The Toll of Chronic Fatigue Syndrome

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a illness that confounds both physicians and patients. Most people spend years chasing down a diagnosis to explain their peculiar combination of symptoms. That’s because many of them coincide with those of other diseases.

Annette Fornos, M.D., an internist at the University of Miami Health System, has devoted years of her practice to treating ME/CFS patients find relief through functional medicine, a holistic, patient-centered approach that focuses on addressing the root cause of an illness, taking into account genetics, lifestyle and environmental factors.

The fatigue that is the hallmark of the condition is not your run-of-the-mill exhaustion, she explains. After a physically or mentally demanding situation, most people will recover with appropriate rest.

A person with ME/CFS never bounces back, regardless of how much sleep and rest he or she might get. 

“This is not just being tired, but an absolute and debilitating fatigue that doesn’t go away,” she adds. “Sleep and rest are not restorative. It doesn’t matter how much they try, people with [ME/CFS] still have no energy.”

About 3.3 million people in the U.S. have chronic fatigue, but the overwhelming majority are undiagnosed, according to the Centers for Disease Control and Prevention. Worldwide, up to 24 million people suffer from the condition. Women are more likely than men to develop ME/CFS, and white non-Hispanics have the highest prevalence. The incidence rate also increases with age, with many patients being in their 50s and 60s.

Dr. Fornos says she has found that the breakdown of her patients don’t conform to the national demographics.

Many are from other states and come to her practice at the University of Miami Osher Center for Integrative Health, a center that specializes in the holistic model of care, because so few places offer care for ME/CFS.

“In my experience, I have equal gender distribution,” she says “I also have patients in their twenties and patients older than their 60s.”

Its myriad symptoms distinguish ME/CFS. The primary trademark is the extreme and unexplained fatigue that lasts more than six months. It cannot be attributed to an underlying medical condition. Another notable characteristic: ME/CFS will worsen after ordinary physical or mental exertion. This is known as post-exertional malaise.

Other symptoms of ME/CFS include:

• brain fog
• gastrointestinal issues
• problems retrieving words or processing thoughts
• muscle or joint pain
• sleep dysfunction
• immune dysregulation
• depression
• headaches
• flu-like feelings of sore throat and chills
• hypersensitivity to emotional or physical stimuli such as sounds, smells, foods and light

But not all patients present with the same signs or the same levels of severity.

“The tolerance [for exertion] can vary tremendously,” Dr. Fornos says. “Some have enough energy only to shower once a week. Some can sit up for two hours, and others can stand for only a few minutes. In severe cases, some have a very difficult time getting out of bed.”

Also, the frequency of symptom presentation varies from patient to patient and even daily for each person, depending on various factors that can trigger the fluctuations.

To receive a clinical diagnosis of ME/CFS, a patient must meet certain criteria:

• debilitating and profound fatigue that lasts more than six months and does not improve with rest
• post-exertional malaise
• unrestorative sleep

Dr. Fornos also looks for orthostatic intolerance — dizziness or fainting when a person stands up from a sitting or lying position — and/or some kind of cognitive impairment.

While no one has pinpointed the exact cause of ME/CFS, a seven-year study published in Nature Communications earlier this year concluded that the multi-organ, multi-system disease was primarily a brain disorder, most likely triggered by changes in the gut microbiome and by immune dysfunction. This underscores what Dr. Fornos and others who treat the disease have noted: many ME/CFS cases have been preceded by an acute viral infection, the Epstein-Barr virus being the most notable.

Traditional treatment aims to alleviate the symptoms with medications. It’s also important to offer help in managing the steep emotional toll the disease takes on patients and their families, Dr. Fornos says.

ME/CFS is difficult to understand for clinicians, let alone for patients. It’s also very scary, but those who accept and learn more about the disease tend to do better.

– Dr. Annette Fornos

As a functional medicine physician, Dr. Fornos goes beyond symptom management. She addresses the disease with a combination of complementary therapies that drill down to uncover what is happening with a patient’s immune, cardiovascular, GI and autonomic nervous systems and how those factors might be contributing to the condition and its flare-ups.

While a person may not return to pre-onset energy levels, it is possible to recover some lifestyle activities.

Dr. Fornos had a patient who could barely walk to the door of the clinic. With treatment, he is now able to visit family. Another patient could get out of bed once a day for only a few minutes. Now that period has been extended to two hours. Some patients have even returned to work with the proper accommodations.

“It may not sound like a big thing to us,” she says, “but it’s huge for them.”

Ana Veciana-Suarez is a regular contributor to the University of Miami Health System. She is an acclaimed author and journalist who has worked at The Miami Herald, The Miami News, and The Palm Beach Post.

Tags: cfs symptoms, Dr. Annette Fornos, fatigue syndrome me cfs, Osher Center for Integrative Health, physical or mental activity