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

[Mary]

SEE THIS POST AND THIS POST BELOW FOR THE VIDEO AND MORE INFO ON HOW TO SHARE ON TWITTER AND FACEBOOK WITH 2 CLICKS!

https://act.meaction.net/page/14050/action/1?ea.tracking.id=web

The petition includes requests to:

1. Provide set-aside funding for ME to accelerate research
2. Organize meeting of ME experts to reach consensus on patient selection methods and criteria.
3. Fund the identification and validation of biomarkers.
4. Fund a clinical trials network and treatment trials.
5. Address disease stigma and lack of clinicians impeding research.

 

[Wolfcub]

I signed just now @Mary
Yes it has NOT been enough, so far !
If the action outline mentioned on that petition is followed through there is much better hope for so many people stricken with this disease.
I hope the petition is successful !

 

[pamojja]

done

 

[overtheedge]

Good stuff Mary

 

[Gemini]

The petition includes requests to:

1. Provide set-aside funding for ME to accelerate research
2. Organize meeting of ME experts to reach consensus on patient selection methods and criteria.
3. Fund the identification and validation of biomarkers.
4. Fund a clinical trials network and treatment trials.
5. Address disease stigma and lack of clinicians impeding research.

Done.

Thanks for posting, @Mary.

 

[PatJ]

Signed.

Residents from any country can sign. #MEAction encourages the sharing of the petition with friends and family to get more support.

 

[Loomcgoo]

Done. thanks for this

 

[Gemini]

https://act.meaction.net/page/14050/action/1?ea.tracking.id=web

Number of signatures so far: 1193

 

[Mary]

Number of signatures so far: 1193

 

[Gemini]

Number of signatures so far: 1193

As of today signatures have risen to: 3,075

 

[ChloeC]

Bumping this as the number of signatures has stalled out in the low 3,000s. Make sure to sign ASAP if you haven't yet. The campaign coordinators think we'll need at least 10,000 for Koroshetz & the NIH to take our message seriously, so we have work to do!

Please share this petition with all the ME folks you know and in all the ME/chronic illness forums or groups you participate in. Please also share with family, friends (even former ones), and acquaintances (eg neighbors) outside the ME community! Ask them to share with their own networks as well, so we can get the petition (which also helps educate people about our situation) in front of as many people as possible.

Note that this petition is just the beginning of a long-term #MEAction campaign telling Koroshetz his plan is #NotEnough4ME and demanding the NIH interventions we deserve. You can read more about the campaign and how to get involved here: [links to come] Stay tuned for more action alerts in the coming weeks as we amp up the pressure on the NIH to agree to our demands!

 

[overtheedge]

Yeah, you know, i wouldn't have seen this thread if i hadn't recently changed the bookmark i click for phoenixrising to go to https://forums.phoenixrising.me/whats-new/ instead of https://forums.phoenixrising.me/forums/general-me-cfs-discussion.80/
I always wanted to add my number to any ME petitions but there weren't any sitewide alerts that reached me in general. Wouldn't surprise me if there are many others on this site who are sequestered in one area or another. I wonder if there is a way to configure the ME forums out there to boost the numbers on petitions

 

[ChloeC]

Yeah totally, it would be super useful to have a way to alert all members sometimes.

Do you know if it's possible for a member to sign up to get alerts anytime a new thread is made within a specific sub-forum, eg the advocacy one? That would be helpful... though we'd still have to reach everyone to encourage them to sign up for the sub-forum alerts!

This doesn't solve the problem, but for #MEAction petitions and actions specifically, the best way to get notified is to sign up for their email list here: https://www.meaction.net/ or to follow them on social media (follow @meactnet on Twitter and Instagram, follow this page on Facebook: https://www.facebook.com/MEActNet/). In the coming weeks and months of this NIH campaign, #MEAction will probably be putting out online actions to participate in on a roughly weekly basis, so it's a good time to be on the makling list! You can always unsubscribe later if it gets to be too much down the line.

 

[ChloeC]

Just thought I'd add-- if you have a Twitter or Facebook account, you can share the #NotEnough4ME NIH petition with just 2 clicks!

Near the bottom of the petition page, you'll find the Twitter and Facebook logos under the heading "Please share this petition with others" (see image below). Click on a logo to launch a ready-to-go post right in your account. You can edit the text if you like, or just click on the submission button to post as-is. Bonus points if you tag close contacts to make sure they see your post... and feel pressured to sign!

Screenshots of the ready-to-go posts below.

https://act.meaction.net/page/13656/petition/1

 

[Mary]

@ChloeC - thanks for all the info above!

