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

Just managed to find its very jaunty YouTube promo video (very lively music, sound off if you're sensitive!). The weblink to the blog is dead, but the blurb explains an aspect that I'd forgotten - that you were only expected to donate part of what you saved to biomedical research, and keep the rest for yourself, so it was win-win if you weren't minted.

The only activities I remember were the toilet roll / multibuy thing, and selling items on Ebay that you wouldn't otherwise bother to sell. I wish I could remember the other 50! Maybe stuff like making your own greetings cards, checking your service providers to see if you could get a better deal on your phone, utilities, etc., going chocolate-free for a week, that kind of thing...

 

The one thing I used to do, in the olden days when cash was a thing, was drop the annoying quantities of small change I accumulated into a spaghetti jar.

If I'd saved money on my utilities I'd have needed it for something else, no question, but dealing with small change was so much effort it wasn't worth my while. The local cat rescue centre encouraged people to donate it, because they had volunteers who could find time to count it and bag it up for banking when the shop was quiet. And for people who aren't so short they have to sit in the dark or miss meals, small amounts like that aren't missed.

 

An archive of the website saved in 2010 is here: https://web.archive.org/web/20100512090014/http://www.justfourquid.com/

 

The modern day equivalent of donating small change is Give As You Live if you do online shopping. ME Research UK can be supported through them.

 

That's a great idea. Some websites ask if you'd like to round up the cost of your purchase to the nearest £1. I always do, regardless of which charity it's supporting.

I can't get out to the shops easily, so I buy almost everything online.

 

This looks amazing. £7876.54 has been raised for ME Research UK through this scheme according to its blurb. I can't get out to shops so buy online and hopefully will use it.

 

I think the problem local groups have isn't so much funding as lack of people to fill the necessary roles. The Edinburgh group edmesh (which was affiliated to AfME) went bust recently for that reason. The annual membership fee was kept at £10 for decades. Many years ago I was at an edmesh meeting where there were two people from the West Lothian group which had ceased to exist. I think at times the West Lothian group had no one turning for meetings.

It's concerning that even a city group which ran many events and services can't survive.

It's a recurring theme in this thread that we're not plugged into the large scale charity networks and mindset. Lots of people volunteer and not always for causes they have personal connections to. If we were part of that we might have retired accountants willing to be treasurers and other people to do the IT from outside our community rather than sick people and those closest to them trying to fill these roles. But I don't know how we do that.

Edited for clarity - the Edinburgh events I managed to go were well attended.

 

One of the groups I attended had that sometimes, but I can understand it. It's not necessarily lack of interest or commitment, people sometimes haven't enough spare capacity to go out. Let alone attend a face-to-face meet up with people they may not know well, which is quite demanding itself. I struggled with that even though I was comparatively mildly affected, so I stopped going.

The local one now is Facebook group, which although not on an ideal platform is much more accessible. Severely affected people can look in, as well as mildly affected ones whose work or childcare responsibilities would probably leave them too depleted to attend a group. There's no membership fee, there wasn't at the face-to-face group either. Neither were organisations in a formal sense.

 

Thanks for the tag. Yes, you're absolutely right. ME charities (outside of AFME) don't get charity places in the major marathons. It's massively frustrating but something I kind of knew when I picked Invest In ME (who are very small). I guess if there is any silver lining in this, it's that because ME is such an 'unusual' cause to be running for, it does mean that I've managed to get a bit more traction with media interest than more mainstream illnesses. The marathons themselves have been quite helpful on the whole and the prevalence of Long Covid has helped me a little in attracting attention.

It baffles me why there aren't more fundraisers for ME charities. I truly don't understand when there are so many people suffering with it in the UK. I've not said this publicly before but the purpose of my running isn't to gather money from people with ME or their families to then divert to ME research projects. Afterall that's just people with ME just crowdfunding to find their own cure. It's about encouraging and activating families/friends of patients to take on the cause, raise the profile and get ME into the spotlight so we can force govts/health authorities to properly fund research.

My friend Ben (Ben runs 4 ME) has run over 20 marathons for IiME and raised £10K and I'm really proud of everything he's achieved.

I wish I could do more. 2 marathons a year is all I can afford (I don't take money from IiME) and I've got a young family. My priority is to try inspire/cajole others into fundraising so we can all get there a bit quicker.

 

Absolutely, Kitty. I wasn't criticising anyone, just saying how difficult it is for groups serving smaller populations to keep going.

Yes, Trish. I think pretty much anything submitted to the newsletter was printed. I'm looking at an edition from 2022. There's reports on implementation of the NICE Guidelines and DecodeME, a useful list of contacts, but also on apple cider vinegar as medicine. I remember a long, favourable piece on Gupta stuff.

 

I feel so sad reading this. Me too though. l won’t ask and no one has offered. For the reasons you describe for you and your daughter.

 

I don’t think it comes across like you’re diverting money anywhere. It’s clear you’re on a mission to spread the word and gather support for people with ME!

Are you on other platforms from Twitter as was?

I used to keep up with your updates on there but you have to sign in now and it’s you know now.

 

Hi Ash

I'm on Instagram, Facebook and BlueSky. Couldn't bear Twitter/X any longer (Musk etc). If you search 'Mike Harley' or 'MikesEUMarathons' you should find me.

 

Yep. Unbearable.
Great, I’ll look on BlueSky.


All best for 2025 to you & family!

 

Unpopular opinion: I think the pre-Covid 250,000 figure was an over estimate, 250,000 would have been about 0.4% of the UK population at the time, but according to some sources the stricter CCC yields a prevalence of 0.11%.

https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/

 

If 250,000 is an outdated guesstimate, are the main ME charities able to push a new number, even if it's not fully accurate? I'm sick of seeing that number being quoted when it's clearly wrong.

 

In case it has not been said: the Norwegian MEA has over 7000 members.
That’s about 0.13 % of the population.

Idk why there are so many members relative the the UK, but my first guess would be that they are very non-BPS-oriented, and they’ve managed to no be tainted by the lobby/mafia.