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Chronic Fatigue Syndrome Saps Its Victims, But New Research May Find The Cause
Sunday 12 July 2015
Validity of chronic fatigue bolstered by research
Victims offer first-hand accounts of debilitating illness
By all accounts, Whitney Dafoe was leading a vibrant life before the mysterious illness overtook him.
He had a promising career as a photographer; he volunteered to build villages in Jamaica and a monastery in India; he lived with a shaman in the Ecuador rain forest; and he won a coveted Microsoft Pro Photo prize in 2005 for his sensitive photo of light streaming through a forest.
But in between and during his adventures — and while he interned in 2009 as a photojournalist at the Palo Alto Weekly — Dafoe was sick, and getting sicker. He experienced crushing fatigue, dizziness and gastrointestinal problems, and the weight peeled off of his 6-foot-3-inch frame. At one point, he only weighed 115 pounds [52 kg], said his mother, Janet Dafoe.
It would take years to put a name to the devastating illness robbing him of all vitality. Even then, the name fails to adequately describe what he is experiencing. Dafoe, now 31, has chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME/CFS), a debilitating and complex disorder with a main characteristic of overwhelming fatigue that does not improve with rest or sleep and worsens with physical or mental activity.
But researchers and patients said the name, chronic fatigue, connotes mere laziness to some people, and it doesn't take into account ailments affecting organs and body systems, such as digestive upsets, joint pain, impaired memory or concentration and insomnia, according to the U.S. Centers for Disease Control (CDC). Exertion and, sometimes, outside stimulation can cause "crashes" that can take days or weeks from which to recover.
Although one of its early monikers, "yuppie flu," seems to indicate chronic fatigue is a recent phenomenon, it has been described since at least the 1800s, with some scholars stating that a disease with its symptoms dates to 1750. Florence Nightingale, the founder of modern nursing, was known to suffer from a debilitating fatigue syndrome that often left her bedridden — possibly chronic fatigue syndrome or fibromyalgia, according to the CDC.
An estimated 836,000 to 2.5 million Americans have chronic fatigue syndrome, according to the CDC. But DePaul University researcher Leonard A. Jason and a group of researchers found that many people who have the disease's defining symptoms have not been diagnosed as such. They estimated that upward of 91 percent of people with the illness have not yet been diagnosed.
Chronic fatigue occurs most often in people ages 40-59 and is more common in lower-income than affluent individuals, Jason found.
There is little research on mortality from chronic fatigue syndrome. A handful of studies have found possible correlations between the disease and deaths from heart failure, cancer and suicide.
The disease is sometimes dismissed by medical professionals as psychologically based. Its sufferers on average seek help from about 20 medical professionals before they are diagnosed, according to Dr. Andreas Kogelnik, founder and director of the Open Medicine Institute in Mountain View, who has treated chronic fatigue patients for more than 10 years, including Whitney Dafoe.
But the medical profession is slowly coming around to accepting chronic fatigue as a bona fide disease. It took a giant leap forward in February with the publication of a 304-page report by the Institute of Medicine. That report, based on a review of more than 9,000 scholarly articles, set up diagnostic protocols and recommended increased funding. It also proposed a name change to systemic exertion intolerance disease (SEID), which conveys the disease's most defining characteristic of unrelenting fatigue and illness that affects multiple body systems and organs. The term "chronic fatigue syndrome" should no longer be used, the report's authors noted.
Dafoe's disease has progressed to the point that he cannot talk, read or use the Internet. His joint pain became so severe some time ago that he could no longer walk and needed to use a wheel chair. Now he rarely gets out of bed. On a good day, he'll show his gratitude by pointing to his heart, his mother said.
His parents have stuck a few brief messages he's scrawled on notes to the door frame outside his room. The yellow squares of paper are the only way he can communicate these days.
"I don't know what to say. I just feel pretty hopeless about all this. I never get a break from bad things," he wrote on one note.
"It's so hard not being able to take care of my stuff. The feeling of helplessness it gives me is so stressful," another states.
