SAN FRANCISCO — Arpita Sheth stops short of calling herself a one-time party animal, but she has no hesitation in saying she was a “serious, serious party-goer” who had led an active social life.
She would hike 6 to 7 miles a day every week and swim three times a week. She would often drive herself to New York City from her parents’ home in Parsippany, New Jersey, for a night out with friends.
Life was good professionally as well — she was a successful freelance graphic designer putting to good use the skills she had learned as a commercial artist in her native India and as a graphic designer in the County College of Morris in Randolph, New Jersey. She, her sister and their parents had migrated to the U.S. in 1998 and settled in New Jersey. Sheth was 19 then.
But at the end of 2009, when she was 30, Sheth’s life came to a grinding halt. She was overcome by intense fatigue — “of a kind I’d never experienced in my life” — accompanied by muscle weakness throughout her body that made carrying even “an empty glass too heavy for me,” she said.
Doctors in the hospital ER tried to figure out what “infection” she could have caught that had debilitated her so severely. Unable to, they nevertheless prescribed a slew of antibiotics and discharged her after a day and a half.
Sheth would find out almost a year later that she was among an estimated 1 to 2.5 million people in the United States who are stricken with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). The disease strikes people during the prime of their life, leaving as many as 75 percent of them unable to work and 25 percent bedridden.
ME/CFS is often accompanied by debilitating fatigue that can be brought on by even a simple act as brushing one’s teeth. Muscle and joint pain characterize the disease. Immune system disruptions are not uncommon that changes how the body responds to stress. Natural killer cells lose their ability to fight infections. Patients frequently complain of swollen lymph nodes in the armpit and neck regions, sore throat and abdominal disorders such as irritable bowel syndrome.
“The health of millions of people the world over has been compromised by this disease,” said Dr. Jose Montoya, associate professor of medicine in the Infectious Disease Division at Stanford University’s School of Medicine, speaking at a public forum. Montoya has been researching ME for almost a decade and treats patients who have it. He heads the ME/CFS Initiative at the school.
There is no test for the disease, which is why doctors nationwide — even the few who acknowledge it even exists — have a hard time diagnosing it. And it is not in the textbooks of medical schools, researchers say.
After decades of dismissing it as a “psychological disorder” — something that’s all in the head -— and shipping patients off to psychiatric wards for treatment, or labeling patients as malingerers, leading health organizations have now come to recognize it as a serious long-term illness, possibly caused by a disruption in how the immune system responds to infection or stress.
The U.S. Centers for Disease Control and Prevention (CDC) and the National Institute for Health and Care Excellence in Britain, where an estimated quarter of a million have been diagnosed with ME, are revising guidelines to manage a disease characterized by at least six or more months of incapacitating fatigue and muscle pain along with sleep and cognitive problems. Symptoms vary from patient to patient. It is diagnosed by ruling out other conditions that might produce the same symptoms.
But because of its complexity, and because it’s poorly understood, very few doctors even want to treat it.
A few years ago, the Stanford University Infectious Disease Center had a sign outside that said: “We don’t see CFS patients,” according to Dorothy Camenzind, the mother of a 24-year-old patient, Tom. That sign is no longer there.
Montoya said that at one point he was discouraged from accepting patients. The school warned him that he would be “committing academic suicide” if he did.
Tom, a former Stanford University student, lies in a darkened room blindfolded, wearing earmuffs and sleeping much of the time.
“He can tolerate zero light or sound, nor can he swallow and eat, ”said his father, Mark Camenzind.
He is fed through a tube going through his gut. He has been unable to communicate for the last couple of years. The disease has already robbed him of four years of his life.
Camenzind, who works in the semiconductor industry, and, Dorothy, a pediatrician, juggle their time between their jobs and taking care of their son, who had set his sights on becoming an artificial intelligence researcher. Visitors are told to whisper when they step into their San Ramon, California home because their son is “super sensitive” to sound, like so many severely impacted ME patients.
Understanding the disease has been largely influenced by its symptoms, said Dr. Raj Patel, a Foster City, California physician who also specializes in treating mold diseases, Lyme and other tick-borne diseases, as well as autism.
Patel believes calling the disease chronic fatigue syndrome diminishes its scope and seriousness.
“It should be called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS),” he said. “CFIDS more aptly describes it.”
One of the main factors that distinguishes ME/CFS from other fatiguing illnesses is what is called “post-exertional malaise (PEM)”— a worsening of many of the symptoms of the disease from physical or mental exertion. Recognizing this, the CDC in 2011 dismissed an earlier British study that recommended graded exercise and cognitive therapy for M.E. patients. PEM can last for days to weeks after the exertion.
Geetanjali Arunkumar, 58, of Saratoga, California, has experienced that often. The mother of two grown children has been living with ME/CFS for two decades. One doctor she consulted at the onset of her illness told her: “There’s nothing wrong with you; you are crazy.”
