Symptoms Of Severe Sufferers

ME 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 function is undoubtedly both the chief cause of disability in ME and the most critical in the definition of the entire disease process.

ME 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 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 and research. Confirmation of this hypothesis is supported by electrical tests of muscle and brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions 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 ME.

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

Therefore, although ME 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 M.E (See the symptom list below 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 many symptoms which can be very severe. It is estimated that 25% of people with CFS/ME are too ill to ever leave their homes and many are too ill to get out of bed.

These symptoms are 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)
• 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 very 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 Myalgic Encephalomyelitis 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) 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.

*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.

Other 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
• hyperacuity
• 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
• difficulties with visual and verbal recall (eg. facial agnosia)
• There is often a marked loss in verbal and performance intelligence quotient (IQ).

About the author

This summary of symptoms was written by Jodi Bassett, December 2005. Jodi is a severe ME sufferer, who has been able very slowly to create her own website. She uses a keyboard which enables her to type whilst lying horizontal in bed and can only work for short periods of time.

She thinks of people with severe Myalgic Encephalomyelitis as like hummingbirds vulnerable, strong and eye-hurtingly beautiful all at once, and more than overdue for some consideration and care in this world.

Her summary is NOT designed to diagnose ME, but on Jodi's A Humming Bird's Guide to ME site there is an Ultra-comprehensive M.E. Symptom List with much more information on diagnosis, symptoms and for references.

See Management of ME for more about the vital importance of avoiding over-exertion in M.E.