Janet Dafoe keeps a small collection of paper hearts her son made when he had the energy, carefully and accurately torn from pieces of paper towel. She has pretty much given up her child psychology practice to care for him full time, and her kitchen has been transformed into a pharmacy. A table overflows with an arsenal of medications, medical supplies, vitamins, minerals, amino acids and food supplements, which she daily injects into his intravenous medicine line to supply him with nutrients. Her son has stopped being able to eat solid food, she said. Recently the family has tried to get a particular type of feeding tube inserted into Dafoe so that he can take food into his small intestine, but the gastroenterologist who would perform the surgery refused. Instead, he told Janet Dafoe that her son needed acute psychiatric care. It was just the latest in years of misunderstandings and rejections the family has faced, she said.
"Most hospitals don't accommodate CFS patients. They can't tolerate noise or human contact or anyone in the room," she said.
Janet Dafoe doesn't sleep much through the night because her son's sleep schedule is often upside down, and she's all but abandoned a social life.
"I went to Sundance (film festival) every summer," she said, but now I can't go away overnight. It's so impactful and sad."
Whitney Dafoe's family turned to Kogelnik about five years ago. He had probably been sick for one and a half years before they met, Kogelnik said.
"He had in some ways a very typical story. He was a young guy, successful, in-the-prime-of-his-life kind of person, and very positive but had all of a sudden been hit after a brief acute illness, and he hadn't really recovered from it. And he continued to kind of not recover from it for months and months; and months became years, and he had no reason functionally to not be healthy," Kogelnik said.
People who have chronic fatigue can develop psychological issues such as depression or anxiety, but those are not causes of the symptoms, Kogelnik said. It's the way chronic fatigue clobbers a life that can be depressing.
Whitney Dafoe had gotten a scholarship to travel around the world as a photographer when he became very ill, Kogelnik said.
"So imagine just from a psychological perspective already how devastating it would be. You know you have this wonderful life opportunity in front of you, and all of a sudden have it taken away from you. You can't walk down the street without becoming completely exhausted and having this post-exertional feeling where you just are drained," he said.
While Dafoe's case is among the most severe, others with chronic fatigue syndrome are debilitated such that their productivity is limited to just a few hours each day.
Sunnyvale resident Stephen Shimshock, 28, began to experience the same fatigue in 2011. It took three and a half years for him to find a structure he could live within so that he could have an active life, he said.
Shimshock was just out of college in 2008 and was testing life's waters with a few different jobs when he became a substitute teacher at Fremont High School in Sunnyvale. He hiked, swam, rode a bike and, in general, liked the outdoors.
"Two and a half years into working in Fremont, around Halloween I had a cold with a fever. I missed a few days and then got back to work," he said. But about three weeks later, he felt increasingly more tired.
"Around Thanksgiving, I got to the point that I'd get to work and I'd have trouble following students' sentences. The doctors call it brain fog," he said.
Standard tests didn't show anything bad. It was also difficult for Shimshock to measure the progression.
"I don't know what prompts the fatigue — emotions, physical or mental. At the beginning I felt a lot of guilt and shame. I always was the type of person who thought I was faking it if I was sick. I didn't think I was sick enough to take time off from work or school," he said.
When fully rested, Shimshock said he feels pretty much like his old self. But when he pushes himself beyond his limits, things start to happen. His dexterity goes down; he has difficulty speaking and structuring thoughts; and he has trouble chewing.
"As I get more fatigued, I become more sensitive to lights and sounds," he said.
Two years ago, he stopped driving.
"I may start the day OK, but I'm never sure I'd have the energy when I got to the place I was going to, or if I'd have the energy to return," he said.
When his doctors couldn't heal him, Shimshock began to seek ways to cope. He discovered that he has two or three hours in a day for activity without going overboard. He can walk two blocks, but if he pushes to go three or four, he will experience a "crash," which is much like pulling an all-nighter and feeling the effects for days or weeks afterward, he said.
Trying to push through exhaustion the way other people do only compounds the problem, he said. It's like having an envelope with a particular quantity of energy credits that, when depleted, take a long time to refill.
"A safe day is scheduling one hour of activity outside of the house or interacting with people," he said.
