Beth Mazur

Beth Mazur (1976-2023) was an American patient advocate and co-founder of #MEAction with Jennifer Brea, and HealClick, a website for patients with chronic illnesses. Beth Mazur died suddenly on December 22nd, 2023, at the age of 47, while visiting close friend and patient advocate Julie Rehmeyer. She had previously taken a leave of absence due to her health.

Education

Mazur attended MIT, earning a Bachelor’s in Computer Science and Electrical Engineering.

Career

Mazur was a technologist for non-profits and start-ups. Prior to developing ME and POTS, she worked as a developer and technical product manager for organizations including HealClick, Grameen Foundation, and Jaspersoft. She served on San Francisco’s Voting Systems Task Force, advising the city on its voting system.

ME/CFS

Beth Mazur developed M.E. in the late 2000s, when she was in her early 30s. She tried hundred of different treatments to try to cure her illness or to improve her symptoms and quality of life, and was described as having an unsurpassed level of scientific understanding of ME by fellow patient advocate Julie Rehmeyer. Beth had profound cognitive dysfunction and neurocognitive symptoms, and she found all speech, listening, and thinking extremely difficult. Beth Mazur lived with ME for fifteen years, and developed secondary depression and anxiety, which she also had treatment for, in addition to both ME and POTS. Beth passed away by suicide in December 2023, and was reported to have planned her passing long before that, but without sharing her plans.

Writing

• With Brian Vastag. "Researchers warn covid-19 could cause debilitating long-term illness in some patients". The Washington Post. May 30, 2020.

Online presence

• LinkedIn (PSA the LinkedIn will be removed since they do NOT keep nonliving profiles in their database, so please take a screenshot if Beth's online presence meant a lot to you!)

News articles and blogs

• Dec 22, 2023, Sad News From Our Community — Content Warning

- #MEAction

Obituary

• Beth Mazur - Memorial Service and Obituary - Brian Vashtag
• Dec 24, 2023, Trial By Error: Julie Rehmeyer on the Heartbreaking Loss of Beth Mazur - by Julie Rehmeyer and David Tuller

Resources

• NEED HELP? Support and Crisis Resources - MEAction

chronic illness any long-term illness, regardless of the severity. Chronic illnesses are typically incurable, requiring long-term management.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

postural orthostatic tachycardia syndrome (POTS) - A form of orthostatic intolerance where the cardinal symptom is excessive tachycardia due to changing position (e.g. from lying down to sitting up).