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Amy Blackstone taught sociology at the University of Maine for 23 years. She authored the book “Childfree by Choice.”
On March 11, 2020, I traveled to give a talk at Iowa State University. It was the last public event on campus before everything shut down for the pandemic. A few days later, I woke up with a tickle in my throat and what I did not yet know was COVID-19. That was six years ago. I have not been the same since.
I spent the following years doing what I was trained to do: gathering evidence, following data, advocating for structural change. As a sociologist at the University of Maine, I studied how institutions fail people. I never expected to become a case study in my own research.
What I have — long COVID that progressed into a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS — is a disease the medical system does not understand, has no approved treatment for, and until recently had no serious federal plan to address.
Getting a diagnosis took years. Getting doctors in Bangor to take my symptoms seriously took longer. One told me my symptoms were from a concussion. Another implied that the problem was in my head.
I was a professor who spent two decades studying gender and power. And still, I could not get the medical system to believe me. That experience is the story of an estimated 15,000 Maine adults living with ME/CFS. It’s a story Congress has the power to change this year.
There is an expert-built plan. The National Institutes of Health ME/CFS Research Roadmap, approved in 2024, lays out exactly what needs to happen: biomarker discovery, a validated diagnostic test, and clinical trials for treatments. Congress recognized it last year and directed NIH to produce an implementation plan.
The only remaining question is whether this year’s federal spending bill will include the $50 million needed to begin executing it. That decision is being made right now.
As a sociologist, I think about who gets protected by our systems — and who gets left out. When the University of Maine denied my request for workplace accommodations, I had little recourse. After 23 years, I was pushed into what I have come to call my “re-fire-ment. ” Not retirement. I did not choose to leave.
Fortunately, my husband and I were close enough to retirement age to absorb this, however unwanted. Most Mainers with ME/CFS cannot.
In a state where rural families often have little financial cushion, and where the nearest specialist can be hours away, ME/CFS is not just a health crisis. It is an economic one.
The average ME/CFS patient loses nearly half their income. Many leave the workforce entirely. Others spend years cycling through doctors, racking up bills for tests without answers. And because the disease affects women at about three times the rate of men, those losses fall disproportionately on the same people who were already earning less.
This is a structural pattern a sociologist recognizes immediately.
People with ME/CFS are being failed by a federal research investment that has, for decades, amounted to a fraction of what the disease demands. That is a policy choice — and policy choices can change.
I know what it costs to lose a career you spent your whole life building. I walked into classrooms at UMaine for 23 years. Now I walk into a coffee shop and have to decide whether I have the energy to stay.
I do not think 15,000 of my fellow Mainers should keep paying this price.
The NIH has a roadmap, the science is ready, and the plan is written. What is missing is the funding — and the recognition that the people waiting for it are not abstractions. They are Maine workers, Maine families, Maine neighbors who got sick and were told their disease was not real enough.
It is real. It has cost us enough. It is time for Congress to fund the research.