Committee hears bill to designate May 12 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day

Senate Bill 60, introduced Feb. 11 before the Alaska Senate Health and Social Services Committee, would designate May 12 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS) Awareness Day. Senator Lukey Gail Tobin, the bill’s sponsor, told the committee the measure was inspired by a constituent and friend who now lives with the disease and that the recognition is intended to raise awareness and prompt more research and clinical attention.

Supporters and clinicians described MECFS as a chronic, complex neuroimmune disease that can cause long-term disability and broad multisystem symptoms. "Senate Bill 60 would seek to establish May 12 as Myalgic Encephalomyelitis Awareness Day," Senator Tobin said. Dr. David Penn, a family medicine physician in Anchorage, told the panel there is no diagnostic test or FDA‑approved cure, and that a defining clinical feature is post‑exertional malaise: "Post exertional malaise is pathognomonic, a feature of the disease." Dr. Penn said clinical criteria (the Institute of Medicine’s 2015 guidance) are used in diagnosis and cited long delays to diagnosis shown in surveys.

Patients and family members who testified described daily life and care gaps. Hollis Mickey, a former educator, arts administrator and UAA professor who said she is mostly bedbound, described losing community participation and employment after becoming ill: "I am part of the 25 percent of ME patients that representative Tobin mentioned who are entirely housebound and mostly bedbound." Other invited witnesses — including a medically retired physical therapist, a Homer city council member, parents of a child treated for long COVID manifesting as MECFS, and friends and colleagues of patients — recounted delays in diagnosis, limited provider knowledge in Alaska, and the need for recognition to improve clinical and community support.

Committee members asked about prevalence, possible sex differences, diagnostic coding and links with long COVID. Dr. Penn said MECFS is identified two to four times more frequently in women and that long COVID appears to meet MECFS diagnostic criteria in a substantial share of cases; Senator Tobin and several testifiers noted national and international advocacy for an awareness day on May 12, which some advocates connect to Florence Nightingale’s birthday. The sponsor’s staff provided a brief sectional analysis noting the bill would add a statutory section to create the recognition day.

The committee closed invited testimony and did not take a vote. Chair Dunbar stated the panel would set the bill aside for further consideration and return to it at a future hearing. "We've already had a number of people here that were invited. We'll say they were invited. Alright. I'm going to close public testimony, and we're going to set this bill aside and bring it up at a later date," the chair said.

The committee listed SB60 among items to be returned for further consideration at the committee’s upcoming meetings.