Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Jul 27, 2006.

  1. karinaxx

    karinaxx New Member

    Compiled by Jodi Bassett 2004 (Updated December 2005)
    Taken from

    This symptom list has been created to provide people who have been diagnosed with Myalgic Encephalomyelitis (ME/ICD-CFS*) vital information about which symptoms may or may not be a part of their illness. It's completely unacceptable that most people with ME/ICD-CFS have no information about the kinds of neurological, cardiac, immune system and other symptoms which are so common in ME/ICD-CFS because of the CDC's (and others) self-serving, inept and misleading descriptions of its symptomatology.

    Just to know that there are other people with ME/ICD-CFS who sometimes (or every day) wake up completely paralysed and that it's not just you (for example), can really be an enormous relief in itself - even if there may be no actual treatment for the symptom as yet. Knowledge is power and a more comprehensive symptom list is a simply vital tool for all Myalgic Encephalomyelitis sufferers.

    before reading the symptom list please note:

    This text is NOT a useful or reliable diagnostic tool and should never be used as such.

    It should not be assumed that because you may have some of the symptoms on the list that you necessarily have ME/ICD-CFS - many of them are common in a variety of other disorders and it is the pattern of symptoms which enables a ME/ICD-CFS diagnosis to be made, as well as the presence of a number of core characteristics/symptoms which are always present in the illness (and without which a diagnosis of ME/ICD-CFS should never be made). Even having a very large number or percentage of the symptoms on this list does NOT necessarily mean a ME/ICD-CFS diagnosis is likely or even a possibility.

    The Canadian Criteria are a much more useful tool for ME/ICD-CFS diagnosis.

    Also note that if you find a symptom of yours listed here it does NOT mean that you don't still have to tell your doctor about it and get it checked out. 'Just' because it's a ME/ICD-CFS symptom it does not mean it can't be serious. Cardiac problems in particular should always be investigated, as should lymph node pain (among many others).

    Never assume that everything is 'just' ME/ICD-CFS either, having ME/ICD-CFS does not mean you are immune from catching or developing other illnesses as well unfortunately. So make sure you get every new symptom checked out by your doctor.

    The symptoms are listed in no particular order (common ones are listed right near the rarer ones) and of course, remember that nobody will get every symptom.

    Also note that this is not a pure symptom list and some additional information (signs of the illness, causes of some of the symptoms etc.) has also been included.


    Myalgic Encephalomyelitis (ME/ICD-CFS) is a debilitating illness which has been recognised by the World Health Organisation (WHO) since 1969 as an organic neurological disorder. ME/ICD-CFS can occur in both epidemic and sporadic forms (over 60 outbreaks have been recorded worldwide since 1934) and appears to be remarkably similar to post-polio syndrome (an enteroviral triggered disorder) (Hooper et al. 2001 [Online]).

    Myalgic encephalomyelitis is an acutely acquired illness initiated by a virus infection with multi system involvement which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. Central nervous system (CNS) dysfunction, and in particular, inconsistent CNS dysfunction is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process.

    Myalgic Encephalomyelitis is a loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions (cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance etc). It is a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits. This dysfunction also results in the inability of the CNS to consistently programme and achieve normal smooth end organ response. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs. Some individuals also have damage to skeletal and heart muscle.

    This is not simply theory, but is based upon an enormous body of clinical information. Confirmation of this hypothesis is supported by electrical tests of muscle and of brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays. Newer scientific evidence is increasingly strengthening this hypothesis.

    It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these dysfunctions, that creates the high level of disability in M.E. It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E. (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online])

    In short, ME/ICD-CFS symptoms are primarily caused by central nervous system dysfunction and a subsequent breakdown in bodily homoeostasis. Therefore although ME/ICD-CFS is primarily neurological, symptoms may be manifested by cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in ME/ICD-CFS. (Hooper & Montague 2001 [Online])

    At first glance of a list of M.E. symptoms it may seem that every symptom possible is mentioned, but the seemingly random list of symptoms in fact form unique and distinct patterns – they are anything but ‘random’ for those with knowledge of the illness and/or of how the illness effects the body’s various systems. As Montague and Hooper explain, ‘In ME/ICD-CFS, different people have different symptoms but the general pattern and evolution of major symptoms are remarkably coherent.’ (2004, [Online]) Dr David S. Bell, M.D. adds that:
    A list of M.E. symptoms is misleading. At first glance it appears that almost every symptom possible is part of the list. This is another reason many physicians have not accepted the reality of M.E. - there are simply too many symptoms. But a patient relating these symptoms does not list them in a random manner. They fit a precise pattern that is nearly identical from one patient to the next. (1995)

    Some experts have also identified different stages of M.E., where the effects of the illness on the body (and the types of symptoms produced) change over time. For more information see Dr Paul Cheney M.D. on the different stages of ME/ICD-CFS, and also the works of Dr Byron Hyde M.D. and Dr Elizabeth Dowsett. The book ‘The Clinical and Scientific Basis of ME/CFS’ is also a useful resource on this topic as are Dr Paul Cheney’s recent writings on Compensated Idiopathic Cardiomyopathy in ME/ICD-CFS.

    Lastly, Myalgic Encephalomyelitis has nothing to do with ‘fatigue’ If you are tired all the time, you do not have ME/ICD-CFS. In reality having M.E. is like having parts of Multiple Sclerosis, AIDS, Alzheimers, Arthritis and Epilepsy all mixed together at once, with some extra horrific symptoms thrown in that are entirely its own. M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system – not a problem of ‘chronic fatigue.’

