Notjustfatigue

05/14/2026

Listen to our founder on the Pushing Forward With Alycia podcast!

She describes launching her organization after learning the disease’s history and stigma, misconceptions tied to the name, the need for education and funding, and policy wins.

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

Listen wherever you stream podcasts.

International keynote speaker Alycia Anderson shares insights on leadership, disability inclusion, accessibility, and empowering people to show up fully and authentically.

05/12/2026

05/12/2026

It’s May 12, International ME/CFS Awareness Day, a day to recognize, honor, and discuss everyone with ME/CFS, a complex neuroimmune, neuro inflammatory disease whose hallmark symptom is post exertional malaise. Post exertional malaise is the worsening of symptoms after any physical, mental, or emotional effort.

ME/CFS affects at least 3.3 million Americans alone and has one of the worst quality of lives of any disease quantified. 25% of people with ME/CFS are completely home bound or bedbound.

At , we’re building awareness and advocating every day. We’re particularly proud of our work in the Congressional appropriations process over the past two years, and we’re absolutely hopeful more is to come.

This is .

05/09/2026

Wearing is one of the ways our mission travels. As a 501(c)(3) nonprofit dedicated to ME/CFS awareness, every item in our store is designed to spark curiosity, start conversations, and direct people to the truth about this disease.

Our merch is now available on NotJustFatigue.org. Most pieces can be delivered most places worldwide. All pieces are modeled by an ME/CFS caregiver.

05/01/2026

If you’re interested in sharing your illness story to local press, please contact us at [email protected] or DM us! We’re still looking for people from different states and districts.

04/13/2026

Part 3/3

“It’s just a system that I can’t wrap my head around the impact that that has on so many, so many people.”

One illness. So many people holding their breath.

This is why awareness isn’t enough. We need research, resources, and real support systems for every person in that room.

04/12/2026

By popular demand, we’re finally dropping a lot of merchandise next month for everyone to be able to purchase so that we can spread the word that this is . We’ve gotten so many dms, emails, and comments about this and we are listening! Can’t wait and get excited!

04/09/2026

Part 2/3: Families of ME/CFS.

“You’re only doing as well as your least well child.”

ME/CFS is a disease that takes over a home. The noise has to stop. The light has to go. The world has to get very, very small for everyone in it. And families do all of it. Because what else do you do?

This is .

04/03/2026

We’re starting a video series on the families of people with ME/CFS. This vicious and life altering disease deeply impacts the person living with it, but also everyone in its wake with its potentially extreme symptomology. We’ll hear from different members of the family of people with ME/CFS, and how it’s affects them as well.

We deeply believe in a better future for people with ME/CFS, one that includes FDA approved treatments, research funding equity, clinician education, and true understanding from the public.

The absence of these things is what allows the endless and extreme suffering, the lack of quality research and advances, the myriad of misdiagnoses, and the lack of belief and empathy from the public.

This is what we’re fighting for. This is .

03/10/2026

Have you ever been medically gaslit by a medical professional? Do you have ME/CFS? If so, you’re not alone