SALT LAKE CITY (ABC4) – Imagine waking up every day to extreme fatigue, nausea, body pain, weight loss, and more. You constantly feel too tired, weak, and pain to perform day-to-day functions or engage in your favorite physical activities. This is a reality for millions of people who suffer from complex and debilitating illnesses such as myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), fibromyalgia (FM), and now long COVID.
The U.S. Department of Health and Human Services considers ME/CFS a debilitating multi-system illness with significant unmet medical needs that cause an enormous burden for patients, their caregivers, and the societal healthcare system. It affects as many as 2.5 million people in the U.S. alone, with FM impacting as many as 10 million.
These illnesses cause significant impairment and disability that have negative economic consequences at both the individual and the societal level. Advocates say the large majority of ME/CFS patients do not receive a timely diagnosis or appropriate care.
At least one-quarter of ME/CFS patients are house or bed-bound at some point in their lives. The economic impact of these illnesses has been estimated to be anywhere between $36 to $51 billion annually. Doctors attribute the disease burden to the lack of awareness, understanding, and adequate treatment. Those who suffer from this disease are often met with disbelief from family and physicians. They are sometimes referred to behavioral health providers, leading to increased isolation and concomitant depression.
Now, because of COVID-19, medical experts believe there will be millions more who will be affected by a new condition called “long COVID,” where patients continue to suffer from lingering symptoms after recovering from the virus. According to White House Chief Medical Advisor Dr. Anthony Fauci, up to 35 percent of people infected with COVID-19 will become a “long hauler.”
Dr. Lucinda Bateman, the founder of the Bateman Horne Center co-authored a paper estimating that 10% of long haulers could go on to develop ME/CFS. They emphasized the critical need for awareness and appropriate research funding.
In honor of ME/CFS and FM Awareness Day, patients Hannah Powell and Jessica Turner joined ABC4’s Nick McGurk for an IN FOCUS discussion about their lived experiences with these complex and debilitating diseases.
Powell began experiencing symptoms six years ago as a high school senior on a service trip. Her illness was precipitated by an assumed malaria infection, which is similar to the experience of long haulers after a COVID-19 infection. She was then diagnosed with ME, CFS, FM, postural orthostatic syndrome (POTS), mast cell activation syndrome (MCAS), and endometriosis. She competed on the state level in track and field all four years in high school. She also played soccer during her freshmen year at the University of Utah, but had to drop out because of all the debilitating symptoms she experienced.
Turner, now a mother of three children, was diagnosed with ME, CFS, FM, MCAS, and POTS approximately 20 years ago. She first experienced headaches and fatigue at age 16 as a high school track athlete. To this day, she requires childcare when her husband is working because she is unable to do so on her own. Although she appears healthy during the time of this interview, she spends most of her time in bed and sometimes, cannot tolerate light or sound for a period of days.
Dr. Brayden Yellman, MD, a medical provider at the Bateman Horne Center joined the conversation to talk about the importance of an informed public and medical community, the advice he has to other healthcare professionals when faced with debilitating illnesses, why these patients suffering from complex diseases need help, and where people can go for help beyond the Bateman Horne Center.
To watch the full IN FOCUS discussion with Powell, Turner, and Dr. Yellman click on the video at the top of the article.