What is M.E.? Summary
Copyright © Jodi Bassett 2004. This version updated March 2009. From www.hfme.org
Myalgic Encephalomyelitis (M.E.) is a debilitating acquired neurological disease that has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. 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 Multiple Sclerosis, Lupus and poliomyelitis (polio). It can become extremely severe and disabling and in some cases is fatal.
Is Myalgic Encephalomyelitis a new illness?
No. The illness has been documented as an organic (physical) neurological disease for centuries. The name Myalgic Encephalomyelitis was coined in 1956 in theUK
No. The illness has been documented as an organic (physical) neurological disease for centuries. The name Myalgic Encephalomyelitis was coined in 1956 in the
Myalgic Encephalomyelitis has nothing to do with 'fatigue' Unlike Chronic Fatigue Syndrome (CFS) M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system. Fatigue is not a defining (or essential) symptom of M.E. M.E.
Why do some groups claim that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are synonymous terms?
This new name and case definition of 'CFS' was created in the United States by a board of 18 members, few of which had either looked at an epidemic of M.E. or examined any patients with the illness.
This new name and case definition of 'CFS' was created in the United States by a board of 18 members, few of which had either looked at an epidemic of M.E. or examined any patients with the illness.
Why? Money! In the late 1970s and 1980s there was an enormous rise in the reported incidence of M.E. causing alarm among American medical insurance companies. It was at this time when, in order to side-step the financial responsibility of the many new incoming claims, those involved in the medical insurance industry (on both sides of the Atlantic) began their campaign to reclassify this severely incapacitating and discreet neurological illness as a psychological or 'personality' disorder. As Professor Hooper explains: 'A political decision was taken to rename M.E. as "CFS", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians, but all objections were ignored.'
Public, medical and governmental understanding of M.E. is huge mess, that is for certain - but it is not an accidental mess, that is for certain too. (See: Who benefits from 'CFS' and 'ME/CFS'?)
What does a diagnosis of 'CFS' actually mean?
Those diagnosed using the flawed CFS definitions are from a heterogeneous (mixed) population with various misdiagnosed psychiatric and miscellaneous non-psychiatric states that have little in common except the symptom of fatigue. The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean the patient has Myalgic Encephalomyelitis, and (b) does not mean he has any other distinct and specific illness named 'CFS.' A diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis.
Those diagnosed using the flawed CFS definitions are from a heterogeneous (mixed) population with various misdiagnosed psychiatric and miscellaneous non-psychiatric states that have little in common except the symptom of fatigue. The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean the patient has Myalgic Encephalomyelitis, and (b) does not mean he has any other distinct and specific illness named 'CFS.' A diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis.
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 that results in dysfunctions and damage to many of the body's vital systems as well as a loss of normal internal homeostasis.
M.E. is characterised primarily by damage to the central nervous system (the brain) initiated by an enteroviral infection that results in dysfunctions and damage to many of the body's vital systems as well as a loss of normal internal homeostasis.
M.E. 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 physical and cognitive activity, sensory input and orthostatic stress beyond the individual's limits. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (e.g. to the heart), disease progression and/or death. Symptoms of M.E. include:
Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, hair loss, nausea, vomiting, vertigo, cardiac arrhythmia, orthostatic tachycardia, orthostatic fainting or faintness, photophobia and other visual and neurological disturbances, hyperacusis, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing,, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time breathing difficulties, emotional lability and sleep disorders.
Cognitive dysfunction may be pronounced and can include: difficulty/loss of ability in speaking or understanding speech; difficulty in reading, writing or performing basic mathematical tasks as well as having problems with memory including difficulty making new memories and recalling formed memories; difficulties with visual and verbal recall.
What does cause Myalgic Encephalomyelitis? Are there outbreaks?
A review of early outbreaks in the history of M.E. shows clinical symptoms were consistent in over 60 recorded epidemics spread all over the world as far back as 1934. M.E. is an acutely acquired neurological illness initiated by a virus (enteroviral) infection with a 4-7 day incubation period. This point of view is supported by history, incidence, symptoms and similarities with other viral illnesses as well as a large body of research spanning decades.
