The Mystery of Chronic Fatigue Syndrome
In one of the early scenes in her heartbreaking 2017 documentary, Unrest, Jennifer Brea records a video on her iPhone showing the supreme effort it takes to get from her bed to her bathroom. Unable to sit up, she painstakingly slithers off the sheets and onto the floor. She collapses briefly and then begins to slowly crawl across the room, crumbling every few inches until she can summon the strength to press forward. These graphic scenes tell you all you need to know about what it is like to endure a debilitating and often misdiagnosed disease known as chronic fatigue syndrome.
Seven years ago, Brea was a recently married 28-year-old Harvard graduate student—her supportive husband, Omar Wasow, also appears in her film—working on a doctorate and planning an exciting life teaching, writing and conducting research in exotic places. Then one day she came down with a 104-degree viral fever and her future imploded. In the year following the fever, she had six different infections; her brain felt trapped in a pea-soup fog and familiar words eluded her. Bedridden for months at a stretch, the simple act of brushing her teeth felt like climbing Mount Everest. “I began to grieve for everything I couldn’t do,” she says in an interview, “and for all the places I might never see.”
In 2012, after more than a dozen consultations, immunologist Dr. Nancy Klimas, of the Institute for Neuro Immune Medicine at Nova Southeastern University in Fort Lauderdale, Fla., diagnosed Brea’s chronic fatigue syndrome. Her difficulty in getting a diagnosis is par for the course.
The Centers for Disease Control and Prevention estimate that 836,000 to 2.5 million Americans (and another 15 million people worldwide) have what is now called ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). ME/CFS strikes four times as many women as men; once women find they have the disease, they generally do not have children.
There is no cure, no known cause and no treatment approved by the Food and Drug Administration. Brea speaks for many other patients when she says, “I felt like I had died and was forced to watch the world move on without me. There have been times I was proud that I managed not to kill myself.” (A 2016 article in British medical journal The Lancet noted that ME/CFS patients have a 7 percent increased risk of suicide compared to the general population.)
What helped Brea in her darkest moments was discovering through the internet that she was, in fact, part of a community of millions afflicted with a disorder that causes her to ricochet between total exhaustion and intermittent depletion. Other symptoms include swollen glands, low fever, insomnia, swallowing and other digestive problems. One well-known ME/CFS sufferer, Laura Hillenbrand, is largely bedridden and writes her best sellers—Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival, Resilience, and Redemption, both of which were made into films—propped up on a pillow. Another, actress Morgan Fairchild, has a milder version and is able to work by carefully structuring rest periods between performances.
Typically, ME/CFS strikes people in their mid-30s, but anyone from 10 to 80 is vulnerable. The common trigger is some kind of stressor, like the Epstein-Barr virus that causes mononucleosis, or it could be spurred by a bacterial infection, an auto accident, even chemical or toxic exposure. If you Google ME/CFS specialists in the United States, only around 45 names pop up; 12 in California, eight in New York and the rest scattered among 13 states. One of them is Dr. David Kaufman, an internist in Mountain View, Calif., who has a six- to nine-month waiting list for new patients.
“Sadly there is little or no medical school training for ME/CFS,” he says, “and since these patients rarely end up in the hospital, young doctors don’t even see them.” He points out that ME/CFS is a complex, wide-spectrum disorder involving biochemical and structural abnormalities of the central nervous and muscular systems. “I spend two to three hours with new patients,” Dr. Kaufman says, “trying to diagnose each dysfunction so I can treat the components, which, for now, is the only way to mediate the symptoms.”
For most sufferers, treatment is a series of personal trial and error experiments with antiviral drugs, antibiotics, vitamin injections like B12 and other supplements that target specific problems like joint pain or gastric distress.
Researchers, too, are frustrated. “This is a multifactorial disease and it’s hard to choose which road to follow,” says Ron Davis, Ph.D., professor of biochemistry and genetics at Stanford University School of Medicine and chief researcher at the Open Medicine Foundation in Agoura Hills, Calif., one of the principal private sector organizations dedicated to decoding the mystery of ME/CFS. The other one is Solve ME/CFS Initiative in Los Angeles, whose chief scientific officer is Zaher Nahle, who has a Ph.D. in biophysics and physiology. Both organizations have joined the Hadassah-sponsored Coalition for Women’s Health Equity, which is hosting a summit in Washington, D.C., on May 16 (for details, see hadassah.org/celebration2018).
