ME :: Myalgic Encephalomyelitis

Benign Myalgic Encephalomyelitis is the correct term as as used in ICD 10, G93.3

'ME' is a potentially severe, disabling and chronic condition affecting the immune system, the central nervous system, the cardiovascular system, the endocrinological system and muscoskeletal system. Yes, fatigue (physical and cognitive) is a part of this condition/disease but only one of many symptoms.

The cause is as yet unclear but onset is linked in most cases to acute infection, although some people experience a slow, insidious onset. The slow onset probably occurs where a viral attack happens but medical advice has not been sought and the results appear at a latter stage(years). There is evidence implicating certain common and not so common viruses and infections.

Disabling muscle weakness and pain, physical activity induced muscle and all body fatigue, mental activity induced cognitive fatigue,(post-activity fatigue may not occur for 24hr. or more ) severe 'flu-like' malaise(often this symptom may exacerbated by activity), an abnormal exhaustion unrelieved by sleep. There are also various symptoms which indicate a disturbance in brain function, including loss of concentration and short-term memory, dyslexia, nausea, clumsiness and disturbed balance, sensitivity to light and other problems with vision, sensitivity to noise, misjudgement of distance, and sometimes problems with bladder control and bowel disturbance(IBS).Some patients may experience emotional symptoms including depression and mood swings, which can confuse diagnosis in the absence of clinical signs. Symptoms can vary on a hourly, daily, weekly or monthly basis.

The clinical diagnosis of 'ME' has, in the past, been very difficult, as patients first present with a malaise and/or infection, usually a virus, which may or may not be identified. The physician then applies the necessary treatment/s or not and allows the infection to run it's course under this regimen. The outcome is usually falls into one of A: normal health returns B: clinical changes and/or damage as occurred C: some or all initial symptoms remain unchanged(unkown aetiology?). If a patient with prolonged fatigue is still grouped in C or B for a period of six months and meets the criteria (research ME/PVFS or diagnostic ME/CFS) then a diagnosis of postviral fatigue syndrome, myalgic encephalomyeliyis and/or chronic fatigue syndrome,postviral, may be construed. If the patient where fatigue is secondary to other symptoms and is within group B or B/C, then diagnostic ME 1 or diagnostic ME 2 then benign myalgic encephalomyelitis may be the appropriate diagnosis. Although the time to arrive at the diagnosis may be longer than six months( depends on number and rigor of tests/testing). For the patient presenting with just maliase, fatigue etc , there is a problem because clinical signs(ME) are not usually found during a routine medical examination(the 10mimute GP visit) .....more

On-going medical research is revealing abnormalities involving the central nervous system, cardiovascular system, autonomic system, muscle pathology and the immune system. Assessing the degree of disability is complicated by the fluctuating pattern of the illness. To date there is no definitive diagnositic test, tests that are applied are to individual symptoms that may or may not be present at any given time in any single patient or group thereof.

The prognosis in individual cases is difficult to predict in some impossible. Some will improve slowly and may make a full recovery(?), although the process may take years and be punctuated by periods of relapse. Others make variable progress, with fluctuating levels of disability and never achieve full recovery, although there may be varing degrees of improvement over the years. A significant number remain severely disabled, making little or no progress, and a smaller number steadily deteriorate, becoming chair or bed-bound for much of the time.

The disease is a fluctuating one, some(most?) of the fluctuations and/or relapses are due to biological and environmental triggers. There may be periods during which a severely affected patient will have intermittent walking ability. Some may be able to cover varying but limited distances on any one day. The ability to converse, write etc coherently can enter the realm of the lottery. However, such efforts cannot be sustained without ill effects which are slow to dissipate. Patients are advised to try and live well within the limitations of this illness, easier said than done. It is human nature to make hay while the sun shines, and it dose not shine very often.

