M.E.: The medical facts - Summary
Copyright © Jodi Bassett July 2005. This version updated March 2009. From www.hfme.org
Myalgic Encephalomyelitis (M.E.) is a debilitating (acute onset) neurological disease which has been recognised by the World Health Organisation since 1969 as a distinct organic neurological disorder with the code G.93.3.
M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934.
M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and poliomyelitis (polio). M.E. can be extremely severe and disabling and in some cases the disease is fatal.
Is Myalgic Encephalomyelitis a new/modern illness?
The illness we now know as Myalgic Encephalomyelitis is not a new illness. M.E. is thought to have existed for centuries. The name M.E. was coined in 1956 in the
What is Myalgic Encephalomyelitis? What is its symptomatology?
M.E. is characterised primarily by damage to the central nervous system (the brain) – initiated by an enteroviral infection – which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis.
Although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. These symptoms are exacerbated by certain levels of physical and cognitive activity, sensory input and orthostatic stress. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death.
Individual symptoms of Myalgic Encephalomyelitis include:
Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances.
Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ) in M.E.
What causes Myalgic Encephalomyelitis? Are there outbreaks?
There is a history of over 60 recorded outbreaks of the illness worldwide going back to 1934. M.E. is an acutely acquired neurological illness (with systemic effects) initiated by a virus infection; a virus with an incubation period of 4-7 days. This point of view is supported by history, incidence, symptoms, similarities with other viral illnesses and a large body of medical research. The evidence which exists to support the concept of M.E. as an enteroviral disease is compelling.
How common is Myalgic Encephalomyelitis, who gets it and how?
Although M.E. has existed for centuries, for much of that time it was a relatively uncommon disease. It wasn’t until the late 1970s that M.E. began (for reasons as yet not fully understood) its dramatic increase in incidence worldwide. M.E. has a similar strike rate to multiple sclerosis, and is now estimated to affect roughly 0.2% of the population. M.E. affects children as young as 5 as well as adults, all races and socio-economic groups and has been diagnosed all over the world.
M.E. expert Dr Byron Hyde explains that: “[The] prodromal phase is associated with a usually short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) severe meningitic type headache.”
The main period of infectivity of M.E. peaks at the time just before symptoms appear through to the initial acute phase of the illness (which lasts for several months or in some cases years). Modes of transmission are thought to include: casual contact (respiratory), salivary transmission (eg. kissing), sexual transmission and transmission through blood products. There is also evidence that asymptomatic carrier of the illness may be able to pass the illness on to others for a brief period following their exposure to the illness. (During the recovery and/or chronic stages of the illness however M.E. does not appear to present a significant infective risk).
What is known about Myalgic Encephalomyelitis so far?
There is an abundance of research which shows that M.E. is an organic illness which can have profound effects on many bodily systems. Many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles. More than a thousand good articles now support the basic premises of M.E. Whilst there is as yet no single laboratory test which can diagnose M.E., there are a specific series of tests which enable a suspected M.E. diagnosis to be easily confirmed (MRI and SPECT scans of the brain for example). Various abnormalities are also visible on physical exam. If all tests are normal, then a diagnosis of M.E. cannot be correct. M.E. is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease – providing that the physician has some experience with M.E.
Abnormalities found in M.E. patients include: extremely low blood volume (up to an astounding 50%), enzyme pathway disruptions, punctate lesions in M.E. brains resembling those of Multiple Sclerosis patients, decreased cerebral blood flow, sub-optimal cardiac function and abnormal cardiovascular responses, persistent viral infection in the heart, increased numbers of activated cytotoxic T cells, low natural killer cell function, severe mitochondrial defects and significantly reduced lung functioning. One specialist found that in dual chromatography analyses, many M.E. patients actually had more derangement of the brain, on a biochemical level, than Parkinson's or Alzheimer's patients. (Of course this list of abnormalities is far from exhaustive.)
Strong evidence also exists to show that exercise can have extremely harmful effects on M.E. patients in many different bodily systems; permanent and severe damage/disability may be caused, as well as disease progression. Sudden deaths have also been reported in M.E. patients following exercise.
Are there any treatments for Myalgic Encephalomyelitis?
Whilst there is no cure as yet, or treatments which can dramatically influence the course of the illness due to the lack of funding into research; intelligent nutritional, pharmaceutical and other interventions can make a significant difference to a patient's life.
Recovery from and severity of Myalgic Encephalomyelitis
M.E. patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis. M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. M.E. is a life-long disability where relapse is always possible. Symptoms are extremely severe for around 30% of the people who have M.E. (leaving many of them housebound and bedbound), and the illness can also be fatal.
One doctor found that: ‘M.E. patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.’ An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest. "In other words", said one doctor in a radio interview, “this disease is actually more debilitating than just about any other medical problem in the world.”
An infectious disease specialist and head of an AIDS and M.E. Clinic testified that a M.E. patient, ‘feels effectively the same every day as an AIDS patient feels two weeks before death.’
But in M.E., this extremely high level of illness and disability is not short-term, it can instead continue uninterrupted for decades. Thus Myalgic Encephalomyelitis can be one of the most devastating illness there is.
People with M.E. must be given the appropriate advice and support to ensure that they are given a chance at achieving their best possible prognosis.
- See the full-length (or extended) version of Myalgic Encephalomyelitis: The Medical Facts for more information, and for a full list of references.
http://www.hfme.org/meamedicalsummary.htm
