#MEAction - UK Organiser

Honestly, we were so busy doing the work that it never occurred to us that folks organizing and participating in #MillionMissing – if they were fundraising – wouldn't use that as an opportunity to support the organization that was organizing #MillionMissing. But I'm learning that we need to always and explicitly make the ask.

We will persist! And thank you for the feedback that it's not for lack of support or recognition of all that MEAction is doing. I do think there is so much fundraising happening now and the community as such limited funds, it does make it hard. That said, as you probably know, the past campaigns for Unrest have raised far larger amounts of money in less time. Some of this has been my ability to get people outside of the ME community who do have more financial resources (who are working, etc.) to support the work. But I also think it's because it's much easier to ask for ONE thing (support this film) than to support at team of people doing many different things all over the world. I think MEAction is much more important than Unrest and will ultimately have FAR more impact. But most people still don't know or understand all that we do or have done. Because honestly, it's far too many things! But of course, that doesn't mean we're going to stop doing them It just makes fundraising harder.

I do think, though, it's more than not having the funds. People also aren't sharing the campaigns and don't have the same passion for MEAction's fundraiser they had for David's fundraiser or the Time for Unrest fundraiser. Everyone who doesn't have the financial resources to donate could share on social media and they aren't. So that's our failure in some sense, although I am not quite sure what to do about it. If everyone on our mailing list / who engages with MEAction donated US$1.50, we'd meet our goal. That never happens of course, but that means if 10% of those people donated US$15, we'd meet our goal. That is imminently possible, but only with wide and enthusiastic social sharing and momentum.

 

I've just realised that the title of the thread doesn't make it clear that there's a fundraising drive going on for this (it's always hard to title threads!).

@RuthT, would you like to change the title to something like, '£55k fundraising drive for organiser of UK #MEAction' or something?

Edit: It seems as though the donation site has changed so instead I'm starting a 'how to donate' thread that focuses on how/why to do it, so probably best to leave your thread title alone and leave this thread as it grew organically from your original post/intention!

 

https://twitter.com/user/status/1005502394338144256


@JenB, would it be worth specifying what happens to the donations if the full amount isn't raised? The target (as you know) is £55k and you've said somewhere that you'll start looking for someone to fill the post when donations reach the halfway mark. But it might help encourage donations if people know that their money will still be put to some good UK use if a lesser amount is raised.

 

That would be like asking me what happens if Unrest doesn't get into Sundance There was never an alternative because there wasn't really another option. We'll raise the £55k for sure. The question is, does it take one month or 12? I suppose if we truly didn't raise the money, we'd just hire someone for less time.

 

The reason I'm asking is that the $100k fundraiser is going much faster than this one and I wonder if the comparison is raising in people's minds the question of whether this one is going to make it to the £55k. (I'll happily delete these posts if you like - I know the dangers of talking down a thing that's only just got going, but my intention was rather to point out an issue that might be putting the brakes on.)

 

I've started a thread specifically about donating to the UK fund, in which I've used some of your arguments to explain why it's needed, @JenB, and have explained the donation process (a lot of PWME struggle with sequential, multi-stage things like this, as you'll know , and there's been a bit of confusion about the link, which has moved).

Here's the thread: https://www.s4me.info/threads/donat...-for-a-uk-meaction-organiser.4521/#post-79554

 

I doubt that people are aware of the costs, because it's all happening behind the scenes and in private FB and Slack etc. groups that people who aren't part of it aren't aware of. I have no clue about the costs and my unthinking assumption has been that the costs of #MEA consisted of maintaining your website and maybe a salary for you, with volunteers picking up all the other work and each local group of volunteers picking up the costs of printing flyers, hiring rooms etc. outside of #MEAction.

It's not something I've given much thought to, and I suspect that most of us don't. I think we need it all spelling out because (a) it's invisible and (b) it's not clear what #MEA pays for or does centrally versus what the thousands of volunteers worldwide pick up themselves when they campaign under your umbrella.

I realise I might be looking a bit of an idiot in exposing my ignorance and thoughtlessness here but I think it's useful to do so!

 

Am I the only one concerned with #MEAction (who previously were very adamant in distinguishing themselves from Action for ME) now collaborating with AfME?

 

Are we sure that a representative has not already been selected? Someone seems to have been attending Forward ME meetings, or giving apologies for absence. There seems to be a sudden proliferation of paid employees in this field. It must be becoming fashionable.

EDIT I would not wish it to be thought that this comment applied in any way to DT.

 

On May 24, in this thread:

https://www.s4me.info/threads/m-e-highlighted-at-the-71st-world-health-assembly.4286/#post-74782

M.E. highlighted at the 71st World Health Assembly


I had asked the following:

How is policy formed within #MEAction?
On a global basis or on a country by country basis, and by whom?​

I also asked:

https://www.s4me.info/threads/m-e-highlighted-at-the-71st-world-health-assembly.4286/#post-74782

I think this is quite an important question that needs clarifying, especially as #MEAction is now a member of Forward-ME and has a rep attending Forward-ME meetings.

If a UK #MEAction rep signs off on a Forward-ME initiative or position, are they signing off in an individual capacity or on behalf of #MEAction UK?

