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

Yann04 said:
Do you have a link. Sounds interesting!
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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...
 
Sasha said:
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...
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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.
 
Sasha said:
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...
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An archive of the website saved in 2010 is here: https://web.archive.org/web/20100512090014/http://www.justfourquid.com/
 
Sasha said:
Other disease charities, such as Parkinson's UK and the MS Society, have local support groups, and I assume those groups get access to all the national organisations' support systems, educational materials, and - importantly - fundraising/donating/membership messaging. The MEA, in contrast, will signpost people to local ME/CFS groups but these are not MEA local groups and the MEA says it can't be held responsible for them. Action for ME doesn't appear to have local groups of its own.
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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.
 
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There's also a problem of local and national groups 'going rogue'.

My local group which I haven't been involved with for years, used to employ a part time benefits advisor who would visit at home and help fill in forms and attend appeal tribunals in support. I can't remember their funding source. I have no idea whether they still do that, but I won't donate to them since they wrote on their website fulsome praise of a speaker from the Optimum Health Clinic.

Now we have the MEA going in dubious directions. All it takes is one or two people with BPS leaning views to take charge and - boom! - it all goes up in smoke. Why would we want to donate while this is happening repeatedly.
 
tornandfrayed said:
I think at times the West Lothian group had no one turning for meetings.
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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.
 
EndME said:
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.
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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.
 
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Kitty said:
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
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Absolutely, Kitty. I wasn't criticising anyone, just saying how difficult it is for groups serving smaller populations to keep going.

Trish said:
There's also a problem of local and national groups 'going rogue'.
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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.
 
Trish said:
I don't fundraise from family and friends because I think it's up to them what they donate to. I feel bad enough even mentioning my own symptoms or difficulties. I don't want to spoil what little contact I have with them by trying to get them to donate.

I have also reached the age where most of my friends and family members of my generation are either dying, seriously ill, or have people close to them suffering from more deadly diseases. How can I ask someone whose husband has died from Parkinsons disease, or whose wife has died of cancer to donate to my condition that doesn't appear to be killing me?

I can count on the fingers of one hand the people who have ever shown any interest in understanding how sick my daughter and I are and what our lives are like. All most of my extended family and former wider circle of friends know is that I disappeared from work or social life with something they only see as fatigue. They never asked, they only saw me at my best and disguising my symptoms, and I didn't push any explanation on them. I just wanted to be 'normal'.

As a result I now have very few contacts with the outside world, with extended family far away, and too sick to see friends.

That all probably sounds irrelevant, but I tell it because I think it applies to a lot of us. Many of us are invisible. We play no part in other people's real lives, so why would they respond to a request for funds?

I think we have to be realistic.

I applaud the efforts of Robert and others who have been able to keep up relationships with others and communicate effectively with them to raise funds.

But I also think a better course of action for most of us is to encourage our charities to better efforts at fundraising from big donors.
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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.
 
Mike Harley said:
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.
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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!:hug:

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.
 
Ash said:
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!:hug:

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.
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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.
 
DigitalDrifter said:
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/
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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.
 
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