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Category Archives: Community

Plan for #MillionsMissing Now! Read the Toolkit!

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#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 ...

Announcing #MillionsMissing 2019! Join us!

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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) ...

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

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Listen to the article:   Erica Verrillo is President of the American ME and CFS Society (AMMES) | Photo by ALACHUA COUNTY /Flickr CC BY 2.0 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 ...

Proud Accessible Activism: The ME Debate Virtual Demonstration

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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 ...

Stuart Murdoch’s open letter ahead of the ME Debate

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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 ...

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

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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 ...

How to Represent ME at the Women’s March

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#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 ...

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

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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 ...

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

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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 ...

A Year in Review: Celebrating the 2018 Achievements of Our Community

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2018 has been a big year at #MEAction!  Thank you to all of you who have put forth immense efforts to improve the lives of people with myalgic encephalomyelitis (ME). #MEAction has grown over the past year in leaps and bounds, and we cannot wait to do more. We will not end ...