ME charity income versus other illness charities in the UK

C

Cinders66

Senior Member (Voting Rights)
I didn’t know where to post this

I just did a bit of easy research on charity incomes via

http://beta.charitycommission.gov.uk/charity-search/


It allows you to type in charities to see their most recent annual income. Most illnesses have one or two main charities so I don’t include all the smaller ones except ours but the general picture is clear enough. I found the below

Cancer research £370

Alzheimer’s £103m

Parkinson’s 40m

Diabetes £40m

MS society (research) £29m + ms trust £2.4m

MND £20m


ME £1.2m from a combined of rounded figure

AFME £680k MEA £326k IIME £130k tymes £10k


So we have an income 30 times nearlY less than multiple sclerosis to do the same job, support, Info, research, campaign etc, for more people. The figures are very clear that Alone the ME community can’t incentivise the research field. I know we all knew this and were aware in differences on spending but seeing the vast difference in income shows we are “a special case” , falling way behind I assume due to misapprehension and stigma primarily and because we are not seen as having a long term, terminal or degenerative condition. There’s also the interesting discussion of why our own community can’t or doesn’t fundraise more within itself but I just thought I’d share the information I found.
 
I remain to be convinced the probability is high that a body like the MRC will give extra money to us because we claim we can’t raise much ourselves. If the illness is so bad, they could say/think surely between sufferers, family and friends donating and fundraising, leaving bequests, etc. more could be raised.

Spreading the message we can’t raise much could encourage people not to make an effort and actually make a virtue out of not donating/fundraising.
 
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Dolphin said:
I remain to be convinced the probability is high that a body like the MRC will give extra money to us because we claim we can’t raise much ourselves. If the illness is so bad, they could say/think surely between sufferers, family and friends donating and fundraising, leaving bequests, etc. more could be raised.

Spreading the message we can’t raise much could encourage people not to make an effort.
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It’s not deserving just because we can’t raise ourselves it’s because of the levels of disability, cost to economy, affecting people in prime years etc. To me it’s just statistics, we arent raising the cash and I’m guessing more recent years are the best ever for us. If people sat round and discussed the stats and Also state involvement and then forecast without any intervention based on those stats it’s not a great picture in terms of progress and reducing effects on uk citizens and tax payers. This page can also be a discussion on how we get more from our people too but clearly something big has to change or It’s plod on same old in this country.

We have discussed issues of people with ME being more often in the too sick to work boat or not getting benefits etc meaning they’re more poor and probably false impressions given on the illness in the early years from the nhs
I can certainly say the stigma/narrative is an issue and I know some have awesome families who get it and do great things but I know my own won’t fundraise or campaign like they would if I had MS or cancer. Multiplied by thousands I bet many friends and family don’t really believe it or are wary that others would even if they did fundraise.

I know the argument is put forward that pwME are too reliant on government instead of acting themselves, but are they ? We know government is doing nothing. And isn’t that attitude of leave it to others human nature and there to an extent in all illness communities

What we can realistically do to address all the current barriers to effective self fundraising is the key issue to me.,I don’t think we can do much on many fronts That’s when state can and should intervene, when things don’t sort themselves out.


However, I also don’t see personally what more evidence the MRC need to make an unusual special case intervention in our case - serious, disabling, chronic, costly, hitting young people, no effective treatment and seemingly unable to reverse the situation themselves.
 
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I think that engagement of non-patients in fundraising and the ability of patients themselves to fundraise are two big issues that currently hold us back and that impact on the figures above.

For the first point, we still have a poor PR image compared to the other diseases listed, for which there is no immediate fix, and there will never be a fix for the second point (until a treatment/cure is found). So the question seems to be, based on my assumptions, is "should we (the community including charities) be spending more on on PR exercises"?
 
The biggest ME fundraiser is hell bent on playing both sides to harm patients to cozy up to reality deniers. I sense a disturbance in the Force...
And we partially coddle them...
 