    See What is M.E.? for more information on M.E. See also: The 3 Part M.E. Ability and Severity Scale – a tool to help you measure your illness severity over time. Many of the worlds leading M.E. experts have spoken out strongly against ‘fatigue,’ click here to read some of their comments, see also Fatigue Schmatigue and ME and CFS, The Definitions. A 2 page summary of this symptom list is also available.

    *Note: The term ME/ICD CFS may not be widely known as yet but it is used to ensure distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisation’s International Classification of Diseases (as another name for the neurological disorder Myalgic Encephalomyelitis) and the all encompassing, broadly defined 'fatiguing' version of CFS - two entirely different problems. For more information about how two completely unrelated illnesses came to sometimes share a name see What is M.E.?


    This list has been compiled using the following sources:

    The Clinical and Scientific Basis of Myalgic Encephalomyelitis/CFS, Dr Byron Hyde M.D.
    CFS - A Treatment Guide, by Verillo and Gellman,
    ME/CFS: Clinical Working Case Definition (The Canadian definition) Dr Carruthers et al
    The Doctor's Guide to CFIDS, by Dr. David S. Bell M.D.,
    The Myalgic Encephalomyelitis Society of America [Online]
    Myalgic Encephalomyelitis: A Baffling Syndrome With a Tragic Aftermath, by Dr Melvin Ramsay M.D.
    Papers by Dr Elizabeth Dowsett

    Symptoms are not presented as direct quotes from these sources (and are instead paraphrased) to aid readability. No extra anecdotal symptoms have been added.


    The hallmark characteristic of M.E.
    M.E. is characterised primarily by dysfunction of the central nervous system (the brain). This results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis.

    Therefore, although M.E. is primarily neurological, symptoms may be manifested by: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. (See the symptom list itself for further information.) Symptoms are also caused by a loss of normal internal homeostasis; the body becomes unable to make all the appropriate physiological adjustments that allow it to maintain homeostatic equilibrium in response to the many changes to the internal and external environment that are part of everyday life. The body/brain no longer responds appropriately to homeostatic pressures, including (to varying extents): physical activity, cognitive exertion, sensory input, orthostatic stress, emotional stress and infectious stress.*

    When certain levels of each of these homeostatic pressures occur (or are applied), homeostatic disequilibrium results. The result of this homeostatic disequilibrium is a period of time in which the patient experiences:
    A combination of: profound cognitive dysfunctions (and various other neurological disturbances), muscle weakness (or paralysis), burning eye pain, subnormal temperature or low-grade fever, sore throat or painful lymph nodes (and/or other signs of inappropriate immune system activation), faintness or vertigo, loss of co-ordination, dyspnea, an explosion of sensory phenomena, cardiac and/or blood pressure disturbances, facial pallor and/or a slack facial expression, widespread severe pain, nausea or feeling as if ‘poisoned,’ feeling cold and shivering one minute and hot and sweating the next, anxiety or even terror (as an organic part of the attack itself rather than as a reaction to it) and hypoglycaemia. Often the patient will feel an urgent need to retreat from all homeostatic pressures. The types of symptoms triggered vary widely from patient to patient, but some combination of these is common. There may also be an accompanying exacerbation of other symptoms. These symptoms combine to create an indescribable and overwhelming experience of terrible illness that is unique to M.E, and can be profoundly incapacitating. At its most severe, the patient feels as if they are about to die.

    The level or intensity of each of these internal and external homeostatic pressures needed to cause the M.E. homeostatic disequilibrium symptom complex (or symptom ‘storm’) outlined above varies from patient to patient, but is often trivial compared to a patient’s pre-illness tolerances and abilities. The severity level of the symptoms produced varies widely between patients and ranges from mild to severe. The symptoms produced may also be life-threatening (seizures and cardiac events). The severity of the attack and its symptomatology will also vary depending on which particular homeostatic pressure is involved. (Most commonly, an intolerance to particular levels of physical and cognitive activity are the primary features of the illness; the diagnosis of M.E. should never be made without these features being present.)

    The onset of these symptoms may be acute but often symptoms will not peak until 24 – 48 hours or more afterward (this is particularly true with regard to physical, cognitive and orthostatic exertions). Symptoms will then persist for hours, weeks or many months.

    The symptomatic expression of these effects can also be delayed and accumulate over time (usually days or weeks, but sometimes months) until they are realised in a ‘crash,’ a period of intense worsening of the overall condition followed by a gradual return to the patient’s base level of illness. When the body is confronted with homeostatic pressures beyond the patient’s individual limits severely and/or repeatedly over time, these effects can also become cumulative in the long term; the patient becomes unable to return to their base level of illness at all (long-term or permanent worsening of the overall severity of the condition is caused). This is particularly true with regard to physical activity. It is vital that patients avoid physical over-exertion and are never encouraged to exercise (or be active) beyond their individual limits at any stage of the illness. In addition to the risk of relapse, permanent damage (eg. to the heart), and disease progression, there have also been reports of sudden deaths in M.E. patients following exercise.

    For the most severely affected sufferers there is virtually no ‘safe’ level of any of these homeostatic pressures, no level which does not produce a worsening of symptoms (and perhaps also contribute to disease progression). Even the most basic actions – speaking a few words, being exposed to bright light or moderate noise for a few minutes, turning over in bed, having hair or body washed in bed by a carer or chewing and swallowing food – cause severe and extended symptom exacerbations (or ‘storms’) in such patients. ME/ICD-CFS is a neurological illness of extraordinarily incapacitating dimensions.

    *Note: This is not ‘stress’ as the concept is commonly understood, but is a reference to anything which causes the homeostatic systems to have to react in some way. Even the category of ‘emotional stress’ is not solely concerned with ‘anxiety’ as symptoms may in fact be induced by ALL strong emotions, negative and positive ‘Sensory input’ includes (to varying extents): light, noise, vibration, motion, touch, smell and temperature sensitivities.

