my blog has not been updated for some time because i began to wonder if i was only focusing on the negative of what M.E is.
this week is M.E awareness week, time to let others know what it means to those of us affected by the disease and what it does to our familys.
M.E/CFS is a neurological and autoimmune disease that affects some 250,000 individuals in the uk alone, a quater of those are under the age of 16.
people with M.E vary from being able to hold down a job and manage a family at the top of the end the disability scale (90%) to those at the bottom (5%) that are totally bed ridden and rely on another for all of there daily care, and every one inbetween. i fall in the 25% of M.E suffers that are considered to be severe. i function somewhere between 10% and 20% most days with the odd day at 5%.
the biggest issue for those of us with M.E is the lack of understanding of what causes it and how to treat this disease that at its worst is more debilitating than people with AIDS or end Stage cancer.
with the lack of understanding of the cause and how to treat comes the disbelief of some that its not a real disease, so we also end up having to prove our illness as it were to those in authority whither they be DRs, the manager at work and or the benefit people.
all who have to live with M.E are affected by it as it changes what the person can do so others have to do more, they get to see the difficulties, the pain, fatigue, confusion, fear and guilt that the person with m.e feel every day.
here is a comprehensive list of the symptoms that an M.E suffer may experiance, for some of us this is a complex and frightening disease where we will experience multiple symptoms at the same time with and increase and decrease through out the day.
Myalgic encephalomyelitis is an acutely acquired disease 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 M.E. and the most critical in the definition of the entire disease process.
This diffuse brain injury is initiated by a virus infection which targets the brain; M.E. represents a major attack on the CNS by the chronic effects of a viral infection (an enteroviral infection). M.E. 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. It is a loss of normal internal homeostasis.
M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, 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. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle.
Thus 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. M.E. is a distinct, recognisable disease entity with several unique features. Individual 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, 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 characterises M.E. every bit as much as the individual symptoms however is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. The way the bodies of people with M.E. react to these activities/stimuli post-illness is unique in a number of ways. Along with a specific type of damage to the brain (the CNS) this characteristic is one of the defining features of the illness which must be present for a correct diagnosis of M.E. to be made.
The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. include:
1. 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 post-M.E.
2. People with M.E. are limited in how physically active they can be but they are also limited in similar way with; cognitive exertion, sensory input and orthostatic stress.
3. When a person with M.E. is active beyond their individual (physical, cognitive, sensory or orthostatic) limits this causes a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.
4. The level of physical activity, cognitive exertion, sensory input or orthostatic stress needed to cause a significant or severe worsening of symptoms varies from patient to patient, but is often trivial compared to a patient’s pre-illness tolerances and abilities.
5. The severity of M.E. waxes and wanes throughout the hour/day/week and month.
6. The worsening of the illness caused by overexertion often does not peak until 24 - 72 hours (or more) later.
7. The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.
8. The activity limits of M.E. are not short term: a gradual (or sudden) increase in activity levels beyond a patient’s individual limits can only cause relapse, disease progression or death in patients with M.E.
9. The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not just caused by overexertion; there is also a base level of illness which can be quite severe even at rest.
10. Repeated overexertion can harm the patient’s chances for future improvement in M.E. M.E. patients who are able to avoid overexertion have repeatedly been shown to have the most positive long-term prognosis.
11. Not every M.E. sufferer has ‘safe’ activity limits within which they will not exacerbate their illness; this is not the case for the very severely affected.
M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Polio. 25% of M.E. sufferers are severely affected and housebound and/or bedbound. In some cases Myalgic Encephalomyelitis can also be progressive, or fatal.
M.E. is an infectious neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system.
i hope that you have found this informative and gain a greater understanding of what it means to those of us the suffer with this disease every day,
please leave a comment or like the blog if this has made you aware of what M.E realy is