A powerful conversation about post-exertional malaise, medical misunderstanding, undiagnosed millions, and the urgent need for research funding.

Alycia Anderson welcomes Elizabeth Ansell, founder of #NotJustFatigue, a nonprofit advancing awareness, research, and policy for ME/CFS, and discusses how Elizabeth has driven advocacy and federal policy work while bedbound. Elizabeth shares becoming ill at 26 while working in New York City, years of misdiagnoses, and being dismissed as psychosomatic. She explains teaching herself medicine before being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, defined by post-exertional malaise and many possible symptoms. She describes launching her organization after learning the disease’s history and stigma. They cover misconceptions tied to the “chronic fatigue” name, the need for education and funding, policy wins including ME/CFS language in the Long COVID Recovery Initiative, and an NIH reporting requirement tied to a 2024 research roadmap. She then explains ways to get involved for May 12 ME/CFS Day using “millions missing,” sharing stories, and donating.

Quotes from Elizabeth

 It’s very sad that we can’t change the past with this disease. But right now in the present, we can work for a better future.

~ Elizabeth Ansell

I think just keep going, stay determined. For things to change, now is the time that I think it’s happening.

~ Elizabeth Ansell

From Challenge to Change

Run of Show

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