But you don't look sick: San Diegans suffering from mysterious and misunderstood chronic fatigue syndrome battle daily life
By Jennifer Reed, SDNN Saturday, November 14, 2009
Chronic fatigue syndrome, also known as CFS, affects 1 to 4 million Americans.
In the early 1990s, Bob Deering of Scripps Ranch worked as a shipwright.
One day, while building a deck for a client at their residence, Deering was informed that if he had any questions, the man of the house would be coming home to nap that afternoon: he had chronic fatigue syndrome.
“I made disparaging remarks in my own head,” Deering said. “Chronic fatigue. Right. He’s just lazy.”
Little did he know, however, that it would be a day he wouldn’t soon forget.
“That image popped up again 10 years later when I was diagnosed with CFS,” he said.
Today, after trying to work part-time for several years, Deering cannot work at all. He has been sick since July 2001, when he came down with a flu-like illness. After first being diagnosed with Epstein-Barr virus-a virus that has been linked to CFS-he was finally told he had chronic fatigue syndrome.
“The first thing I had to give up was my work,” Deering said. “I just kept thinking, any day now, I’ll feel better. It took me years to learn that wasn’t going to happen.”
Chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome, is a complex, mysterious and widely misunderstood illness. Characterized by profound fatigue that is not improved with bed rest, the condition also results in a myriad of other debilitating symptoms.
Nancy Gordon, another local sufferer of CFS, was a licensed clinical social worker in a private practice before a car accident in 1992 changed her life. Gordon was diagnosed with fibromyalgia in 1995, and as she became more paralyzed with pain, fatigue and a loss of cognizance, she finally began to rely on disability in 1998. She was diagnosed with CFS in 2000.
“I try and keep my stress down, which is a constant challenge,” she said. “I exercise whether I feel like it or not. When I’m done, I feel like I’ve accomplished something, which, when you have a chronic illness, is a big deal.”
Deering and Gordon are just two of the 1 to 4 million Americans suffering from CFS. According to the Centers for Disease Control and Prevention, these victims are seriously impaired, and at least one quarter are unemployed or on disability because of the malady. Despite that, only about half have consulted a physician about the condition.
Exhaustion, poor stamina, sleep difficulties and problems with cognitive functioning such as concentration and short-term memory are all signs of CFS, but the condition is also marked with flu-like symptoms, like joint and muscle pain, tender lymph nodes, sore throat and headache.
“Imagine the worst flu you’ve ever had,” said K. Kimberly McCleary, president and chief executive officer for the CFIDS Association of America. “This is really a kind of bone-draining exhaustion, where you feel like it is just a monumental effort to do any normal activities of daily living. Getting up, getting dressed. All of those things just wipe you out completely. When you’re stuck in bed with the flu, you’re stuck in bed with the flu. It’s not a matter of not wanting to get up. You can’t get up.”
Gordon said she has had “terrible sleep problems” and uses a plethora of drugs and vitamins to keep her going, including an anti-depressant and Adderall, which she described as “legalized speed.”
Deering’s sleep patterns are also occasionally disrupted by CFS.
“Because I’m not doing anything all day, I’m tired, but sometimes I can’t sleep at night.”
While the CDC reports that one-third of those with CFS are unable to maintain full-time employment after becoming ill, disability allowances are available to them, just as with any other medically certified illness. The application for benefits can be long and frustrating, however, and coverage is determined on a case by case basis.
Treatment is also resolved on a case by case basis at this point, said McCleary.
Both Deering and Gordon manage their CFS with behavioral and dietary adjustments-and a little encouragement.
“I have a very supportive spouse,” said Deering, who has been married to his wife-who, for the last eight years, has been the sole wage-earner-for 32 years.
Gordon has her own support group at home as well: two Mexican Hairless Xolo service dogs named Toaster and Pink, whose body heat relieves her aching muscles. She said Toaster can often be found around her neck-at home, at the movies or on a plane-while Pink’s main responsibility is to fetch-Gordon’s cell phone, a throw blanket or even any one of the four TV remotes.
“She prevents me from getting more fatigued,” Gordon said.
While Deering and Gordon struggle with refreshing rest and may seem what we simply call “tired,” McCleary said it is unlikely that poor sleep is actually the cause of CFS. It is also not the key indicator of the condition. Instead, she identifies the hallmark trait as what is known as “post-exertional relapse” or “post-exertional malaise.”
“Any minor amount of physical or mental exertion, whether that’s trying to help your third grader with his math homework or going out to the grocery store, may cause the relapse of all your other symptoms,” she said.
But what’s the trigger?
What actually causes the condition and it’s multitude of symptoms, McCleary said, is a question that research has not answered yet-though we may be getting closer.
Exhaustion, poor stamina, sleep difficulties and problems with cognitive functioning are all signs of CFS.
Just weeks ago, in the Oct. 8 issue of Science, researchers at the Whittemore Peterson Institute at the University of Nevada in Reno found that CFS may be linked to the retrovirus XMRV (xenotropic murine leukemia virus-related virus), which is in the AIDS virus family.
The retrovirus, which has also been related to an aggressive form of prostate cancer, was found in 67 percent of the 101 CFS patients tested and only 4 percent of the 218 healthy controls who were tested, McCleary said.
“We are trying to understand what the role of XMRV is and whether that can be an aid in diagnosis and perhaps a route for treatment,” she said. “It’s fighting time right now because it’s kind of re-instilled hope for a lot of people that we’ll find some of these answers in the near term.”
The news also spreads optimism to those who suffer from subsets of CFS, like myalgic encephalomyelitis, a disease akin to CFS that was defined in the 1950s after an outbreak in the United Kingdom, McCleary said.
For now, she said, researchers are relying on current working knowledge, which consists of three ideas. First, it seems likely that sufferers are predisposed to CFS; that is, there is a genetic component involved. On top of that, most people report being in an immune-compromised state at the time they first become ill. The third factor is what is thought to really set off the condition, a bout of flu or mono, or possibly even exposure to environmental toxins.
“From that point, usually a healthy immune system would be able to fight that off and return the body to a healthy state, but what seems to happen in CFS is that after that triggering event, the body goes into kind of a hyper-drive to fight off that infection and never resets itself,” McCleary said. “Most people relate it to, ‘I thought I was coming down with the flu … and I’ve been in bed for 11 years.’”
While clinicians and researchers are striving to make sense of the mysterious illness, CFS patients are busy struggling to be taken seriously.
McCleary attributes the public’s common misconceptions with CFS-that it’s “just tiredness” or even a lifestyle choice in our busy, always accessible lives-to the name. While the symptoms and impact are more like those of multiple sclerosis or lupus, she said, the name suggests something as simple as weekly burnout.
“People laugh and say, ‘Yeah, I’m tired, too,’” said Deering, who has learned to be discreet about revealing his illness.
“I think people who don’t have experience with chronic illness or invisible illness don’t really get it,” Gordon said.
Even a simple task like running errands warrants comments and looks from those who happen to notice her handicap parking permit as she walks into a store, she said.
“I may not be tired going into the store, but when I come out carrying groceries, I will be,” she explained.
It even took some time for her own family to believe the diagnosis.
“I went from having a job to being on disability. Why would someone like me want to live like this?”
While silently hoping for remission, to wake up refreshed and able again, Deering said that until there is a cure, he plans to keep his nose above water.
“You give up an awful lot when you lose your energy,” he said. “But it could be a lot worse. Count your blessings when you do feel better.”
Jennifer Reed is SDNN’s health and wellness editor. She can be reached at jennifer.reed(at)sdnn.com.
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