#MEAction: Next steps: a letter to our community [from Jen Brea]

[Andy]

Hi everyone,

I just wanted to take a moment to comment on some of the confusion and concern of these last few weeks and offer some steps forward to help clarify how #MEAction works, what our core value are, and how we plan to make concrete our policy positions going forward.

We are not a traditional organization. Yes, there are organizations that have come before us and have been touchstones: participatory, distributed organizations like ACT UP, TED’s TEDx program or 350.org. But I am pretty sure #MEAction is unusual, an organization with the ambition to organize and serve, lead and follow a global movement of disabled people fighting to change our lives. We wanted to give patients around the world a context and framework in which to bring together all of our skills and experience, learn from one another, and help each other to realize our ambitions, whether for self-expression, peer support, awareness or advocacy. Our organization from its inception was intended to be an ecosystem that anyone could contribute to and utilize; one which allowed for maximum experimentation and iteration; where diverse ideas could flourish, take wing, and if successful, be copied and propagate. Participatory, community organizations are inherently messy, organic and imperfect, but also have the potential to have power and impact far beyond the sum of their parts.

https://www.meaction.net/2018/06/28/next-steps-a-letter-to-our-community/

 

[Alvin]

@JenB Your amazing.

I wish i could volunteer because i think i have something to contribute but thats not in the cards since i'm not doing so good these days
But with MEAction fighting for our future we are in good hands

 

[adambeyoncelowe]

It's a very helpful and honest letter. I hope it's read widely.

 

[Sasha]

Very good! Big thanks to @JenB for this (and especially for doing it while recovering the op).

I hadn't been aware of the IOM/SEID issue but, like the issue that came up with the wording of the UK briefing for MPs recently, it sounds as though it would be good for a bunch of people outside of the writing team (where 'groupthink' can take over) to be available to each independently read important new outputs and flag up any problems or ambiguities.

It's my impression that S4ME has a lot of UK patients, which would make it a good source for such a bunch of fast-track reviewers for UK-targeted material (and I think they could be fast, because it's usually easier to read than to write). A private forum could be set up for volunteers.

I don't know how many US members we've got, and whether there's the same potential for a group to assess US stuff.

Just an idea, but it can be important to have fresh eyes on documents at the end, as long as control remains with the writers.