Announcing #MEAction groups
We are thrilled to formally announce a new feature we’ve had running in the background these last few months: #MEAction groups.
As many of you know, Beth and I have been deeply inspired by the legacy of ACT UP and its grassroots ethos. Decisions were made democratically but decisively in large group meetings, but the work was done mainly within a number of committees and affinity groups. These allowed members to take action in small groups – groups dedicated to a particular issue or need, or simply groups of friends.
Groups are how we envision #MEAction’s activists will meet one another, collaborate and work. They can be organized around location or theme. They become particularly powerful as collaboration tools when combined with events, petitions, Google Hangouts and Google Docs. (See also our tips for getting the most out of groups.)
We’ve also started a few social support groups (and hope you’ll come up with ideas for more!)
Launch a new group
Anyone can start a group. Simply choose the right group collection (issue and working groups, local or social) and click “start a group.”
Anyone can apply to become an organizer of an existing group. We have many new #MEAction-created groups and are looking for folks to take the lead and co-organize them.
Join an existing group
Here are a few groups we are especially excited about:
MEpedia – We are joining together to start an ambitious wiki to aggregate all the scientific, historic and political knowledge of this community. We are in the early days of laying out our editorial policies and building a foundation of articles.
#MEAction Europe – activists from France, Norway, Belgium, Germany and elsewhere are joining together to learn about the state of advocacy, research, and healthcare in different countries, and learn from one another (see all European groups)
#MEAction translators – are busy translating content from #MEAction and around the web into over a half dozen languages.
#MEAction Authors Group – for anyone interested in writing articles for #MEAction. We are looking for contributors from all around the world, writing in any language. Whether you can contribute on a regular basis or every once in awhile come and help us brainstorm blogposts and more in-depth case studies.
Media Working Group – We’re building a database of patient, medical and scientific expert commentators to help improve the quality of ME journalism around the world. Along with fact sheets and strategies to build a more balanced narrative.
#MEAction Canada – activists are brainstorming a letter and a petition for Canadian research funding.
Groups for healthy allies: Health Ally Group, Caretaker Action Group, Caretaker Support Group
Groups for US activism: US Strategic Planning Group and groups for the NIH, CDC, FDA, Congress.
[button_color url=”http://meaction.net/groups” content=”See all groups” target=””]
1 thought on “Join an #MEAction Group”
The reporting on and trumpeted results of the PACE trial are harmful and then move to have the “scientific” results debunked is fantastic.
Let’s not however throw the baby out with the bath water.
Some types of CBT – such as adjustment (to being seriously ill) and commitment (to making the most of the life you have) can help people with ME- cope.
Physiologically based (heart rate, heart rate variability, Vo2 test) exercise can help – see Stacy Stevens, Mark VanNess. Even the PACE trials description of patient “controlled” GET appeared ok.
The real problem is the interpretation of the results.
The claims of a cure.
The way CBT has been taken to stand for patients just having a false illness belief.
The way GET is understood to be an imposed exercise regime rather than an overall exertion management tool that may require patients to cut back, to do less activity, to make room for targeted exercises that will increase their functionality.
I get scared when I see the sign post saying NO GET, NO CBT.
I think we need to move the goal post away from these health managment tools that correctly implemented have a place in the ME self manamgment arsenal.
I think we need to clamour for treatments, and cures that cure us.
PACE demonstrated the limitations of CBT/GET – now let’s demand what we need.
Let’s not waste energy debating CBT/GET and deconditioning.
What we want is biomedical research, treatments and cures.
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