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.
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.
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.)
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. 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. 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.
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.”