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.

From Challenge to Change

🛏️ What If Your Biggest Impact Happens From Bed?

🌧️ A Journey of Challenges and Advocacy

🔄 We Can’t Change the Past, But We Can Change the Future

🧠 Tackling Misconceptions and Living Within Limits

📊 It’s Not Rare, 90% Aren’t Diagnosed

📣 Pushing for Change with ME/CFS Advocacy

🤝 Joining the Movement

🚀 Pushing Forward

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

Run of Show

00:00 Podcast Welcome

00:25 Meet Elizabeth Ansell

02:19 Getting Sick and Misdiagnosed

04:02 What ME/CFS Means

05:12 Life in Bedbound Severity

07:37 Why Fatigue Misleads

09:13 Crashes and Energy Limits

10:42 Stigma and Invisible Illness

12:16 Advocacy From Her Bed

15:23 Millions Missing Community

18:33 Grief and New Purpose

21:09 May 12th Get Involved

23:11 Advice for New Patients

24:34 Support Not Just Fatigue

25:43 Pushing Forward Moment

26:47 Final Thanks and Outro

Connect with Elizabeth Ansell

Elizabeth’s Website | Elizabeth’s TikTok

Follow Up with Alycia

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