What is chronic fatigue syndrome? How patients live with the disease

Chronic fatigue syndrome, also known as myalgic encephalomyelitis, was once considered a rare disease — if it was even considered a real disease at all.

People who complained to their doctor about feeling sick and exhausted were often accused of hypochondria, and their symptoms were written off as the “yuppie flu.”

But the Centers for Disease Control and Prevention released a report last week citing research that revealed 3.3 million American adults have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), making the disease more common than was previously thought.

It’s “a complicated disorder,” according to the Mayo Clinic, and it causes extreme fatigue that lasts for at least six months.

There’s no known cause of ME/CFS, though it might be triggered by a range of different factors, including a bacterial or viral infection, an injury or surgical procedure or severe emotional trauma.

The disease can also run in families, suggesting that it might have a genetic cause.

Symptoms of ME/CFS

The symptoms of ME/CFS can vary from one person to the next, and from day to day. In addition to fatigue, symptoms may include:

• Extreme exhaustion after physical or mental exercise
• Problems with memory or thinking
• Dizziness that worsens with moving from lying down or sitting to standing
• Muscle or joint pain
• Unrefreshing sleep
• Tender or swollen lymph nodes
• Headaches

There are many overlapping symptoms between ME/CFS and fibromyalgia — a disorder characterized by muscle and joint pain — leading some experts to suggest that the two disorders might be different aspects of the same disease.

Lack of support can be a barrier

An added burden to those with ME/CFS is the lack of recognition from friends, family and healthcare professionals. No test or tool can provide a definitive diagnosis, so it can be challenging to get any help.

“I traveled out of state to see an ME/CFS specialist. When I found this doctor, I felt like I was finally supported,” said “Marlene,” a former high school athlete, on the CDC’s “Voice of the Patient” website.

“I also found an adult infectious disease doctor locally who was willing to work with the ME/CFS specialist to come up with the best treatment plan for me,” she added.

Other patients describe similar difficulties with finding support from medical professionals.

“My symptoms started quickly with a sinus infection and did not stop. Each month, there was something new. I would start to get tired for no reason and had a cold that turned into walking pneumonia,” said “Max,” a former hard-charging pharmaceutical executive.

“I was not unlike the many who met with physicians for more than a decade, only to be told it was my imagination,” he said. “Most of my friends don’t believe I am sick (faking that I am OK has become a habit) because I don’t look sick to them.”

Living with ME/CFS — what experts advise

People with ME/CFS sometimes have worsening symptoms after physical or mental exertion, an experience known as post-exertional malaise. It may start within 24 hours after the activity and can last for weeks.

Because there’s no known cure for ME/CFS, medical professionals advise that people living with the disease try “pacing” their activity level to avoid post-exertional malaise. Pacing involves moderating their exertion levels to find a balance between activity and rest.

How medicine can alleviate some pain and suffering

Some medications also can help relieve symptoms of ME/CFS, including antidepressants to reduce the suffering that can occur with any chronic illness.

Some over-the-counter pain relievers might also help with symptoms. And prescription drugs including pregabalin (Lyrica), duloxetine (Cymbalta), amitriptyline or gabapentin (Neurontin) — which are also prescribed for fibromyalgia — might also alleviate pain and fatigue.

Medications are also available to help with orthostatic intolerance, a condition common with ME/CFS that causes people — especially adolescents — to feel faint or nauseous when they stand or sit upright.

Accept a level of ‘new normal’

Despite these therapies, many people with ME/CFS still struggle with day-to-day living.

“I find it takes strength knowing a chronic disease that is not curable is actually controlling you, and that there are physical, as well as mental costs to pay for trying to be ‘normal,’” said Max.

“For this reason, I focus each day on managing the symptoms ME/CFS presents. I still promise myself to be driven and passionate but, mostly, to accept my ‘new normal.’”