Conway McLean, DPM, Journal columnist

Many Americans complain about being tired, over-worked, and basically stressed out. Compared to our European counterparts, we are. We work more hours per day and more days per year. But here we are referencing the kind of exhaustion relieved by a relaxing weekend at home. But some aren’t so lucky, regularly experiencing a fatigue so profound they have to plan rolling over in bed.

Once considered a form of hysteria, and now recognized as a real medical condition by many experts, chronic fatigue syndrome causes profound tiredness, which can, on occasion, make even the simplest movement impossible. Chronic fatigue syndrome is an illness with a long history of controversy. We know it occurs more frequently in women, with some estimates claiming as much as one out of a hundred people have some form of it. It’s believed roughly a quarter of them have symptoms so severe they are, at some point, housebound as a result.

Extreme fatigue, lasting more than 6 months, is the hallmark of chronic fatigue syndrome, although sleep abnormalities are extremely common. The fatigue may worsen with activity but is not relieved with rest. Cognitive dysfunction, literally difficulty thinking, is a common symptom, as is an unusual sensitivity to light. Joint pain is often reported, along with mood swings and depression.

The name currently used for the disease is not a popular one with those afflicted, since most agree it trivializes the illness. Surveys have demonstrated the title minimizes the seriousness of the condition, one easy to take lightly. An older term coming back into vogue is myalgic encephalopathy (summarized as ME/CFS). This was first seen in the medical journals following an outbreak of the condition in 1955.

What is at the root of myalgic encephalopathy/chronic fatigue syndrome? What system is faulty, dysfunctional? The World Health Organization officially recognized it as a neurological disease in 1969 at which time ME was the label of choice. Over the years other titles have been created including benign myalgic encephalomyelitis and epidemic neuromyasthenia.

Opinions vary as to the root of the problem, what organ system is at fault. In the 1950s, it was felt to be a neuro-immune-muscle disease, but the psychiatric profession became the predominant specialty researching ME/CFS, reclassifying the disease as a disorder of “mass hysteria.” Only recently have neuroscientists, immunologists and relevant specialties started to look again at what was once defined as a mental health disorder.

Various diseases are associated with significant, lasting fatigue, but it appears ME/CFS is not part of this general category, rather it appears to be an isolated and distinct problem. Although the cause remains obscure, there seems to be environmental factors. This may explain the outbreaks that have occurred, documented over the course of the last century. Many are unaware that ME/CFS can occur in epidemic form, although the pathogen responsible for these outbreaks remains unidentified. The most likely candidate seems to be an enterovirus (a particular type of virus carrying only RNA and no DNA).

Although diagnosis remains challenging, detailed analysis has revealed structural and functional changes in several organ systems. Findings include abnormalities in brain stem metabolism, altered brain structure, as well as reduced blood flow to certain areas of the brain. Apparently, these physiologic changes are consistent with a neurologic illness, but not a psychological or mental illness (e.g. depression).

People with ME/CFS have an abnormal response to exercise. Impaired cellular energy production has been noted. Variations have been observed in the immune system including a decrease in the activity of some vital cells that are part of our body’s defense system. Hormonal changes, a critical part of the endocrine system, are seen such as lower levels of our primary stress hormone, cortisol.

Probably the most exciting development on the topic is the discovery of an association with a person’s gut microbiome. Several recent studies have added further evidence connecting disruptions in gut microbiome with ME/CFS. The gut microbiome is the complete collection of bacteria, viruses, and fungi that live in our gastrointestinal system and are an essential component of human health. The microbiome has emerged as a potential contributor to ME/CFS. Recent findings indicate certain differences in gut microbes could serve as biomarkers for ME/CFS, potentially providing the first laboratory test for diagnosing the condition.

Controversy surrounds ME/CFS, as it has done since its discovery. Many physicians do not recognize it as a real disease, and there is a lack of consensus on its prevalence. Disagreement rages over the mechanisms of chronic fatigue syndrome, nor can we agree on how best to diagnose the condition. As to treatment, they are predictably palliative since we don’t understand the specifics, the process leading to this profoundly disabling illness. At least we are certain of one thing, myalgic encephalopathy is not “all in their heads.”

EDITORS NOTE: Dr. Conway McLean is a podiatric physician now practicing foot and ankle medicine in the Upper Peninsula, having assumed the practice of Dr. Ken Tabor. McLean has lectured internationally on surgery and wound care, and is board certified in both, with a sub-specialty in foot orthotic therapy. Dr. McLean welcomes questions, comments and suggestions at drcmclean@penmed.com.