drugs by not yet having a mechanism that it’s just not so much of a realistic possibility.
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That could be important.

Well I think what’s missing that’s different from other charities is the lack of proof of disease in the context of an abundance of speculation that there is no ill health at all.
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For PwME themselves, I wouldn't expect that to make any difference, and thus no difference in membership (given that I wouldn't expect allies to become members of any medical charity).
 
Sasha said:
That could be important.



For PwME themselves, I wouldn't expect that to make any difference, and thus no difference in membership (given that I wouldn't expect allies to become members of any medical charity).
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Allies do become members of medical charities. For friends framily, sometimes just because they think it’s important. This is less likely in our case.

Actually I think it’s pretty hard to prioritise your own health and happiness or even that of others like you when society is busy telling you that you don’t deserve any support and that you don’t even need any anyway because you’re not ill. You’re a fraud whilst there’s others out there who really need and deserve the support.
 
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Sasha said:
That could be important.



For PwME themselves, I wouldn't expect that to make any difference, and thus no difference in membership (given that I wouldn't expect allies to become members of any medical charity).
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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'.
 
Ash said:
Allies do become members of medical charities. For friends framily, sometimes just because they think it’s important. This is less likely in our case.

Actually I think it’s pretty hard to prioritise your own health and happiness or even that of others like you when society is busy telling you that you don’t deserve any support and that you don’t even need any anyway because you’re not ill. You’re a fraud whilst there’s others out there who really need and deserve the support.
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Yep I spent years actually (clearly having been trained into saying it) saying things back to the GP then of 'yess I understand, I certainly wouldn't expect someone like me with this to be taking funding from cancer patietns' and yes literally saying it out loud. ANd yes whatever she'd said clearly was that coercive communication training where it forces the other person to respond in such a way ... and then of course by having done so you are forced to internalise it.
 
Sasha said:
That could be important.



For PwME themselves, I wouldn't expect that to make any difference, and thus no difference in membership (given that I wouldn't expect allies to become members of any medical charity).
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I don't think it helps that it is often niche little projects which people assume is a pet theory rather than a game-changer that will at least tell us definitively 'if there is anything along the lines of this x bigger area involved... or definitively not'

I think DecodeME was important because it wasn't like sponsoring whether you think eg Dr Myhill's idea of x has some benefit (and there are of course plenty of others who may well have lots of very valid ideas that really work for some but also don't work for others - but we seem as an area to have a lot of this and it probably feels like that because of the ridiculous absence of even any tiny thing that we get offered to help with anything even if it isn't ME-specific necessarily but just taking the load off by treating a skin thing or smaller x to at least take the load of that drawing on the same system off - which is all firmly down to that vile hypochondria stuff we've been stuck under for decades and will never get out of our notes and the heads of old enough generations who got into that),.... but was let's take a look at all the genes and see in the hope it will narrow things down at least.
 
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.
 
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