Washington can lead the way on medicine's most neglected disease

Twelve years ago, I got sick — and no one believed me. Doctor after doctor dismissed my symptoms, writing them off as everything from chronic sinus infections to perimenopause. Even as a neurologist, I couldn't get anyone to listen. It took far too long to find the truth: a 7-centimeter tumor was growing in my brain.

I have never forgotten what it felt like to be dismissed by the very people who were supposed to help me — so now I listen to the patients everyone else has stopped listening to. That's what brings people from across the country to my office, many carrying the same disease and the same exhaustion of not being believed: myalgic encephalomyelitis, or ME/CFS.
The CDC estimates that there are around 85,000 ME/CFS patients living in Washington, yet there has been almost nothing done for them, until now.

The National Institutes of Health approved a clear plan for how to help these patients in 2024: The ME/CFS Research Roadmap. Now, Congress is writing the appropriations bills that would fund it. All it takes is $50 million to get started.
With Washington's leadership on the Senate Appropriations Committee, our state plays a critical role in whether these people get their lives back.

ME/CFS is a chronic, multi-system neuroimmune disease. Its hallmark is post-exertional malaise — a severe worsening of symptoms after even minimal physical or cognitive effort — accompanied by autonomic dysfunction, cognitive impairment, chronic pain, fatigue, and immune dysregulation.

There is no FDA-approved treatment and no diagnostic test. Standard labs and imaging come back normal. For decades, these patients have been written off just like I was, told the problem is anxiety. Stress. Something in their heads.
By the time these people reach me, most have already seen upward of twenty doctors. They arrive expecting to be dismissed, but I refuse to let that happen.

In spending thousands of hours with more than one hundred people living with ME/CFS, I noticed something no one could explain away: these people who had been brushed aside by the medical system were all describing the same disease. They had the same crashes. The same triggers. The same collapse of careers, families, and social lives.

These were strangers scattered across the country. They couldn't all be imagining the same illness.

They are not a mystery to me anymore, but they remain one to the government agencies that fund medical research.
An additional devastating component to ME/CFS is that it completely debilitates some people's lives without shortening them. People living with the disease can remain bedbound for decades.

But I don't see this as a tragedy. It's an opportunity. If we find effective treatments, the people who suffer from this disease today can still be helped.

One thing I've come to learn is that their defining symptom is not "fatigue." What these patients experience is an energy mismatch: the body's demand for energy outstrips its supply, and the supply cannot catch up.

My most severely affected patients cannot type for thirty seconds without triggering a crash that sets them back for days. Anyone who has not lived it cannot fathom it — and that understanding gap is precisely why the disease has been underfunded.

The research community is ready. I work alongside groups across the country investigating the causes of this disease, and I can tell you what holds them back. It is not a lack of ideas.
Teams are pursuing genuinely novel science. What stops them is money. I know researchers with promising findings who cannot complete their studies because the funds ran out mid-stream. That is the quiet scandal of ME/CFS research: discoveries stall not because the science fails, but because the funding does.

The NIH Roadmap lays out a path forward. The scientific community helped build it. What the Roadmap lacks is an appropriation to match its ambition. Fifty million dollars is a lifeline for millions of Americans, but in the context of the funding bill, it's simply a rounding error.

The science is ready. The researchers are willing. The patients have waited long enough. It's time to fund the roadmap.

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Dr. Ilene Ruhoy is a board-certified neurologist trained in environmental toxicology and integrative medicine who has special expertise in chronic and complex illnesses. She has worked with around 100 people living with ME/CFS over her career and has given talks to spread more awareness on the disease. She lives in Seattle, Washington.

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