Editor’s Note: The below press release is from fellow ME advocates at the European ME Coalition (EMEC). The original EMEC press release can be found here. Check out #MEAction news archives for more about the origins of this campaign. Read about person with ME and advocate Evelien Van Den Brink’s journey to meet the EU
Since the coronavirus pandemic hit, #MEAction has pitched news stories and worked with major news outlets to sound the alarm that COVID-19 patients are at risk of developing myalgic encephalomyelitis (ME) and other chronic illnesses. In the past month, #MEAction has worked to tell this story in The Washington Post, The Atlantic and Bustle! As
Accessible Ways that People with ME can get Involved in Racial Justice #MEAction has always focused on empowering and supporting our community. We know that many people with ME are wanting to show support for racial justice and it is often difficult to know how to engage from home. Here are some accessible ways that
It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and the research of many others,
The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term, debilitating illnesses, like myalgic encephalomyelitis (ME), in some patients. The editorial was written by former Washington Post reporter, Brian Vastag, and #MEAction co-founder, Beth Mazur, both of whom have ME. Many people infected with COVID-19 are
George Floyd. Breonna Taylor. Ahmaud Arbery. Tony McDade. There is so much pain, suffering, grief, and anger across the United States and around the world. As healthcare activists and advocates, we have seen time and time again that Black individuals face discrimination not just in their doctors’ offices but in every aspect of their lives.
For decades, myalgic encephalomyelitis (ME) – also commonly called chronic fatigue syndrome – was erroneously portrayed as a white woman’s disease in the media. Black people were told they can’t get this disease, and went unseen and undiagnosed. Studies finally confirmed what the ME community already knew: the disease was targeting white, black and brown
*We added an update below. Videos like the “I got a virus” video from #MEAction UK and #MEAction Scotland were viewed over 90k times on multiple platforms. Better than originally reported! Dear Friends, You are amazing. You made #MillionsMissing impactful, powerful, and moving. This virtual year no doubt had it’s challenges, but it was beautiful
Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at least two weeks, revealing insights
Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have been reported world-wide. Governments are focused on treating patients acutely sick with COVID-19, the disease caused by the new virus SARS-CoV-2, and slowing the spread of the virus. However, a second crisis of long-term disability is
