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

I would even suggest that much of it has nothing to do with diseases at all. I have know tremendously many people that are very concerned with environmental/climate issues that fundamentally care about these issues such that they have an impact on their lives (they go to demonstrations, become part of organisations, purchase alternative and less products, change their consumer behaviour, become vegetarians/vegans, stop using aeroplanes, stop using cars, decide against having children etc) and yet I think the large majority will have steered clear from fundraising for various complicated reasons, social and otherwise.

I can still recall when the Livestrong Foundation was a big thing and everybody was walking around with those yellow armbands. I would conclude that they were awfully succesful at fundraising but whether they actually did anything for cancer research I have no idea. I suspect running a charity is like any other business and there is some dependence on luck and other things that are rather complicated.

I think there is a fairly simple solution to that which would be "Run for ME/CFS". Almost any sport event you join you are able to run for cancer, bike for Parkinsons or swim for HIV/AIDS, apart from Mike's self-organised ME/CFS runs (and recently some prominence by WE&ME) I haven't seen anything similar for ME/CFS. I don't think that has anything to do with ME/CFS being controversial, underdiagnosed, misunderstood or the like, I think many people will fancy themselves completing a marathon for a good cause even if they have only a very vague idea what the cause actually is. Throw in some cool ME/CFS merch and I think you'd be able to catch a few people that would be part of such an event. If I sign up for a sports event I can often even choose to complete it for a certain cause, I wouldn't be surprised if ME/CFS simply usually doesn't show up there for reasons that have nothing to do with ME/CFS.

 

The way I look at it, is people have money to invest in improving themselves. Is the best way to spend all of it on speculative treatments and none on research, which is what most people do? Or is using your portfolio in different ways a better use of your resources? Research progress can inform you of which therapies are worthwhile, which are likely to make no difference and which could make you worse. Research progress could lead to new treatments: it has in other fields so it could here also. Also if there is enough evidence for a therapy, people may not have to pay for the therapy out of their own pockets. Research can also help to change attitudes so that people get better support and so potentially preventing people get worse.

I have seen people try lots and lots of therapies and appear to have no money for research (we have the only research fund in our country though some in recent years have given to charities in other countries) and I don’t accept that that is the optimal strategy for progress.

 

Someone has to pay for the research. I think it’s an illness community’s responsibility to ensure there is money to pay for research.

Some may feel the best way to do this is write to politicians. I think there can be a place for that. But I argue the most important thing an illness community can do is raise the money themselves, through donating, fundraising, supporting charities raising money, etc.

People with the illness are the people who will benefit from research progress and similarly people with the illness will be the people who will suffer without progress.

 

AfME did something similar.
Action for M.E. Walk with M.E. 2019 | Science for ME

and there was
Walktober for ME Action: A Day To Walk For You (October 30) | Science for ME

 

I mean everyone with an illness.

Governments don’t have people who go down the thousands of illnesses and ensure all the promising leads are followed up and commission research into areas they see are lacking. No one does that.

There is nobody ensuring there is prompt progress for research for an illness.

As I say, I believe it is the people with the illness (and to a lesser extent their loved ones) who will benefit from research progress and it is the people with the illness who suffer from a lack of progress.

To most people in society it doesn’t matter too much if there is research progress, they have their own priorities in life.

The more people with the illness who opt in and do what they can to ensure there is money for research, according to their means (financial and otherwise), the better.

I disagree with an attitude that “it is not my problem”.* Whose problem is it? You’re the person sick, you’re the person who will benefit with progress or won’t if there isn’t any.

*Edited to add: this wasn’t aimed at any poster as I try to clarify in my next post.

 

Apologies if I was I was unclear, I was disagreeing that it is not the problem of the average patient to ensure there is money for research (through for example fundraising and donating). I believe it is their problem: they are the people who suffer if there is no progress and they are the people who benefit if there is progress.

 

The problem with the Action for ME Walk is that it appears to be pwME walking for ME which is the opposite of what you want to be doing and of what is being discussed. The others appear to be great initiatives by individuals raising funds by doing some form of challenge similar to what Mike does with his marathons, but that is not what I was trying to get at.

Here is some examples to illustrate the problem. If you run the London Marathon you can sign up to do so via a charity, here is a list of those charities: https://www.tcslondonmarathon.com/enter/how-to-enter/charities-with-places. Those are hundreds of charities, a brief look suggests that only Action for M.E. seems to present. The Boston Marathon doesn't seem to include any ME/CFS charities, neither do the NY Marathon or the Berlin Marathon. The Paris-Roubaix Challenge can be ridden for cancer charities but not ME/CFS.

Those are just some random examples I picked out where ME/CFS charities are not represented. Perhaps @Mike Harley knows whether ME/CFS charities seem to be underrepresented at sporting events and whether pointing them towards this might be sensible.

I don't know whether those events actually bring a lot of money for charities and I suspect that it is not the case.

