Notjustfatigue

10/19/2026

Our founder Elizabeth was honored to welcome Senator Richard Blumenthal into her home today to share her story of living with severe ME/CFS and talk about .

When illness limits our ability to go out into the world, having someone come to us and listen means so much. Thank you, Senator, for taking the time to hear her experience.

People with ME/CFS deserve to be seen, heard, and believed, and for that understanding to lead to action.

10/02/2026

Jana Gezon spent nearly 30 years caring for patients as a nurse. When COVID hit, she returned to help her Seattle community. Now, she is living with Long COVID and ME/CFS.

In her op-ed in The Star, Jana describes losing her career, struggling to access disability benefits, and paying thousands out of pocket for care, all while living with a devastating disease.

She’s calling on Congress to provide $50 million to begin implementing the NIH ME/CFS Research Roadmap. Patients need research that leads to answers and treatments. They need a chance to get their lives back.

“I spent my career looking after other people … I would give almost anything to be back at that work.”

Thank you, Jana, for sharing your story and advocating for so many others.

09/30/2026

explored Chicago, IL and set out to discover what’s in a name? We wanted to know if anyone knew what ME/CFS is? Do they know how serious it can be? Do they know the terms Myalgic Encephalomyelitis and Chronic Fatigue Syndrome? Let’s find out.

09/13/2026

Email us at [email protected] if you’re a person with ME/CFS or a caregiver to one in Mississippi, West Virginia, or North Dakota! Thank you so much!

08/27/2026

Hi! Contact us if you are a person with ME/CFS or a caregiver to someone with ME/CFS in these states:

North Dakota
West Virginia
Alabama
Arkansas
Mississippi
New Hampshire
Rhode Island

Thanks!

08/24/2026

More than 90% of people with ME/CFS are believed to remain undiagnosed.

In this powerful new op-ed, registered nurse Kristi Woods shares that it took her 12 years and nearly 50 healthcare providers to finally receive an ME/CFS diagnosis.

Her story reflects a much larger problem: too many people with ME/CFS spend years searching for answers while research and clinical understanding continue to lag behind.

The NIH ME/CFS Research Roadmap gives us a path forward. Now we need Congress to fund it.

is calling for $50 million for ME/CFS research in FY27.

Read Kristi’s story:
https://www.centralmaine.com/2026/08/24/maine-patients-should-not-have-to-wait-12-years-for-an-me-cfs-diagnosis-like-i-did-opinion/

A roadmap is now in place to prevent patients from living a prolonged nightmare with myalgic encephalomyelitis/chronic fatigue syndrome. All Congress needs to do is fund it.

08/19/2026

Over the past several months, has been working relentlessly toward one main goal: dedicated federal funding to begin implementing the NIH ME/CFS Research Roadmap. Now, that call is being echoed across the country.

From Maine to Wisconsin, West Virginia and Mississippi, people with ME/CFS, physicians and political leaders are making the case for action, each from a different perspective.

The NIH approved the ME/CFS Research Roadmap in 2024, creating an expert-developed blueprint for research into biomarkers, diagnostics, disease mechanisms and treatments. Last year, Congress directed NIH to develop an implementation plan. This year, we are advocating for the critical next step: $50 million to begin putting that plan into action.

In Maine, former State Representative MaryAnne Kinney framed the decades of neglect plainly:

“That is not a medical failure. It is a policy failure.”

Person with ME/CFS and sociologist Dr. Amy Blackstone wrote about the human consequences:

“I know what it costs to lose a career you spent your whole life building.”

And veterinarian and person with ME/CFS Caroline "Carrie" Niederman explained why research matters to medicine itself:

“Research matters. It gives physicians the evidence they need to care for patients with confidence.”

In West Virginia, physician and State Senator Dr. Tom Takubo emphasized both the science and the history of neglect:

“This is not a psychosomatic condition. It is a biological one — and it has been systematically underfunded for decades.”

Wisconsin emergency physician Dr. Christopher Ford described what he sees on the front lines:

“I see what happens when medicine does not have answers.”

And former U.S. Representative Gregg Harper of Mississippi captured what makes this moment different:

“For the first time in history, the federal government has an approved, expert-built research roadmap for ME/CFS.”

Different states. Different experiences. Different political perspectives. One growing call for action.

For decades, people with ME/CFS have been told that answers are somewhere in the future. Today, something is different: we are no longer asking the federal government to figure out where to begin. There is a Roadmap.

Scientists, clinicians and people with ME/CFS built it. NIH approved it. Congress recognized it.

Now we have to fund it.

08/11/2026

Are you a caregiver to someone with ME/CFS? Are you interested in possibly telling your story? We’re especially looking for people in the greater New York City, greater Chicago, Maine, and West Virginia areas. Please get in touch with us at [email protected] . Thanks!! 😊

08/09/2026

Dr. Lucinda Bateman talks about the importance of researching and caring for the severely ill.

08/08/2026

A bed is not a place of rest when you cannot leave it.

For people with severe ME, it can become the boundary of an entire life. A home can become a prison. A bedroom can become a world reduced to four walls.

Outside, seasons change. Birthdays pass. Families gather. The world keeps moving.

Inside, many remain confined to dark, quiet rooms, unable to tolerate light, sound, touch, movement, or even the voices of the people they love. Some go months or years without feeling sunlight on their skin, leaving their homes, or being part of the lives continuing beyond their doors.

The bars are invisible.
The isolation and confinement are not.
The suffering is real.

On August 8, Severe ME Day, we honor those living behind these invisible walls, and think of those whose lives have been hidden from the world for far too long. And they deserve more than survival.

They deserve research. Care. Dignity. Connection. And the chance to be free.