If the latter, is that after consultation with the committee for #MEAction UK or in consultation with the global #MEAction Team?
And is there any prior consultation with the supporters of #MEAction UK?​

 

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.

It's incredibly stressful promising people the salaries they need for their food, clothing and shelter. It's the hardest part of running an organization. This is a major part of why I don't draw a salary from my activism. I absolutely deserve to (we all do) and it's a privilege I have that many do not that I do not need to in order to survive. I don't have kids (not by choice), live very modestly (in a 20 ft x 10 ft loft above our office), and have a partner who works. I'd much rather spend my time doing the work and raising money to pay for and support a larger staff for more impact than have to fundraise to pay myself!

The Time for Unrest campaign, which kicked off everything happening in Parliament this year had a staff of five + publicists, supported by sales of the film, contributions from people in the UK, and grants/donations from the US. It was enormously expensive but I think impactful! We're looking for one person to continue the UK advocacy and medical outreach work under the auspices of #MEAction. The money we are raising covers their salary, taxes, etc. and expenses for the year.

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.

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.

It's important to understand that #MEAction isn't a person or a unitary actor. It's dozens (and really, now, hundreds) of volunteers, all with different points of view and understandings of how to be most effective, trying to work together (virtually), and often under tight deadlines. As we've grown, I've moved farther and farther away from the nitty gritty of every action. This has led to some missteps the last two weeks that honestly, I would have prevented if I could have and might have been prevented if our UK team wasn't on their own, working also on #MillionsMissing, managing their energy and post-May crashes, etc.

Internally, we are trying to figure out how to institute the processes we need to ensure that there is proper oversight and process for everything we produce and put into the world, even as we retain the spirit of participation, volunteerism, amid the inherent chaos that is the dip in and out again, on and off again nature of our bodies. This would be so much more possible if we had more staff capacity! Process and communication are vital but take an incredible amount of time and capacity, both of which are always in short supply, especially with volunteers who have unpredictable schedules and health.

And yet, I am ultimately responsible for every thing that we do, even if I don't always know that we're doing it The buck really does stop with me. I think what I am going to ask (especially as I head into surgery Tuesday – I may be out of commission for a few weeks and I've already been really, really ill these last six weeks) is a little bit of forbearance. At the heart of everything is quite simply lack of capacity. But we are going to work over the next several weeks to clarify everything, improve our messaging, and I hope make some amendments to the Parliamentary briefing document. (I don't know what is possible but we are exploring that.)

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.

 

#MEAction is a global organization with a small number of local affiliates and a vast array of informal local groups all around the world (http://meaction.net/groups). Its website is: http://meaction.net. Yes it has a strong American accent but our LA team works and supports people in dozens of countries all around the world.

We'd absolutely love for the UK group to register as a charity and that is the long-run intention. However, that cannot happen until we hire our first staff person as they will largely also be responsible for managing that process. It will also never have a separate website. Its website will be http://meaction.net/uk just as the US website is http://meaction.net/us.

Zero infiltration, though. I'm not even sure how that would happen (?). It's all just really good people working hard to fight for their lives. And Ben (our director of community & campaigns) and myself are doing everything we can to support the UK group. (And the US group, and the Australian group, and the Canadians, and the hundreds of people who email us every week with ideas and requests.) But the status quo is not workable in the long run. We absolutely need to hire for this position.

 

Paid employees are so important! Every single scientist is a paid employee. You cannot achieve anything substantial or scalable without hiring people in full-time positions and paying for their livelihoods. We need to destigmatize / eradicate the perception that just because someone is getting paid for their efforts, they are suspect. And end the chauvinism that assumes people who are not patients and who are well-paid for deigning to research, treat, or care about us are saints and those who are ill are illegitimate. Why does that comment not apply to David Tuller? Who is it meant to apply to?

EVERY SINGLE PERSON WHO IS WORKING IN THIS FIELD WOULD BE MAKING MORE MONEY IF THEY CHOSE NOT TO WORK IN THIS FIELD. They would also have less stress because they wouldn't be constantly attacked. They'd have better work-life balance. And they would have more social esteem. And they would probably make more money over the course of their careers. So that person that is denigrated for getting paid is always taking a pay cut.

Without paying people for their work, Unrest would not exist, MEAction would not exist, the 300 articles about ME that came out in the last year would not exist, MillionsMissing would not exist, none of the research that has happened in the last few years would exist, either. There would be no parliamentary debate. We'd still be in 2013.

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!

 

Also, if folks have specific questions, please do email: info@meaction.net. It's very hard for us to reliably respond to comments and questions across multiple forums, Facebook groups, Facebook pages, Twitter accounts, etc. It also helps understand what people need to know and what information they want to have access to, as we continue to improve our website and lay out answers to all these questions. We used to have a FAQ. Sounds like it would be a good idea to dust if off and get it up and running again. @Dx Revision Watch I'll make sure to add these questions to that FAQ.

 

I want to emphasize how grateful I am for the questions and the candor. We have our work cut out for us to transition into the organization we are becoming making clear and transparent to those outside the organization. (And this is a conversation we could never have on Twitter! )

I now have a list of probably six or seven different documents, articles, and a survey that we need to create coming out of all of this. That's probably about 30-50 hours of work in total. So again, anyone reading this, please be patient with us. But all of this feedback is enormously helpful and will all feed into that process.