Chronic fatigue syndrome is a commonly misunderstood disorder. Because of this, patients with CFS are also misunderstood, and this could affect their medical treatment as well as the way they are treated by friends, family, coworkers, employers and medical professionals.
The disorder has been called chronic fatigue syndrome since 1988, but it wasn't until 1994 that CFS research experts agreed to a definition of the disorder: A patient must have severe chronic fatigue lasting at least 6 months and also have 4 or more of these symptoms: problems with short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain without swelling or redness, headaches unlike those they have had before, unrefreshing sleep, and post-exertional malaise (worsened fatigue with mental or physical exertion) lasting more than 24 hours (www.cdc.gov/cfs/consumers.htm).
Armed with this definition of chronic fatigue syndrome is, let's discuss 4 misunderstandings about CFS.
Misunderstanding 1
We may think that there was no such thing as CFS before the 1980s, that it's a relatively new malady brought on by pollution or other modern problems. But, according to a 1999 article published in the British Medical Journal, the disorder, which has gone by various names, has been around since the Crimean war (ie, the 1850s).
Misunderstanding 2
We may also believe that people who say they have CFS aren't really sick. In the workplace, coworkers and employers may think they're lazy and are "telling tales" to avoid work. Friends and loved ones may believe they're just faking it to attract attention. Husbands and boyfriends may assume that it's all in their head. Because women are diagnosed with CFS 2 to 4 times as often as men (www.mayoclinic.com/health/chronic-fatigue-syndrome/ DS00395), some may assume that it's related to that "female problem" that occurs once a month. Unfortunately, even some doctors might look at their patients with a jaundiced eye.
The reality is that CFS makes the person suffering from the disorder feel as if he's come down with the flu, drains his energy, and can linger for years. CFS may occur after an infection, a stressful period of time, or without any apparent cause. The disorder is different for each person, and can be accompanied by a wide range of other problems, including allergies, chronic cough, diarrhea, earache, irregular heartbeat, jaw pain, chills and night sweats, depression, and blurry vision. Symptoms may come and go over time, and some people may recover while others will become worse (mayoclinic.com). In other words, while it may be hard to pinpoint which symptoms are related to CFS and impossible to know how long a patient will be sick, someone with CFS is truly sick and needs the support of his friends, family, and coworkers.
Misunderstanding 3
Some of us may reason that it ought to be easy to diagnose chronic fatigue syndrome. After all, if you have CFS, you'd be tired all the time. In truth, however, coming to a diagnosis of CFS isn't easy, and can take some time. The diagnosis is based on exclusion, or the ruling out of other diseases or conditions that could cause a patient's fatigue and other symptoms. The difficulty lies in the fact that CFS has the same signs and symptoms as many other diseases and there is no blood test or x-ray to easily and definitively prove that a patient has CFS.
Misunderstanding 4
Finally, some of us may assume that treatment for CFS is simple: get more sleep. More sleep is not the only answer, however, and there is no one treatment that will work for everyone with CFS. Patients will probably be told to avoid too much physical and psychological stress, and to gradually increase exercise. Other possible treatments are cognitive behavior therapy (altering negative beliefs and behaviors) and medications and other treatments for depression, allergies, and low blood pressure. Some complementary therapies can help patients with CFS, including deep-breathing and muscle-relaxation techniques, massage and healing touch, and movement therapies such as stretching, yoga and tai chi.
There's nothing easy about chronic fatigue syndrome, whether it's finding the correct diagnosis, treating the disease, living with it, or dealing with suspicions of others that CFS just doesn't exist. Over the next several years, we can hope that progress will made in each of these aspects of the disorder.