Do you know if it's possible for a member to sign up to get alerts anytime a new thread is made within a specific sub-forum, eg the advocacy one? That would be helpful... though we'd still have to reach everyone to encourage them to sign up for the sub-forum alerts!

@overtheedge - you probably want to know this too: to get alerts when a new thread or message is made in a specific subforum, go to the main page of the subforum (e.g., https://forums.phoenixrising.me/forums/action-alerts-and-advocacy.54/). On the upper right-hand side of the page under "Post Thread" you'll see a link which says "Watch" - click on that and you can select to receive alerts when there's a new thread or a new message, and to receive notification by alerts or email.

Wouldn't surprise me if there are many others on this site who are sequestered in one area or another. I wonder if there is a way to configure the ME forums out there to boost the numbers on petitions

This is a very good suggestion! I don't know if there's a way to do this, but I'll look into it

 

[ChloeC]

Ah wonderful, that sounds super useful! Thank you @Mary! Thanks also for starting this thread

 

[ChloeC]

#MEAction released an awesome video today! It's perfect for sharing with folks outside the ME community, to build broad understanding and support for the #NotEnough4ME campaign and bring in some more signatures. Please watch, like, and share share share!


The NIH has turned its back on ME since
the eighties.
View this email in your browser

​

Dear -----,

Don’t let us be stuck in the '80’s!

Join #MEAction and tell the National Institutes of Health leadership that their “plan” for myalgic encephalomyelitis (ME) is not enough.

This plan is not funded enough, not outcomes-focused enough, and not urgent enough for a disease that has been neglected, stigmatized, and misdirected for over 30 years!

​

We cannot wait several more decades to start the work. The NIH must allocate resources NOW to accelerate research!

Now, is the time for the NIH to hear from YOU! Sign our international petition calling on the NIH to take action:

SIGN THE PETITION​

#MEAction has sent a letter to NIH Institute Director, Dr. Walter Koroshetz, calling on him to incorporate these five actions into his plan:

1) Provide set-aside funding for ME to accelerate research
2) Organize meeting of ME experts to reach consensus on patient selection methods and criteria
3) Fund the identification and validation of biomarkers
4) Fund a clinical trials network and treatment trials
5) Address disease stigma and lack of clinicians spending

Watch and share the video, and sign the petition. It’s going to take all of us rallying together to demand real, substantive change NOW.

SHARE THE VIDEO​

Read more about our #NotEnough4ME campaign.

In solidarity,

Laurie Jones
#MEAction
Managing Director

 

[Mary]

@ChloeC - this is great! I watched the video. I'm going to change the title of this thread to MEAction #NotEnough4ME Campaign - Koroshetz petition (sign!) & "Stuck in the 80's" video (watch & share!) (if this will all fit in the title

If you have better wording for the title, just let me know!

 

[ChloeC]

Thanks @Mary, the new title is perfect!

Re: sharing:

YouTube has a Share button that lets you send the video by email or messaging (eg WhatsApp) and post it directly to Facebook or Twitter, with just one additional click.

You can also spread the word by liking and sharing or retweeting/reposting #MEAction's own social media posts of the video-- they're linked below. Help them gain steam and go viral!

Facebook:
https://m.facebook.com/story.php?story_fbid=2484562325159492&id=1408335399448862

Instagram: https://www.instagram.com/tv/B4NUrzxgIN1/?igshid=1swh5jf12e41d

Twitter:

https://twitter.com/i/web/status/1189211478936735746

Thank you to everyone who has been signing and sharing-- we've now made it past 4,000 signatures! Keep it up the good work

 

[overtheedge]

@ChloeC Yeah I did sign up for meaction alerts but haven't gotten anything from them in the months since, resubmitted that request for alerts after signing the petition so hoping that will work out

@Mary Thank you
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.

From what I've heard the ME community is mostly online due to our disability so the numbers are probably here in the internet somewhere, whether or not the amount on this site could be influential or not you and the other mods and admins would be much better able to judge than I Mary. I would have suggested asking people whether they want to be a part of some alert system when they sign up but maybe it isn't the members that would make any kind of difference but the visitors to the site as i have heard sites often have more readers and other kind of visitors than they do member traffic. Wonder if there is somewhere at the top or bottom of the forum screen that the latest thing to sign could be linked to.

Though I'm pretty far away from things being that i can't get on much, I don't know if any of these ideas will be worthwhile but figured trying to increase the influence of ME/CFS patients was worth wondering about

Hope it helps