#MEAction - UK Organiser

This could be OT, but my impression from UK charities over the years is that the ones run by volunteers are better, and have a culture that's more focussed on achieving things rather than maintaining their salaries. I don't want this to sound like I'm saying that people working in charities don't deserve a salary, but I do have a concern that having paid staff can alter the culture of a charity in unhelpful ways. That Action for ME is the big ME charity with paid staff might hammer home that point, but it is also the impression I get from other health/mental health/etc charities too. Maybe my impression is wrong though, and it is just a hunch from personal experience. I wonder if just having short-term contracts for specific tasks might be a way of supplementing volunteers with paid staff without it risking a long-term change in the way an advocacy group works?

I don't really know what I'm talking about, but thought I'd share my views anyway. Ideological COI declaration: I hate the culture to be found amongst most of the largest UK charities, and think that the corrupting influence of professionalisation, along with ties to government and industry, have played an important role in some of the countries problems. Thanks to everyone working hard to try to improve things.

 

An individual donor could make a lot more difference with their money by giving to an underresearched disease than one that's relatively awash with cash, and I think that could be spelled out.

Also, I think we tend to underestimate how many people personally know someone with ME and want to give to research but don't enough know that our charities exist. It's rare that I mention to a stranger that I'm ill or what's wrong with me but on a surprising number of those rare occasions, that person will turn out to have a good friend or a relative - a daughter, in one case - who is very ill with ME and that person is all excited to hear that there is biomedical research going on and charities to which they can donate.

If I was fit to go out with a tin and stand on the street to collect money (which I'm not, alas), I'd give it a go, just as an experiment, and it wouldn't surprise me if I got a few quid.

It would be worth doing this as a formal experiment, I think - twenty of us or our rellies, doing an hour on a Saturday on a busy shopping street and reporting back what we made. We might do better than we expect.

 

As I said, we have done this with blue ribbons generally outside supermarkets. Amounts vary from around E15-E60 per person per hour. It depends on spot and also the individual and how engaging they are e.g. do they catch people’s attention.

Blue ribbons have got a little more expensive and Irish charities can’t reclaim VAT so cost around 13c each. But still it’s mostly profit. We give volunteers volunteer collector badges (just an address label printed out and stuck on to a badge).

 

I’ve just recalled my brother and some of his friends making more than E100 per person per hour. They had a challenge to see who could collect the most over the 3 or so hours they collected. Mum said they were a bit cheeky. Mum collected over E500 in one day one year.

 

Charities have collection boxes. If a few people here want to try it with blue ribbons, I’d be willing to pay for the ribbons (at cost price) and post them.

 

Yes, that should be the case in a just and fair world. However, it is not happening and it is not likely to change any time soon. So in the meantime, we need to take matters into our own hands, as much as possible given our health limitations. Sometimes in life, one has to take responsibility for problems and find solutions, even though they haven't caused the problems.

And remember every little helps and adds up. Just all the free ways of raise money with little effort has so much potential.

 

Full disclosure - I had a conversation with one of my sisters last year where she mentioned that she did a fundraising walk with friends. It was the 3 Peak Challenge, which isn't easy. I forget which charity it was for something like Cancer Research or the British Heart Foundation which are well known charities in the UK.

When I asked why she didn't do it for ME research she was really surprised at the idea. (This is the sister whose wedding I couldn't go to because of ME) Of course it's not just her fault, it's mine too, more so. She sounded receptive to doing a walk for ME but we don't keep in touch very well so who knows. I should chase this up.

I mention this, because we may not be able to assume that people we know, family even, are aware that ME is something you can even fundraise for. I'd really like her to fundraise for the UK ME biobank.

 

Sadly, not the first time I have heard a similar story. I think marketing has lots to do with it.

 

A word of caution. In England, you have to apply and have Council permission to do a street collection. There are usually 3 or 4 charities applying for each weekend day. I am not sure whether it can only be for registered charities.

Individual supermarkets will also allow people to rattle a collection box but that would need to be organised with each individual store.

 

I'm tired and jaded by many of the so-called ME Charities. I support ME Research UK and MEA. In the past I've gone on demonstrations outside Dept of Health, and then gone on to lobby my MP. Given how I was treated by IiME I've not supported them and never will. I don't trust this new so called charity. I don't like Unrest either - I bought a digital copy with the thought I'd show it to my daughters, but was so disappointed in how melodramatic it was to be frank.

Doesn't anyone else here feel like me?

 

I feel similarly ...I thought unrest was ok and I fully respect the amount of work and dedication that went into it but MEAction and the chaotic mixed messages and support for quackish treatments makes me feel extremely uncomfortable. I support the MEA and buy Xmas cards from ME Research but so far haven’t been particularly impressed by either. I wish we had something like some of the cancer charities.

I’m just picking campaigns I believe in and trying to support these, although after my most recent experience with MEAction I can’t support them anymore ...and their over emphasis on social media is just a turn off for a non millennial like myself. Plus point is it’s easy to ignore them.

 

Just curious what you see different about the cancer charities?

 

Off the top of my cognitively blown head:

• They have consistent communication messaging
• They focus on both awareness in the general public as well as targeted advocacy with decision makers
• They support patients as their core purpose and don’t play “in the tent’ politics

I don’t see any of the UK or international charities getting all of these things right.

 

I follow Parkinson’s , MS and Alzheimer charities and they do more for the severe. Plus they campaign. One example is on social care for their more severe , AFME a year or two back decided this should be the focus of the ME APPG and it was where their ‘action’ was focused on and they dud a report that most people needing care with ME aren’t getting it etc (the appg which then completely folded because not enough MPs could be persuaded to stay or join, failure in itself). When the APPG folded, the issues just been dropped generally afaic but the charities don’t even seem to be part of the national charities alliance on getting sufficient care in an era of cuts which all the charities for other disabling illnesses are members of, so it makes you think how much are they really committed to these issues ,..and many pwME need social care.., vs creating PR illusion.

Our charities aren’t effective lobbyists... so the ms society regularly runs petitions on things such as the post code lottery for ms drugs, injustices in other words. Our charities don’t mobilize patients in activism even though our area so neglected. Between the PACE petition and the NICE petition what were patients encouraged to lobby on ? Has there been letter / email campaigns such as American CFS charities often encourage. ? No , we are supposed to let them do it all for us in a very mild mannered, behind the scenes way with Mr Radical, vague associations with the illness, stephen Holgate our chief representative.

Primarily we have two main charities focusing on mild to moderate support, with some research interest which has an element of duplication even if slightly different emphasis. It’s mainly on campaigning I see fault which is why we need #mea. And I also think they’re pretty lame challenging the establishment from medical schools to the MRC.

 

Fair enough and true but I think AFME perform poorly for twenty paid staff. When we see what #MEA USA has done and achieved with one paid staff and volunteers? I think there’s aversion to rocking the boat in the way we need. The fact that we are a divided field means we have waste, so overlapping charities doing support, extra charities doing research, split off special interest groups but have had none with real campaigning at the heart outside of GET issues, as you say resources can impact that. However I don’t think launching petitions, email campaigns etc is that hard or costly, so I would have liked to see sustained patient pressure on research funding from around 2008.

I am saddened #MEA is loosing appeal in some circles, I haven’t seen what’s been going on but hope they can fill the gap in the uk.

 

If you mean the ME Association, my opinion is that their social media side is very confused and actually working counter to our best interests.

 

From the hashtag, I assume Cinders means #MEAction.

 

Yes thanks , I abbreviate where I can but that ones too easy to confuse