Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) or ME/CFS is a chronic fluctuating neurological condition that affects several bodily systems, most notably the nervous and immune systems. ME/CFS affects an estimated 836,000 – 2.5 million Americans, a statistic set to grow as more and more people with long COVID meet the diagnostic criteria for ME/CFS.
People with ME/CFS may suffer from debilitating fatigue, cognitive impairment, and other symptoms associated with post-exertional malaise (PEM), the inability of the body and brain to recover after expending even minimal amounts of energy.
Since not everyone will have the same symptoms, it is vital to avoid comparing one individual with ME/CFS to another. People with ME/CFS may have very different experiences with the disease and how long their symptoms last. Some do not fully regain their pre-illness state but recover sufficiently to have meaningful lives. Others remain severely ill for years and never recover.
Workwell Foundation exercise physiologists provide expertise to help with ME/CFS, fibromyalgia, and other fatigue-related conditions. We collaborate with physicians and attorneys to provide documentation based on objective testing that can help people secure disability benefits. Our mission is to focus on research concerning the functional aspects of ME/CFS to better understand the biological basis for post-exertional malaise and fatigue.
What is Myalgic Encephalomyelitis or Chronic Fatigue Syndrome?
The term “Myalgic encephalomyelitis” was initially used to describe a cluster outbreak of an unknown disease at London’s Royal Free Hospital. It portrays some of the disease’s most prominent features : myalgia (muscle pain), encephalo (brain), myel (spinal cord), and itis (inflammation). The World Health Organization coined the term “Benign myalgic encephalomyelitis” in 1969. However, very severe ME is anything but benign and can cause death, often from complications of malnutrition. Many studies have found that people with ME are at an increased risk of death by suicide due to neglect, isolation, and financial losses. ME/CFS is known as the “disease with a thousand names.” Numerous names have been used to characterize the disease such as atypical polio, Icelandic disease, benign ME, epidemic neuromyasthenia, chronic fatigue syndrome (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), and systemic exertion intolerance disease (SEID). These days the terms “myalgic encephalomyelitis” and “chronic fatigue syndrome” are used interchangeably or with the abbreviation ME/CFS.What are the Symptoms of ME/CFS?
A 2015 report from the Institute of Medicine, now National Academy of Medicine, highlighted three core symptoms necessary for diagnosis.1. Significantly reduced capacity to perform tasks that were common before the illness.
This decline in activity level is accompanied by fatigue and must persist for at least six months. ME/CFS patients experience a kind of exhaustion that differs significantly from simply being tired. The fatigue of ME/CFS:- May be severe
- Is not the consequence of an exceptionally challenging activity
- Is not alleviated by rest or sleep
- Was not an issue before being unwell (not life-long)
2. Post-exertional malaise (PEM) is an intensifying of ME/CFS symptoms following physical or mental activities that previously would not have caused an issue.
People with ME/CFS frequently refer to this as a “crash,” “relapse,” or “collapse.” During PEM, ME/CFS symptoms may worsen or manifest for the first time, including cognitive impairment, difficulty sleeping, sore throat, headaches, vertigo, and extreme fatigue. A crash may need days, weeks, or even longer to recover. Occasionally, patients may be confined to their homes or beds. People with ME/CFS may be unable to predict a crash or its duration.3. Sleep problems
Even after a full night’s sleep, individuals with ME/CFS may not feel better or any less fatigued. Some may experience difficulty falling and staying asleep. Besides these core symptoms, one of the two remaining symptoms listed below must be present for a diagnosis:- Cognitive impairment
- Orthostatic intolerance
Other Common Symptoms of ME/CFS
Many, but not all, ME/CFS patients have other symptoms:Pain
The type of pain, its location, and its severity vary greatly. The pain individuals with ME/CFS experience is not caused by an injury. Common types of pain in ME/CFS:- Muscle pain and aches
- Joint pain without swelling or redness
- Headaches, either new or worsening
- Shortness of breath
- Muscle weakness
- Irregular heartbeat
- Allergies and sensitivities to foods, chemicals, odors, light, or noise
- Painful throat
- Digestive issues, like irritable bowel syndrome
- Tender Lymph nodes in the armpits or neck
- Chills and night sweats
What are the Causes of ME/CFS?
The precise etiology of ME/CFS is still uncertain. Some people may be predisposed to the disorder from birth, which is then triggered by a combination of factors. Potential triggers may include:- Viral infections
- Immune system issues
- Hormonal imbalances
- Physical or emotional trauma
What are risk factors associated with ME/CFS?
Factors that may increase your risk of ME include:- Age: ME/CFS can affect anyone at any age. However, it primarily affects young to middle-aged individuals.
- Sex: Women are diagnosed with ME far more frequently than males, but this might be because they are more inclined to disclose their symptoms to a doctor.
