MEAction #NotEnough4ME Campaign - Koroshetz petition (sign!) & "Stuck in the 80's" video (watch & share!)

[Mary]

I wonder if there is anywhere you could stick the option to sign up for an alert in a place where a member would be likely to see it at least once, though, i suppose that might take someone on the site really knowing which petitions, prewritten letters to government people, etc. are important to post. Though there is always the option to put a link to MEaction's alert signup section somewhere.

@overtheedge - I'm not quite sure what you're asking here. Every subforum has an option for members to "watch" them - get alerts. Are you talking about educating members so that they know they can watch subforums or threads to get alerts? or something else?

 

[Mary]

Wonder if there is somewhere at the top or bottom of the forum screen that the latest thing to sign could be linked to.

I don't know if we can do this but I'll look into it. I get where you're coming from - you want to make petitions etc. more visible and so that all members are aware of them and they don't get buried somewhere. We do get a lot of guest traffic too, non-members who might be willing to sign.

 

[Mary]

bump

 

[overtheedge]

@overtheedge - I'm not quite sure what you're asking here. Every subforum has an option for members to "watch" them - get alerts. Are you talking about educating members so that they know they can watch subforums or threads to get alerts? or something else?

My bad, that idea was to have a check box somewhere in member's account settings that when checked would notify them with the kind of thing that pops up when there is a new post in watched thread or someone likes their post, that red blip, but it would appear without them having to watch the thread. It would only notify about threads on important petitions and other such action things but the downside is it would take someone who knows what petition and action things are really important and which aren't to decide which notifications to send out. So in essence it would be phoenixrising having it's own equivalent of MEAction alerts

 

[Gemini]

As of today signatures have risen to: 3,075

Ten days later and we're up to 5,190

 

[ChloeC]

Hey everyone,

If you haven't yet heard, #MEAction is having a "closed-door" community call at 3p ET / 12p PT TODAY (Tues 11/12) about how to participate in the next step of the #NotEnough4ME campaign. (Sorry for not posting this here sooner!) For it to be effective, we need as many #pwME and allies as possible to join in.

Who's able to help with this? I truly believe that the escalating collective action campaign we're planning is the best way to make massive change happen quickly. So please join our effort if you can!

Anyone who sees this message in time can sign up via the form below. (No worries if the timing doesn't work-- we'll make a recording of the meeting available to people who pre-registered.) If you see this message after the meeting or would prefer written instructions, just email "I'm in" to ben@meaction.net. Thanks to those of you who have already signed up-- looking forward to bringing the fight to the NIH together!

[https://docs.google.com/forms/d/e/1...jj5SaySw-ZzYSNHi-ZcBjE7S5LPudNtPvrWf1BA8vQck)

 

[ChloeC]

Oops, just saw a new thread had already been started for this new campaign action, so I posted a version of this message there. Apologies for the double post!

https://forums.phoenixrising.me/threads/new-action-being-planned-by-meaction.78299/

 

[Foxglove]

(No worries if the timing doesn't work-- we'll make a recording of the meeting available to people who pre-registered.)

Can people post-register? I've been feeling awful and wasn't sure I'd make it, so I didn't register. I don't really have any input so maybe the video isn't for me anyway.

I just want to learn more about the campaign and help if I can (I can't help with much lately).

 

[AdventurerSarah]

Can people post-register? I've been feeling awful and wasn't sure I'd make it, so I didn't register. I don't really have any input so maybe the video isn't for me anyway.

I just want to learn more about the campaign and help if I can (I can't help with much lately).

Yes, they said in the meeting that you can still email notenough4me@meaction.net to get the information after the meeting.

 

[ChloeC]

Can people post-register?

The registration form is still up and a couple other people have just signed up, so sure, go ahead! I'll check about whether we can share the video, but we'll definitely send you written instructions for how to participate in the action if you can, and we're happy to share more about the campaign at any point.

Would love to have you join the cause, even if you don't have input right now, or won't have much capacity. Every little bit of help will make a difference!

 

[ChloeC]

I've confirmed that people can indeed continue to sign up using the registration form (linked again below) Even though the meeting already happened, if you'd like to participate in our first action or learn more about the campaign, just fill out the form and we'll send you the video of the call and written instructions on how to participate!

https://docs.google.com/forms/d/e/1...vjj5SaySw-ZzYSNHi-ZcBjE7S5LPudNtPvrWf1BA8vQck

 

[frozenborderline]

Bump

 

[frozenborderline]

Posted about this campaign on Reddit but not a ton of engagements

https://www.reddit.com/r/cfs/comments/e0dm3h

 

[frozenborderline]

I had a thought advocacy wise. It's sort of unlikely koroshetz will actually see these videos imo, which is too bad because they are very powerful. What would be interesting is if we could get someone outside of the community, with a big social media presence , to boost them.

There are some disability advocates that have big platforms on Twitter, such as @mattbc , but don't speak about ME/CFS that often.

There are some people in medtwitter that seem to lean toward social justice type views that i think may retweet some of these videos if tagged. @medicalaxiomw, Zackary Berger md, maybe @mdaware. Also some chronic pain advocates like dan Laird

And then wondering if we could get a progressive politician/account, like a DSA account or AOC , to retweet. Bernie probably too big. Starting at yhe point where an account is too small to be totally inaccessible and have full mentions, but big enough to get others outside our Network to notice, might be good.

I don't think this mention of politicians breaks forum rules since I'm jusy speaking of them as a means to an end.

Oh and also the belle and Sebastian guy--@nee_massey.

I'm sure many advocates have already though about this stuff but in case it hasn't been said...

 

[frozenborderline]

One person asking all these people to retweet might not make an impact. But a few people flooding their mentions (politely) may

 

[frozenborderline]

So it seems that Walter koroshetz (the target of the recent MEAction campaign and the person in charge of ME/CFS funding ) has been bombarded with tweets but will not respond,.

Outside of twitter, if you search Walter koroshetz you will not come up with anything about his failures in helping fund research on ME/CFS.

 

[frozenborderline]

I wanted to bring attention to this great example of direct action by pwME protesting at NIH