Esther12 said:
I think that hyped claims about recovery are also an important part of the issue, along with encouraging people to 'think positively' and spend limited funds on treatments that have no real evidence of efficacy.
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But that’s not something we as patients have been able to prevent the past decade, it’s still there and as long as it is there - caused by the medical organizations - our friends and families simply aren’t putting in like others.
 
For quite a number of conditions, patients are not likely to raise much themselves or find it hard to do so e.g. dementias, autism, other conditions that cause intellectual disabilities, probably some mental health conditions, terminal illnesses with short life expectancies, etc. I don’t see our condition as so much worse than everything else in terms of what patients can raise that they would likely want to set a precedent.
 
Andy said:
I think that engagement of non-patients in fundraising and the ability of patients themselves to fundraise are two big issues that currently hold us back and that impact on the figures above.

For the first point, we still have a poor PR image compared to the other diseases listed, for which there is no immediate fix, and there will never be a fix for the second point (until a treatment/cure is found). So the question seems to be, based on my assumptions, is "should we (the community including charities) be spending more on on PR exercises"?
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That’s a good point. Yes I think so we should, I actually think that money can sometimes be raised if people see it going to a specific thing they believe in. Alzheimer’s has an effective simple education video to stop people seeing it as just old age but something that could be prevented or treated. The issue is diverting our tiny income funds to expensive PR. I still myself don’t really see why funds are so low from a population double MS
 
Dolphin said:
For quite a number of conditions, patients are not likely to raise much themselves or find it hard to do so e.g. dementias, autism, other conditions that cause intellectual disabilities, probably some mental health conditions, terminal illnesses with short life expectancies, etc. I don’t see our condition as so much worse than everything else in terms of what patients can raise that they would likely want to set a precedent.
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But for comparable conditions we are so much worse. ME isn’t like intellectual disability, some with autism actually want it celebrated not treated , obviously more severe cases are very different.

I think most value is through contrasting us with long term disabling and distressing conditions affecting similar numbers where clearers comparison can be made. I could not find Arthritis stats.
Plus there’s the moral argument of a lot of our woes being caused by the medical establishment, name, criteria, focus on exercise etc against the wishes of community.
 
I don't think much will improve until the medical establishment are firmly on 'our side', followed hopefully by the general public.

Undoing a narrative that has been spun over many decades will not happen overnight unless there is a real major uncontestable breakthrough.

As I see it, the only way at the moment is what is currently happening; ie chipping away at the bogus evidence used to create the situation, and putting some more credible evidence in its place (although the latter will obviously take longer).

I think in terms of PR, the biggest thing to get across are the huge numbers of people affected worldwide rather than just 'raising awareness' that ME exists .
#Millionsmissing would probably have been the best for that; if only it had got the media coverage.
Something that national charities could have done a lot more on.
 
Cinders66 said:
That’s a good point. Yes I think so we should, I actually think that money can sometimes be raised if people see it going to a specific thing they believe in. Alzheimer’s has an effective simple education video to stop people seeing it as just old age but something that could be prevented or treated. The issue is diverting our tiny income funds to expensive PR. I still myself don’t really see why funds are so low from a population double MS
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I think a valid question is how many of the assumed 250,000 patients in the UK identify themselves as being part of the patient population, and therefore likely to either donate or fundraise? I certainly didn't consider myself a member of the patient population, and subsequently joined in the online community, until I stopped working completely, and only made my first donation after this point.

My belief is that there is a substantial percentage of the patient population who have no spare energy to get involved because they are still trying to work, because we have a poor 'illness image'. But to change that we need to get across how serious it can be as an illness, and that is made more difficult by the BPS crew, and the lack of biomedical research. So, undoubtedly, it's a 'chicken and egg' situation, but one I think we need to change with more PR efforts.
 