    Another of the core characteristics which clearly differentiates strictly defined ME/ICD-CFS from many other superficially similar illnesses is, as veteran M.E. clinician Dr Melvin Ramsay explains ‘the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states.’ (1989) The chronicity of the illness is another.

    A 2 page, printer-friendly version of the above description (combined with the ‘What is M.E.?’ text in the introduction and a summary of the entire symptom list) is available online and may also be downloaded in various formats; see the M.E. Symptom Summary. See also Wikipedia for a description of homeostasis and Treating M.E. for more about the importance of avoiding over-exertion in M.E.

    Reduced maximum heart rate and/or an elevated resting heart rate

    Extreme pallor (usually just before or during a relapse)

    Odema (swelling of the hands and feet)

    Neurally Mediated Hypotension (NMH) low blood pressure (which causes the blood to pool in the extremities) this occurs due to an abnormal reflex interaction between the heart and the brain. This can also occur with Delayed Postural Hypotension (usually delays are around 10 minutes).

    Postural Orthostatic Tachycardia Syndrome - POTS (a heart rate increase of 30 bpm or more from the supine to the standing position within ten minutes or less) which can also occur with Delayed Postural Orthostatic Tachycardia Syndrome (usually delays are around 10 minutes)

    Orthostatic (being upright) light-headedness and/or syncope (fainting)

    Very low blood pressure (hypotension) on reclining, or high blood pressure on activity. Sudden low blood pressure may cause blackouts.

    A severe exacerbation of symptoms (including the homeostatic disequilibrium symptom complex) on orthostatic challenge (maintaining an upright posture). This is thought to be due to cardiac insufficiency and reduced blood volume. Orthostatic challenge may also cause feet and sometimes hands to have a purplish or bluish appearance (often with white spots) due to circulation dysfunction. Lying down (with legs raised slightly) often markedly improves symptoms. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Sensations of chest pain, chest pressure or fluttering sensations in the mid-chest, palpitations (skipped heart beats), tachycardia (rapid heart beat – may be 170bpm or higher), premature atrial and ventricular contractions (early or extra heartbeats), various arrhythmias (abnormal heart rhythms), ectopic heart beats (a contraction of the heart that occurs out of its normal rhythmic pattern, it may feel like a thumping sensation in the chest) and sleep bradycardia (a slowing of the heart rate above what is expected with sleep) can all occur.

    The onset of the homeostatic disequilibrium symptom complex (and in particular a worsening of cognitive abilities) with cognitive exertion beyond a certain level. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Problems with memory including; difficulty making and consolidating new memories (particularly short-term memories), difficulty recalling formed memories and difficulties with visual recall and with immediate and delayed verbal recall are common. Short-term memory problems may lead to people forgetting where they are or what they are doing, this can be so severe that patients are unable to finish a sentence. Facial agnosia may also occur (not being able to recognise faces, even those of close friends and family)

    Multi-tasking problems, an inability to learn to perform new tasks, forgetting how to perform routine tasks and a difficulty with simultaneous processing. There can be a difficulty with following step-by-step instructions, recipes or performing any tasks which require a series of separate actions. Sequencing dysfunction can also occur; inability to look words up in a dictionary, to look up phone numbers in a phone book or to organise files etc. Patients may also need extra sensory cues to complete tasks (for example, the patient may need to be able to see what they are doing to be able to complete a task where formerly the task could be completed using touch alone eg. turning on a light or operating the controls in a car)

    Cognitive slowing (tasks can take much longer than usual)

    Impairment of concentration; maintaining a reasonable level of concentration on a task for even a short period of time may become extremely difficult, or impossible.

    Difficulty with visual and aural comprehension; difficulty following oral or written directions, trouble distinguishing figure from ground and speech comprehension difficulties. Greater difficulty with auditory comprehension than visual is common.

    Word, letter and short term ordering problems, for example; transposition - reversal of letters or numbers, words or sentences when speaking or writing (pseudodyslexia)

    Inability to locate the words for writing (Agraphia). Handwriting may also change completely with the onset of illness, may be deformed in a way consistent with brain damage (this may wax and wane with the severity of the illness)

    Problems with reading (Alexia) or word blindness; patient can still read but what is read is not comprehended and cannot be compared with known information already stored. If reading is still possible, text may have to read many times before it can be comprehended.

    Difficulty or an inability to understand speech (Wernicke's Aphasia); words are heard clearly, they are not garbled, but they make no sense. It is a loss of the ability to interpret normal language. When the input is aural, there seems to be a loss of the initial orienting information. The person is actively listening, but the information simply does not register at all or must be repeated several times before it registers.

    Increased need for visual cues in understanding speech; visual or multisensoral cues are an important compensatory tool in M.E. (for example, a patient may not be able to understand the same conversation with the same person on the telephone that they understood perfectly well when conducted face-to-face).

    In speaking, important elements are often left out of the sentence such as the verb or subject, sometimes the syntax is askew. At times speech makes no sense and/or does not relate to the question asked. Sometimes speech comprehension is delayed which can result in long pauses, interruptions, mistiming of responses and apparent non sequiturs. Patients themselves may or not be aware of these problems with their speech. Incorrect word selection (paraphasia) is common, such as using the wrong word from the right category or using a word that sounds similar to the correct word but has a different meaning. Commonly used words become hard to retrieve. These problems combined may result in a significant loss of communicative ability. There can also be a difficulty pronouncing words intelligibly (Dysarthria) or a complete inability to express language (Broca's Aphasia).

    Dyscalculia; (loss of arithmetic skills) an inability or difficulty to do simple additions and other calculations, to count money, add up columns etc (irrespective of the quality of former mathematical abilities) is common. There may also be a difficulty or confusion with following timetables or keeping scheduled appointments.

