About the Illness

WHAT IS MYALGIC ENCEPHALOMYELITIS (ME)?

ME and CFS are different names used for the same syndrome depending on the preference of the individual doctor making the diagnosis. ME/CFS is a potentially severe, disabling and chronic condition affecting the immune and central nervous systems. The cause is as yet unclear, but onset is linked in most cases to an acute infection, although some people experience a slow, insidious onset.

It may follow a commonly recognised viral infection such as Glandular Fever, Ross River Fever, Hepatitis or some other as yet unrecognised agent or an event such as vaccination, anaesthetic, severe physical or emotional stress. This complex illness (also given many other names) is characterised by incapacitating fatigue, neurological problems and a constellation of symptoms that can resemble other disorders.

SYMPTOMS

The main symptoms are feelings of extreme illness, persistent exhaustion, muscle aches and tenderness, all exacerbated by physical and mental exertion. Every system in the body can be affected to a degree, adding a wide range of symptoms and health problems which vary in intensity over time.

Some sufferers experience severe pain, especially in the head, neck and shoulders. Memory and ability to concentrate may be impaired.

Sufferers may become irritable and depressed. Many will develop sensitivities to foods or other substances. Other variable conditions are disturbed balance, hearing, vision, sensation and sleep patterns, emotional changes and poor circulation. Digestive dysfunction; bloating.

The degree of physical incapacity varies greatly from patient to patient and from day to day; or even from morning to afternoon in the same patient.

INCIDENCE

ME is a common disorder occurring world-wide, occasionally reaching epidemic proportions. It affects men, women and children in all age groups, and more than one member of the family may be afflicted.

POSSIBLE COURSES

The condition may take one of three courses. Some recover completely after months or years; others appear to recover but are prone to relapse if they exceed the limits of physical or mental exertion imposed by the disease. In a third group, the condition becomes chronic and severe.


WHAT IS FIBROMYALGIA (FM)?

The FM Syndrome is a common and perplexing clinical condition characterised by constant presence of widespread pain, so severe that it is often incapacitating, plus the presence of symmetrically displayed “tender” points in muscles, tendons or bony prominences that are painful to palpation. The syndrome may also include non-restorative sleep, muscle stiffness and fatigue. Many researchers now believe FM and CFS to be different sections of the one syndrome.

DIAGNOSIS

Although there is no single specific diagnostic test for FM, it remains a disease characterised by numerous abnormalities of the immune system, the nervous system and the body’s metabolic processes.

Currently diagnosis is made by employing a set of criteria (not yet internationally uniform) dealing with history of symptoms (including new onset of persistent or relapsing unexplained chronic fatigue for over six months, the presence of tender points in 11 of 18 specific points when 4kgs of pressure is applied and careful exclusion of all other illnesses with similar symptoms).

Researchers are identifying specific objective markers which support diagnosis, e.g. immune dysfunction, viral reactivation, exercise related dysfunction, brain dysfunction and red blood cell shape deformation. As the cause and mechanism of this disease becomes clear, conclusive diagnostic standards will be developed and accepted.


PERSONAL AND SOCIAL PROBLEMS

  • Difficulty in obtaining a diagnosis
  • Uncertainty about the course of the illness
  • Grief over the loss of former capabilities
  • A sense of isolation as others get on with their lives
  • Family and marital stresses
  • Possible loss of employment, leading to financial stresses
  • Loss of self-esteem and confidence.

MANAGEMENT

There is no cure, and no therapy aimed at individual symptoms is uniformly successful. An early diagnosis and adequate rest during the acute phase and during relapse appears to bring the most significant improvement.

It is important for sufferers to identify their limitations and to learn to operate within them, accepting the fact that they have a chronic illness rather than denying the reality of their illness.

THINGS THAT MAY HELP

  • Change of lifestyle where necessary
  • Appropriate balance of rest and gentle activity
  • Learning to “know the illness” (education) in order to gain some sense of control
  • Support and understanding from GP, family and friends
  • Contact with other sufferers in a support group to help overcome the sense of isolation and helplessness
  • Medication for relief of various symptoms, e.g. sleep disorder, pain and fatigue. Drugs need to be individually tailored and must be taken in unusually low doses
  • Good nutrition – a “clean” whole foods diet, vitamin and mineral supplementation, plus B12 and Evening Primrose Oil, depending on Red Blood Cell analysis
  • Complementary therapies – acupuncture, acu-pressure massage, homeopathy, naturopathy, meditation, Tai Chi, gentle Yoga
  • For severe cases – home care, financial support through DSS (Sickness Allowance or Disability Support Pension), counselling and accepting help
  • Keep a diary and see if a pattern develops.

THINGS TO AVOID

  • Physical and mental stress
  • Vaccinations, general anaesthetics and antibiotics unless absolutely necessary
  • Foods and chemicals known to cause sensitivities, also sugar, alcohol and caffeine
  • Infections.

As in combating any chronic illness, a positive, hopeful attitude is essential.

2 comments

  1. Hello my husband has had ME for 20 years. We have two children and the daily pressure of living with this illness is taking its toll on all of us. Is there any family support program where families of sufferers get together? We live on the Sunshine Coast?

    Thank you
    Korina

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