Myalgic Encephalomyelitis
Medical condition affecting, among other things, the nervous system

What does that mean?

Myalgic Encephalo myelitis:
Myalgic - means muscle - indicating that pain within the muscles and joints is involved.
Encephalo - means brain - indicating that the brain's way of functioning is involved.
myelitis - means inflammation of the spinal cord.

Myelitis does not occur with M.E., and the medical phrase 'Pathy' is now being used instead, which means 'sickness' or 'illness'. Therefore, in most modern diagnosis, Myalgic Encephalomyelitis is now known as Myalgic Encephalopathy, but both terms are still abbreviated and referred to as M.E.

So what exactly is M.E.?

As an illness, M.E. has actually been recognised world wide for centuries, and has even been described in medical literature in its present form since the 1930's. Originally called the 'yuppie flu' in the 1980's, the symptoms of M.E. were constantly rejected by the medical profession, resulting in utter refusal that it was an 'official' illness at all. Fortunately, in today's modern society, M.E. is recognised and acknowledged by both the Departments of Health and Social Security, and is also officially listed as a 'disease of the nervous system' by the World Health Organisation.

M.E. falls loosely under the same umbrella as CFIDS, Fibromyalgia and PVFS, and has been linked with a combination of bacterial, protozoal and viral infections, exposure to toxic chemicals - especially organophosphates and organochloride insecticides, and severe or prolonged stress levels. According to recent research results, it has been discovered that patients diagnosed with M.E. have less blood circulating in the body than non M.E. sufferers, with a resultant lowering of the number of oxygen carrying red blood cells. There is still no definitive answer as to what actually causes this illness, and full research into M.E. is slow and ongoing.

'There are no visible symptoms to see such as a rash or a cut. Most M.E. sufferers are so ill or in so much pain that they are housebound, and thus, they are out-of-sight - M.E. is a chronic, debilitating multi-system disorder comprised of numerous symptoms, which include extreme malaise, pain, cognitive dysfunction, and overwhelming fatigue. At this time there is no cure for this illness. M.E. has similar symptoms to many disorders, but should not be confused with them.' Dr David Bell

Who suffers with this illness?

M.E most commonly affects fit, hardworking people, aged 20-40, in occupations with increased exposure to infections, especially entroviruses. M.E. hits all categories; young and old, healthy and frail, men, women and children.

What causes M.E.?

M.E. is, in most cases, initially triggered by a viral illness such as influenza, bronchitis, glandular fever or viral meningitis to name but a few. Other reported triggers have been vaccinations, exposures to chemicals, stress and accidents. For other people, M.E. sets in gradually with no obvious cause.

Is there a Medical Test for diagnosis?

No, there is at this time no medical laboratory test to prove the existence of the disease. Diagnosis is based on a careful history and examination and exclusion of other conditions, and it can often be difficult to distinguish M.E. from other forms of chronic fatigue, or even the onset of other severe conditions such as M.S.

M.E. is usually only diagnosed when at least three of the main common symptoms have been constantly present for a minimum of six months.

What are the symptoms?

A marked feature of M.E. is the fluctuation of symptoms from day to day, and the tendency for relapses and remissions over months. There is a combination of key symptoms that is remarkably similar from patient to patient; fatigue after minimal effort, malaise and cognitive dysfunction are invariably present.

The symptoms of M.E. vary from person to person. However, some of the most commonly reported are:

    Fatigue. The most common feature for diagnosis is persistent fatigue - a fatigue unlike anything that has been experienced before and quite unlike the usual tiredness that one might feel after a busy day. Although fatigue must be present for a diagnosis, it isn't necessarily the worse symptom. The fatigue will last for days or months following moderate effort and is not refreshed by sleep, in fact the patient often feels much worse in the morning. The fatigue may be physical or mental, can be severe and often fluctuating, and leads to significant reduction in normal activities.
    Severe malaise, particularly following physical or mental exertion.
    Persistent head pains, which does not respond well to painkillers.
    Neurological disturbance is invariably present in the effects of loss of attention, concentration, and short-term memory, forgetting names, and the ususual inability to understand a written paragraph.
    Visual disturbances such as eye pain or excessive blurring, especially when reading.
    Sensitivity to sound.
    Recurrent sore throat and/or swollen glands.
    Muscle and joint pain anywhere throughout the body. The worst pain is usually in the lower back and/or lower limbs. This pain can be very severe indeed and is often not responsive to painkillers.
    Facial pallor, especially with the onset of severe fatigue.
    Altered skin sensitivity, often with the sensation of something crawling on the skin. Increased skin sensitivity, numbness, and tingling in the arms and hands.
    Severe mood changes that are out of character, including irritability, depression, anger and frustration.

What medical treatments are available?

There is, at present, no definitive treatment for M.E., but patients diagnosed early and able to rest in the first year of illness have a better chance of recovery. Some of the individual symptoms can be treated with medication, stress should be avoided and a balanced diet followed. Adjustment to your lifestyle is paramount, and careful pacing out of activity and rest periods is recommended.. 'Activity' in severe cases may mean simply sitting up in bed for 5 minutes in the first instance and then resting flat for an hour, followed by a further five minutes. Very gradual increases in activity or a self-determined pace appears to give the best results.

On many occasions, a GP will prescribe anti-depressants. This is not because M.E. is classed as a form of depression, but rather that many people with M.E. find that low doses of some anti-depressants - particularly trycilics such as amitryptylene, dothiepin, doxepin and trimipramine - help with sleep, brain function, muscle and joint pain and weakness, mood swings and allergies because they help increase levels of serotonin - a vital brain fluid which is normally depleted by the many symptoms of M.E.

What is the prognosis - is there a full recovery?

The prognosis of M.E. is variable and unpredictable. Through clinical observation*, it is suggested that, after the initial illness, some 60% of cases follow a relapsing and remitting course for many years - eventually learning how to manage their illness through careful diet, pacing themselves and leading reduced lifestyles; few can cope with holding down a full-time job. 20% of cases gradually recover, but another 20% sadly deteriorate and become permanently and severely disabled.

May 12th is International M.E. Awareness Day. Please show your support and understanding by wearing a Blue Ribbon

* Action for M.E. information pack for family, friends and carers
Living with M.E. by Dr Charles Shepherd
M.E. - Chronic Fatigue Syndrome: A Practical Guide by Dr Anne Macintyre

PLEASE NOTE: I am not a Doctor. This material should not be used for any form of self diagnosis or treatment. I have suffered with M.E. for the past 2 years, and have included in this Writeup advice previously researched, and information and advice given to me by my GP and Specialist Consultant. If you require further information, please feel free to /msg me or browse through the many informative sites on the internet - a few of which are listed above. I will update this node whenever new information becomes available.

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