Donating and fundraising by people with ME/CFS - discussion 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%.

So more than 90% of us are missing, and this is devastating, considering that without engaging the mass of PwME, we're never going to get our fundraising to the level we need to move research forward

So where is everybody? Why aren't PwME joining our charities and our research, and why aren't they donating?

Are other medical charities that you, friends or family donate to doing something to pull people in that our charities aren't?

Discuss!

 

Just bagging this post in case I want to do a thread summary later...

 

Diagnosis is the gap. One of the challenges with DecodeME was it required a doctors diagnosis (regardless of criteria) before you could meet the CCC, this caused a big skew in the data as they explained in one of their updates. The Isle of Sky paper on prevalence showed that 90% of GP offices have no ME/CFS patients in their records and just 3 GPs are at the peak prevalence rate for a disease that hould be fairly evenly split across the country. This is why DecodeME only managed 20,000 people, diagnosis rates are atrocious and all the studies looking at electronic records have to go off symptoms not ICD diagnosis due to terrible diagnosis rates. The same is true for Long Covid, only about 75k Long Covid patients have been referred to a Long Covid service and the latest GP patient survey suggests there are 3.2 million Long Covid patients. The situation is actually worse with Long Covid and many of those aren't also getting an ME/CFS diagnosis.

> 90% are missing because they don't have a diagnosis. Charities like the ME Association regularly exclude undiagnosed patients in their representation when they do questionaries. Really none of the others really represent this giant group of ME patients who largely know what they have but aren't in a position to get that acknowledged by the NHS because their personal doctor is obstructive and wont refer them anywhere. Until the charities start representing this problem and the people I can't see them getting money from them especially since most ME patients are forced into abject poverty by their disease and all their family and friends have long ago abandoned them.

 

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.

I also do wonder if some people who are given a diagnosis of "chronic fatigue syndrome" even make the link to "ME" at all. And I have long had my doubts about the prevalence figures.

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. Some of them sometimes do good work but it's really patchy; if I donated I suspect the money would be wasted. They also seem to be struggling to adapt well to the age of social media.

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?

 

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.

 

Good question @Sasha. I don’t know if we know the numbers of us out there.

I have supported both of main charities in the past because I thought the guides were really useful (some of them)

And I think it’s lack of faith in these charities. They both do some excellent work. But they also both have sabotaged their own reputations and the lives of people with ME in the process.

Also I personally have received help from one of them that was very useful to me and helped me have a better life. But they stopped funding that one staff post designed to give direct assistance. I have contacted them many times since ask to for sign posting to services and organisations that they absolutely ought to be able to direct me to because these are common but as truly lovely as the people I spoke with were on these occasions they really couldn’t help at all.

So in my time I’ve gone from seeing them as a pretty decent and essential advice line down to not having one.

Then there’s the fact that there’s not much room for genuine participation in the projects so you can’t help either one help you.

Then MEA has been via its chair especially very hostile and aggressive towards people with ME for years and years. Almost worse recently backed up the leader of project that they funded who actually abused people with ME using the exact tropes and stereotypes that have caused people to lose their lives over the years.


So with all the stuff that I have always disliked about both charities the scales just tip the wrong way.

I have donated to IME via Mike Harley’s marathon mission. Truly inspiring.

I have donated David Tuller because I think this work really pushed the dial on BPS unpopularity.

So it’s not necessarily us it’s probably more them.

 

I think it's really important to understand why seemingly many studies and charities are doing poorly in recruiting more people.

The numbers you shared above are just for total members of charities if I understand that correctly. So whilst the numbers are so staggering that they do indeed suggest that "patients are underperforming", it wouldn't necessarily have to mean that there are percentually less ME/CFS patients in ME/CFS charities than in other patients in charities for comparable illnesses. One would have to know how full are the other charities will supporters (family members, doctors, allies, random people that just signed a piece of paper when someone rang their doorbell) vs patients and then the same for ME/CFS charities. I don't doubt that there are less ME/CFS patients in ME/CFS charities, but I think getting some understanding of those numbers would also be necessary. Are those available somewhere?

 

Thanks, everyone! Some fascinating and insightful posts straight out of the gate, and I'm amazed I didn't know how bad the diagnosis issue was.

Keep 'em coming, folks!

 

Tagging @PeterW who has looked into the charities quite a bit and possibly has some answers to the above questions.

 

@Jonathan Edwards, do you have any thoughts on this, including why GPs might not be diagnosing patients and what the solution might be? Do you agree that the problem is on this scale?

