A Mystery Disease That Robs Vitality

“It steals your life.”

This is Elaine Mason, Santa Barbara business owner (with her husband, Bob) and mom of twin boys. Their son Ethan, now 14, was a robust, straight-A student, had just been voted “Student of the Month,” and was a competitive soccer player before he was struck down by an illness that has robbed him — and millions of other sufferers — of his health, energy, and the ability to live a normal life. This formerly active teen with a busy social life now rarely leaves the house, spends much of his time in bed or on the couch, and has lost contact with most friends and classmates.

The family’s ordeal began innocuously in December of 2016. Ethan and his twin brother, Jaden, both came down with what seemed to be a typical cold: coughing, mild fever, sore throat. Jaden recovered, but for Ethan, according to Mason, “That was the end of his life as a normal kid.”

The first sign that something was seriously wrong came just a few days later, when the family went snowboarding. Jaden and his friends hit the slopes, but Ethan said simply, “I can’t. I’m too tired.”

Over the next five weeks, during numerous trips to the family pediatrician, the doctor just kept saying, “He’ll be back in school on Monday.” But by early February, said Mason, Ethan “stopped being able to walk, or leave his bed, or lift his head.” They rushed him to the Emergency Room at Cottage Hospital, where he was admitted and spent seven nights. They were then referred to UCLA, where the specialist concluded that his initial diagnosis (of myasthenia gravis) was wrong and attributed the symptoms to some kind of psychological problem; he recommended counseling and physical therapy.

As a mother, hearing that her son’s suffering was disbelieved and his debilitating symptoms deemed psychological was “infuriating. Completely shocking and infuriating — because I knew, as his mom, that it was absolutely not true. My son had everything to live for and had a wonderful life before this.”

The family continued to search for answers, consulting many doctors and having seemingly endless tests. By July 2017, after consulting with neurologists at Stanford, he was given a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). They finally had a name, but not necessarily treatment — or hope. Perhaps the most devastating moment of their journey came when meeting with the Chief of Neurology at Lucille Packard Hospital at Stanford, who told Ethan, “You’ll have to learn how to cope with this. There’s nothing we can do.”

Ethan’s debilitating illness isn’t rare; in fact, it is shockingly common. Estimates are that there are between 1 million to 2.5 million people in the U.S. with this disease, making it more prevalent than muscular dystrophy, multiple sclerosis, and cerebral palsy combined. According to the Centers for Disease Control’s prevalence guidelines, there may be as many as 700 patients in the City of Santa Barbara and over 3,000 in Santa Barbara County.

Many patients are unable to work or attend school and may be housebound or bed-bound. It disrupts digestion, sleep, metabolism; it sends the immune system into overdrive. Sleep isn’t restful or restorative; some live with daily pain, many have cognitive impairment they describe as “brain fog,” and any small exertion can cause a “crash” for hours, day, even weeks. Many people with ME/CFS report lower quality of life scores than those with stroke, heart attack, or some cancers.

This is a public health crisis that most people have never heard of; it has been all but ignored by the medical establishment and the federal government. The National Institutes of Health estimates the per-patient spending for research for HIV/AIDS to be around $2,450; for ME/CFS, $2. That’s right: two dollars per patient, for a devastating and common disorder.

Mayor Cathy Murillo and the City of Santa Barbara have recognized Saturday, May 12 as International ME/CFS/FM (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome/Fibromyalgia) Awareness Day. It is an important first step in recognizing the hidden suffering of patients in our community and around the globe.

Awareness is only the first step. May 12 is also a global call to action. Here are some things you can do:

• Attend a #MillionsMissing Day of Action on May 12 — there are currently 101 events registered all over the globe.

• Use some of the #MillionsMissing Tools to participate — including posts you can easily share on your own social media with just one click, and signs and posters you can print and display in your yard or at an event.

• Watch the documentary about ME/CFS, Unrest, on Netflix or another platform.

• Donate to the Open Medicine Foundation or #MEAction (both are tax deductible).

Ethan has improved somewhat, in that he is no longer wheelchair-bound. But he still rarely leaves the house and experiences the isolation all too common for people with this illness. Said Mason, “Friends don’t understand, because when he’s well enough to see [them], he looks normal.” On good days, Ethan can complete about an hour of school tutoring.

Despite the odds and 17 debilitating months later, said Mason, “He’s not giving up, and we’re not giving up.”