Fundraising for ME/CFS research - opportunities, problems

A new blog post from me, for what it is worth:

This was prompted by a tweet that is proving very popular in the ME/CFS community which suggests private/charity funding of health research is something unusual.

 

I just saw a person complain on Twitter that $50 million, not $1.8 million, should have been given for research into ME/CFS in Canada.

I would guess that they are unaware that the total CIHR budget is only around $1 billion.

Some people seem to have widely inflated ideas of the amount one is likely to get from government funds (especially outside the US), particularly when there aren't that many researchers in the ME/CFS field.

I think this could influence people to be less inclined to donate and/or fund raise directly to research as either is only going to raise relatively small amount of money per individual (if you think a research fund outside the US is going to give $50 million, for example). However I don't think it's a good strategy to have so many people ignoring trying to raise money privately.

Edited to add: I remember seeing a comment that someone wasn't interested in fundraising for "pennies" (as opposed to lobbying); another comment was something along the lines that £10 and €500 were effectively similar amounts from fundraisers as neither would make much difference [I would reply: you have to start somewhere and together we can raise significant sums]

 

Merged thread
The underfunding of ME/CFS research isn't just by governments; a lack of money has also been raised privately

(I posted this to another thread but it was a bit off topic so I thought I would post it somewhere else instead.)

My original message:

From ME Research UK:

As I have said before, this underfunding isn’t simply from taxpayer money; the amount that has been raised privately has also been relatively small given the numbers affected and how serious the illness is.
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(My response that I have deleted from the original thread)
That may be true, but different illnesses can have other disadvantages.

For example with some conditions a lot of people die relatively quickly while people with ME can be ill for decades giving lots of time for them or family and friends to donate and/or fund-raise money.

I also get the impression some have an overly negative attitude to the potential for raising money from ME/CFS fundraising and think no one or almost no one will donate when that’s not been my experience even with street collections.

I think the biopsychosocial influences has influenced how much is raised privately in another way: all the discussion of it has led many people to believe that the lack of funding in the past is almost solely down to the biopsychosocial influence on grant applications and that the natural order of things is for governments to fund all or nearly all of the necessary research to make speedy progress and that raising private money is not that important. As I explained before, I don't believe that's the case. Research budgets are much much smaller than health budgets and cover hundreds of major conditions and thousands of rarer (but in some cases often fatal) conditions plus often basic research and health services research.

The other big reason I think not enough has been raised privately is so many people think that what they have is already treatable they just need to get the right treatment(s). The attitude then is different from believing one has a currently untreatable illness.

Anyway probably going a bit off-topic [for the original thread] but it does frustrate me how seldom it gets mentioned that the underfunding of ME/CFS research isn’t restricted to governments and similarly lobbying and advocacy isn’t the only way to deal with underfunding. Probably couldn’t post this in some places but Science for ME seems like a place where adult discussions can take place particularly on matters relating to research.

 

@Dolphin

I agree. Your point is a good one about some pwME able to donate, but not doing so, because they think they just need to find the right treatment. They may also understand ME as short-lived. Not so, as indicated in the Canadian Consensus Criteria for ME/CFS. ME can last decades. The chance of recovery is very low.

There are so many layers to this disease. And, one of them is the false hope generated by practitioners who offer ineffective "treatments" for this disease. To emphasize for those new to this disease: there are no government approved treatments for ME.

Instead of donating to ME biomedical researchers, some who can afford to, are unknowingly wasting their money on potions, and notions recommended by quacks. Both alternative medical practitioners, and the BPS Movement provide non-evidenced based, ineffective, and sometimes damaging "treatments" for these truly medically ill people.

 

If the illness was recognized and supported by healthcare systems and the medical profession, it would be easy to raise 10-100x more money. The lack of recognition is the biggest blocker for us to fund it, including using our own money.

If all they did is just that: we recognize that it's serious, but we won't fund any effort, you have to fund it yourselves and we will fully support you if you do, it would unblock everything. But it looks bad so we're stuck in a bind where they don't want to help, but also don't want us to help ourselves, as it would make them look bad.

But I have zero doubt about this. Just the recognition would change everything. And they can't even give us that. Just because it'd look bad. For them. Always them. Never us.