    Loss of verbal and performance intelligence quotient (IQ) (A 20 point loss is average, although for some people the loss is much more profound)

    A loss the ability to block out extraneous and unwanted information and noise; M.E. patients lose of the ability to distinguish noise from required information and tend to shut down all intake after minimal prolongation of the information signal. For example, a person may not be able to understand speech when there is more than one person speaking, more than one conversation taking place, or when there is a TV or radio on in the background. (This receptive shutdown has alarming connotations for making memories and can also at times create real danger to the M.E. patient)

    An exaggerated response to even small amounts of additional input or stimulus (light, noise, movement) is common, causing incoming messages to become scrambled or blurred resulting in distorted signals and odd sensations. This may also cause the onset of the homeostatic disequilibrium symptom complex and an exacerbation of other symptoms. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Polyneuropathy; a neurological problem that occurs when many peripheral nerves throughout the body malfunction simultaneously. Many polyneuropathies have both motor and sensory involvement and some have autonomic dysfunction. Hyperreflexia; overactive or overresponsive reflexes eg. twitching or spastic tendencies as well as the lessening or loss of control ordinarily exerted by higher brain centres of lower neural pathways (disinhibition).

    Perceptual and sensory dysfunctions eg, spatial instability and disorientation. There may be a loss of co-ordination or clumsiness - difficulty in judging distance, placement and relative velocity (caused by proprioception dysfunctions, proprioception being the perception of stimuli relating to your own position, posture, equilibrium, or internal condition) Extension or quick rotation of the neck can cause dizziness (also due to proprioception dysfunctions)

    Altered time perception (losing time), feeling 'spaced out' or 'cloudy' or not quite real somehow

    Disorders of colour perception - recognising colours but forgetting what they mean, (Seeing the red light at an intersection, knowing it is red, but not recognising that red means ‘stop,’ for example)

    Abstract reasoning dysfunction; difficulty organising, integrating, and evaluating information to form conclusions or make decisions (some patients find it almost impossible to make decisions)

    Stroke-like episodes

    Short periods of amnesia may occur which may be associated with disorientation where the patient momentarily does not know where or who she is which may cause considerable anxiety. Some patients lose large parts of the day but this is infrequent. In most cases the patient can be brought out of the amnesiac attack with cues

    In severe illness patients can become unconscious, comatose for up to 23, 24 hours a day (the brain becomes unable to maintain wakefulness). There can be a difficulty in maintaining full consciousness for more than a few seconds, minutes, or half-hour periods at a time.

    Volitional problems; difficulty starting or stopping tasks, or switching from one task to another (a neurological dysfunction where the body does not respond appropriately, or quickly, or without difficulty, to the minds commands; is related to sleep paralysis. This is a central dysfunction and may be similar to that seen in Parkinsonianism)

    A feeling of agitated exhaustion is common (neurological in origin)

    Emotional symptoms include: mood swings (emotional lability) – crying easily, excessive irritability etc or intense emotions such as rage, terror, overwhelming grief, anxiety, depression and guilt. Sometimes there can be an emotional flattening or situations may be erroneously interpreted as novel (due to prefrontal cortex dysfunction). Disinhibition may occur to varying levels. Anxiety and panic attacks may occur, often not tied to environmental triggers. Emotional symptoms in M.E. tend to be linked to exacerbations in physical symptoms, there are often not environmental triggers. Also note that injuries to the areas or centres of the brain which control emotions are of an identical nature as those that affect physical function; these emotional symptoms are an organic part of the illness caused by anatomical and physiological damage to the brain just as nystagmus, seizures or any other neurological problems or symptoms are. The homeostatic disequilibrium symptom complex may also be triggered by high levels of emotional stress. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Oesophageal spasms (felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back) or oesophageal reflux (heartburn)

    Difficulty swallowing (or an inability to swallow)

    Great thirst, increased appetite, food cravings or lack of appetite

    Inability to tolerate much fat in the diet (gallbladder problems)

    Changes in taste and smell; an increased sense of smell or bizarre smells. Strange taste in mouth (bitter, metallic)

    Multiple new food allergies and intolerances

    Bloating, abdominal pain, nausea, indigestion or vomiting is common, as is diarrhoea, constipation or an alternation between the two.

    Intense gallbladder pain (in the upper right quadrant of the abdomen) or liver pain, tenderness or discomfort. Liver problems (along with other problems) can lead to a ‘poisoned’ feeling.

    Alcohol intolerance is common (ranging from mild to a total intolerance)

    Thyroid; thyroid pain, inflammation or dysfunction (usually secondary hypothyroidism). Adrenal gland dysfunction; aspects of both overactive and underactive adrenal function or pituitary dysfunctions

    Loss of thermostatic stability - suddenly feeling cold in warm weather, recurrent feelings of feverishness or chills or hot flashes particularly involving the upper body. Feeling cold and shivering one minute and hot and sweating the next is common. A low-grade fever may occur following exertion

    Subnormal body temperature and marked diurnal fluctuation (temperature fluctuation throughout the day)

    Cold hands and feet, sometimes on only one side

    Sweating episodes (profuse sweating, sometimes even when cold) - with the sweat often having quite a sour smell. Night sweats and spontaneous day sweats may occur

    Swelling of the extremities or eyelids

    Loss of adaptability and worsening of symptoms with stress (due to endocrine dysfunctions) See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    An exacerbation of symptoms and onset of the homeostatic disequilibrium symptom complex with physical activity beyond a person’s individual limits. It is vital that patients avoid physical over-exertion and are never encouraged to exercise (or be active) beyond their individual limits at any stage of the illness. It is of no benefit for people with M.E. to push themselves beyond their limits physically as this can only cause unnecessary relapses. Permanent damage (eg. to the heart) and disease progression may also result and there have also been reports of sudden deaths in ME/ICD-CFS patients following exercise. As veteran M.E. clinician Dr Melvin Ramsay M.D. explains: ‘The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them.’ (1986)

    See THE HALLMARK CHARACTERISTIC of M.E. section for more information, see also: TREATING M.E.