He tries to spend the rest of his time doing passive activities, such as watching movies or reading, and recently he started doing some crafts. He engages in these activities for no more than 30 minutes to an hour a day.
Shimshock cannot work, so his parents help him maintain an independent life. He lives with roommates with whom he has light social contact during the day. But he has learned not to go into hectic places such as the grocery store, where there is too much stimulation and sensory input.
"It feels like every day is a recovery. It's tricky. I still go to that place where I still feel like 'normal Stephen' sometimes. I have to hold myself back, and that's frustrating," he said. "I'm aware my environment is not only smaller but also fills slower."
Shimshock said he has been fortunate to have a loving family and supportive, understanding friends. They have come to know when he can't engage anymore in a conversation or can't eat at a restaurant. But the hardest thing at times has been feeling left behind.
"Being aware of all my friends having to go out of their way to put me in their lives; knowing that even if they knew my situation fully, I couldn't ask them to be as big a part of my life as I'd want because it would hold them back from living how they want — I think that was what held me back from facing this. I didn't see how I could fit into anyone's life in a positive way, sustainably," he said.
Staying relevant is important to the mental health of people with chronic fatigue. Writing to family and friends keeps Shimshock connected. He knows having chronic fatigue syndrome can be devastating emotionally.
"The only other person I knew who had it a few months ago killed himself," he said, visibly upset. "It can be easy to get lost inside yourself, to feel isolated. I've had friends who would reach out and that is stressful in itself."
Shimshock has an easy, relaxed way and he often smiles. As much as anyone can, he's come to terms with his illness.
"I have lived long enough to know that whatever path my life is going to take I only have so much say in it. I'm trying to put more emphasis on little steps of personal growth. My goal has been to live life with or without the fatigue," he said.
Patients with chronic fatigue frequently try multiple treatments to control their disease. Whitney Dafoe has taken antibiotics, anti-fungal and anti-parasite medications, vitamins, supplements, Chinese and Tibetan herbs. Both he and Shimshock have tried acupuncture. Shimshock is currently on six supplements.
Susan Kreutzer, another of Kogelnik's patients, who has had the disease since 1991, had thyroid surgery and then began taking high dosage of synthetic thyroid. She felt energetic, she said, but her new endocrinologist was not comfortable continuing with such a high dosage. Lesser amounts don't ease her symptoms.
While doctors and researchers don't know the exact cause of chronic fatigue, in many cases, symptoms have likely been triggered by an infection or other event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, and blood transfusions, according to the Institute of Medicine report.
Viruses are one well-documented commonality for at least one group of patients. The presence of antibodies against Epstein-Barr virus — which is associated with mononucleosis, Q fever, enteroviruses and other viruses — are often found in the blood of chronic fatigue patients, according to researchers (Read Unraveling the mystery of chronic fatigue syndrome).
Dafoe had mononucleosis; Shimshock also had a virus before developing chronic fatigue. Kreutzer, 58, had flu-like symptoms from the Epstein-Barr virus.
But there is some hope in the form of anti-viral medications, which can sometimes help patients significantly.
For Kreutzer, the improvement has been profound. Ten weeks to the day after she started anti-viral treatment, she felt significantly better. One day she had no energy to stand up and get her hands above her head, and then the medicine kicked in.
"You've just given me oxygen. It's like I rise from the dead. Overnight, I'm like, 'OK, who wants to go jogging?'" she said.
Shimshock and Dafoe also received anti-viral medication. While viral indicators in Shimshock's blood have improved, his energy level and other symptoms haven't, he said.
It did not help Dafoe's symptoms, his parents said.
Despite the setbacks, Dafoe has a powerful ally. His father, Ronald W. Davis, is a renowned geneticist who was instrumental in the Human Genome Project and is director of the Stanford Genome Center. He has a serious emotional investment in getting to the root cause of chronic fatigue, he said.
As his son continues to drift further away, Davis is trying to ramp up research into the origins of chronic fatigue. He has formed the Chronic Fatigue Syndrome Research Center at Stanford and is on the Open Medicine Foundation science advisory board. The latter has formed a research consortium, the End ME/CFS Project, to study the disease's origins and the commonalities between severely ill patients.
