For years, chronic fatigue syndrome (CFS) has baffled both experts and patients alike. Although up to 2.5 million Americans may live with the disorder, researchers are only now starting to better understand it — and to realize that we still have a lot to learn.
In fact, even the name itself might be inaccurate. A recent report commissioned by the Institute of Medicine (IOM) concluded that because the illness can cause much more than, say, drowsiness, a better name may be “systemic exertion intolerance disease” (SEID). Keep reading to find out 10 more need-to-know facts:
1. CFS is a very real disorder. A major problem with CFS is that people who have the condition sometimes feel like no one believes them. “They’re often told it’s all in their heads,” says Jacob Teitelbaum, MD, author of From Fatigued to Fantastic and an expert who specializes in the treatment of chronic fatigue and fibromyalgia. That’s also another reason behind the IOM’s proposed name change: According to the organization’s report, the term “CFS” can cause patients (along with their family and medical personnel) to “trivialize the seriousness of the condition and promote misunderstanding of the illness.”
“This name change acknowledges that this is a very real and very significant illness that can no longer be pushed aside,” says Dr. Teitelbaum.
2. Fatigue isn’t the only symptom of CFS. First things first: We’re not talking about a general feeling of sluggishness. We’re talking about a type of fatigue that gets worse after physical activity or mental exhaustion, and that isn’t alleviated with bed rest. And there are many other symptoms that accompany this exhaustion, including muscle pain, cognitive impairment, unrefreshing sleep or insomnia, post-exertional malaise, enlarged lymph nodes in the neck or armpits, frequent sore throats, headaches, and difficulty fighting infections.
3. CFS is often difficult for doctors to diagnose. There’s no lab test or biomarker for the disorder, nor are the severity, number, and type of symptoms the same from person to person. And because people receive a CFS diagnosis only after their doctors rule out other medical conditions — like anemia, an underactive thyroid, sleep disorders, or kidney and liver problems — the diagnostic process can take a long time. If your fatigue has lasted longer than six months in a row and is accompanied by several of the symptoms listed above, it’s possible that you may have CFS. (You can also read up on the IOM’s diagnostic criteria online.)
4. Many people with CFS don’t know they have it. Because an estimated 84 to 91 percent of people with CFS haven’t been diagnosed yet, the IOM report says that the disorder’s actual prevalence may be much higher.
5. The cause of CFS is unknown. Scientists are still trying to pinpoint what causes CFS. Right now, some experts think that multiple triggers may bring it on; infections, immune disorders, stress, trauma, and toxins have all been studied as possible culprits, although no single cause has been identified as being the most likely one.
6. Some people are more likely to have CFS than others. According to the Centers for Disease Control and Prevention, CFS is four times more common in women than in men. Though the average age of onset is 33 (it’s more common in adults), CFS can affect people of all ages. “This disorder really affects all walks of life,” says Teitelbaum, who’s treated patients as young as 3 years old.
CFS can also be seen in members of the same family. (That seems to suggest there’s a genetic component to the illness, but more research needs to be done to confirm this connection.) Finally, trouble managing stress may also contribute to the development of CFS.
7. Many people living with CFS suffer from social isolation and depression. Chronic illnesses and depression often go hand-in-hand. It’s not uncommon for people with CFS to have to limit the amount of work they do, and the social activities they once enjoyed. Some are even temporarily bedridden. So it’s no surprise that that people with CFS often feel isolated and depressed.
Christine Stamatos, doctor of nursing practice, director of the Fibromyalgia Wellness Center at North Shore LIJ Health Systems, says she often discusses mental health with her patients, many of whom live with both fibromyalgia and CFS. “I very much believe in connecting people with the proper resources to get counseling if that’s what they need,” she says.
8. Like many “invisible illnesses,” CFS often comes with a social stigma. Many people simply don’t understand the disorder, so they may think that those living with it are “faking it,” or that the illness is not as bad as the person makes it seem. This can also contribute to feelings of isolation. Dr. Stamatos often reminds her patients to try to separate themselves from the illness. “It’s important to remember that the disorder doesn’t define you,” she says. “It’s not who you are.”
9. There is no cure for CFS. Since researchers are still trying to understand the nature of CFS, no specific treatment has been found. But that doesn’t mean that there’s nothing you can do to alleviate your symptoms. Doctors should develop an individualized treatment plan for you which, ideally, will have a medical team that can include rehabilitation specialists, mental health professionals, and physical or exercise therapists.
10. Lifestyle changes can help. Though there is no cure for CFS, certain behavioral changes can also help alleviate your symptoms. Getting a good night’s sleep (ideally eight to nine hours per night) is key, as inadequate sleep can worsen symptoms. Eating a well-balanced diet and exercising (within your ability, of course) can also help prevent CFS symptoms.
Stamatos recommends a strategy called “pacing,” or scheduling activities in an appropriate manner. “A lot of people living with these chronic conditions find that the more they can plan their lives — which they may not have had to do before — the easier it is,” she says. “They can still manage to get things accomplished in a more measured way.”
Finally, don’t underestimate the power of a strong support system. “I always tell patients to be more willing to ask for help,” Stamatos says. “It doesn’t mean you can’t work or do the things you love to do. It just means doing them differently.”
