People with ME are an incredibly science-literate patient population, even if that isn’t by choice: it’s the gaps in research and clinical care that have made us experts by necessity. Many of us eagerly participate in studies and engage in science discussions online. We regularly present our clinicians with new information! We understand better than
As the U.S. Advocacy Manager for #MEAction, I have the great pleasure of connecting fully to my life’s purpose: to be part of igniting the fire for change in the world. While it took me a while to determine that purpose, this truth has always been a driving force in my life. From a young
I am delighted to be part of the series in which you are getting to know the #MEAction staff! My name is Espe and I am #MEAction’s UK Coordinator. I am so honoured to be a part of the staff at #MEAction. I came to #MEAction via Unrest, as I was working on the impact
It is an honor to volunteer and work for #MEAction. #MEAction came to me at a time in my illness when I was finally able to be online, do advocacy work, and find community. To understand why #MEAction’s mission and approach to activism is so important to me, we need to go back to my
Meet the #MEAction Staff! Over the next couple of weeks, the staff at #MEAction will be sharing their experiences and insights into what they do and what brings them to this work. I am so thankful for this opportunity for you all to get to know this amazing group of people. They are so ready
Over the past several years, many of us with and without ME have looked on in horror as Karina Hansen was forcibly removed from her home and institutionalized. This was in part due to Denmark’s decision to rename myalgic encephalomyelitis “bodily distress syndrome” and classify it as a psychological illness. The Hansens’ fight to regain
With the help of our community’s ingenuity, strength, and indomitable spirit, #MEAction has: Spearheaded a petition to release the PACE trial data, garnering over 12,000 signatures. This was presented in the recent FOI request to release PACE data as evidence of peaceful patient involvement Launched the worldwide protest #MillionsMissing in 12 locations to raise awareness
Last year was a pivotal point in the battle against ME/CFS. Game-changing reports from the Institute of Medicine and the National Institutes of Health’s Pathways to Prevention Workshop delivered long awaited public credibility for our disease. The federal ME/CFS landscape has shifted, and there is newfound openness and awareness among key governmental agencies. This positive change has heightened the battle as we fight for scientific understanding, fight for treatments and fight for a cure.