It has been been an exciting time for the myalgic encephalomyelitis (ME) community these past few weeks. We are in awe of the sacrifices and hard work people with ME and their allies have made to make their voices heard. #MEAction and the Solve ME/CFS Initiative organized the largest Advocacy Day ever with more than 200
#MEAction Medical Travel Scholarship Because of the generous donation from a private family foundation, #MEAction has been able to provide travel scholarships to medical practitioners and medical students to attend the National Institutes of Health conference on ME this Thursday and Friday. The goal of the meeting is to showcase high-quality studies to
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
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
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
***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
One of our goals for #MillionsMissing is to tell our story of myalgic encephalomyelitis (ME) to the world. Since 2016, we have been collecting stories of people missing from their lives due to ME, which we display at demonstrations around the world, and circulate on social media. We are collecting short personal stories again this year
The National Institutes of Health conference on myalgic encephalomyelitis (ME) research is fast approaching on April 4th-5th in Bethesda, MD, and #MEAction will be hosting a table to represent our community at the conference. We are looking for volunteers attending the conference who can help staff the table, which involves answering questions about #MEAction and
The Workwell Foundation issued the press release below about its meta-analysis of 20 years of studies that shows “overwhelming evidence” of chronotropic incompetence in people with ME/CFS, which contributes to activity intolerance in people with myalgic encephalomyelitis (ME). A normal response to exercise is an increase in heart rate. Failure of the heart to keep pace with an
Last week was a difficult time for the ME community as we watched a few journalists deride and dismiss the medical concerns of an entire patient population: us, our friends, our families. Reuters is responsible for gaslighting millions of suffering people around the world. #MEAction has emailed a version of this letter to every
