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.

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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!!

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