#MEAction - UK Organiser

Love this discussion, everyone. Thanks.

 

What is #MEAction's position on the chair of Forward-ME's actions towards me of May 7 and May 9?

 

(genuine question, ie not intended to be 'hostile')
so what is your 'red line'?

 

That I can't say because it's not really up to me. We need to determine that as an organization. My intention is to develop a set of foundational principles/values and a set of specific policy positions through a process involving broad community feedback and adoption. I think all of our work going forward will be improved by a public benchmark against which to evaluate our messages, strategies, actions, etc., and it will be enormously helpful to our volunteers.

 

I am not aware of this but will get back to you ASAP.

 

Sorry! I worked on things Parliament from 7:30am-2:30pm but ran out of time on this. We will follow up but need a bit more time.

 

I missed this - thanks to those asking questions, and to @JenB for the responses.

I want to add my name to those worried about anything that might risk increasing Action for ME's influence. At the moment, particularly in the UK, we really need to be hammering away at the PACE trial, the way patients who criticised it were smeared and dismissed by important and influential figures, and the problems with oversight which led to things going so wrong in the first place. Action for ME is a major part of what went so wrong and they don't seem to have come to terms with this, so have considerable incentive for undermining the important campaigning going on in this area. Also, I keep getting the impression that they are just incompetent and drawn to sucking up to authority figures.

I don't know what was happening behind the scenes, but I have a concern that Action for ME's involvement with the recently published Parliamentary briefing may not have been helpful (some of the things I thought were bad about it remind me a lot of Action for ME's 'advocacy' -although there were still a lot of good things about the briefing).

I also don't know what happened with Forward ME and Suzy Chapman, but I've always found Suzy to be really impressively well informed on important details for the ME community, so anything which makes less use of this knowledge is a bit of a worry.

I think that 'unity' amongst patient groups will be harmful if it leads to important but embarrassing details being glossed over. Until we see far more radical change (and an apology) from Action for ME I think that they're going to go on making things worse for patients.

 

They put a lot of resources into maintaining their profile and a lot of people, including myself, were directed towards them by the NHS when we first got ill. For a long time they had the biggest membership of UK groups (I think that they may have stopped releasing figures for the last few years?).

To be fair, AYME were even worse, although MJ Willows is now at Action for ME.

While I think that IiME can be too 'prickly', I also think that a lot of the other groups can be too 'chummy'. I get the impression that for those who have been involved in advocacy since the 90s, a lot now comes down to personal relationships rather than just the issues that are really important to how patients are treated. To be fair, they've all been in a fairly crazy situation, with a lot of emotional strain and a lot of criticism - this can lead to a sense of loyalty to people who are just 'nice' to them.

 

I think that the issue with #MEA is that not only are the costs and work hidden but that the output isn't clear, in the sense that it's not clear what output your core of salaried people are responsible for. To me, on the outside of all those private Slack, FB etc. conversations, #MillionsMissing looked as though a lot of volunteers all over the world independently decided to use the downloadable tools and their own skills and time to make banners, flyers, do press releases, organise shoe-displays and put it all over social media. I thought there was some sort of 'how to do a shoe event manual' and that everyone had just downloaded it, got in touch with their local ME groups, and rolled it out themselves.

You said on another thread that the reason that #MM grew from 17 cities last year to 300 this year was your core staff (and I believe you, because you're in a position to know and I'm not!) but my point in the above para is that, from the outside, the contribution of #MEA's salaried team isn't obvious. To raise money for more of it, I do think that it needs spelling out.

That needn't mean literally filming in your office (I'm not sure if that's what you meant) but I do think it would be hugely illuminating just to explain what they did that made this year so much bigger than last year, and exactly what it is that you'd want them doing in future that's worth us donating to.

This is the kind of thing we need to know.

Thanks for listening constructively! I really want to see #MEA succeed and it would be great to see some of these areas addressed more explicitly in a way that hopefully will help pull in more donations.

 

I think this key point needs amplifying.

 

I was going to let it go but as you have highlighted it, I feel I have to comment on it. I find this a negative attitude. There are estimated to be 15-30 million affected worldwide (some estimates would give higher figures). They would have maybe 100 million+ close relatives and know hundreds of millions of people. Such a group can do a lot including raise a lot if it puts it mind to it.

What needs to be done is what works. I think that will vary from country to country. For example, I’m far from convinced lobbying for research will make much difference in Ireland (my country) partly based on some experience.