 

Yup. Charities for other diseases have often worked with the NHS for many years, and some are funded to provide services to patients. A few large charities are woven into provision for sick, disabled and vulnerable people to the extent that they're carrying out the work of the state—look at the roles of Guide Dogs for the Blind, the NSPCC, Shelter, etc. Some medical charities might be in that category.

ME/CFS charities are in a very different position. The condition might be fairly common, but it's poorly defined, poorly diagnosed, and there are no treatments for them to advise on or lobby for. People have been arguing about best practice for forty years, from entrenched positions and sometimes in bad temper.

It's a problem child in so many ways, and it's likely to remain one until we have more understanding of the underlying processes. We need to take into account how exhausting this is for people with ME/CFS. There will be many who don't want to or can't get involved in debates, and the problematic history is one of the reasons they don't donate. For a start, how do they work out who can they trust with their money? I have to admit that to some extent, I'm one of them.

 

That's a good question. But if that 250,000 prevalence figure is remotely accurate, 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 that over 90% are either not being reached by ME-related messaging, or are being reached but for some reason don't engage.

Similarly, the membership figures for the MEA (5,000), one of our biggest charities, I think are indicative. I wouldn't expect friends and family of PwME to become members - only patients. And that's an incredibly small number of patients, given the prevalence.

It may be that low engagement of PwME is the bottleneck to engaging friends and family to donate, as well as being a bottleneck on PwME donating.

 

I wonder whether the 'paradox of choice' is also playing a part in preventing PwME from being linked into the community, in that when you get your diagnosis, you're faced with a whole bunch of charities vying for your support, and you're so overwhelmed by the choice that you choose none.

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

Also, at this point, I don't feel entirely confident that any donation I make will be well spent, and I worry that it might even be spent on things that aren't in my interests. That may (or may not) be a common feeling on the forum but in the wider world, especially that of more newly diagnosed patients, that might be less of an issue.

 

On the subject of donations: ME/CFS tends to strike sufferers when they are younger, and there is a strong female predominance. By contrast Parkinson's has an average age of onset of 62 & I suspect sufferers are on average in a far better financial position. Many pwME don't ever have a chance at a career, a good pension, etc and are often in a very precarious financial position. Some medical charities will also generate a lot more funds through bequests.

As I understand it although there was some good media coverage DecodeME was at least partly dependent on the charities for raising awareness of the study, and if the charities aren't very good at it then that will carry over - I wonder how much support they got from NHS clinics, from GPs? I don't really know but I'd imagine an MS or Parkinson's genetic study would receive more institutional support and backing than anything ME-related.

And, of course, the less money the charities have, the less they can spend on public awareness-raising. The larger medical charities can launch advertising campaigns far beyond the reach of any ME charity.

 

there are loads of smaller ME charities (both national and local).
I think pwME are probably more likely to support these if they are more relevant to their needs.

 

I was still an MEA member when DecodeME was recruiting and the MEA pushed hard and repeatedly in its magazine for PwME to sign up. IIRC, there was a poster that you could ask to be put up in your GP's surgery (unless I've hallucinated that, but I doubt that posters in surgeries will pull many punters in - there's just too much stuff on those walls). I was disappointed that there didn't seem to be a mechanism for GPs to auto-search their records to identify PwME and then reach out to us to take part in the study.

 

That's quite possible. I wonder if there's a similar situation for other diseases? When we're trying to get more money to fund research, we really want PwME engaged with charities that run research funds.

 

@Andy, do you happen to have a copy of that update? It would be interesting to see it.

Just had a quick online search but couldn't find a report - do you have a link handy?

 

If I wasn’t on here I perhaps wouldn’t have noticed decode ME happening.

It’s demoralising to try to keep track of what’s happening in ME world and it’s exhausting so mostly people don’t do it. You’re ill already don’t need the drain. Because it’s not as if there are lots of good studies to keep you occupied.

I’ve never found a medical study that will say I’m likely eligible before me having to do all the paperwork because I have additional medical diagnoses. So that’s extra work for doubtful reward. Or the studies are all not accessible location etc. You might just stop thinking about it seriously anymore. So there’s that too.

Plus you had to give DNA lots of people wouldn’t want to.

Also it was promoted and party run by AfME who did an awesome job of this but people are still weary of them after they effectively got into bed with the DWP via the full BPS PACE trial and we watched so many people die following this. Or get really sick and lose their health fighting to recover from the damage brought about this, for many the trust cannot be salvaged.

Given all this Decode and AfME made amazing advances. I don’t think a better outcome was possible.