A review of early outbreaks in the history of M.E. shows clinical symptoms were consistent in over 60 recorded epidemics spread all over the world as far back as 1934. M.E. is an acutely acquired neurological illness initiated by a virus (enteroviral) infection with a 4-7 day incubation period. This point of view is supported by history, incidence, symptoms and similarities with other viral illnesses as well as a large body of research spanning decades.
So what do we know about Myalgic Encephalomyelitis so far?
There is an abundance of research that shows M.E. is an organic illness that can have profound effects on many bodily systems. Many aspects of the pathophysiology of the disease have been medically explained, and to date there are volumes of articles written, from which more than a thousand good articles support the basic premise of M.E. While there is yet no single laboratory test able to diagnose M.E., there are a specific series of tests which enable an M.E. diagnosis to be easily confirmed; i.e. MRI and SPECT scans of the brain.
There is an abundance of research that shows M.E. is an organic illness that can have profound effects on many bodily systems. Many aspects of the pathophysiology of the disease have been medically explained, and to date there are volumes of articles written, from which more than a thousand good articles support the basic premise of M.E. While there is yet no single laboratory test able to diagnose M.E., there are a specific series of tests which enable an M.E. diagnosis to be easily confirmed; i.e. MRI and SPECT scans of the brain.
Some of the abnormalities found in M.E. patients include: extremely low circulating blood volume (up to an astounding 50%), enzyme pathway disruptions, punctate lesions in M.E. brains resembling those of multiple sclerosis; sub-optimal cardiac function and abnormal cardiovascular responses; persistent viral infection in the heart, severe mitochondrial defects and significantly reduced lung functioning.
Also, strong evidence exists to show (even mild or moderate) exercise can have extremely harmful effects on M.E. patients; permanent damage may be caused as well as disease progression and even death.
For this reason, danger exists when medical professionals recommend (and sometimes insist or even force) M.E. patients, including children, to partake in exercise as a treatment to their diagnosis of 'CFS.' Under these harmful circumstances, the M.E. patient is undergoing what amounts to actual legalized torture. Patient accounts of exiting exercise programs much more severely ill than when they entered them, being wheelchair-bound, bed-bound or needing intensive care are common. Deaths have also been reported in M.E. patients following exercise.
How common is Myalgic Encephalomyelitis and who gets it?
M.E. has a similar strike rate to multiple sclerosis. M.E. affects more than one million children as young as five, teenagers and adults. It affects all ethnic and socio-economic groups, and has been diagnosed all over the world.
M.E. has a similar strike rate to multiple sclerosis. M.E. affects more than one million children as young as five, teenagers and adults. It affects all ethnic and socio-economic groups, and has been diagnosed all over the world.
Recovery from and severity of Myalgic Encephalomyelitis M.E.
Truly M.E. can be one of the most devastating and horrific illness there is, yet many with M.E. are subject to repeated medical abuse and neglect because of the way the illness has been dishonestly 'marketed' to the public as being psychological or 'behavioural,' or as being a problem of mere 'fatigue' or a 'fatigue syndrome.'
Sub-grouping or refining or renaming 'CFS' will only waste another 20 years. There is no such distinct disease/s as 'CFS.' For the benefit of all the patient groups involved; the bogus disease category of 'CFS' must be abandoned and patients with M.E. must again be diagnosed with M.E. and treated for M.E. Due to an overwhelming amount of compelling scientific evidence, in 1969 the World Health Organization correctly classified M.E. as a distinct organic neurological disease - this classification/definition and name must be accepted and adhered to in all official documentations and government policy.
PLEASE help to spread the truth about Myalgic Encephalomyelitis. This appalling abuse and neglect of so many severely ill and vulnerable people on such an industrial scale is inhumane and has already gone on far too long. This will only change through education. People with M.E. desperately need your help.
See the full-length (or extra extended) version of What is M.E.? A historical, medical and political overview for more information, and for a full list of references.
