Category: United States

Advocacy Week Local Actions

***UPDATE: THIS ACTION IS NOW OVER***   ADVOCACY WEEK LOCAL ACTIONS As many of you know, Advocacy day is April 3rd in DC. Activists will be traveling from around the United States to have meetings with their elected officials to demand recognition and action for people with ME. No matter if you are in DC

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Ask Your Senators to Increase Funding for ME Research and Education

  ***UPDATE: THIS ACTION IS NOW OVER*** Senator Markey is currently asking for support from his fellow Senators for TWO requests that can increase funding for ME! These requests would include: 1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee) 2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee) What our

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Increased Funding for ME Research and Education

  ***UPDATE: THIS ACTION IS NOW OVER*** Congressmembers Zoe Lofgren and Anna Eshoo, are currently asking for support from their fellow House Members for TWO requests that can increase funding for ME! These requests would include: 1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee) 2) Add ME to the Peer-Reviewed Medical Research

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Carol Head of SMCI to step down

After five years of advocacy leadership, Carol Head, the President of Solve ME/CFS (SMCI), will be stepping down from her position for health reasons. Head, a graduate of Wellesley and Stanford’s School of Business, contracted ME after a viral infection and was deeply affected for years.  However, she describes herself as “95% recovered” and added

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Here’s What to Expect for ME Advocacy Day 2019

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 more detailed schedule of

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

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 their perspective on Advocacy

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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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Get involved: support science and advocacy this April

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 by #MEAction and SMCI

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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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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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