These limitations will isolate and tend to marginalize most 'ME' patients. The inability to participate in the normal functions of society can create a subjective approach to the surrounding environment. When this occurs without support, the psyche is now vulnerable; depression , mood disorders, etc as may occur with a number of chronic illnesses. This loss of objectivity is not the disease as much as an imposition of the social structure upon an already suffering patient.

It would appear that Benign Myalgic Encephalomyelitis is not necessarily a new illness, as early medical literature appear to describe a similar disease or disease process. However, its incidence does appear to have increased over the last 60 years or so, as our environment changes.

While most prevlent within the 20 - 40 age group, it can affect anyone, regardless of age or social status ( some diseases show no respect). Children and adolescents (some studies show up to 20% of previous diagnoses) can have a particulerly diffuclt existence as education is delivered for the masses and does not cater for indivual situations.

The estimated prevelence of myalgic encephalomyelitis is 01% to 07%. The wide range is caused by the number and disparity of definations and criteria that abound through out the world.

Treatment is usually confined to the various symptoms in the attempt to provide relief(and to return labour to the workforce regardless).While these treatments may help some patients, others may recieve no benefit and others suffering a worsing of these symptoms or the disease in general. Significant improvement may occur in those diagnosed at an early stage who able to rest and make life style changes (also during relapses). The lack of qualitative diagnositic test/s causes some scepticism when it comes to 'Recoveries' as these may be attributed to incomplete diagnosises, misdiagnoses ,the 'snake oil syndrome' and luck.

When the cost of 'ME' is discussed the diagnositic problems blur the situation; are the 'ME' costs factored into the 'CFS' side of the ledger, etc, it is all relative and of little import to the patient. Needless to say the cost to the patient is relative to their finacial dependency before being stricken and ability to generate income after. Many or most treatments fall into the catergory where financial asistance (gov and pharma subsidies) is not available; if the patient's income is government benefits it may be impossible for the patient to avail themselves of many of these treatments. In terms of national and international economies/y it is easy to construct studies based on lost productivity etc showing this the cost of this disease to be in the order of billions of dollars/pounds.

The real bottom-line is the human cost of shattered lives, belitted self-esteem, lost dreams, lost careers, lost independence(both financial and personal), the patronising and the effect on relationships of disbelief in an illness which is neither understood nor fully accepted.

I can not end without mentioning the Name Change debate. For 50 years we have had myalgic encephalomyelitis, in the early 1990's B.Hyde MD of The Nightingale Research Foundation commented 'A pathologically more appropiate name would be Myalgic Encephalomyelopathy - opathy simply referring to the fact that there is pathology' ( The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Byron M.Hyde,MD Ed,). Of late, Dr C Shepard of the MEA assc. has been floating Myalgic Encephalopathy. What ever the name, the patients will still be suffering while 'XXXX' dollars are being spent to debate the merits of everybody's particular fancy.

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Benign Myalgic Encephalomyelitis

" The fact remains that in sporadic cases the illness may be extremely difficult to differentiate from hysteria and other types of psychoneurosis. The diagnosis should be rederved, in isolated instances, for patients with evidence of acute damage to the brain or cord, including the characteristic paresis. If not, the syndrome will become a convenient dumpingground for non-specific illnesses characterised by fluctuating aches and pains, fatigue and depression."

E.D. Acheson KBE
AJM April 1959

MAY 12   2009

Awareness Day

Severity of acute illness predicts post-infective fatigue syndrome.
The severity of acute illness is a key risk factor for post-infective fatigue syndrome, rather than sex, age, or psychological factors. The syndrome represents a stereotyped outcome from several viral and non-viral infections. Hickie and colleagues (p 575) followed more than 250 patients with Epstein-Barr virus, Coxiella burnetii, or Ross River virus at regular intervals in a year from the time of acute infection, using self report, structured interview, and clinical assessment. A relatively uniform post-infective fatigue syndrome persisted for six months or more in a significant minority of patients.

Ian Hickie et al
BMJ 2006;333
(16 September)

ME/CFS International Awareness Day

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