 

Some background:

I got diagnosed in the 1990s.
The illness was not that well known then and numbers diagnosed were relatively low.

I figured if we could increase the numbers diagnosed and increase understanding and awareness of the condition, we would be in a much better position to raise money for research. So I put a *lot* of effort into that.

Now we are in a situation where a lot more people are diagnosed and the illness is definitely recognised enough to fundraise for as fundraising I have helped organise would attest.

But still not many people are putting their shoulder to wheel to try to raise money in whatever way they and their contacts can. I think a big problem is the way it is talked about in the ME community as if the lack of funding is solely or almost solely down to governments and CBT/GET proponents and the like. People will not infrequently say things like it’s terrible that ME patients have to raise money for the condition as if this is some sort of exception and with other conditions, governments fund all or nearly all the money to make speedy progress.

I do accept not everyone will be in a position to put their shoulder to the wheel to raise money for research (though it would be nice if they considered remembered ME/CFS in their will), but I think there is scope to increase the numbers that do. But it seems to do this, it may be necessary to highlight the importance of private money for research. It pays for research itself and increases the pool of researchers (particularly those with pilot data) who can go on to apply for government funding.

 

I think there are many reasons for this:

- lack of acknowledgement from doctors, BPS propaganda, means it's hard to persuade people to donate and create a structured plan that really gets people interested.

- low quality advocacy (wrong narratives, lack of proper strategy and execution, etc)

- researchers usually don't have a clear idea of what they want to study, they just throw stuff at the wall trying to see if anything sticks. This makes it very hard to convince rich people to donate, as they want their money to be used efficiently, with a clear plan/vision which we don't really have in ME.

- a lot of patients use all of their resources on alt med gurus, instead of trying to make a change, because they have been convinced (often by mainstream doctors, directly or indirectly by being denied validation about their illness) that's the right thing to be doing if you want to get better.

- patients being really sick, struggling and getting no support means they can often not help with advocacy at all

- rich people/celebrities hide the illness because of bad PR, don't do anything to help and again get brainwashed by doctors they can get better if they do X. Additionally, they often don't understand the importance of research because most neurologists scoff at the idea of researching ME, whereas for example for cancer you are blasted left and right by everyone telling you how important research is. ME (which most people know as chronic fatigue) is somehow not an illness you research, it's a metaphysical concept almost. Professionals focus exclusively on coping.

Etc...

Summarized, there is a lack of unity, expertise and outside credibility, caused by both external and internal factors.

 

Facebook encourages one to fund-raise for their birthday. The first year they suggested it, I chose the Solve ME/CFS Initiative (which was also easy because they are a listed charity at FB) but didn't think much about it as I didn't think anybody would give anything. I was surprised when friends and family DID actually donate. Some years I've even exceeded my stated goal of $100 or $200. And it requires almost no effort on my part.

 

There are other groups for example, MS societies who seem to raise quite a bit of money for research through private donations.

There are of course ME organizations that fund raise, but it's clearly not enough to generate new findings.

There seem to be a number of situations blocking donations: poverty, or income committed to just getting by, if even that, other financial commitments, the belief or hope ME is short-lived, so why bother donating, seeking help elsewhere, not in charge of one's own funds, and there are likely other reasons.

(The exceedingly slow pace of research is very frustrating.)

@Dolphin, I understand about doing a lot to try and move things along. It's difficult for individuals to bring about change. Unless a person already has some kind of clout.

 

I mean, it's not like having a bunch of scattered patients doing fb fundraisers gets you anywhere anyway. What is needed is a large scale structured plan with leadership and good narratives. We don't have it because of the reasons I listed above but the patients struggling in their lives is not the biggest reason. The only org that ever presented good narratives was OMF, but they were always mostly self serving and somewhat limited in scope instead of something the broader community could really build upon.

 

Absolutely, all of the above.
This block on concern care and support for their patients from wider society that the medical and psychological institutions have put in place to help themselves is something unforgettable and unforgivable.

When people say ‘but they just don’t know how to help’, maybe not, but they certainly are committed to making sure nobody else does either.

 

One example I would give of the lack of recognition of the underfunding of research is what happened in Canada. Before the Open Research Foundation Canada opened in 2019 (?) there was basically no charity raising money for research there.

