Maine patients should not have to wait 12 years for an ME/CFS diagnosis — like I did | Opinion

Kristi Woods is a registered nurse and ME/CFS patient advocate living in Augusta. She developed a continuing medical education curriculum on ME/CFS and infection-associated chronic conditions through the Daniel Hanley Center for Health Leadership and Education.

I am a registered nurse. I know how to read a chart, navigate a system and advocate for a patient.

Despite this, it took me 12 years to get a diagnosis for my own disease.

I started showing symptoms in college in 2010. It began with exhaustion and cognitive dysfunction. I was told I had depression. I continued through nursing school and built a career in psychiatric nursing. The whole time, something was wrong and no one could name it.

Finally, in 2022, I was diagnosed with ME/CFS — myalgic encephalomyelitis/chronic fatigue syndrome. It took 12 years after my symptoms began and almost 50 different healthcare providers to reach my diagnosis.

I am a healthcare professional, living one mile from the Maine State House, with every resource and every credential this system is supposed to respond to. And I still couldn’t get answers. For most Mainers with this disease, the situation is worse — and the stakes of Washington’s continued inaction are far higher.

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As a nurse, I know the difference between a diagnosis and a plan for one. ME/CFS finally has both. The National Institutes of Health (NIH) has a research roadmap ready to go, and a single line item — $50 million in the FY27 spending bill — would activate it.

ME/CFS is a serious, multisystem neuroimmune, neuroinflammatory disease, most commonly triggered by infection, that affects an estimated 15,000 Maine adults. One in four patients is housebound or bedbound at some point. There is no FDA-approved treatment and no validated diagnostic test. Physicians are undertrained on it — and in a state as rural as Maine, where a specialist may be nearly impossible to find, that gap has devastating consequences

I knew those consequences all too well. Early on, I developed stomach problems. I couldn’t keep food down and lost 25 pounds. I was shrugged off on multiple occasions and told I had mental health disorders. Eventually, my gallbladder was removed. But still, nothing worked. I tried everything — diets, medications — but my symptoms stumped every specialist.

Four months after my diagnosis, I got COVID. My symptoms worsened significantly. I tried to keep working but frequently had to lie down because of severe nausea and dizziness. Because I was diagnosed two weeks before I became eligible for long-term disability, it counted as a preexisting condition, and I was denied coverage

I faced 18 months without income.

My partner worked three jobs. My parents retired and moved back to Maine to help me. I spent much of that time in bed. I had a personal support specialist to help me shower and run errands. I lost my ability to drive. In a state with almost no public transportation, that means losing your independence entirely — the ability to get to appointments, to run a simple errand, to feel like yourself.

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I filed for Social Security disability. I was denied once. My sister helped me gather medical binders, resulting in six 3-inch binders of documentation for submission to support my case. I still needed a lawyer, a functional capacity exam and a neuropsychiatric evaluation before I was approved.

This is what Maine families are living through. And it is not rare.

Nationally, ME/CFS patients spend an average of $4,439 every year out of pocket on care that often produces no answers. Income drops to an average of 57% of what it was before the disease.

In Maine, where rural families already stretch every dollar and public services are thin, those numbers translate into real devastation for real people.

The good news is that for the first time, a federal plan exists.

The NIH ME/CFS Research Roadmap lays out exactly what needs to happen: biomarker discovery, a validated diagnostic test and clinical trials for the most promising treatments. Congress recognized it last year and directed NIH to develop an implementation plan.

All Congress has to do is fund it.

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