    A sudden unexpected feeling of being 'high' can occur (due to neurological dysfunctions) leading to (usually short) bouts of physical hyperactivity

    Severe muscle weakness (paresis) or paralysis. Muscles will often function normally to start with, but pain and weakness (or paralysis) develop acutely after short periods of use and then take at least 24 – 48 hours to resolve (normal muscle recovery is around 200 minutes). Problems arise from sustained muscle use - it is a pathologically slow or impaired recovery of muscle after exercise. (It is a problem involving the metabolism of the muscles). Thus a patient may be easily able (for short periods) to lift something moderately heavy one or two times, but be unable to lift something very light many times (such as a soup spoon for example). This weakness or paralysis is most frequent in a patient’s most commonly used muscle groups. This muscle weakness also affects organs (such as the muscles of the heart or the eyes)

    Impaired cognitive processing, a reduced maximum heart rate, a drop in body temperature or dyspnea (shortness of breath) with exertion. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Loss of the natural antidepressant effect of exercise


    Onset of a new type, severity or pattern of headaches is common. See also the PAIN section

    These can be experienced as a feeling of extreme pressure felt at the base of the skull and/or severe pain or sensation of pressure behind the eyes (or ears). Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest) can occur, as can hypoglycaemia headaches (generalised prickly ache over the top of the head)

    Hyperacuity - an intolerance to normal sound volume and range (but particularly sounds in the higher frequencies). Sudden loud noises can also cause a startle response (flushing and a rapid heartbeat) and there can also be an extreme intolerance to vibration or movement.

    Excessive sensory inputs (noise, vibration) may also lead to exacerbations of other symptoms and the onset of the homeostatic disequilibrium symptom complex . See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Tinnitus - ringing, buzzing, humming, clicking, popping and squeaking noises generated in the ear

    Hearing loss - sound can be muffled or indistinct or sound strangely flat, there can be a loss of tone perception

    Sharp transient ear pain, deep itching in the ears and/or swelling of the nasal passages

    Dizziness or vertigo - a sensation that your surroundings (or you) are spinning wildly (can cause vomiting). Vertigo may also be expressed in a milder form as an inability to watch TV or to read.

    Acute profound ataxia (balance problems) or a sensitivity to motion/movement (which can affect balance)

    Nystagmus - a rapid involuntary oscillation of the eyeballs

    The voice may become very weak, hoarse or fall to a whisper, and then there can be total loss of speech. There may also be a slowed rate of speech, sometimes with stammering, stuttering, muddled or slurred speech or difficulty moving the tongue to speak or getting enough air to speak more than a few words at a time.

    See also the COGNITIVE & NEUROLOGICAL DYSFUNCTIONS section for more information about difficulties with speech in M.E.

    Hypoglycaemia or hypoglycaemia-like symptoms (problems with blood sugar regulation/low blood sugar)

    Infectious stress may lead to the homeostatic disequilibrium symptom complex and an exacerbation of other symptoms. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Lymphadenopathy: lymph nodes which are tender to the touch and painful on movement. The lymph nodes in the front and back of the neck, armpits, elbows and groin are most frequently affected, particularly on the left side.

    Recurrent flu-like symptoms (general malaise, fever and chills, sweats, cough, night sweats, low grade fever, sore throat, feeling hot often and low body temperature)

    Very severe throat pain, scratchiness and tenderness which often worsens with exercise, exertion or before relapses. Throat may also feel clogged and require constant clearing. Throat may appear red or have characteristic ‘crimson crescents’ around the tonsillar membranes of the upper throat

    An increased susceptibility to secondary infections can be a significant problem. In addition to seasonal colds and flu patients are also more susceptible to upper respiratory tract or urinary tract infections, topical fungal infections and recurring shingles. All of these infections also last longer, can be more severe and occur more frequently and may also cause relapses either concurrently or just after the initial infection. This is true even in cases where prior immunity has been established. See THE HALLMARK CHARACTERISTIC of M.E. section for more information.

    In some patients there is instead a decreased susceptibility to secondary infections. There is a tendency to catch either every virus going around or to ‘never catch anything’ depending on whether the immune system is under- or over-active (which changes dependant on which stage of the illness the person is in). Starting to get colds and flu’s again can be a sign of M.E. remission or improvement

    Reactions to chemical smells: chemical sensitivities may occur to indoor and outdoor chemical air contaminants; perfumes, hairsprays, gasoline, household cleaning products, plastic and glue out-gassing. Can produce allergic reactions although not all chemical sensitivities are IgE mediated. May also cause the homeostatic disequilibrium symptom complex and an exacerbation of other symptoms. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    New sensitivities may also occur to some drugs and medications (particularly those which act on the CNS)

    Worsening of existing allergies and/or new severe sensitivities/allergies/intolerances to many varieties of food (and food additives) and to airborne allergens: pollen, mould, animal dander, fur and feathers or dust.

