I spent my time in Augusta fighting for Maine people — for our workers, our families, our rural communities, and our veterans. And I have learned one thing above all else: the issues that matter most to Mainers are rarely the ones that make national headlines.
ME/CFS — myalgic encephalomyelitis/chronic fatigue syndrome — is one of them.
This is a serious, debilitating neuroimmune, neuroinflammatory disease that an estimated 15,000 Maine adults are living with right now. There is no FDA-approved treatment. There is no validated diagnostic test. And for decades, the federal government has done almost nothing to change that.
That is not a medical failure. It is a policy failure — and it is one that Congress has the power to correct in this year’s federal spending bill. The moment to act is now, and Maine’s congressional delegation should be leading the charge.
Let me tell you what this disease actually does to people.
ME/CFS is not just fatigue. It is a condition where even minor physical or mental exertion can cause a severe, prolonged crash lasting days, weeks, or months. One in four patients is housebound or bedbound at some point in their illness. Clinicians describe the level of disability as comparable to end-stage renal disease.
And yet there is nothing to offer these patients. No prescription. No roadmap — until recently.
The economic picture is just as stark.
In Maine, where families already stretch every dollar and rural communities carry more than their share of healthcare burdens, ME/CFS hits especially hard. 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 percent of what it was before the disease struck. More than one in five patients leaves the workforce permanently. More than 60 percent rely on unpaid family members for care.
These are Maine workers, Maine veterans, Maine parents who got sick, fell through every crack in the system, and were left to figure it out alone.
There is also a Long COVID dimension that every Mainer should understand. Research suggests that as many as 45 percent of Long COVID patients meet the diagnostic criteria for ME/CFS. Maine was not spared by COVID. Thousands of our neighbors are still sick years later.
Here is the good news: for the first time in the history of this disease, a good plan exists.
In 2024, the National Institutes of Health (NIH) approved the ME/CFS Research Roadmap — a rigorous, expert-built blueprint developed by scientists, clinicians, and patients. It lays out exactly what needs to happen: biomarker discovery, a validated diagnostic test, and clinical trials for the most promising treatments. Congress recognized the Roadmap last year and directed NIH to develop an implementation plan.
The only thing missing is the money. Fifty million dollars in the FY27 federal appropriations bill would activate a plan that is already written, already approved, and already waiting.
Finding a cure for ME/CFS is a bipartisan undertaking. But as a legislator and a lifelong Republican, I want to be direct about why Republicans should be championing this cause especially.
Fifty million dollars against an estimated $362 billion in annual economic losses from ME/CFS is not spending. It is an investment — the kind of targeted, accountable, results-oriented federal action that conservatives have always believed in. The proposed appropriations language includes explicit reporting requirements. NIH must document how funds are spent and whether Roadmap goals are being met.
This is also a legacy issue. Two Democratic administrations had the opportunity to fund ME/CFS research and did not. The current Congress and the current administration have aligned on this issue in ways that previous administrations never did. Maine’s delegation has the seniority, the committee influence, and the moral standing to deliver what others could not.
Maine families have waited long enough.
Fifteen thousand of our neighbors are living with a disease that Washington has never taken seriously. A plan exists. A door is open. The question is whether our leaders in Washington will walk through it.
I believe they will. Maine has always punched above its weight when it matters. This matters.
- MaryAnne Kinney, former State Representative
Opinion: Washington Has Promised to Fight ME/CFS for Decades. This Congress Finally Has a Plan — and the Chance to Deliver.