Some prominent Palo Altans are stepping forward to try to help Davis further his research. Yoriko Kishimoto, former mayor and director at Midpeninsula Regional Open Space, current Mayor Karen Holman, and former City Councilwoman and retired Judge LaDoris Cordell wrote a letter to rally attendees of an upcoming, July 16 event to raise $1 million of the $25 million Davis and his team need for research.
"This is a serious request on a serious topic — a call for help from our Palo Alto community but also a chance to break through a major medical research frontier," the trio wrote.
Davis noted the dearth of funding and the difficulty in receiving sizable federal grants. Chronic fatigue syndrome receives just $5 million to $6 million annually from National Institutes of Health (NIH). Additional funds come from private donors.
Chronic fatigue has more sufferers than similar diseases, such as multiple sclerosis and immune-disorder diseases such as AIDS, researchers said. Yet multiple sclerosis research receives 100 times the funding of chronic fatigue; AIDS research receives a thousand times the funding, according to a March 14, 2014, NIH report.
Davis said that increased, dedicated funding is key to solving the mystery of chronic fatigue. The NIH has 27 institutes and centers researching everything from eyes to hearts and aging. Without its own dedicated NIH institute, funding must be pulled out of other institutes' research budgets, and those institutes are unlikely to want to give up their dollars, he and other researchers said.
Meanwhile the costs, financial and emotional, mount for Whitney Dafoe's family. His parents spend $50,000 a year for his care.
"People go bankrupt," Janet Dafoe said.
For Ashley Davis, Whitney Dafoe's sister, the loss of her brother in her daily life is profound.
"We were best friends. We talked on the phone every day. Now we can't talk," she said. He was always more of a powerful figure — he was confident. I was quiet and shy. ... He was the one who pushed me. He shaped what I am today."
Her brother's illness got her into public health. She studied medical anthropology and has worked in public health environments around the world: in a hospital in Kenya and researching in Guatemala. And she raises funds for CFS.
Now Davis is getting married, but Dafoe barely knows her fiance. When he needs to be moved from his bed, Davis' fiance gently carries him in his arms while she cradles her brother's head in her hands.
As a little girl, she would often role play as a bride. Whitney Dafoe would pretend-play with her, coming up with ideas for the wedding. But it's pretty much a given that he won't be able to attend her real ceremony, she said.
"Now that I'm planning my own wedding, I'm trying to incorporate some of those things," she said of their childhood pretend weddings.
Davis had to announce their engagement on one of the little yellow cards the family now uses to communicate with Dafoe. Her grief, she said, is never-ending.
"It's hard to explain. Most people have experienced loss in the sense of a death and grieving, and you are able to grieve and move on, even if you still feel loss. (But with chronic fatigue) it's not a normal grief. It just continues, and it's been going on for years," she said.
As the clock keeps ticking away, Dafoe's health recedes further and further away, Janet Dafoe said.
"I go in there day after day and watch my son waste away," she said. "It's the worst kind of suffering for a mother to watch her kid suffering and being so miserable. I sit outside his hall and wait until he's ready for me to come in. I look through his door and wait. I've spent hours in that hall waiting for him to be ready. Sometimes I sit there crying. If there's something he needs or he can't reach and I can't figure out what it is, he'll put it on a card. Sometimes he'll write, 'Please don't stop helping me.'"
AT A GLANCE
Chronic fatigue syndrome facts
Number of U.S. CFS patients: 836,000 to 2.5 million
Age group with highest incidence of CFS: 40-59 years
Housebound and bed-ridden patients: 25 percent
Countries with the highest prevalence of CFS (cases per 100,000 population): Italy (9,500); Hong Kong (3,000); Iceland (1,400)
All figures are estimates. Sources: U.S. Centers for Disease Control; Institute of Medicine, National Institutes of Health; Jason, L. et al, DePaul University, CFIDS Chronicle, 2005-2006, "The Face of CFS in the U.S.," and citations therein: Lee et al, (2000); Conti et al (1994); Lindal, Stefansson & Bergmann, (2002)
The above, with comments and more photos, originally appeared here.
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