Category: #MillionsMissing

The Unique Challenge of Aging with M.E.

Aging can be a challenging time for anyone but people with the debilitating, chronic disease of myalgic encephalomyelitis (ME) often find that their symptoms are dismissed as a “normal” part of aging, and so are left without the diagnosis, care and support that they need from their medical providers and community to manage and treat a

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Q&A with #MillionsMissing UK Organisers

On Thursday 18th April, #MEAction UK held a conference call with organisers of #MillionsMissing event past and present from across the UK. There are already events planned for 2019 in all 12 UK regions, with over 25 events in the UK Claire from Southampton, Janet from Edinburgh, Carolyn from Sheffield and Denise from London were

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How to Protest Virtually with the #MillionsMissing

Join the protest virtually during #MillionsMissing –  May 5th to May 12th Use the hashtag: #MillionsMissing Start sharing photos of the demonstrations happening around the world the week of #MillionsMissing from May 5th to 12th! Share your story. Retweet away! Remember to share the fundraiser. Keep sharing stories by others. Prepare for the finale on

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#MillionsMissing: Tell Your Story to the World  

One of our goals for #MillionsMissing is to tell our story of myalgic encephalomyelitis (ME) to the world. Since 2016, we have been collecting stories of people missing from their lives due to ME, which we display at demonstrations around the world, and circulate on social media. We are collecting short personal stories again this year

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Plan for #MillionsMissing Now! Read the Toolkit!

#MillionsMissing 2019 is fast approaching, and now is the time to get started! Demonstrations calling for health equality for Myalgic Encephalomyelitis (ME) will take place around the globe throughout the week of May 5th – 12th, 2019. We are only two months away! How will you join the movement? Check out our toolkit and determine

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Announcing #MillionsMissing 2019! Join us!

Listen to the article:   We are thrilled to announce #MillionsMissing 2019! This May, we will take to the streets – or demonstrate from our beds – to show the world we are here, we are the #MillionsMissing, we will continue to fight for our demands for people with myalgic encephalomyelitis (ME). We’ve made important

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Amy Carlson – an Ally to the ME Community

Listen to the article:   Allies are critical to the success of any movement and even more so in the case of people with myalgic encephalomyelitis (ME). So many people with ME are bedridden or housebound and unable to participate in some advocacy and activist actions. While we at #MEAction work hard to make advocacy

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NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!

The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this past May. We are working

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Volunteer of the Month: a Scottish Trio

This month we want to honor the work of three women with #MEAction Scotland – Emma Shorter, Kim Gurav and Janet Sylvester –  who have done an incredible job advocating for people with myalgic encephalomyelitis. The partnership began last January when Kim and Janet wanted to organise a screening of Unrest, which – long story short!

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Thousands sign letter to be delivered to Francis Collins

On May 24th, 2018, we delivered this 580-page letter to Francis Collins, with over 7,000 signatures, photos, and personal comments. We are demanding urgent action to increase funding for research, find a diagnostic test, support clinical trials, and develop treatments, and a meeting to discuss all this with NIH Director Francis Collins. We also sent this video

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