What is ME?
Myalgic encephalomyelitis, commonly referred to as just ME or ME/CFS, is a chronic, complex, neuroimmune disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. ME can severely impair patients’ ability to conduct their normal lives and there is no cure or recommended treatment.
“Myalgic Encephalomyelitis (ME): a complex, acquired multi-systemic disease”
“Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.”
“Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period.”
From the National Institute of Health:
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction (Institute of Medicine, 2015). Individuals with ME/CFS experience a range of symptoms including significant impairment in function, post-exertional malaise, sleep impairment, cognitive issues, pain, orthostatic intolerance, flu-like symptoms, sensory intolerance, gastrointestinal and genitourinary issues. Post-exertional malaise (PEM) is the hallmark of the disease in which even trivial amounts of activity result in a prolonged exacerbation of symptoms and a further reduction in function.
The cause(s) of ME/CFS are unknown, but many individuals with the disease remain ill after an acute infection with symptoms that persist for six or more months. There is no diagnostic test or FDA-approved treatment for ME/CFS.
At least one-quarter of individuals with ME/CFS are bedbound or housebound at some point in the disease and most never regain their pre-disease level of functioning. ME/CFS strikes people of all ages and racial, ethnic, and socioeconomic groups, and is diagnosed two to four times more often
in women.”
Within a very short period of time many patients experience a profound reduction in activity even when those individuals led healthy active lives. Numerous stories exist of patients who regularly participated in strenuous activities like overnight backpacking, marathons, and other demanding activity only to be reduced to long days being bedbound with no treatment able to alleviate the extreme fatigue. In fact, most treatments, especially in the early days of recognizing the disease, only increased the fatigue sometimes permanently. It is important to be sure you find a physician that has a basic understanding of ME before seeking advice on treatment options.
Classification: Myalgic encephalomyelitis has been classified as a neurological disease by the WHO since 1969. WHO stipulates that the same condition cannot be classified to more than one rubric because, by definition, individual categories and subcategories must remain mutually exclusive.
ME/CFS has a distinct diagnosis code in the ICD-10-CM (the International Classification of Diseases modified for use in the United States). The code – G93.32 – applies to “myalgic encephalomyelitis/chronic fatigue syndrome,” “chronic fatigue syndrome,” and “myalgic encephalomyelitis.” G93.32 is the best code for providers to select for their patients with ME/CFS.
Living with ME
The ME community
Meet some ME sufferers and hear what it is like to live with ME from their everyday lives.
A Brief History
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has a long history with many names and misdiagnoses.
Early history
- In the 1600s, Thomas Sydenham called the illness “Muscular Rheumatism”.
- In the 1800s, the illness was called “neurasthenia” and was often considered psychosomatic.
- In the 1930s, there were outbreaks of the illness in Los Angeles and Akureyri, Iceland.
- In 1955, the illness was called “benign myalgic encephalomyelitis” after an outbreak in London.
- Myalgic encephalomyelitis was first classified as a neurological disease when the World Health Organization published the of ICD-8 classification manual in 1969.
- ME has been called/described as atypical poliomyelitis, benign myalgic encephalomyelitis, epidemic neuromyasthenia, “Raggedy Ann Syndrome”, Chronic Epstein-Barr Virus, systemic exertion intolerance disease, Chronic Fatigue Syndrome, and more recently, Post Viral syndrome. MEI will use the most common and widely understood term of ME (Myalgic Encephalomyelitis) for simplicity and clarity. With more attention and medical consideration, we hope there is more unity in the community. This confusion is never helpful.
Current understanding
The cause of ME is unknown, but the illness is chronic with no approved treatment options. Currently symptoms are managed. One of the early issues with developing treatments for ME was the stigmatization as psychosomatic or somatoform illness. Since women were twice as likely to be diagnosed, this unfortunately led to harmful stereotypes among some health professionals. There is still some contention about proper diagnosis and naming conventions used, but there is the beginnings of a coalescing of information that has made the situation for patients much better than it was just a few years ago. The ICC definitions were a pivotal moment for ME/CFS and there are current movements in the global medical community to improve on these with the recent gains in our understanding of ME.
The illness has been associated with infections such as Epstein-Barr virus (EBV) and other herpesviruses and closely resembles other post-viral illnesses.
Timeline for ME
Nobody is certain of the exact date and origin of this disease, but stories of people exhibiting ME-like symptoms date back centuries.
The disease causing the Royal Free Hospital outbreak was given the name ‘Benign Myalgic Encephalomyelitis' by Acheson
CFS label, proposed by US CDC, appeared in the medical literature replacing chronic Epstein-Barr syndrome.
CFS-Fukuda used broader term ‘Chronic Fatigue Syndrome’ replacing ‘ME’ and lumped in other conditions. Did not require PEM which is today considered a core symptom.
ME/CFS - Canadian Consensus Criteria (CCC) redefined CFS patient group to require post-exertional malaise or PEM.
International Consensus Criteria (ICC) developed to advance the CCC’s strategy of grouping patterns of symptom clusters and add biological testing.
United States report, “Beyond ME/CFS”, combined ME and CFS into the umbrella term ME/CFS for conditions presenting with post-exertional malaise (PEM), unrefreshing sleep, plus cognitive impairment and/or orthostatic intolerance.
NICE guidelines (UK) updated to confirm ME/CFS as biological (not psychological) and removed harmful practice of dangerous graded exercise therapy (GET) and stopped promoting cognitive behavior therapy (CBT) as a cure The update also included a recognition of the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.
