August 8 – Severe ME Day Twitter Storm

August 8th, Twitter Storm for #SevereME Day

I want to support the folks at 25megroup.org with a twitter storm on august 8, Severe ME Day. One of the ideas floated around facebook was that we could put pictures of ourselves (or others) with our faces covered up (as to suggest the idea of a “cover up”).

Use the hashtag #SevereME

Other hashtag suggestions include #25group #forgotten25 #livingdead (feel free to add your own).

Need Images?

*Credit goes to whoever performed a similar action last year but didn’t quite get the word out.

Facebook
Twitter
WhatsApp
Email

6 thoughts on “August 8 – Severe ME Day Twitter Storm”

  1. Been doing twitter storms since 2008 for causes. Best way is everyone starts at same time around the world and high volume for several hours to get the hashtag trending which brings awareness and can make the news. Usually a new hashtag is needed. Unable participle this year. Maybe a few tweets idk.

  2. Has to be the same hashtag to get it trending, just saw some of the suggestions to use various ones on the site.

    1. The day started by 25% me group had tick theme last year.
      This years theme is on home care
      see article on pr
      http://phoenixrising.me/archives/27607
      Written by Helen brownlie who is the advocacy worker for severe and very severe pwme
      whilst research is important pwme are living with gross misunderstanding and neglect
      research is vital but we lose many to suicide because of lack of home care.
      its a poignant article.
      We need to clone Helen
      but alternative would be to also include the donation to their donations page
      http://www.25megroup.org/fundraising.html
      http:www.25megroup.org/fundraising_donate.html
      I encourage all who can afford to to reach out and donate.
      Its also remembrance day so the memorial list can also be used to hit home that ME can and does kill.

  3. The hash tags used are
    #severeME
    #SevereMEday
    #verysevereME
    #healthcare #health #Neurology #immunology would be especially useful to reach outside our community to those interested working in Neurology May get am education!
    Stories of home care or lack of it could be very personal or just in general in whatever country you live in
    certainly May throw up the issue of lack of support.
    Maybe draw attention to the issue
    Tweets say be collected for researchers or home care specialists
    this situation in UK
    http://phoenixrising.me/archives/27607

  4. Ps the additional hash tags obviously to the #severeMEday #severeME
    Tweet newspapers tv shows
    politicians those with influence
    even the president prime minister in your country
    heath ministers would be ideal

  5. thanks you guys for the awesome and quite successful twitter storm. I’m sorry I didn’t see your comments til today as was dealing with the usual round of BS; this could have probably been better organized. I’m really pleased to have had the opportunity to connect with so many awesome committed activists tho & thanks so much for picking up my quite considerable slack!!

Comments are closed.

Latest News

blue rectangle image with the NIH logo in the top left hand corner. the words: NIH MECFS Research Roadmap Update Public comments open until March 8th appear in the middle of the image. the meaction logo is in the bottom right hand corner.

NIH ME/CFS Research Roadmap Update–Public Comment Period Now Open

The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th.  #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous

Read More »
a rectangle image with multiple small hearts in the corners. The words, Valentine's Day Interview with Jamison Hill and Book Promotion. The cover of the book is next to the words. The #MEAction logo at the bottom.

Valentine’s Day Interview with Jamison Hill & Book Promotion

We are excited to bring you a special Valentine’s Day promotion of Jamison Hill’s most recent book, Something’s Wrong with Micah.  #MEAction had the pleasure of having a Twitter chat with Jamison when his memoir When Force Meets Fate came out. We now get to bring this Q&A about his newest book to you. Jamison

Read More »
on a red sparkly rectangle image. The words "#MEAction's Volunteer Program Revamped!" are written in an arcade/game font. Sign-Up Today! The #MEAction logo in the bottom right corner

#MEAction’s Volunteer Program Revamped

Exciting news: #MEAction revamped our volunteer program for the new year! We are honored to have wonderful volunteers including people with ME, Long Covid, and other associated conditions as well as our caregivers, allies, and wider communities. Volunteering with #MEAction can and does make all the difference. We invite you to join our program! Our

Read More »
Scroll to Top