Among the host of questions these two groups research are: Is the disorder an autoimmune problem and do certain people have a genetic predisposition? Is something wrong in their gut biome? What causes patients’ hypersensitivity to light and sound? Is there a possible connection to autism, Lyme disease or fibromyalgia? What is the significance of chronic inflammation? What affects the disruption in the brain’s cognitive system? They are trying to locate a reliable biomarker to diagnose the disease in lab tests and to find out what prevents the cellular metabolism of these patients from manufacturing energy.
Until fairly recently, ME/CFS has languished in the shadows of public awareness. Unlike AIDS, where thousands of victims and their supporters took to the streets to force the government into responding, people with ME/CFS are too exhausted to get out of bed and fight for attention. Because it overwhelmingly affects women, it’s frequently lumped in the derogative category of “women’s diseases” such as lupus, migraines, fibromyalgia, vulvodynia and interstitial cystitis. Many in the medical community still believe that ME/CFS is a bogus disease and deride it as psychosomatic. One neurologist told Brea she had conversion disorder, a psychiatric term for neurological problems caused by stress. Nahle notes that ME/CFS research has been victimized by “sexism camouflaged by ignorance,” which, until recently, has contributed to keeping it among the lowest ranks of federal research dollars—less than hay fever.
But all that is changing. On a cold February day in 2015, the Institute of Medicine, the National Institutes of Health and other federal agencies issued a watershed report branding ME/CFS a serious and widespread disease. NIH Director Dr. Francis Collins declared, “Of the many mysterious illnesses science has yet to unravel, ME/CFS has proven to be the most challenging.” To meet that challenge, NIH announced in 2017 the establishment of four collaborative centers—three for research at prestigious universities and one for data management—to investigate this elusive disease. And to fund those centers, it awarded them $35 million in grants over the next five years—a fivefold increase in the amount given for ME/CFS research in the past.
Advocacy has also shifted into high gear. For the first time, ME/CFS patients are getting the opportunity to make themselves heard through an international grassroots movement called #MEAction, which uses social media and videoconferencing to mobilize home-bound people into a political force. One of its great successes has been organizing Millions Missing awareness events for those with ME/CFS. In 2016, there were demonstrations in 24 cities worldwide. Leaning on canes and rolling in wheelchairs, patients and their caretakers gathered in front of government offices. Thousands too ill to attend sent pairs of shoes tagged with their names, including hiking boots and ballet slippers, representing activities taken from them.
These events have a real legitimizing effect,” says activist Rivka Solomon, who has had ME/CFS for 28 of her 55 years but rallied to attend a Millions Missing event in Boston. In 2003, Hadassah Boston and Jewish Women’s Archive honored Solomon, who lives in Northampton, Mass., with a Women Who Dared award for her nonfiction book, That Takes Ovaries, celebrating courageous deeds of women and girls. No one knew she did all her interviews from the bed in her office. “If I have the energy to shop at my co-op,” she says, “I feel like I’ve been let out of prison. I spend most of my life in bed looking at the ceiling. I write when I can, but I never know when that will be. I live in constant uncertainty.”
Jennifer Brea, upright in her wheelchair, attended the Washington, D.C., Millions Missing demonstration. She considers herself one of the lucky ones because her doctors have found a cocktail of drugs that enables her to function somewhat normally. “I still crash,” Brea says, “but now I get over the crash in a few days instead of a few weeks.”
Meanwhile, Brea has had the thrill of seeing her film win documentary awards at several festivals, including Sundance, and it was even short-listed this year for an Oscar. “I made this movie when I realized that no one thought my disease was important enough to treat,” she says fiercely. “I had to do something.” That something helped moved the needle on ME/CFS to its present tipping point. While an Oscar is off the table, Brea has already won something more important.
Carol Saline is a journalist, speaker and author of the photo-essay books Sisters and Mothers & Daughters.