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

Hi all - sorry to have missed so much of this discussion - it appears very useful.

At the heart of this is one issue: for many diseases, the majority of UK disease research funding comes through the charity sector: charities make the case for donations, raise money, and spend it on research. Charities may also be able to spend money on more uncertain / risky research as they are not evaluating it against other diseases as the NIHR and MRC are. Therefore if we want more research, we need to figure out a way of fundraising for it. Less fundraising = less research.

However it is absolutely true that many people cannot donate: CAF data show that 70% of UK residents do NOT donate to charity. So fundraising drives which target 100 people will only touch 30 who many be willing to donate. Of those 30, ME will then be competing with many other important causes such as cancer, hunger, donkeys, etc.

People do find fundraising difficult - it is uncomfortable to ask people for money. The art of fundraising is to create campaigns which people are more easily able to support. It is an art, and it isn't easy.


The discussion about membership fees is a good one - Parkinson's UK stopped charging for memberships - they ask for a donation from those signing up. This also has the benefit that Parkinson's UK can claim giftaid on this donation. Parkinson's UK does offer the magazine in printed format, but makes it clear that each edition costs them £3.50 (from memory) to publish and post. I imagine most people who want a physical magazine then do cough up.

Personally, as a 42 year old man, I don't find long-form magazine formats useful - regular (monthly-ish) digital updates on important topics are better for me. ME-Resarch UK recently reduced its magazine size, and I think that was a good move.

 

Thanks Peter - I didn't know that about GiftAid.

That's interesting - I had no idea of cost, and I worry that the MEA have fallen into the trap of spending a lot of money on a very long magazine that members don't want, and are forcing them to pay an offputting membership fee for the privilege.

 

Yes and yes. I don’t know how much help exactly, though.

About 300 NOK py. £21 / €25 / $27 at the current rates.

If you’ve got the lowest disability rates, you’re on about 14.000 NOK/month. That’s not enough to rent and eat, especially in larger cities. I have a small apartment, and I pay 13.000 NOK in interest and installments.

Our currency is very weak atm, and nobody knows why because the research standards of Economics (my background) is on par with Psycho. I spent most of my time at uni (edit to add: as a student) being annoyed at how obviously flawed every theory was..

 

What do you think the correct number should be?

 

Don’t quote me on this, but I believe that there’s only one national fee. I don’t know if it’s distributed based on membership numbers in the regional groups.

Btw, the fees are 470 NOK for regular, 270 NOK for 30 years and below, and 270 NOK for low income members (honour system).

 

I fully agree with that, largely because of the excellent analysis you’ve done show that other medical charities fund a big proportion of the research that happens, and I believe that helps open the coffers of the funding organisations.

The gift aid (charities reclaiming tax already paid on donations by , For those that don’t know) could help make up for people who aren’t able to pay.

But I suspect a very hyper proportion of people with ME are not taxpayers because their income is so low. That will be a very different position from the members of other medical charities, such as Parkinson‘s, who have often built-up income/wealth before they get ill. So I don’t know how much money would bring in in practice. Our charities would know what proportion of their donors are able to gift aid. A bit of data goes a long way.

 

From what I recall Peter said before, a lot of the supporters of charities like Parkinson’s and Multiple Sclerosis are relatives of people with the condition. The rate of such people stopping work might not necessarily be hugely different between Parkinson’s and MS on the one hand and ME/CFS on the other.

 

I would be willing to bet that ME/CFS patients need more care from close family than most MS and Parkinson patients. Due to: less help and lower FC.

From the Norwegian ME Association (p.37) - time (hours/week) spent being a carer. From the top: very severe; severe; severe - moderate.

https://www.me-foreningen.no/wp-con...De-alvorligste-ME-syke-rapport-og-vedlegg.pdf

 

Fair point.

But what about access to care? That’s notoriously difficult for ME/CFS-patients. My intended point was about close family’s ability to work while they take care of the patient.

I get no help, I’m bedbound. My parents have to do everything.

My uncle has very severe MS, he has around the clock help and lives on his own. My parents help him as well, but the healthcare system would have covered everything they do if they applied for it. I’ve also got family with Huntington, they have dedicated care homes.

 

Lack of private funding is the main impediment to change for ME patients.

The first thing that must happen to achieve that change is a shift in mindset, a vibe change needs to happen in the community. PwME, and maybe even more importantly their loved ones, need to understand that they can bring about change and actually must bring about change, because, obviously, no one else will do it for them.

People often make it more complicated than it is. Almost anyone can fundraise for an ME charity they trust. They just have to try it. Most people don't because they are too pessimistic and/or have unrealistic expectations for what would make a campaign 'successful.'

Most people underestimate how difficult and expensive it is for a charity to raise, let's say, 50 bucks, and how, in comparison, it's easier for an individual to do it for a charity. Peer-to-peer fundraising is highly underutilized in ME circles. It's kind of absurd to see patients raise 100k for questionable surgeries, but nobody tries to do that for a research charity instead.

Not all patients are able to fundraise, but most are, not all patients will raise huge sums, but some will, in effect what we want is to maximize the number of people trying to raise funds safely and get more optimistic.

Nobody has to fundraise to be 'a good patient', but it's kind of irrational not to try, because it's what has the best change of improving your mid- to long-term outcome, especially if you do it safely. You can't lose (much).

Here is a good example of what one SEVERE patient can do in two months:

https://www.gofundme.com/f/mecfs-forschungsfoerderung

The overall vibe is slightly shifting, but we are far from a situation where we want to be. I remember when I started 'campaigning for campaigning' 8 years ago patients mostly reacted aggressively, this has almost disappeared.

 

Who pressures anyone to do anything? How would this even be possible? Nobody has to do anything, obviously.

 

That's a bad reason for not campaigning for fundraising, imo. It's actually the worst of all reasons, because it's exactly those people that need funds raised the most.

I am a very severe patient myself, so I fall in this group, at least from a physical capacity POV.

I said twice not everybody can, and people who can would be wise to engage, not only for those who can't, but for themselves, this is not about guilt.

Many people are extremely disadvantaged.

 

This doesn't necessarily scale though - if more people did it, the total amount raised might not be much more. Raising money through online messaging is not the same as charities that obtain donations from other means.

Yes, but a key point is that the newly diagnosed are often (like I was) told/led to believe they will spontaneously recover and they are also usually struggling to the point that all of their energy is devoted to living (or trying to find treatments), rather than having time to fund-raise.

Societal views are also hugely different, between the view of Parkinsons or MS and ME/CFS, the former of which are considered serious and incurable and the latter many people believe is lifestyle based and CBT/GET/diet/quackery will fix it, all of which greatly reduces the willingness to donate.

It is foolish to make the comparison to these other diseases when the playing field is anything but fair.