About Myalgic Encephalomyelitis

Myalgic Encephalomyelitis (My-al-jik En-cef-al-o-mile-eye-tis), also known as Chronic Fatigue Syndrome (ME/CFS), is an extraordinarily complex and disabling, chronic physical illness affecting nearly every bodily system. There were recommendations, to rename it “Systemic Exertion Intolerance Disease” (S.E.I.D.), but that name is mostly not used.

Myalgic Encephalomyelitis (M.E.) was recognized decades ago, and in 1988, was unfortunately renamed Chronic Fatigue Syndrome (CFS), but M.E. is again replacing the term CFS as CFS trivializes the illness and stigamitizes individuals who suffer from it.

From the Doctors With M.E. website: “ME is sometimes referred to by the problematic legacy term “chronic fatigue syndrome” or the acronym ME/CFS. The incomplete and stigmatising nature of the term chronic fatigue syndrome is frequently compared to previously misapplied “hysterical paralysis” terminology used for multiple sclerosis patients. The double-barrelled acronym ME/CFS exists to bridge past terminological failures and the original disease name, meaning many professionals and patients are more comfortable with the term ME.”

It is also very important NOT to confuse or to call this illness “chronic fatigue,” because chronic fatigue can be part of many other illnesses such as cancer, Rheumatoid Arthritis and other systemic arthritic conditions, multiple sclerosis, and many more!

Myalgic Encepahomyelitis/Chronic Fatigue Syndrome, on the other hand, has a distinct set of criteria and other symptoms, with (pathological) fatigue only being one aspect of the illness.

ME/CFS is a Chronic Immunological and Neurological Disease (CIND). It is not a psychological illness!

M.E. is severe enough that 75% of patients will be unable to work because of it, and 25% are homebound or bedridden. People with M.E. usually experience a substantial loss of physical and sometimes cognitive function (IQ is intact, but can experience slowed processing time, brain fog, word finding difficulties, reduced concentration, etc.). The average person with M.E. scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer.

No single laboratory test can diagnose Myalgic Encephalmyelitis/Chronic Fatigue Syndrome at this point in time. Post-Exertional Malaise (PEM), a flare of symptoms and the appearance of new or worsened symptoms after exertion, often presents ~24-48 hours after the triggering event. PEM is the hallmark feature of M.E. While PEM is often studied concerning physical activity, mental overexertion (cognitive and/or emotional) or sensory or orthostatic overloads may also initiate PEM. Another significant symptom of M.E., is that it can be a relapsing-remitting condition, it may plateau, or it may continue to get worse. Individual patients experience substantial fluctuations in their well-being daily, week to week, and month to month.

ANYONE can get ME/CFS, which is most common in people between 40 and 60 years old. However, the illness also affects children, adolescents, and adults of all ages. Among adults, women are affected more often than men (ratio of 4:1). Many people with ME/CFS have not been diagnosed, especially among minorities. Many reasons people with ME/CFS do not have the proper diagnosis exist, including a lack of education about ME/CFS among physicians and other healthcare providers, who are also in a unique position to recognize the symptoms their patients describe.

Doctors and researchers continue to look for the cause or causes of ME/CFS, and there is evidence that there could be sub-sets of the illness. Because of this, there is no ONE specific test to be able to diagnose ME/CFS at this time. To diagnose ME/CFS, doctors must consider the patient's symptoms and medical history. Other conditions could cause many of the symptoms (with exception of Post-Exertional Malaise which is unique to ME/CFS).

In addition, there is no cure or an approved treatment for ME/CFS, but often healthcare providers can treat or help manage some symptoms or the co-morbid diagnoses often seen in people with ME/CFS. Treating symptoms can provide short-term relief for some patients with ME/CFS, but not others.

There are also additional considerations in the section on care for people with severe or very severe ME/CFS.

Definitions of severity are not clear-cut because individual symptoms vary widely from one individual to the next and can fluctuate within the same individual, and some may have some more severe symptoms than others. Some individuals also fluctuate between the categories below, depending on the circumstances. The descriptions below provide a guide regarding the level of impact of symptoms on everyday functioning.

In other words, these are general categories intended to convey the wide spectrum of disease severity and functional impairment seen in ME/CFS.

“People make the mistake that just because they see me outside of my home sometimes, that I am okay and “better.” They don’t see me before or after when I need to rest to get through simple, everyday tasks, or on my worst days when I’m in bed for days to weeks after a “crash” (flare) of symptoms from using up more energy than I had.” Anonymous, Person with ME fluctuating between mild and moderate levels #MillionsMissing

Mild ME/CFS

People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education but, to do this, they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to rest and cope with the rest of the week, so quality of life can be negatively affected. Napping whenever possible is often used to cope with the demands of life. While the term "mild" is used, mild ME/CFS still entails a substantial level of functional impairment compared to that of a healthy person.

Moderate ME/CFS

People with moderate ME/CFS often have reduced mobility. They are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for one or several hours. Their sleep at night is generally poor quality and disturbed.

Severe ME/CFS

People with severe ME/CFS cannot do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a powerful and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

Very severe ME/CFS

People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to sensory stimuli. Some people may be unable to swallow and need to be tube fed.