Chronic Fatigue Syndrome

Called myalgic encephalomyelitis (ME), this condition was previously referred to as chronic fatigue syndrome. ME/CFS is a poorly understood devastating, chronic, multi-symptom disease. Symptoms can mirror those of many other conditions ranging from flu, heart, lung, thyroid, to even psychiatric disorders. However, because there isn’t a single diagnostic test, many sufferers aren’t properly diagnosed for years.

A woman’s disease?

ME/CFS is four times more common in women than men. Being female is a significant and consistent risk factor, and hormones affect how the disease progresses. Women face unique challenges in diagnosis and treatment because of hormonal fluctuations during menstruation, pregnancy, and menopause. Since symptoms are similar to other conditions often faced by women (for example, anemia and fibromyalgia), an accurate, timely diagnosis is difficult.

Additionally, women who talk to their doctors about ME/CFS symptoms are sometimes misdiagnosed with mental health or psychosomatic conditions.

How do you know it’s ME/CFS?

While symptoms of ME/CFS vary from person to person and often fluctuate daily, sufferers commonly report cognitive impairments (brain fog), persistent and unexplained fatigue, extreme exhaustion after physical or mental exercise, sleep disturbances, and muscle pain.

Difficulties with memory, concentration, and information processing can affect the ability to work, study, and perform everyday tasks. Symptoms worsen with physical or mental activity but don’t fully improve with rest.

ME/CFS vs. being overtired

Distinguishing between fatigue and normal tiredness is important because of the possible underlying health issues. Post-exertional malaise (PEM) sets ME/CFS apart from other causes of fatigue. Often referred to as a “crash,” “flare,” or “relapse,” PEM can be triggered by minimal cognitive or physical exertion. ME/CFS symptoms last longer and are more intense than normal fatigue.

Dr. Nina Muirhead is a ME/CFS researcher and surgeon who lives with this disease. She says PEM can be triggered by something as simple as brushing your teeth. Even minimal cognitive or physical exertion can lead to an energy crash.

If you’ve been experiencing ME/CFS-like symptoms for more than six months, start tracking your symptoms. Jot down their frequency, severity, and duration. Include factors that seem to worsen or improve your symptoms. Share this information with your healthcare provider and/or doctor.

The gut-brain connection

A growing body of research suggests a strong link between gut health and ME/CFS. Microorganisms in the gut produce neurotransmitters, hormones, peptides, and other molecules that influence brain function and behaviour. Imbalances in microbiota disrupt a healthy gut-brain connection, potentially leading to inflammation.

Deficiencies in nutrients, such as vitamins C and B-complex, magnesium, zinc, folic acid, L-carnitine, and coenzyme Q10, have been associated with the severity and exacerbation of ME/CFS symptoms. Diet and nutritional supplements may help alleviate some of the impacts.

Important insights

The diagnostic process

Healthcare providers typically diagnose ME/CFS through a process of exclusion. Other conditions with similar symptoms are eliminated first, making the process lengthy, costly, and frustrating.

The brain’s response

Results from functional magnetic resonance imaging (fMRI) brain scans showed that people with ME/CFS had lower activity in the temporal-parietal junction. This may disrupt how the brain signals the body and decrease its ability to sustain energy.

Exercise worsens symptoms

Unlike many chronic conditions where exercise is beneficial, exercise and activity-based programs can exacerbate symptoms. Some ME/CFS sufferers don’t easily convert the body’s fuel into fats and sugars, which are essential for energy. Post-exertional malaise can last for days, weeks, or months after activity.

ME/CFS will increase

Due to the long-term effects of COVID-19, ME/CFS is expected to rise drastically. Long COVID and ME/CFS have shared pathways, overlapping symptoms, and similar underlying mechanisms and potential treatments.

Both diseases exhibit low levels of adenosine triphosphate (ATP) due to mitochondrial dysfunction, explaining chronic fatigue and other symptoms. They both often co-occur with other conditions, such as orthostatic intolerance (dizziness, lightheadedness, fainting, palpitations, nausea, and fatigue when standing).

Research on long COVID might illuminate the underlying causes and treatments of ME/CFS. Both diseases can be difficult to diagnose because of complex underlying mechanisms, and both urgently need effective treatments.

This article was originally published in the November 2024 issue of alive magazine.