    Allergy symptoms:
    Skin: pallor, itching, burning, tingling, flushing, warmth or coldness, sweating behind the neck, hives, blisters, blotches, red spots, pimples, dermatitis, eczema
    Eyes: blurred vision, itching, pain, watering, eyelid twitching, redness of inner angle of lower lid, drooping or swollen eyelids
    Ears: earache, recurring ear infections, dizziness, tinnitus, imbalance
    Nose: nasal discharge or congestion sneezing
    Mouth: dry mouth, increased salivation, stinging tongue, itching palate, toothache
    Throat: tickling or clearing, difficulty swallowing
    Lungs: shortness of breath, air hunger, wheezing, cough, mucous or recurrent bronchial infections
    Heart: pounding or skipped heartbeats, chest tightness
    Gastrointestinal tract: burping, heartburn, indigestion, nausea, vomiting, abdominal pain, gas, cramping, diarrhoea, constipation, mucus in stool; frequent, urgent or painful urination, bedwetting (in children)
    Muscular system: muscle fatigue, weakness, pain, stiffness, soreness
    Central nervous system: headache, migraine, vertigo, drowsiness, sluggishness, giddiness
    Cognition: lack of concentration, feeling of 'separateness', forgetting words or names, anxiety, tension, panic, overactivity, restlessness, jitteriness, depression, PMS

    Significant myalgia (pain) in joints is often widespread. The most common joints affected are knees, ankles, elbows, hips but pain in the fingers also occurs. Aching in the joints is also common

    Gelling (stiffness) in the joints that develops after holding a position for awhile, usually sitting or upon awakening but can also be caused by changes in temperature or humidity

    Gait abnormalities and a difficulty with tandem gait

    Significant myalgia in muscles is often widespread (sharp, shooting, burning or aching pain). Pain can be extremely severe. See also the PAIN section

    Transient tingling, numbness and/or burning sensations (or other odd sensations) in the face or extremities (paresthisias).

    There is sometimes atrophy of specific muscle groups (a shrinking in size visible to the eye)

    Inability to form facial expressions leading to a ‘slack’ facial appearance

    A loss of the ability to chew or swallow

    Severe muscle weakness (paresis) or paralysis. Muscles will often function normally to start with, but pain and weakness (or paralysis) develop acutely after short periods of use and then take at least 24 – 48 hours to resolve (normal muscle recovery is around 200 minutes). Problems arise from sustained muscle use - it is a pathologically slow or impaired recovery of muscle after exercise. (It is a problem involving the metabolism of the muscles). Thus a patient may be easily able (for short periods) to lift something moderately heavy one or two times, but be unable to lift something very light many times (such as a soup spoon for example). This weakness or paralysis is most frequent in a patient’s most commonly used muscle groups. This muscle weakness also affects organs (such as the muscles of the heart or the eyes)

    Visible tremors and twitches of the muscles (involuntary movements)

    Muscle spasms, which can be extremely severe and painful. There may be spasms of the hands and feet which can lead to ‘clawed’ deformities or spasms in the neck which cause the head to twist to one side

    Slight hesitation in movement or ‘cogwheel’ effect with movement

    Dental decay and periodontal disease (gum disease) are much more common than in the general population

    Frequent canker sores (painful sores in the mouth which look like small bumps with white heads)

    Loose teeth and endodontal (the soft tissue in the centre of the tooth) problems

    Temperature sensitivity in the teeth and/or pain in the teeth

    Pain syndromes associated with ME/ICD-CFS: the M.E. homeostatic disequilibrium symptom complex. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Three different types of muscle pain in ME/ICD-CFS:

    Patient complains of feeling as though they have been beaten repeatedly with an axe handle; bruised and hurt all over. Is sometimes associated with a dull headache and an inability to concentrate.
    Severe spike-like pain, usually in the main muscle mass in the leg; extensors or flexors. It is commonly described as feeling as though a nail or a knife had been stuck into the area.
    Occurs after a particular muscle group has been in use for an extended period; the affected muscles become weak and painful and this takes a few days to resolve. The affected muscle can frequently be palpated and is hard and swollen.

    Cephalgias and other head area pain: encephalitic pain, pain behind the eyes, expanding head pain, ear pain, opthalmic pain, tooth-hypersensitivity pain, spike-like pain, fibromyalgia pain, formification, sore throat and spasm associated pain

    Other types of pain: chest and abdominal pain, causalgia and other neuralgic pain, abdominal pain, urogenital pain, pain in the extremities (hypothallamic dysfunction pain, periarthritic pain, bone pain and muscle pain)

    Pain reception impairment: skin is very sensitive to the touch and there can be also be allodynia - a pain response to stimuli not usually painful (some patients find the weight of their sheets becomes extremely painful and intolerable for example)

    Menstrual cycles may become shorter, longer or irregular. Periods may also become lighter or disappear altogether (usually when illness is severe) There may also be an intensification of ME/ICD-CFS symptoms before and during a period

    Lowered libido


    Erratic breathing pattern

    Dyspnea - air hunger or difficulty breathing (often on waking or with exertion), which can be severe. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Persistent coughing and wheezing

    Grand mal seizures (where there is loss of consciousness and motor dysfunctions),

    Petit Mal seizures - absence seizures (where you are conscious but unaware of your actions. A person may continue with an activity as though asleep – an ambulatory automatism may occur)

    Simple partial seizures - do not involve loss of consciousness but produce altered sensations, perception, mood or bodily sensations; somatosensory seizures, autonomic seizures, focal motor seizures, auditory seizures, visual seizures. Complex partial seizures: episodic dysphasia/dyspagia (incomprehension of speech and inability to speak), olifactory hallucinations. Other seizures: tremulous attacks and psychomotor attacks. (Byron Hyde M.D. states that, by definition all M.E. patients will have some level of seizure activity as part of their illness.)

    Sensory storms/overload phenomena or the homeostatic disequilibrium symptom complex caused by a hypersensitivity to light, sound, vibration, movement, temperature, odours and/or mixed sensory modalities. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Myoclonus (strong involuntary jerks of the arms, legs or entire body)

    Skin: extreme pallor, rashes, dry and peeling skin, acne, spontaneous bruising, fungal infections, butterfly rash on face, flushing of face, fingerpads may be atrophic so that the fingerprints are hard to see, skin may become red and shiny (generally after long-term illness).

