When I told friends earlier this month that I’d planned a trip to go visit my friend who is sick, I started to see it as a way to spread awareness about his disease. The usual response to “I’m going to an old friend’s house who’s severely ill” is some form of the hopeful “Give them my best.” I took it a step further and said with purpose, “I can’t, really. I won’t be able to see him.”
Their response was always, “But I thought you said he only had chronic fatigue syndrome?”
Since discovering my friend Whitney Dafoe had become severely ill after I saw a photo of him being loaded into an ambulance on Facebook, I haven’t been without my own moments of thinking the same. I had to relearn everything I thought about his disease, myalgic encephalomyelitis, including what to call it. As a writer, researching turned into a passion to raise awareness and to become absorbed in a community of a forgotten population.
I learned ME is a chronic, degenerative neuroimmune disease that has serious immune and cardiovascular abnormalities. The disease snatches the vital life out of patients on the level of diseases such as MS, AIDS, mitochondrial diseases and cancer. “The unrelenting pain, cognitive impairment and exhaustion of ME are often literally unspeakable,” according to the National Alliance for Myalgic Encephalomyelitis. “Most times, ME strikes relatively quickly (within hours, days, weeks). Once active and productive children and adults are suddenly robbed of vitality, with disability ranging from completely bedridden to somewhat functional.” The hallmark of ME is post-exertional neuroimmune exhaustion (the worsening of the disease upon even minor exertion). Prominent symptoms include prostration, severe muscle and/or joint pain, and severe cognitive dysfunction (measured as a loss of up to 50 IQ points). What’s important is that anyone can get it at any time, it often lasts a lifetime, there’s no cure and sometimes it kills.
My journey in becoming an advocate started with talking to Janet Dafoe, Whitney’s mom. I’d only known Whitney for a short time more than a decade ago, but we ended up talking for hours. Throughout the next two months, I made connections, and even friends, in the community of patients, families and the scientists who diligently study ME to find a cure.
“I’ve heard patients say that fatigue just doesn’t really capture what this is,” says Laurel Crosby, who has worked with Whitney’s father, Ron Davis, at the Stanford Genome Technology Center since 2007. “In fact, none of the words do. Drained, exhausted, wiped out… none of these work because people have an inherent understanding that rest will reverse the condition.”
Many patients want the name “chronic fatigue syndrome” to go away entirely, saying it’s like calling the late stages of stomach cancer a chronic belly ache. The World Health Organization has always called the disease exclusively ME, but in 1988, the Centers for Disease Control and Prevention changed the name in the U.S. to CFS.
There is no cure or FDA-approved treatment for ME. What many don’t know is that it is sometimes lethal. A study by Leonard Jason found the median age of death for cancer in the population is 72, but for his sample of ME patients, it’s 48. The average age at death from heart failure is 83, compared to 59 in ME patients who die of heart failure. Finally, the most heart-wrenching statistic that few know or talk about: The average age of self-induced death among ME patients is 39, compared to the national average of 48. Anecdotal evidence strongly suggests that ME patients, in general, die much younger than the general population, but as in most areas of ME research, there is a lack of studies due to the federal government ignoring the disease for decades.
“A brilliant physician I knew was one of the top public health officials on the AIDS crisis at its height,” says Justin Reilly, who has both Lyme disease and ME. “He said to me: ‘The CDC did the same thing to the AIDS patients as they are doing to you: They put their absolute worst people on it and ignored it as long as possible. But then people started dying grisly deaths in big numbers, and it wasn’t feasible to ignore it anymore. Unfortunately for you, your death will not be as grisly or swift.’”
Reilly is a senior producer for the ME documentary Forgotten Plague, which Ryan Prior wrote, co-directed and produced. I asked Prior what surprised him the most in making a documentary about ME. “What continues to surprise me is how common this disease is, how severe the suffering is and how deep the dysfunction is in that the medical system is unable to deal with the problem,” Prior says. “Many have been disabled for decades.” Even though the film was released in the fall of 2015, Prior continues to work for funding to broadcast the documentary in worldwide screenings; to raise awareness; to educate the medical profession through his nonprofit, the Blue Ribbon Foundation; and to advocate for patients.
“I think I was surprised that we had set out to make a film, but often, I feel like I’m running a social services agency with the number of people calling or emailing who are desperate for help and have nowhere to turn,” he said. “Every day or two you get a message that just stops you in your tracks. Over the course of a couple years, that becomes thousands.”
For the Davis/Dafoe family, their lives have also become dedicated to searching to find a cure for Whitney. Ron Davis, a scientist who won awards for his involvement in the Human Genome Project, heads the Open Medicine Foundation, where he works closely with scientists (including three Nobel laureates) to research the disease to find treatment or a cure.
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“It’s remarkable how insidious this disease is,” he said at a fundraiser at his home in late summer 2015. “Because the people who have it don’t look sick, so nobody believes them.”
I had the privilege of touring the lab where Davis works, meeting researchers and scientists such as Crosby and talking openly about their frustrations in raising funds to support their work. Some of the scientists currently volunteer their hours.
The National Institutes of Health currently spends about $5 million a year researching ME, about the same amount they spend on male-pattern baldness. ME affects an estimated one million Americans, but approximately 85 percent of people could have it and not be diagnosed according to the CDC.
Janet Dafoe put her career on hold to care for 32-year-old Whitney full time. Watching her go about her duties in fulfilling the tasks of direct and indirect care over a 24-hour period was humbling. “I’m in there, looking at my amazing son,” she said recently over the phone. “And I just look at him, knowing there are these people who think this isn’t a real. It’s like if someone were to get run over in the street, smashed to bits and bleeding, then someone saying there’s no such thing as cars.”
Originally published May 2016. Updated April 2017.