“I felt like I was going to the desert to die,” said Jennifer Rehmeyer of that fateful day in February 2012 when she abandoned everything she owned to pitch a tent in the middle of Death Valley.
Rehmeyer hadn’t lost a bet or embarked on a spiritual quest; she was embarking on an experiment with the potential to save her life.
Ever since the late 1990s, Rehmeyer, an award-winning mathematician, science writer and graduate of MIT, had been suffering from a debilitating lethargy and exhaustion that she couldn’t shake, even after a full night’s sleep. On some mornings, getting out of bed was just too difficult. One doctor suggested that the cause might be stress, but Rehmeyer wasn’t convinced; she’d seen plenty of other people under stress, and their bodies weren’t falling apart like hers.
Undeterred, Rehmeyer redoubled her efforts to reclaim her active life, socializing, joining a wilderness search-and-rescue team, volunteering, and pursuing a master’s degree. She even built a straw-bale house in Santa Fe, New Mexico, with her own two hands. Still, she recalled afterward, “My physical endurance was shot. Life was a constant uphill slog.”
Over the next four years she threw herself into finding a solution. After visiting a chronic fatigue specialist, she was tested for Lyme disease, thyroid issues and liver malfunction, and was sent home with an overload of nutritional supplements. “I swallowed mountains of candy-colored pills, but they could have been actual candy for all the good they did,” she said.
She cut out carbohydrates; she tried vegan and Paleo diets and restrictive food plans to rule out allergies. Other efforts included engaging in physical activities like swimming and yoga. She visited a parade of doctors, acupuncturists, chiropractors and endocrinologists. But nothing they did made her feel any better.
Finally, on November 4, 2006, Rehmeyer woke up in a semi-paralyzed state, in immense pain. Sitting in the neurologist’s waiting room, she was convinced she was about to receive a diagnosis of multiple sclerosis, Parkinson’s disease or ALS. Much to her surprise, the doctor told her that she was suffering from chronic fatigue syndrome (CFS).
Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is defined as “a disease characterized by profound fatigue, sleep abnormalities, pain, and other symptoms that are made worse by exertion.” The cause is unclear, although research suggests that certain triggers or combinations of triggers, such as toxins or stress, can activate muscle pain and inflammation of the brain and spinal cord. Beyond that, the information was limited—which was especially frustrating for Rehmeyer, who was well-versed in medical research.
“The studies were small and scientists hadn’t followed up on them, so I couldn’t be certain that the findings were even true,” she said. Their tests showed dysfunction in almost every bodily system in CFS patients, but no indication of a core problem. Furthermore, research funding for CFS was pitifully limited. At least one million Americans are affected, but as of a few years ago, the National Institutes of Health had allotted only $5 million to research the condition. By comparison, the NIH spends nearly $300 per patient per year on multiple sclerosis.
Part of the problem, Rehmeyer learned, was that many in the medical field—a full 58 percent of doctors—believed that CFS is psychosomatic, meaning that its symptoms are related to mental or emotional disturbance.