    Hair: hair loss and poor quality regrowth.

    Nails: vertical ridges, bluish nail bed, brittleness, fungal infections

    Unrefreshing sleep (waking up feeling worse than when you went to bed, as if you hadn’t slept at all)

    Disrupted, chaotic or reversed circadian (sleep and wake cycle) rhythms

    Difficulty initiating sleep, maintaining sleep (fragmented sleep) or hyposomnia (lack of sleep) may occur

    Hypersomnia - excessive sleeping (common in the acute stages of the illness, a rare feature thereafter. Is more common in children than adults and thought to be most often caused by a dysfunction in the posterior hypothalamus and the upper part of the mid-brain.)

    Very light sleep (lack of deep stage sleep)

    Dreaming changes: intensely colourful and bright dreams (vivid), violent and attacking nature of dreams (nightmares), frequency of hypnagogic and hypnapagogic dream states (waking dreams, thematic dreams, pain dreams and sleep paralysis) and increased dreaming activity (thought to be caused by sensory seizures in the midbrain). There is also sometimes a complete lack of dreams.

    Sleep paralysis: temporary paralysis after sleeping (also called waking paralysis, can last from minutes to hours), early waking states (where you are neither asleep nor awake which can last for minutes or many hours) or dysania can occur

    Night extremity hypothermia

    Urinary frequency and bladder dysfunction, uncomfortable or painful/burning urination (Dysuria), difficulty passing urine, incontinence and/or nocturia (excessive urinating at night)

    External visual dysfunctions: photophobia (extreme sensitivity to light), oscillating or diminished pupillary accommodation responses with retention of reaction to light, nystagmus (a rapid involuntary oscillation of the eyeballs), painful or burning sensations in the eyes, floaters, spots and scratchiness in vision, tearing and dry eye, internal and external ophthalmoplegia (paralysis of the extraocular muscles which are responsible for eye movements) changes in colour vision, sluggish focus, an inability to focus or accommodation difficulty (difficulty switching from one focus to another) can all occur as can double, tunnel, wavy or blurred vision, or night blindness.

    Central visual dysfunctions: visual comprehension dysfunction, reading ability loss or difficulty, writing ability loss or difficulty, distance or spatial dysfunction, loss of depth of field – less ability to make figure/ground distinctions, vision reversals and vision clouding. See also the COGNITIVE & NEUROLOGICAL DYSFUNCTIONS section for more on difficulties with reading and writing

    Intolerance of extremes of hot and cold weather, may cause an onset of the homeostatic disequilibrium symptom complex. Periods of extended hot weather in particular are seldom well tolerated by M.E. patients. See THE HALLMARK CHARACTERISTIC of M.E. section for more information

    Insomnia, migraines, irritability or generally ‘feeling off’ a day or two before the weather changes. Changes in temperature or humidity can cause stiffness or increased aching or pain in the muscles. Changes in barometric pressure can cause night sweats and spontaneous sweating during the day

    Marked weight gain (often independent of dietary changes)

    Marked weight loss (often independent of dietary changes). Rapid weight loss can also occur despite large quantities of food being eaten

    ME/ICD-CFS FATALITIES: Most deaths from ME/ICD-CFS (around two thirds) are due to organ failure, usually cardiac or pancreatic. Death can also occur as a result of secondary infections in a similar way to AIDS, or be due to severe cardiac irregularities or problems with maintaining breathing. See THE LATE EFFECTS OF ME by Dr Elizabeth Dowsett for more information, see also: The Severity of M.E.

    CO-MORBID ENTITIES: (Note that some conditions, such as NMH for example, are instead included in the general symptoms list because they are so central to ME/ICD-CFS)

    Increased tendency for Mitral Valve Prolapse, especially in children (breathlessness, fatigue, edema)
    Viral myocarditis - inflammation of the heart (usually of little consequence but which can sometimes lead to substantial cardiac damage and severe acute heart failure. It can also evolve into the progressive syndrome of chronic heart failure. There have been sudden deaths associated with exceptional physical exertion in patients with viral illnesses)
    Pericarditis (the outer layer of the heart, pericardium, is inflamed. Symptoms include chest pain, shortness of breath, and rapid, shallow respiration)
    Secondary or reactive depression (as with any other chronic illness)
    Irritable Bowel Syndrome
    Raynauds phenomenon (poor circulation)
    Systemic yeast/fungal infections
    Multiple Chemical Sensitivity Syndrome MCSS
    Carpal tunnel syndrome (weakness, pain, and disturbances of sensation in the hand)
    Pyriform muscle syndrome causing sciatica
    Positive Fibromyalgia tender points (FMS) and Myofascial trigger points (MPS) are common
    Temporomandibular Joint Syndrome TMJ (spasms of the jaw muscles causing intense pain)
    Hashimoto's thyroiditis
    Sicca Syndrome
    Endometriosis (the presence and growth of functioning endometrial tissue in places other than the uterus that often results in severe pain and infertility) may be more common in ME/ICD-CFS
    Dysmenorrhoea - menstrual pain experienced a week before, during and a few days after periods (other symptoms include; headache, suprapubic cramping, backache, pain radiating down to anterior thigh, nausea and vomiting, diarrhea, syncope)
    More severe or new onset PMS
    Migraines (nausea, vomiting, head pain, light and noise sensitivity which can last for hours or days)
    Restless Legs Syndrome RLS
    Sleep apnea
    Irritable Bladder Syndrome
    Cystitis (inflammation of the urinary bladder)
    Prostatitis (inflammation of the prostate gland)
    Sjogrens syndrome (autoimmune disorder affecting moisture producing glands in the body)

    For more information on M.E. symptoms; including detailed descriptions of each symptom and what causes it the following two books are invaluable: Verillo and Gellman's CFS: A Treatment Guide and The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome edited by Byron Hyde M.D. These two books are easily far superior to all others on this topic and I cannot recommend them highly enough. Both books are suitable for M.E. patients and Doctors with an interest in M.E. alike.

