Kristi Woods, a registered nurse and ME/CFS patient advocate, says it took her 12 years and nearly 50 healthcare providers to receive a diagnosis for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Woods began experiencing exhaustion and cognitive dysfunction in 2010, but was told she had depression. She was eventually diagnosed in 2022. She reports that her symptoms included stomach problems and a 25-pound weight loss before her gallbladder was removed.

ME/CFS is described as a multisystem neuroimmune, neuroinflammatory disease often triggered by infection. It affects an estimated 15,000 adults in Maine, with one in four patients becoming housebound or bedbound at some point. There is currently no FDA-approved treatment or validated diagnostic test.

The economic impact of the disease includes:

• Nationally, patients spend an average of $4,439 annually on out-of-pocket care.
• Income drops to an average of 57% of previous levels.

Woods is advocating for the activation of the National Institutes of Health (NIH) research roadmap. The roadmap focuses on biomarker discovery, clinical trials, and the development of a validated diagnostic test. A single line item of $50 million in the FY27 spending bill would activate the plan, which follows a directive from Congress for the NIH to develop an implementation plan.