Today I’ll discuss the symptoms of CFS and why this diagnosis is so confusing. Ironically, part of the confusion about CFS comes from its name. The focus on fatigue tends to overshadow the numerous other systemic symptoms associated with CFS. Other names include: Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomyelitis or Myalgic Encephalopathy (ME; the most commonly used term outside the United States), and Chronic Epstein Barr Virus Syndrome (CEBV). My son Brian, afflicted with CFS for nearly 4 years, has said that the acronym CFS is fine, but “it should stand for crippling fatigue syndrome.”
The fatigue of CFS is very different from the everyday “I’m tired” complaint that sleep-deprived, middle-aged women juggling multiple roles, stressors, and activities may feel. . .or that teenagers who have stayed up way too late online complain of the next morning. Classically and characteristically, it is fatigue that does not result immediately from exertion, is not relieved by rest or sleep, and it results in a significant reduction in previous activity levels. Often, it is brought on by physical exertion in the previous 24 hours; this is called “post exertional fatigue”. This is a difficult concept for most people to understand. When Brian is having a “good day”, for example, he might be able to play soccer for 30 minutes and look like one of the guys. But for the next 24–72 hours he’ll pay a price: usually an exacerbation of many of his other CFS symptoms as well as an overwhelming fatigue.
Other classic symptoms CFS include muscle pain (which may be related to fibromyalgia), “brain fog,” sore throat, headaches, dizziness, poor balance, impaired memory and concentration, headaches, cold/heat intolerance, food or chemical sensitivities, and unexplained general malaise. While the number of hours spent sleeping is often significantly prolonged, it is frustratingly unrefreshing.
One of the most confusing things about CFS for those who don’t live with it (in themselves or in a loved one) is that people with CFS “look fine” when their symptoms are not exacerbated. How can someone look well when they have such a serious illness? How can they feel fine one minute and then seem to run out of energy the next? The best way I can explain this is by using the example of a brand-new car. You can drive that car all day and it will look great. But, if you run out of gas, the car will suddenly not go any further. It will still look fine, but it won’t run. If the battery is working, all of the electrical functions will also work fine: the car just won’t go. Similarly, in people with CFS–whether they’re adults, children or teens—once they run out of energy, they can’t go. Fortunately, with the car, we can replace the gas. With proper maintenance and regular refilling, the car should run just fine. In people with CFS, however, we haven’t found a treatment which can replace “the gas”. All that these patients have at their disposal are attempts at regular maintenance: limited activities; frequent rests or naps; strict sleep schedules;, proper nutrition and hydration; vitamin supplements; mild, graduated exercise programs (when well enough); and taking measures to avoid infections, which can often trigger a relapse.
Because the cause of CFS is unknown, it is difficult to classify. We do know what CFS is NOT, however: it is not a psychiatric disorder or a manifestation of depression, even though many patients with CFS become depressed as a result of having a chronic, difficult to manage illness with no end in sight. We also know that CFS is NOT an ongoing infection and it is NOT contagious. The latest research suggests that CFS may have a genetic predisposition which may be triggered by any viral or bacterial illness, head trauma or unknown environmental causes.
CFS can affect people of any age, race, or socioeconomic group. It most commonly affects women 20–50; women are affected about four times more commonly than men. In teens and children, males and females are equally affected. We do not have good data about how many teens and children there are who may be affected with CFS. Like adults, however, we suspect that 85% of patients may not have been properly diagnosed.
There is also a wide range of presentation of CFS cases: some patients may be bedridden; others can work or attend school at least part time, but any physical exertion may worsen their symptoms. US women’s world cup soccer champion Michelle Akers was the most well known exception: she managed to play elite soccer only with constant medical attention and frequent intravenous infusions, often at half-time during a game! Unfortunately, many CFS sufferers are denied adequate care or disability insurance benefits because doctors, teachers, and employers fail to take this condition seriously.