Category: Community

Food, Clothing and Shelter: Delivering the Basics to People with ME

Erica Verrillo is President of the American ME and CFS Society (AMMES)  When I was a child, my mother taught me the three basics of human survival: Food, clothing, and shelter. These, she said, are essential for our existence. At the time, I understood food to be essential, and possibly shelter, but I did not

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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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HOMELESS: How AMMES is Keeping People with ME in their Homes

Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness causes despair, but among people with ME/CFS the prospect of losing a home is terrifying. Seriously

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Proud Accessible Activism: The ME Debate Virtual Demonstration

Throughout history, activism and campaigning have been a driving force for positive change across the world. From civil rights to LGBTQ rights and more. However much of this has been inaccessible to large swathes of the disability community. For the ME community – the #MillionsMissing –  the nature of this illness and the stigma attached

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Stuart Murdoch’s open letter ahead of the ME Debate

Stuart Murdoch is the lead singer of Belle and Sebastian. He has had ME for 28 years and he has kindly shared with us this open letter to the UK government ahead of the ME debate on Thursday, 24th January. Dear UK Government, I am one of the 250, 000 people in the UK who

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Take Action Now! The UK debate on ME has been granted

Listen to this article on #MEAction’s Soundcloud here We are delighted that Carol Monaghan MP has managed to secure a debate in Parliament on Thursday afternoon, 24th January. This debate has been confirmed by the Backbench Business Committee and will take place in the Main Chamber. Carol Monaghan has been pushing for a Main Chamber

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How to Represent ME at the Women’s March

#MEAction Colorado is organizing a small cohort to join the Women’s March in Denver this Saturday, Jan. 19th. (See details.) We plan to walk the shorter, ADA-friendly route with empty wheelchairs displaying signs that say, “Too ill to be here,” listing names of Colorado people who cannot participate due to ME, and carrying #MillionsMissing banners

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Tell NICE your experience of CBT/GET. Take the survey now!

The National Institute of Health and Care Excellence (NICE) is rewriting the UK ME guidelines. As part of this process, the Forward-ME Group, of which #MEAction UK is a member, has prepared a questionnaire to provide additional evidence on cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to NICE. The new guideline is expected

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Apply for Stanford Medicine X Conference as ePatient or Presenter – deadline Jan. 31st

Stanford University hosts an annual academic conference, Medicine X, every September to bring together community stakeholders, innovators and leaders in health care to empower collaborative change. This year’s Medicine X | Change conference will be held at Stanford University in Palo Alto, California on Sept. 20 – 22, 2019. Stanford describes the conference as, “less

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