Featured news Archives

£3.2million granted for largest ME/CFS DNA study ever

June 23, 2020 1 Comment

Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.

#MEAction Supports Health Care at Home Act

June 18, 2020 No Comments

#MEAction is excited to announce our support of the Health Care at Home Act, which increases telemedicine opportunities during the pandemic. Telemedicine enables people with myalgic encephalomyelitis (ME) to access their healthcare professionals without leaving home, which can mean the difference between being able to access a doctor or not for some people with ME.

Scientists Call for More European Research on ME

June 10, 2020 1 Comment

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

#MEAction Puts ME into the Spotlight

June 9, 2020 2 Comments

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 for People with ME to Get Involved in Racial Justice

June 5, 2020 No Comments

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

The UK ME/CFS Biobank: a rich resource of samples and data

June 3, 2020 No Comments

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,

Washington Post Editorial Says Some COVID-19 Patients Will Develop ME

June 2, 2020 No Comments

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

Black Lives Matter.

June 2, 2020 1 Comment

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.

When POC Can’t Get a Diagnosis, Go Unseen

May 21, 2020 1 Comment

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

#MillionsMissing 2020 was powerful (full report)!

May 19, 2020 No Comments

*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

Category: Featured news