Category: Advocacy

We are building a movement at #MEAction UK. Join us!

#MillionsMissing – organised by #MEAction – has been such a successful campaign this year, and we thank everyone in the ME community for your part in this. At #MEAction UK we are building a movement. We’ve grown #MillionsMissing, a campaign for health equality for ME, from a single protest in London in May 2016 to

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South Carolina Raises Awareness about ME

My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for more than 9 years. Despite the historical, tourism and quality-of-life allure of this beautiful state, we discovered a paucity of medical care available to patients with ME/CFS, minimal medical

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What A Day…

What A Day… ME Advocacy Day 2019 was a huge success! #MEAction and Solve ME/CFS Initiative were very excited to partner for this year’s Advocacy Day and we were blown away by everyone’s response and involvement. With over 200+ people registered to attend in person and even more of you taking action from home, we

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CBT and GET survey results published by Forward-ME Group

In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data on the impact these therapies have had on people who have been offered or received

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GET and CBT are not safe for ME – summary of survey results

Listen to the recording:  #MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME

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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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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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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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