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Category Archives: Advocacy

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 ...

Here’s What to Expect for ME Advocacy Day 2019

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Last day to register to attend Advocacy Day in Washington, DC on April 2-3rd! If you are wondering if attending Advocacy Day is for you, here is a document that breakdowns what those two days will look like. The document provides steps to take when planning for the trip and a ...

Advocate for ME on the Hill! Only One Week left to Register!

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You still have one week left to register for Advocacy Day 2019 in Washington, DC! You may be trying to decide whether or not you should come (and, please, put your health first) or send a loved one in your place, so we thought we would ask some people who have attended about ...

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) ...

Get involved: support science and advocacy this April

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April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME.  Concurrently, there will be a Congressional lobbying push hosted ...

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 ...

HUGE Event for ME in Boston

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Follow Rivka Solomon on Twitter: @RivkaTweets "Now that's the kind of event that gives hope. Real hope. Tangible, actionable hope. It's infuriating that the standard of "care" for #Millions Missing is mostly built on disinformation. This kind of event is how we change this mad injustice." - @RichardVallee on Twitter Every now and ...

Historic Parliamentary Debate Shaped by People with ME

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Listen to the article:  On Thursday 24th January 2019 a historic debate took place. Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions on behalf of their constituents. Together they unanimously passed this motion: “That ...

Register Now for ME/CFS Advocacy Week 2019!

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Listen to the article:  #MEAction and Solve ME/CFS Initiative (SMCI) are excited to announce a joint partnership for ME/CFS Advocacy Week & DC Lobby Day 2019!  The week of meetings with representatives, call-in actions and online events will take place from Monday, April 1 to Sunday, April 7th. The keystone event, Lobby Day 2019, ...