By Sallie Rediske

ME, or myalgic encephalomyelitis (aka ME/CFS), is a disabling, complex, chronic neuroimmune disease. Of the estimated 9-12 million Americans with ME, 80% developed it after a viral or bacterial infection. COVID-19 greatly increased the number of people affected.

In response to this, last September, the Alaska Legislature passed Senate Bill 60, designating May 12 as “ME Awareness Day” in perpetuity. Now, May’s come and gone, and here in Homer, we wrapped up a series of events celebrating the state’s first ME Awareness Day.

The unique characteristic of ME is “post-exertional malaise.” PEM is a delayed, disproportionate worsening of symptoms after physical, cognitive or emotional exertion. Unlike ordinary fatigue, PEM is a multisystem response that can cause disabling symptoms, including fatigue, pain, cognitive impairment, sleep disruption, autonomic dysfunction and more. For some, activities such as preparing a meal can trigger a crash that leaves them unable to get out of bed the next day.

When the state passed SB 60, it furthered efforts already underway at South Peninsula Hospital thanks to Linda Stearns, RN. Last year, with Linda’s help, Bateman Horne Center, a leading clinical research organization located in Salt Lake City, Utah, provided a virtual “Lunch and Learn” for staff, attended by 15 providers.

There is no FDA-approved treatment for ME, only symptom management. Pacing, with PEM as the focus, is recognized as the safest intervention. This pacing differs from managing busy daily life or recovering from sickness or surgery. Normally, people add time, distance and frequency to their exercise and activities to improve their health. In ME, pushing the broken metabolic system beyond its limits leads to greater disability and reduced quality of life. The great majority of people with ME are unable to work full-time, and 25% are housebound and/or bedbound. This underscores the importance of early recognition, diagnosis and proper management of symptoms. 

Occupational therapists, speech-language pathologists and physical therapists use pacing, but most lack knowledge of PEM, ME and related conditions like hypermobile Ehlers-Danlos (hEDS), mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS). Mental health providers can help patients cope with complex, chronic illness, but using methods that “reframe” fatigue or pain is not only unhelpful but potentially harmful in this patient population.

As ME Awareness Day approached, Homer Mayor Rachel Lord issued a Mayoral Proclamation designating May 12 as “ME/CFS Awareness Day” in Homer. This day was chosen by the international ME community as it is the birthday of Florence Nightingale, the founder of modern nursing, who is believed to have spent most of her life bedbound with an illness consistent with ME.

With generous support from Kachemak Bay Campus, SPH (especially Derotha Ferraro and Annie Garay, RN), Bateman Horne Center and MEAction Network USA, we held a screening of the 2017 documentary, “Unrest,” which shares the director’s journey with ME and its medical context. Over 50 people attended. Dr. Randy Weist emceed the post-film Q&A, bringing compassion and validation to this often-marginalized topic. Audience questions highlighted that many attendees have symptoms consistent with ME or other complex conditions and have experienced isolation and lack of care. Panelists included Amy Mooney, a registered and licensed occupational therapist from OT4ME in Chicago, who specializes in PEM-related illnesses and is the caregiver of a person with ME; Mercedes Harness, a local parent advocate; and me.

On Saturday, Amy presented the first rehabilitation training of its kind on PEM, ME and long COVID here in Homer — and it was free! Homer is now likely home to the highest concentration per capita of ME-informed rehab providers anywhere. The course attracted OTs, SLPs, nurses and a behavioral health professional. However, despite extensive outreach, significant gaps remain in local provider education. This is particularly concerning because patients with ME and long COVID are frequently referred to for rehabilitation services, where a lack of understanding of PEM can worsen symptoms and disability. Attendees left with a better understanding of how to identify PEM, implement safe pacing strategies, and avoid interventions that may push patients beyond their metabolic limits.

These events were made possible by dedicated individuals in Homer and across the country who believe people with ME deserve understanding and informed care. For those living with ME, long COVID, and related conditions — the “Millions Missing” — we hope this is not simply a week of awareness, but the beginning of lasting change in access to knowledgeable care, community support and quality of life. For further information about local support, check out the MEAction Alaska and Homer Health Education Initiative Facebook pages. 


Sallie Rediske is a Homer resident with lived experience with ME/CFS.