M.E. Signs & Symptoms - Guideline
Myalgic Encephalomyelitis (M.E.) has been recognised by the World Health Organisation since 1969 as a distinct organic neurological disease. It can occur in both epidemic and sporadic forms.
M.E. is not medically unexplained or untestable and is not the same thing as the wastebasket disease category of 'CFS' (or 'ME/CFS'). Fatigue is a symptom of many different illnesses - but it is not a defining symptom of M.E., or an essential symptom of M.E. What defines M.E. is a specific type of viral damage to the brain.
M.E. is a multi system disease which is characterised by post encephalitic damage to the brain stem; a nerve centre which controls all vital bodily functions - this is always damaged in M.E., hence the name M.E. Inconsistent CNS function is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process. M.E. represents a major attack on the CNS by the chronic effects of a viral infection which targets the brain: an enterovirus.
M.E. has a sudden/acute onset that is often very dramatic. Many patients can tell you not just the day they became ill but the hour. M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. M.E. is a loss of normal internal homeostasis. M.E. is secondarily a vascular disease and the vascular and cardiac dysfunctions seen in M.E. are also a major cause of much of the disability associated with M.E. More than 60 symptoms have been authentically documented in M.E.
M.E. is associated with signs and symptoms including (but not limited to):
Neurological signs and symptoms:
Inconsistent central nervous system function
Vertigo, disequilibrium and proprioception difficulties (e.g. lack of sense of 'up' and 'down' with eyes closed)
Temperature dysregulation and poor tolerance for hot or cold environments
Hyperacusis (sensitivity to noise) and photophobia (pain/relapse on exposure to light)
Pain and pressure at the back of the head (where the head meets the neck) and behind the eyes
Blurred vision, blacked-out vision, nystagmus, wavy visual field, and other visual disturbances
Stroke-like or coma-like episodes
Seizures and 'sensory storms' (while conscious)
Sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm
Many other varied neurological symptoms and abnormalities
Vascular and cardiovascular signs and symptoms:
A very high heart rate, chest pressure, heart pain and a fluttering/straining heart
Very low blood pressure particularly when upright (e.g. 84/48 or less in an adult at rest), orthostatic tachycardia/POTS and reduced circulating blood volume (up to 50%)
Feet burning painfully and turning blue/purple on standing (Reynaud's phenomenon)
Pain/discomfort/poor digestion following meals
Muscular signs and symptoms:
Muscle weakness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.)
Muscle pain, twitching and uncontrollable spasms
Difficulty breathing and air-hunger, difficulty swallowing/chewing
Paresthesias, polyneuropathy or myoclonus
Cognitive signs and symptoms:
Word-finding difficulty, scanning or disjointed speech, speech reversals, difficulty or an inability to speak
Difficulty comprehending speech or delayed speech comprehension
Handwriting changes, difficulty writing or comprehending text
Difficulty with even basic mathematics (dyscalculia)
Difficulty with simultaneous processing, concentration, spatial perception and with sequencing
Difficulty making new memories, recalling formed memories and with immediate and delayed visual and verbal recall (e.g. facial agnosia). There is often a marked loss in verbal and performance IQ
Other signs and symptoms:
Nausea, vomiting and feeling 'poisoned' and very ill
Throat and gland pain/tenderness, chills and low grade fevers
Food allergies, alcohol intolerance, hypoglycaemia and sensitivity to common drugs/chemicals
Ghastly pallor of face with frequent lupus-like submaxillary mask or facial vasculoid rash
Parkinsonian rigidity of facial expression
What characterises M.E. every bit as much as the individual symptoms is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. It is unique in a number of ways and must be present for a correct diagnosis of M.E. to be made, and includes the following:
People with M.E. are unable to maintain their pre-illness activity levels. This is an acute, sudden change. M.E. patients can only achieve 50% or less of their pre-illness activity levels.
People with M.E. are limited in how physically active they can be but are also limited in similar ways with cognitive exertion, sensory input and orthostatic stress.
When a person with M.E. is active beyond their individual limits, there is a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.
The level of physical activity, cognitive exertion, sensory input or orthostatic stress (being upright) that is needed to cause significant relapse varies from patient to patient, but is often trivial compared to pre-illness tolerances and abilities.
The severity of M.E. waxes and wanes throughout the hour/day/week and month.
The worsening of the illness caused by overexertion often does not peak until 24 - 72 hours or more later.
The effects of overexertion can accumulate over time and lead to disease progression or death.
The activity limits of M.E. are not short term: an increase in activity levels beyond a patient's individual limits, even if gradual, causes relapse, disease progression or death.
The symptoms of M.E. do not resolve with rest. There is also a base level of illness which can be quite severe even at rest.
Repeated overexertion can harm the patient's chances for future improvement in M.E. Patients who are able to avoid overexertion have repeatedly been shown to have the most positive long-term prognosis.
Not every M.E. sufferer has 'safe' activity limits within which they will not exacerbate their illness: this is not the case for very severely affected patients.
30% of M.E. patients are housebound and/or bedbound and are severely limited with even basic movement and communication. Cognitive disability can be very pronounced in M.E., just as much as can physical disability.
This information is based upon an enormous body of clinical information and research. Although M.E. can cause many different symptoms the major features of epidemic and sporadic M.E. are distinct and almost identical from one patient to the next. M.E. is a severely disabling, distinct, easily recognisable and testable disease entity.
Note that many different illnesses may share a percentage of the individual neurological, gastrointestinal or cognitive features of M.E., (and so on) but there is no other illness which encompasses each of the specific neurological, cognitive, immunological, gastrointestinal, cardiac and cardiovascular, endocrinological, respiratory, hormonal and other features and symptoms which make up M.E. This specific combination of symptoms/pathology is not seen in any other illness. There are also a number of characteristics of M.E. which are unique to the illness. The acute onset of M.E. also sets it apart from many other illnesses commonly associated with a gradual onset, as do many other characteristics
What is CFS? CFS was created in a response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. All each of these flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue (a symptom seen in many illnesses but not a defining feature of M.E. nor even an essential symptom of M.E.).
The disease category ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various unrelated psychiatric fatigue states and post-viral fatigue syndromes (etc) for the benefit of various (proven) financial and political interests.
M.E. and ‘CFS’ are not synonymous terms. The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which are of primary importance. The distinction must be made between terminology and definitions.
Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with ‘CFS’ actually do have psychological illnesses. ‘CFS,’ as a wastebasket diagnosis, includes all fatiguing illnesses including psychiatric illnesses. ‘CFS’ is associated with psychiatric illness; for many patients this is inappropriate, but some patients misdiagnosed with ‘CFS’ actually do have psychological illnesses. There is no such disease as ‘CFS’ – that is the entire issue.
Less than 10% of patients misdiagnosed with ‘CFS’ have M.E.
The bogus disease category of ‘CFS’ must be abandoned (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS,’ ‘CFS/ME, ’ 'ME-CFS,’ ‘CFIDS, SEID’ ‘Myalgic Encephalopathy' and others), for the benefit of all patient groups involved.
Information on M.E. must be published using only the term M.E. and must involve a 100% M.E. patient group. Science, logic and ethics must finally prevail over mere financial and political concerns.