[There was Byron Hyde’s Nightingale Foundation but that was largely a vehicle for his patients to pay him for his services and didn’t really look for donations or fundraised money].

Canada has around 38 million of a population and ME/CFS has been recognised for decades (unlike say some countries in Europe where awareness levels would historically have been a lot lower).

Like with many countries, it works out best for taxpayers to have a research fund in the country to donate to.

And similarly with fundraising of various sorts, you generally need to be a registered charity in a country to be allowed fundraise.

But the reasons for the lack of research was generally put at the door of government and government agencies. There didn’t seem to be much recognition that not raising money privately was an environment that meant it was hard to have a vibrant ME/CFS research community.

And to some extent, this has been replicated around the world (though Norway and the UK seem to better than most in this regard). People wonder why we don’t have as much funding as some other illnesses given the large numbers affected and the quality of life. But it’s rarely mentioned that we are not raising much privately.

For a solution to have a problem, the problem needs to be recognised. I think it’s unlikely we will have funding commensurate with the burden of the illness, if there is not more recognition that raising money privately is very important.

 

I also wonder whether there is also the issue that not enough good messaging getting through about how bad it can get and the different connections between milder and those more severe states ie lots of people when more mild made to feel ‘but there are other illnesses that are much more serious’ in that sort of guilting thing vs eg cancer or MND asking for money - I know I was made to feel that way re nhs funding (like CFS care would come at expense of cancer).

but that spectrum is important because it is horrendous and horrendously debilitating at the very severe and severe. Levels and a big disability even at milder levels. And it can be like that for decades and decades without going away or getting better (and we all know that but many patients don’t because until you’ve had it long enough there are various reasons you think it might improve, including either misinformation or just that information not being conveyed and other patients not always doing the job of putting that forward because of the stigma, not wanting to waste energy on something that the other person has been trained to be cynical in and indeed competing voices from those who think they recovered themselves etc - there are definitely different groups in this way).

I think money for research that is well-defined feels easier to ‘put a poster up for’ in that sense

 

Agree with the past ‘approach’ of CFS being literally used as a place to dump people with no investigations in order that they don’t have to do any investigations is a big issue.

one outcome of this (along with the issue on recovery stats and people who maybe didn’t have it claiming their recovery was down to their attitudes etc) is until very recently most dumped in it don’t feel it’s a ‘defined illness’ so the supporting research bit is hard when you feel you’ve just not had your issue gotten to the bottom of and you’ve also less faith everyone else in the pot has the same as you do that the research will have a fighting chance.

these can be tackled but it’s a big ‘being on the back foot’ vs eg a condition that’s more distinctive in eg a certain weird symptom of whatever

 

For myself, and I suspect a lot of pwME, it comes down to money, lack of.

I have donated to many things ME related in the past, but ATM my life is much more unstable.

Yesterday I got my monthly Universal credit payment, and paid all my bills, bar one small one.

I have one lot of shopping turning up today, which is short some critical bits that I need to make soups, main meals etc - so I am goign to have to go shopping soon, which wasn't the plan...but, yesterday I got paid, today I have £113 left for everything, for the rest of the UC month, until the 22nd of September.

If my income was more stable (i.e. if I didn't have a reassessment coming up next August) then I wouldn't need to rebuild a savings pot - but it is what it is and based on my last reassessment I need to have 3 or so months income in the bank for when they stop my money due to my not being able to attend an assessement wherever and whenever they choose.

So I need a reasonable savings pot to get through that - bigger than I can possibly save in the remaining time.

Which means living on as little as I can manage, again, seems to have been the case for quite a while now, with one or 2 exceptions.

So.....I'd love to be in a postion....but government policy would prefer that I am not.

 

I agree for someone in your position it would be difficult to donate anything ever. It was very good of you to make the sacrifice to ever donate. Thank you.

 

@bobbler, you are right that many pwME new to this disease don't know how bad it can get. There are a number of reasons for this including: doctors who tell their ME patients they will fully recover, quacks who say they can cure ME or CFS, support group info that skips over the fact some pwME are continually bedridden and some need tube feeding, the patient may choose to ignore the worst case scenarios etc.