 

So why haven’t they, given that we’ve known about this illness for decades? This community has self-funded so many important things. But it needs the backing of some heavy hitters in order to make real progress.

 

It has frustrated me how little has been raised historically. When I got involved there was no fundraising for research in Ireland in the 1990s. I suppose people thought that was government’s responsibility even though many could have given something and some family’s could have fundraised. Over the last 20 years, the amount being raised privately worldwide has gone a huge amount in percentage terms and there seems plenty of scope for it to go up a lot, lot more.

If more people left money in their wills, for example, large sums could be raised.

 

So what do you believe needs to be done to increase the amount donated to research?

 

I agree with you that we should be able to fund research at a far higher level than we do, but for some reason, we don't. I'd love to see some research done into why this is so. I seem to remember MERUK (?) saying years ago that for most diseases, it's sufferers and their supporters who fund research and that governments contribute relatively little.

I wonder if one issue is that on the UK scene, at least, we have lots of little charities rather than one big, obvious one to which to donate. If you want to donate to cancer research in the UK, it's a bit of a no-brainer to donate to Cancer Research UK. For ME, not so much.

 

Well, I think an attitude that could be holding back people focusing enough on the problem is that it’s governments’ responsibility to fund all the necessary research in the same way it’s the governments’ responsibility to fund the healthcare system where there is universal healthcare. The two things are not the same. The best progress is made when as much money as possible is raised in total by research charities, biotech/pharma and all taxpayers-funded bodies. So do lobby in case it will work but also don’t hamper efforts to raise money privately for research. Even in a fair system, not all grants will be funded. To maximize the number of researchers in a field, you need private funding.

 

So it seems to me that you are saying that, essentially, we need more people to be educated about the need for research funding, from whatever source that might be? To my mind then, that would call for more advocacy.

I don't want to speak for anybody else, but my reason for switching the majority of the donations that I make, from research to advocacy efforts, was seeing the increased level of donations from others, that came about, I believe, from the increased advocacy efforts that have been happening. For me advocacy efforts need to be mixed, between general public awareness (which includes the need for research donations), lobbying government for better treatment of PwME AND more research funding, and larger private sources (of funding). All of that needs funding itself.

 

The promotion of quacky 'cures' and expensive speculative treatments also takes away a lot of money that could have gone to research projects. Emotionally it's understandable that people would prefer to spend their money like that, but it's another reason that it is valuable to have people speaking out and spreading awareness about how much of a pointless money-hole that stuff can be. If people are better informed that can only help them make better decisions about how to use their money.

Even with research donations though, people can be short-termist in counter-productive ways. The OMF were talking about how they've got donations that donors only wanted spend on clinical trials of potential treatments, but that's probably not the best way of moving research forward right now.

 

Interestingly I have come to the exact opposite conclusion. I don't think we have ever put that responsibility on governments, we've supported one another and fundraised the little bits that we can amongst ourselves for the past 50 years and never had a grassroots movement that puts continual intense pressure on governments to act.

Even if globally we could raise 10 times the amount we do now, we'd be miles away from equitable or commensurate funding. But I don't see much scope for that anyway, we are a group of severely disabled people, mostly living on benefits (and many in poverty), who's social functioning is also shown to be severely limited, meaning that we do not have the friendship circles or connections that would help us to raise more funds. We also have to realise hardly any of us get better, so whereas many people go through cancer and come out the other side with near normal physical functioning and can then go on to fundraise for others going through the same thing, we do not have that.

What we can do, especially now we have social media, is create noise. Openly, loudly, angrily, collectively say that this is government responsibility. Never wash our hands of anything but fight for what we deserve, fight for the right not to be harmed by the medical system, fight for our right to be supported by welfare programmes and not need to use foodbanks, fight for funding that will make a significant difference, that looks at the past studies to see what can be replicated, that isn't a gamble on one PhD here and another little project there.

The Terrence Higgins Trust in the UK started out supporting people with HIV, but changed its remit to political advocacy in about 1983, got a bunch of government funding and made a big impact on UK policy. I acknowledge I do not know much about Irish funding of research, but if the awareness across the world can stop the harm that is currently occurring with GET leaving people much more severely ill and we force governments who do have the capacity to fund research, we will be far closer to finding treatments and a cure. And it is government funding that brings in industry, once we get closer to understanding what is going on pharma companies will want to create drugs, philanthropists will want to be known for supporting the ME crisis, charities will be able to access a larger pool of healthy donors, but there isn't a catalyst for this yet. That is what campaigning can create.