Carrie Niederman held a veterinary practice for much of her career. After being diagnosed with ME/CFS, she made the decision to close her practice and move to Maine. She currently lives in Portland and teaches a class on diagnostic uncertainty at the University of New England.
As a veterinarian, I spent three decades treating patients who couldn’t tell me where it hurt. Diagnosis depended on observation, evidence and a willingness to live with uncertainty until the picture became clear.
Then in 2009, the tables turned. I became sick with a disease that doctors still don’t understand, that has no cure, no validated diagnostic test and no FDA-approved treatment.
When I first developed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — a disease marked by symptoms that worsen after even minimal physical, mental or emotional exertion — it was severe. I spent much of my time in bed, unable to cook, clean or even care for myself.
It is also the story of thousands of Mainers — and as many as 9 million Americans — living with a disease that medicine still lacks the tools to diagnose and treat. Physicians cannot rely on tests or evidence that do not yet exist, and decades of inadequate federal research funding have left both patients and clinicians without the answers they need.
That could finally begin to change.
In 2024, the National Institutes of Health created the first-ever ME/CFS Research Roadmap — a blueprint developed by scientists, clinicians and patients that identifies the research needed to develop biomarkers, validated diagnostic tests and effective treatments. Congress recognized the roadmap and requested an implementation plan. What is still missing is the funding to carry it out.
That is why patients, advocates and families across Maine are urging Congress to invest in research for an illness that remains as debilitating as it is overlooked.
According to CDC projections, more than 15,000 Maine adults are living with ME/CFS. Many spend months or years confined to bed, draining their savings to see specialist after specialist and relying on family members for care. For the most severely affected, it can mean living in literal darkness. I know those frustrations all too well.
I spent years navigating the medical system without answers. No test came back with a name because no validated diagnostic test exists. Without objective findings to guide diagnosis, some physicians dismissed my symptoms. When I became emotional describing how profoundly my life had changed, that emotion was sometimes interpreted as evidence that the illness was psychological rather than the understandable response to living with a devastating disease.
Others struggled with the uncertainty itself. When there are no biomarkers, validated diagnostic tests or evidence-based treatment guidelines, it is difficult to know how to proceed. Patients with ME/CFS often find themselves caught between what they are experiencing and what medicine can currently explain.
Eventually I stopped searching for answers. The appointments were costing me more energy than I had to give.
As a veterinarian, I understand how much clinicians depend on evidence to guide diagnosis and treatment. Today, my work centers on diagnostic uncertainty because uncertainty is an inevitable part of medicine. The challenge is not uncertainty itself; it is learning to respond with curiosity and humility rather than premature certainty. That is exactly why research matters. It gives physicians the evidence they need to care for patients with confidence.
After years of searching for answers, I made the heartbreaking decision to close my veterinary practice. I loved my work. Closing my practice meant losing not only my career but also the identity I had spent a lifetime building.
The financial consequences of ME/CFS extend far beyond my own experience. Nationally, patients spend thousands of dollars each year out of pocket while often losing nearly half of their income. Many exhaust their savings, accumulate debt and rely on unpaid family members for care.
ME/CFS has already cost Maine families enough: careers, savings, independence and years spent waiting for answers.
But now, for the first time, there is a path forward. The NIH Research Roadmap lays out the research needed to develop the biomarkers, diagnostic tests and treatments physicians have long lacked. Medicine will always involve uncertainty. Our responsibility is to invest in reducing it.
Congress now has the opportunity to do exactly that. By funding the NIH Research Roadmap, our elected leaders can help give thousands of Mainers — and millions of Americans — the better answers and better care they have waited far too long to receive.