 

Similarly, expecting patients to put in the funds and legwork shouldn't be the norm because what's supposed to happen with rare diseases? The 100 people who suffer from it pool their pocket change and hope for a miracle?

We should strive for governments that cater to everyone without needing to be endlessly lobbied to do so, and more people with money and power helping with problems that don't affect their own lives at all.

 

That is literally infantilising patients. Most patients are adults. They can choose to not take on any responsibility to try to ensure there is money for research. But that has consequences. The fewer people that opt in, the slower and less likely there will be progress.

 

I don't think it's not my problem.

But I do think it's not really my job. What are research funds for, if not to fund research? What are charities for, if not to fundraise for research and lobby for better healthcare in the meantime?

They're well placed to do it, and many of us are very badly placed. I'm not even severely ill and I still have a lot more on my plate than I can manage. Also, it's not my skillset, and I have almost no family and only a tiny circle of friends—some of whom are worse off than me because they don't qualify for any of the financial concessions offered to disabled people.

I don't even see many projects seeking funding that I think would make a real difference. I'll give what I can to SequenceME, but I won't ask anyone else to. My closest friend lost her mother to cancer and was very moved by how hard the hospice staff worked to make her mum's final weeks as comfortable and as joyful as possible. I'm not going to ask my friend to give her scant spare cash to one of my charities instead of them because...well, it would be crass.

Sorry if this comes across a bit too strongly (brain not doing very well today!), it's not meant to. I'm just trying to explain why it may seem an unreasonable ask, specially for people affected by ME/CFS. No healthcare, no social support, no earned income, and an illness that deprives many of the wherewithal even to eat a healthy diet.

 

First priority imho should be lobbying government to;
- increase funding
- change the perception of ME
- properly support patients

As patients we all pay taxes, one of the responsibilities of governments is to fund research and provide care for diseases which for ME they have miserably failed in.

Someone in this thread puts the responsibility on the sick patients. I disagree and otherwise I would like a refund for my taxes for the past 18 years haha.

Recognition and support for patients will lead to less pressure on patients and their carers. And this could result in more fundraising.

Recognition of the disease will lead to more funding not only from patients but also from affluent donors.

If ME is taken seriously it would also be a lot easier to fundraise from friends and family.

To put more pressure on severely ill patients to get more funding in this toxic culture who are already dealing with a lot;
- a disease underfunded by governments
- charities that poorly represent them or even worse
- their carers unsupported or even hounded by government agencies for faking their disease
- very little good biomedical research to fund

It is a good idea to look at other diseases and how they are successfully campaigning for;
- awareness
- funding
- lobbying government
- etc

But it is important to keep in mind that most other diseases do not have the same toxic culture, where a patient is fighting government, healthcare and sometimes even patient organizations.

In short; funding is good, but let’s start with government’s responsibility.

To put even more pressure on patients, should not be the first priority.

 

We don't have data, AFAIK, on how many individuals donate but as per my first post on the thread, the money donated to our ME charities divided by the number of patients we believe are in the UK seems well below that of charities for other diseases. I think it's so far below that it's likely to reflect a lower proportion of donors and not just PwME not being able to donate as much individually. (If anyone has better data, please post it.)

I didn't intend to imply any criticism and I don't at all think badly of PwME who don't donate. We're all just doing our best to get through difficult circumstances.

I 100% agree with you that guilt-tripping is not appropriate. I also don't think it's an effective way of getting people to donate.

Unfortunately, just presenting facts doesn't tend to engage people. All charities are in the business of persuasion, but you're very right to point out that, especially for ME/CFS, any persuasion needs to be done in a way that doesn't leave vulnerable PwME who are in poverty feeling left out and guilty. Having these considerations raised is one of the reasons I'm finding this discussion so valuable.

I'm not suggesting that the forum does anything other than discuss the issues and possible solutions. (And it's doing an excellent job!)

 

The key issue for me is that, without biomedical research and the effective treatments that would result, PwME are stuck in hell. Poor funding has led to poor research outcomes, and has for decades. Our charities are trying to raise money for research but they're not raising anything like what we need. The big funding bodies aren't coughing up. Our situation is desperate, and we need a ton more money for research.

I agree with you. Donating and fundraising is not our responsibility. No one should feel bad about not doing it. In a rational and humane world, our governments would have been pouring money into research for years. But they haven't done this, and they're unlikely to start, so if we want to get out of this hell together then the money has to come from somewhere.

This gives us an opportunity, not a responsibility. Those of us who are in a position to do it, on however small a scale, can see this need for funding as an opportunity to help ourselves and other PwME. We can weigh that opportunity against other things that we want to do and decide whether or not to take it. To raise money successfully, the opportunity needs to be presented in such a way that there are non-financial ways to support research, and so that PwME who are too unwell even to write a letter or sign a petition in support know that there is no burden on them and that they are valued.

You're absolutely right, Trish - none of this should be necessary. But I think it is.