On Friday, the ME advocacy group #MEAction shared that their co-founder, Beth Mazur, passed away after living with myalgic encephalomyelitis (ME) for 15 years.
“She was a selfless beacon of hope and light for so many in our community and she demonstrated an unwavering commitment to the cause,” #MEAction wrote on their website.
“Beth was a friend, a daughter, sister, companion, and her love and selflessness is impossible to describe. Our gratitude and love for Beth will live on and her legacy will live on,” #MEAction wrote.” Before developing ME and POTS, Mazur worked as a developer for numerous companies, using her bachelor’s degree in computer science and electrical engineering from MIT. She was also an advocate for transparency in voting, serving as a member of the Voting Systems Tracking Force for the city of San Francisco.
Mazur co-founded #MEAction in 2014 alongside Jenn Brea, forming an influential organization that has educated people worldwide about ME and related infection-associated chronic conditions (IACCs). She was an impactful leader, though many who knew her well have said how she often stayed behind the scenes of her work. Some have lauded Mazur for her “quiet brilliance.”
“I don’t think most people know just how much she did for this community in a large scale, institutional way,” Jenn Brea wrote. Brea started the hashtag #BethMazur so others could share their memories and grief on social media.
“While she didn’t like the spotlight, don’t let that fool you. She was a star,” Lisa McCorkell, cofounder of the Patient-Led Research Collaborative, wrote in a post. “She laid the foundation for so much research, advocacy, & support in the ME community, which then cascaded into the #LongCovid community.”
In May 2020, Mazur co-wrote an important op-ed in the Washington Post alongside her partner Brian Vastag, “Could Covid-19 cause long-term chronic fatigue and illness in some patients?”
“In the fall of 2009, one of us, Beth, was hit by an illness she suspects was H1N1 flu, which was circulating then. In 2012, the other, Brian, developed a sudden fever, which his doctors said was also likely of viral origin,” they wrote, “Neither of us recovered, and we’re both disabled to this day.” Their words and stories helped sound the alarm as millions began to develop Long Covid.
“I’m hugely grateful for everything she contributed, but that isn’t why I love her,” her friend, Julie Rehmeyer wrote. “I love her just as much for the moments she lay in bed, unable to function, as those times she was brilliantly leading the fight.”
Mazur died by suicide. “Let her memory be a blessing that fuels us all to support one another and find a cure,” Rehmeyer wrote.
#MEAction’s statement says it will honor Mazur in the new year and keep the community updated as plans are finalized. The organization also provided a link to crisis resources.
The 988 Suicide and Crisis Lifeline is a hotline for individuals in crisis or for those looking to help someone else. To speak with a trained listener, call 988. Visit 988lifeline.org for crisis chat services or for more information.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
Leave a Reply