PR must be a major factor. If you asked people what for example MND or MS are, I suspect a significantly larger number would come up with some form of meaningful answer, perhaps even mention a famous sufferer, in comparison to people answering the same question on ME.

I suspect many of my neighbours and even some of my own nieces and nephews and cousins wouod struggle to answer this question or even think of me in relation to ME. Even close friends and family that I thought would know better repeatedly send me publicity or newspaper articles about the latest person claiming to have cured themselves through exercise and postitive thinking, or the latest snake oil salesman; even a GP friend sent me information about the New Zealand Lightning Process practitioner that is currently inventing her own version of LP, I don't think he fully got why I reacted so badly or that he followed up on any of the references I sent him.

To state what is obvious to most here, a lot of the problem must be down to the lack of a generally agreed name, the blame of which can be in the UK laid at the medical proffession's door. It is common for doctor's to refuse to use ME because of problems with medical evidence, even when they do not have similar lexicological scruples with many other conditions. It is not helped by a significant number of people that should know better believing it does not exist either as a biomedical condition or as a clinically meaningful entity.

Further there has been a couple of decades in the UK of bad publicity, from Yuppie Flue to exercise and psychotherapy cures us. We are still stigmatised as having something that is our own fault, is a personality defect or could be cured if we just pulled ourselves together.

However what we should do is a much harder question to answer. We are stuck fighting of two fronts, there is the lack of awareness of the general public but also the willful ignorance or even deliberate antipathy of part of the British medical establishment. The recent increased Parliamentary awareness is a step forward, and it is still possible to be hopeful in relation to NICE and Cochrane.

I personally wonder if the time is right for two books, one a good academic overview of the biomedical evidence, aimed at exciting potential researchers about new opportunities, the other a populist account drawing on the intrigue and medical abuse. My lottery winning fantasy includes funding both.

A high profile good academic book pulling together the enormous range of biomedical research, could raise our profile, make the BPS siding more obviously irrelevant, get more people thinking of potential theoretical models and encourage more potential researchers. It needs to be seen as an exciting research opportunity, not in terms of the squalid playground machinations engaged in by the BPS crew.

A good journalistic popular science book, is a good way into the wider popular consciousness. There are lots of gripping stories, opportunities to raise indignation. The right popular book, encourages TV documentaries and in turn could inspire writers of fiction and drama. A good TV drama series or a sympathetic soap story line could achieve an awful lot. I tried last year to interest a screen writer who also does a lot of soap work, but I think the amount of research required in the first instance put him off.
 
Cinders66 said:
That’s a good point. Yes I think so we should, I actually think that money can sometimes be raised if people see it going to a specific thing they believe in. Alzheimer’s has an effective simple education video to stop people seeing it as just old age but something that could be prevented or treated. The issue is diverting our tiny income funds to expensive PR. I still myself don’t really see why funds are so low from a population double MS
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But how do you know the true figures...sorry I bang on about it but doctors can't even diagnose us in many cases.
 
What also irks me, I know a number of people in the community who will never post about M.E on their personal social media pages. They are ashamed or private about it. I know each to their own but hiding won't achieve anything. I don't post much myself but I have become braver.
 
There are quite a few factors going on as to why ME doesn’t get donations. I’ve been in some of these categories up until the last couple of years.

1.Diagnosis- lack of or misdiagnosis- if people are told they have depression or Fibromyalgia or Functional Neurological Disorder a lot will accept the expert opinion. - not an ME patient so not going to put money in

2.CFS term. As NHS folks don’t say ME there’s a disconnect. If GP tells you you’ve got CFS you might just accept that and not really register that ME is even relevant to you. You won’t be signposted to organisations that will make you aware. - result not identified with ME community so not going to put money in

3. Severity @Andy s point if you’re mild and can scrape by at work you are just in that hamster wheel of keeping going and don’t have capacity to look around you, may not be aware of severe ME. - Result unaware of the impact of ME and the need for research

4 PR problem in general public you have to know ME exists, that it is actually serious and complicated, that no treatment exists, - even then you’re probably not that bothered unless it impacts someone close to you. If you are bothered you have to be empathetic enough to accept that people with ME can’t do the standard go for a walk to get some fresh air to get healthier. - so vast majority simply see it as not relevant to them.

