#MEAction - UK Organiser

[JaimeS]

Love this discussion, everyone. Thanks.

 

[Dx Revision Watch]

...Re: collaborations. Fundamentally, we are trying to collaborate with everyone in Forward ME for greatest impact. We need to find a way to do that while making very clear our core values and public positions, ensuring that they reflect our community's needs and desires, and are never compromised. And that we know when it is best/most strategic/right to act independently. I do not have a problem working with any organization as long as the messages and actions of our collaborative work actually align with our values and positions. Nor do I have a problem un-aligning when they do not.

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

 

[Sly Saint]

Nor do I have a problem un-aligning when they do not

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

 

[JenB]

(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.

 

[JenB]

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

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

 

[JenB]

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.

 

[Esther12]

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.

 

[Esther12]

This is something I can't get my head around. Why do they have so much influence, why do other patient groups feel they need to collaborate with them? Why did C of Mar ask AYME to leave Forward ME and yet not AfME (who now has the former head of AYME in charge of its childrens services)?
Why don't the other patient groups call on AfME to 'come clean' about its involvement with PACE and current ties to pro-PACE individuals?
Excuse the pun, but I don't get it.

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.

 

[NelliePledge]

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?)

The NHS people at the CFS/ME clinic sessions I went to didnt mention support groups at all. I actually mentioned AFME as I had seen their booklets and said they shouldnt be recommending a book by -Chalder and Burgess -when people could download info for free........this was 2 years ago when I knew little. The woman actually said she didnt think AFME were 'as bad as the other charities ' or something on those lines...

AFME have got paid staff you can phone up for information and advice free of charge. If you feel youve been supported by an organisation you arent going to rush to criticise them for not doing enough for people. Or investigate the politics if you dont see advocacy and activism as positive you arent going to look beyond AFME.

Talking of politics good to see that Tom Kindlon & co recent article has been covered in AFME magazine. MEActionUK may be interested in the mealy mouthed comments from AFME. The lowest common denominator is still quite low it appears and the movement is in very small increments. AFME clearly think their supporters arent looking for an unequivocal rejection of PACE.

 

[Sasha]

But all organizations' costs and work are ultimately are hidden. (After all, no one understands why research costs as much as it does!) I know we need to do a better job of bringing people into our offices, helping them see what we are actually doing, but that in itself is a lot of work and I'm always torn between taking the time and effort to do that v. executing on all that we have to get done.

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.

And no, Parliament didn't just decide to start doing work this year. The film's impact and reach didn't just organically happen. Many, many people have been working very, very hard. But people crash, take breaks, burn out, and no one volunteer can take the responsibility of project managing all of this on their own. However, a paid staff person could take on that responsibility and make the work of all our volunteers more impactful, effective, and continuous. We could do 10x what we are currently doing in the UK with just ONE staff person to support them.

This is the kind of thing we need to know.

I would also like to add that I'm finding this space enormously constructive. It's really helpful to get feedback from patients who are engaged and knowledgeable but who are not a part of the organization. When you're in the thick of it, it's very hard to know what people can/cannot see from the outside. Out of this discussion is already coming some ideas re: how to communicate more effectively (subject, as always, to the ever present limits of capacity...). Just wanted to say that I appreciate you all.

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.

 

[Sasha]

The heart of the matter is this: we cannot afford to pay for our own cure. There is no way that our community can fund even 1/20th of the research we need. It will need to be funded by our governments, and that will not happen without advocacy. We will not get the advocacy we need unless we pay for it. But if we do, I truly believe, it will be $1 in, $5 to $1000 out. Our massive underinvestment in advocacy is a major, major hurdle. But if we build a movement (which is, in essence, #MEAction's mission), I think what AIDS activists accomplished is imminently achievable for us. I think $250 million per year is something within our reach. I think it will cost $10 million total (across our organizations) to get it. That sounds like a lot, but from my POV, it's really cheap relative to the outcome/reward!

I think this key point needs amplifying.

 

[Dolphin]

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.

 

[Dr Carrot]

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.

 

[Dolphin]

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.

 

[Andy]

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?

 

[Sasha]

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.

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.

 

[Dolphin]

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

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.

 

[Andy]

(In reply to Andy - it didn’t quote)
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.

 

[Esther12]

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.

 

[Gecko]

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.

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.