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

Image features newspappers folder up and stacked together vertically. There is a red box in the center that has the words, Why We Keep Telling the Story of ME to the Press in white and the #MEAction logo in the righhand corner of the box.

Why We Keep Telling the Story of ME to the Press

Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the

Read More »
the words " #MillionsMissing 2023: Scotland calls for healthcare education" appear in white on a red-muted background with the #MEAction Scotland UK logo in the bottom right hand corner.

#MillionsMissing 2023: Scotland calls for healthcare education

This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called for education and training for healthcare professionals to improve support for people with ME across Scotland. Ahead of ME Awareness week, we put out a call, alongside #MEAction UK, to ask members of the ME community

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top