    SYMPTOM LIST REFERENCES (and recommended reading list)
    All symptoms/signs are taken from the following references. The headings and groupings of symptoms are largely my own however, so any faults with which symptom is in which category are mine alone (and there was considerable room for error as many –almost all – symptoms fit into more than one sub-heading).

    Bell, David S MD 1995, The Doctor's Guide to Chronic Fatigue Syndrome, Perseus Books, Massachusetts
    Carruthers, B. et al 2003, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols, Journal of Chronic Fatigue Syndrome, Vol. 11 (1), The Haworth Press, New York
    Dowsett, Elizabeth MBChB. 2001, THE LATE EFFECTS OF ME Can they be distinguished from the Post-polio syndrome? [Online], Available:
    Dowsett, Elizabeth MBChB. 2000, Mobility problems in ME [Online], Available:'s/mobility%20problems.htm
    Dowsett, Elizabeth MBChB. 1999 (a), Redefinitions of ME [Online], Available:’s/Redefinitions%20of%20ME.htm
    Dowsett, Elizabeth MBChB. 1999 (b) Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE!, [Online], Available:'s/Research%20into%20ME.CFS%201988-98.htm
    Dowsett, Elizabeth MBChB. Undated (a), Time to put the exercise cure to rest, [Online], Available:’s/exercise%20cure%20to%20rest.htm
    Dowsett, Elizabeth MBChB. Undated (b), Differences between ME and CFS, [Online], Available:’s/me%20and%20cfs.htm
    Dowsett, Elizabeth MBChB. in: Colby, Jane 1996, ME: The New Plague, Ipswitch Book Company Ltd, Ipswitch.
    Hyde, Byron M.D. 1992, Preface in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Nightingale Research Foundation, Ottawa
    Hyde, Byron M.D. & Anil Jain M.D. 1992, Clinical Observations of Central Nervous System Dysfunction in Post Infectious, Acute Onset M.E./CFS in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Nightingale Research Foundation, Ottawa
    ME Society of America, [Online], Available:
    Ramsay, Melvin A. 1986 MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. [Online], Available:
    Verillo, Erica F & Gellman, Lauren M 1997, Chronic Fatigue Syndrome - A Treatment Guide, St. Martin's Griffin, New York

    Hooper, M. Marshall E.P. & Williams, M. 2001, What is ME? What is CFS? Information for Clinicians and Lawyers, [Online], Available:
    Hooper, M. & Montague S 2001. Concerns about the forthcoming UK Chief medical officer’s report on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) notably the intention to advise clinicians that only limited investigations are necessary (The Montague/Hooper paper) [Online], Available: MONTAGUE%20HOOPER%20PAPER%20-%20AMENDED%20CORRECTED%20VERSION.pdf
    Ramsay, Melvin Dr. ME Association Newsletter, Winter 1989: 20-21)
  2. dononagin

    dononagin New Member

    lot of good info here
  3. karinaxx

    karinaxx New Member

  4. butterfly8

    butterfly8 New Member

    Thanks for this - I'll take a copy to my sympathetic but not well informed doctor.
  5. IndianPrincess

    IndianPrincess New Member

    Thanks Karinaxx!
    After reading this I now better understand why we need a name change in this country and wonder why the CDC is covering up, if not brushing aside the seriousness of this disease.

    Sadly, doctors in this country are grossly ill informed as a result and we, their patients suffer, if not die as a result. Unfortunately, I doubt there are any statistics on the number of death in the CFIDS/M.E.

    Obviously we need a name change, education in our medical schools and more awareness.

    I wonder if it would be beneficial to go to European educated doctors as opposed to those who went to U.S. medical schools.

    A good article to send to disability attorneys as well.

  6. IndianPrincess

    IndianPrincess New Member

    Maybe we would be better off not telling new doctors that we are seeing that we have been diagnosed as having CFS, CFIDS, Fibro and just tell them our symptoms.

    My boyfriend sees my frustration with getting adequate treatment and tests. He suggested that maybe, by not saying anything, the doctors would dig deeper and find the abnormalities rather than blow me off.

    When he can, he goes with me and tells the doctors what he observes.

  7. cymbeline

    cymbeline New Member

    This is really useful, it certainly describes what i experience better than anything else i have seen.
    I also copied it to a friend of mine who is doing research in this area.
  8. barbinindiana

    barbinindiana New Member

    This valadates the hell I've been living for almost 8 years now. We who suffer from CFS/ME need to make copies of this and give it out to everyone that we have continous contact with, and that is exactly what I'm going to do. If they can't read this and start showing us some respect, or they still want to treat us like liers or hypocondriacs, then we need to boot them right out of our lives.

    Thank you soooo much for posting this info.

    My sincere graditude.
  9. karinaxx

    karinaxx New Member

    who is doing incredible work in researching all the information and passing it on to us, on her site the hummingbird.
    i was amazed at the presize description of all the symptoms and one has caught me especially: the temporary amnesia while driving. i had this epsisodes(very scary) and i know many here described it, but somehow i never made the conection to an illness, just lived with it and never told anyone about it. it was an eye opener to see all this symptoms listed so clearly, symptomps i just overlocked or vergot.
    love karina

  10. Tantallon

    Tantallon New Member

    Thanks for posting this Karina



    Bump...good stuff!
  12. Lolalee

    Lolalee New Member

    to read later

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