A debilitating, painful, long-neglected condition formerly called chronic fatigue syndrome is finally getting the attention it deserves. Here’s why this medical enigma is in the spotlight and how it’s linked to post-COVID-19 condition, better known as “long COVID.”
What is this medical enigma?
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.
It’s estimated that ME/CFS affects more people than Parkinson’s disease, breast cancer, or multiple sclerosis combined in Canada. Approximately 600,000 Canadians have been diagnosed with ME/CFS, which has been described as possibly the last medical enigma of the 21st century. It’s a complex condition with unknown causes, but researchers believe it may be triggered by viral infections about 80 percent of the time.
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.
Find a ME/CFS-experienced healthcare provider
Comorbidity makes it difficult to diagnose ME/CFS simply by excluding other conditions. For instance, someone pre-diagnosed with depression may also have ME/CFS. This makes it crucial to find a healthcare provider who is experienced in diagnosing and treating ME/CFS.
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.
Why sleep is crucial
ME/CFS is different from simply being tired or sleepy. It’s characterized by disrupted sleep and extreme exhaustion from everyday activities.
When we sleep our bodies repair and regenerate tissues, build muscle, and synthesize proteins. Sleep helps the immune system fight infections and illnesses, and it plays a key role in cognitive functions. It helps us consolidate memories, learn new things, and solve problems. It also flushes waste products in our brains that accumulate during the day.
| Nutrient | Benefit |
|---|---|
| Coenzyme Q10 and NADH | Energy production |
| Vitamins A, B, C, and E | Overall health and immune function |
| Magnesium and Zinc | Muscle and nerve function |
| Folic Acid and Essential Fatty Acids | Brain health |
| Lemon Balm and L-Theanine | Relaxation and sleep |
| Ashwagandha | Stress management |
This article was originally published in the November 2024 issue of alive magazine.
Laurie Pawlik-Kienlen is a full-time Vancouver-based freelance writer, alive contributor, and the author of Growing Forward When You Can’t Go Back (Baker House Publishing, January 2019).
Deena Kara Shaffer, PhD
Jenna Demmer
Vaishnavi Dandekar