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HOPE for FATIGUE

6 Ways to Virtually Participate in the Millions Missing Day of Protest for ME/CFS

Millions Missing is a global day of action for equality for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). ME/CFS patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief.

If you would like to participate but are unable to attend one of the protests (Washington, DC, London, Belfast, Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco, Seattle, Melbourne, Ottawa (virtual)), MEACTION offers these 6 ways to participate virtually:

1) Put your shoes on your door step or at the end of your driveway

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On May 25th, take a pair of shoes (or several) and put them on your doorstep, lawn, or driveway. Take a photo and post it on social media #MillionsMissing. Anyone can participate, whether you are a patient or an ally expressing solidarity.

You might pair the shoes with a sign that expresses what the empty shoes mean to you. Some examples: “I cannot walk to the end of my driveway” or “My brother should be here.” Imagine if thousands of homes around the world put out their shoes in solidarity with the protestors in the streets.

2) Protest on social media

On May 25th, post selfies on social media (Twitter, Facebook, Instagram, etc) – in your bed, home, wheelchair, at work, wherever you live – to help us show online the millions who are missing from the protest.  Use the hashtag: #MillionsMissing so that we can aggregate all the photos. In addition, you might use #MEAction #mecfs #pwme

You might also consider typing these slogans or holding your own protest sign (whatever paper is handy!) with a slogan in your photo. Here are a few examples to get started:

  • Missing my life for 22 years because of ME / Missing in action since 1991 because of ME
  • Missing equity in research / Missing adequate medical care
  • Missing a doctor who believes me
  • Missing college / Missing my family / Missing running in the park
  • Missing but no longer silent

3) Add the #MillionsMissing filter to your social media profile photo

During the month of May change your profile picture with the #MillionsMissing Profile Filter Smartphone App or the #MissingMillions Twibbon.

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4) Be a virtual protest organizer

Promote the hashtag and shoe installation on your social media accounts. Email patients, friends, families, allies who are in the vicinity of the satellite protests.

5) In the US? Send an informational packet to your Congressional representatives

Offer this Forgotten Plague Congressional Pack to send to your congressmen/women and state representatives before the protest.

6) Sign the petition demanding NIH adequately fund ME/CFS.

Mary Gelpi has added her voice to the call to make funding for ME research commensurate with disease burden. As of this posting, she has 30,000 signatures. With your help, we can ensure that HHS knows that thousands of people across the U.S. and beyond understand that it’s time for better funding for ME/CFS. Sign today, and promote on social media. Ask friends and family to sign as well. Just a few minutes of your time could make a huge difference!

1 comment

  • John Rousseau
    John Rousseau Thursday, 26 May 2016 12:46 Comment Link

    Wendy is a close friend, who I saw a great deal before moving from California back east in 2006. Shortly thereafter Wendy began having symptoms of chronic fatigue, which have progressed significantly. Her life and that of her family have been drastically changed. From an outgoing, vibrant young woman, she has become a shut-in with limited mobility. Everyone wants Wendy to get well!!!

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