Imagine telling someone you have a disease only for them to roll their eyes or tell you that you’re imaging things. Welcome to the life of the hundreds of thousands of American women living with chronic fatigue syndrome. Officially dubbed myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS) is one of those diseases that’s long befuddled the medical community. There’s no known cause, and doctors can’t just run a blood test that confirms you have CFS. Even the symptoms—from fatigue that makes day-to-day activities difficult to muscle aches, headaches, and joint pain—are often associated with other diseases, making chronic fatigue that much harder to diagnose. Even more frustrating if you have ME? The internet is rife with articles that further the myth that CFS is all in a patient’s head rather than a very real and very serious illness. Currently 1 million Americans have been diagnosed with CFS, and women lead the pack in terms of diagnoses—we’re two to four times more likely to have ME.
So why the debate?
Although the term has only recently made its way into the mainstream, the medical community has been seeing chronic fatigue crop up in patients for decades. In the 1800s and even into the 1900s, it was often written off as a “nervous exhaustion.” Female patients, in particular, were pooh-poohed as the weaker sex and their symptoms considered signs of weakness. Sexism (and skepticism) about the condition is hardly a thing of the past. It’s only been in recent years that scientists have made serious headway in ME studies, enough to begin to quiet the detractors who call the disease psychosomatic. That myth that was blown wide open by doctors in Australia in early 2017 when researchers at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases found a dysfunctional cell receptor in the immune system they say is to blame for ME. Another win for people with this condition came in March 2017, when researchers at Stanford University published their own study that showed the immune cells of ME sufferers don’t recover as well as those of healthy individuals. With the National Institutes of Health doubling funding for ME research in 2017, the debate over whether the disease is real seems to be finally rounding the bend into “believe them” territory.
What does ME do?
Of course, if you have ME, there is no question the disease is real. Sufferers experience a drastic decline in their ability to do activities that were normal before the illness. And when they do try to exert the same sort of energy they exerted pre-ME—taking on tasks as simple as going to the mall—they’re often hit by post-exertional malaise (PEM), a crashing of the body that can keep them housebound for days or even weeks. The official symptoms to look for, according to the U.S. Department of Health and Human Services, include:
- Feeling extremely exhausted for more than 24 hours after physical or mental exercise
- Not feeling refreshed after sleeping or having trouble sleeping
- Having a hard time concentrating or problems with attention and memory
- Feeling dizzy or faint when sitting up or standing (due to a drop in blood pressure)
- Muscle pain or aches
- Pain or aches in joints without swelling or redness
- Headaches of a new type, pattern, or strength
- Tender lymph nodes in the neck or under the arm
- Sore throat that is constant or goes away and comes back often
Although men can and do suffer from chronic fatigue, ME diagnoses in women are far more common than they are in men. And women with ME tend to have more severe symptoms than men with the disease. A woman’s risk of having both chronic fatigue and fibromyalgia concurrently is nearly double that of a man. Issues such as widespread pain, muscle spasms, dizziness, sexual dysfunction, Raynaud’s phenomenon, morning stiffness, and drug and metal allergies are all less likely to show up in men with the disease than they are in women. But like the still-elusive cause for the condition, the reason that it’s more prevalent in women remains a mystery. Unfortunately, gender studies researchers say women are often blamed for bringing the condition on themselves as they’re blamed for being both too high strung and too weak.
What can you do?
Only a medical professional can diagnose chronic fatigue syndrome. Typically fatigue symptoms must have begun at least six months prior to diagnosis, and a patient will have to have at least four other symptoms from the list to get a diagnosis. Because the symptoms also crop up with other diseases, the diagnosis process may take time, as doctors have to rule out other diseases and conditions. If your physician determines you do have ME, be aware there is no cure, but there are medicines that can be used to alleviate many of the symptoms.