Dementia used to be covered up. People were protected from being diagnosed and pneumonia would be given as cause of death. Then when there started to be slightly useful medication there was a point in getting a diagnosis so people had to start to be open. Now many people are open about having a family member with dementia it affects them directly and awareness is increasing. There’s still ignorance that it’s due to old age rather than brain disease and lack of understanding it is a terminal illness. The latest Alzheimer’s Research video is very good PR it shows a baby swimming whilst the message is hard hitting something like nobody has ever ever survived Alzheimer’s.

So ability to get decent money through fundraising is based on awareness, perceived relevance, perceived severity. It is a big long term project to tackle all those in the absence of research breakthroughs.

ETA there are others too like money getting siphoned off by snake oil sellers
 
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Cinders66 said:
ME isn’t like intellectual disability, some with autism actually want it celebrated not treated , obviously more severe cases are very different.
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But as I understand it from this and previous conversations, you want to claim that we are exceptional and can't raise money ourselves. However, the same is true of people with intellectual disabilities.

And as you say the high functioning people with autism are unlikely to be raising money for research, yet from what I've seen in the US anyway a lot is being raised privately for autism research (i.e. despite people with the illness likely not doing fundraising themselves)
 
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Actions can have knock on effects. For example, GPs were found to be more sympathetic if someone in their social circle had ME or CFS. Get more people diagnosed and you can make the medical profession more sympathetic. So actions like raising awareness can have an “activist” effect.

Though this won’t work as well if people won’t tell people about their diagnosis. Again, more awareness-raising can make the illness less stigmatised and so more people can be willing to share their diagnosis.
 
Dolphin said:
But as I understand it from this and previous conversations, you want to claim that we are exceptional and can't raise money ourselves. However, the same is true of people with intellectual disabilities.

And as you say the high functioning people with autism are unlikely to be raising money for research, yet from what I've seen in the US anyway a lot is being raised privately for autism research (i.e. despite people with the illness likely not doing fundraising themselves)
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I don’t really understand why we are comparing ME with intellectual disabilities. From my limited experience with some people in that area they don’t discribe themselves as suffering or limited in terms of pleasure, fun, experience. Unless you are talking about really limited people and then you’d hope the family are campaigning without the stigma and blame many severely ill with ME experience , I don’t have any knowledge regarding stats, research effort, perceived burden in that community to really further comment. By exceptional case for us I’m meaning in the context of common, disabling distressing, physical Illnesses

Autism is possibly an interesting example because I remember hearing on the radio parents doing urine research themselves because they felt abandoned. Since then over here I think much has improved with them at least having their own brain bank. Finding figures on that to compare would be interesting but even if it was another major area neglected, not advancing properly needing state help and not getting , it doesn’t discount our claim. I can’t claim absolute exceptionalism whilst I have called for exceptional measures meaning “not the rule” , just that compared with many other similar or less disabling illnesses affecting many, our care, resources, infrastructure and research progrsss seems pants.

EDIT this doesn’t seem research based but two autism charities are raising £110m/ year for care and services and campaignin http://beta.charitycommission.gov.uk/charity-details/


It does seem in uk autism gets low research funds versus economic and social costs so people are asking for more , quite rightly
https://www.bbc.co.uk/news/health-27742716?regid=269425&subid=0

The main charity featured there has a £2m pa income for research, so low. http://beta.charitycommission.gov.uk/charity-details/?regid=1107350&subid=0

In America however there seems to have been a big research effort with $1b invested
https://www.theguardian.com/comment...esearch-but-the-tangible-benefits-are-elusive
 
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