Arunkumar is among the 25 percent of ME patients who faces a pattern of relapse and remission. When she relapses, she often experiences what’s called a “crash.”
She describes one recent crash thusly: “The hurricane swept me off my feet with a merciless bout of vertigo, so that I was even unable to lie on my bed peacefully, always feeling as though I was about to fall off.”
She said she needed help even to walk to the bathroom and couldn’t take a shower for days on end, because the water falling on her body hurt.
In 2010, she developed severe thyroid problems, forcing her to rely on a wheelchair and be homebound for six months, she said as she lay on a couch in the family room of her spacious home on a recent day, cradling her dog in her arms.
On her “good days,” which are few and far between, she and her husband, N. Arunkumar, director of engineering at Cisco, sit and plan fundraisers for the Open Medicine Foundation (OMF) in Mountain View, California. The organization does research on complex diseases such as ME. At one fundraiser they held at a South Bay Indian restaurant last year, they were able to rake in $35,000. This spring, they are hoping to hold a walkathon in the South Bay to raise more money for the OMF.
Since falling ill, she has been to her native India more than once trying to find a cure for herself through Ayurveda and homeopathy. She has also tried acupressure in the Bay Area. Stanford’s Dr. Montoya has provided her with a lot of support, she said.
The OMF estimates there could be a 17 million ME patients worldwide. But nearly 90 percent of them remain undiagnosed, according to the National Academy of Medicine.
There are no data on how many people have ME in India because of the way the nation’s medical system is set up. Patients don’t get a referral from their primary care doctors to see specialists, said Dr. Prithika Chary, a leading neurologist and neurosurgeon in Chennai, via e-mail. She said she has seen four or five ME patients in the last 10 years.
When patients complain of fatigue and test results seem normal, most primary care doctors think the patient is malingering or has some psychological disorder, she said.
“So effectively, the diagnosis is missed,” Chary said.
ME advocates are frustrated that most insurance companies refuse to cover treatment, which could be another reason why so few doctors want to accept patients, according to Mary Dimmock. The Connecticut resident had worked in the pharmaceutical industry for three decades before becoming an ME/CFS patient advocate. Her son, Matthew Lazell-Fairman, was stricken in 2010, she said. Dimmock believes there are only 10 doctors in the U.S. who treat ME patients.
There is, she said, a reluctance among insurance companies to provide coverage.
“When all the treatment is considered experimental,” insurance companies feel emboldened to deny reimbursing the treatment, said Dimmock, who spent nearly $60,000 in one year from her pocket for her son’s treatment. Dimmock is on the Los Angeles-based Solve ME Initiative, a patient advocacy group that is working to make the disease understood, diagnosable and treatable.
Sheth too pays her provider Dr. Majid Ali out-of-pocket. Like Dr. Raj Patel, Ali uses a nutritional, rather than a drug-based approach, to treat his patients. He has written several books on the subject and gives weekly radio talks.
What angers activists like Dimmock is the short shrift the disease has been getting from federal health agencies and the medical community. To make matters worse, she said, “the CDC has really butchered the way they defined the disease which resulted in stigma and disbelief, I think [the] CDC's handling of the case definition was and continues to be a significant issue that has impeded progress in the disease.”
Dr. Ronald Davis, director of Stanford’s Chronic Fatigue Syndrome Research Center, who also has a son stricken with the illness, said he has put in slew of grant proposals with federal health agencies over the years, but has been turned down each time.
But the needle seems to have moved a little in the last couple of years, thanks to years of unrelenting campaigning by ME advocates, Last fall, the NIH and other leading health organizations have come to recognize ME/CFS as a serious long-term illness. Soon after, the NIH funded a consortium of research centers to establish a coordinated scientific approach for diagnosis and treatment, according to the NIH.
Activists are hoping that the new awareness will translate into greater funding, which is far below what research in other serious illnesses get. For instance, the National Institutes of Health funding for HIV/AIDS in fiscal year 2013 was $28.8 billion, compared to $5 million for ME/CFS that same year. In fiscal year 2017, the NIH ramped up HIV funding to $32.8 billion while funding for ME/CFS rose to only $8 million. That translates to $5 per person, per year, according to the OMF.
The Camenzinds use every opportunity to bend the ear of politicians and other influential people, hoping they will help to ramp up federal funding.
Sheth believes Ali’s dietary treatment is slowly making her better. She believes that she’s at least 40 percent better than when the symptoms first hit her. But he has told her she will never be fully cured, she said.
These days, she keeps a light schedule, never driving to places more than an hour away from home. She has learned to pace herself so she can make sure she doesn’t use up all her energy resources in the first part of the day.
Her treatment, she knows, is “not a silver bullet. But it has got me from a non-functional to a functional state,” she said.