What is Myalgic Encephalopathy/Chronic Fatigue Syndrome?

Myalgic Encephalopathy/Chronic fatigue syndrome is a serious and debilitating illness affecting the nervous, immune, endocrine and musculoskeletal systems, which can last for years, and sometimes for life.
The major feature of the illness is extreme exhaustion, accompanied by a range of other symptoms; the exhaustion does not result from any type of exertion and is not relieved with rest or sleep. In some cases the illness causes persistent disability, while in others it follows a relapsing and remitting course.

People with M.E./CFS are not just "tired for a long time"; M.E./CFS is not just "chronic fatigue". Many people complain of fatigue (up to 30% of the population at any one time!), but of all people reporting to doctors with the complaint of fatigue, fewer than 10% will have M.E./CFS. In M.E./CFS, the exhaustion or fatigue is usually accompanied by other flu-like symptoms, which can be extremely distressing.

Symptoms (must be present for a minimum of six months).

Can include:

· Persistent and profound fatigue, exhaustion and debilitation (often made worse by exercise.)
· Flu-like symptoms including sore throat, fever and sore lymph glands.
· Muscle, joint pain and weakness.
· Tachycardia.
· Thoracic symptoms including palpitations and breathing difficulties.
· Seizures.
· Headaches of a severity, frequency and type not experienced before.
· Nausea, bowel disturbances and reduced bladder control.
· Balance disturbances, dizziness and clumsiness.
· Fainting
· Sensitivity to heat and/or cold.
· Numbness, tingling and/or burning sensations in the face or extremities.
· Muscle twitching.
· Weight changes without changes in diet.
· Chills and night sweats.
· Tinnitus, vision problems and sensitivities to light and noise.
· Skin sensitivity and rashes.
· Sensitivities to foods and common chemicals.
· Alcohol intolerance.
· Sleep problems including both insomnia and an excessive need to sleep yet waking unrefreshed.
· Impaired concentration and thinking skills.
· Poor short-term memory.
· Trouble finding words.
· Anxiety and mood swings.
· Gastrointestinal dysfunction and in severe cases gastroparesis.

What causes M.E./CFS?

The cause of M.E./CFS is unknown, although several research groups around the world believe that the symptoms may be caused by a continuing immune response, due either to a persisting infection or to the failure of the immune system to "turn off" after an initial infection. Other researchers are focusing on disturbances in brain chemistry, which may contribute to the symptoms, and some are examining alterations in cellular metabolism, which could also be of significance.

In 75% of cases, M.E./CFS begins with a viral infection, or what is apparently a viral infection. It begins suddenly, with typical "viral-like" symptoms. Occasionally M.E./CFS begins with a bacterial or parasitic infection, or with a vaccination, or exposure to a toxic chemical - i.e., some sort of challenge to the immune system. Frequently associated with this immune system challenge are other factors, such as strenuous physical activity or psychological stress. In up to 25% of cases, the onset of M.E./CFS is gradual, with no recognizable precipitating event.

Many people in the community experience "viral" infections under similar circumstances, but what distinguishes M.E./CFS is that the symptoms remain - for a minimum of six months, and frequently for many years. For this reason, researchers are examining whether people with M.E./CFS have a genetic pre- disposition to developing the illness; and whether certain viruses that can evade the immune system are present in people with M.E./CFS.

Diagnosis

There is no laboratory test, which can be used to diagnose M.E./CFS. Instead, diagnosis relies on careful evaluation of the patient's history and exclusion of other conditions by the doctor. The patient must then fulfil the case definition for M.E./CFS. Laboratory tests can be used where indicated to exclude other conditions. Some laboratory tests (eg. immunological tests) can be used as evidence to support the diagnosis, but alone have no diagnostic value in the illness. Sophisticated laboratory tests are research tools, and are not used in routine diagnosis of the illness. The patient's history (eg. sudden onset of a "viral" illness and typical symptoms) often points to the likelihood of M.E./CFS.

There are three sets of diagnostic criteria for M.E./CFS in use, which are generally similar. The criteria devised and used by the researchers at The Prince Henry Hospital are as follows:

The patient must have:

Chronic persisting or relapsing fatigue of a generalized nature, exacerbated by minor exercise, causing significant disruption of usual daily activities, and present for greater than six months.
Neuropsychiatric dysfunction including impairment of concentration evidenced by difficulty in completing mental tasks which were easily accomplished before the onset of the syndrome; and new onset of short term memory impairment.
No alternative diagnosis reached by history, physical examination or investigations over a six-month period.

Researchers have decided that people with the symptoms of M.E./CFS must be unwell for a minimum of six months before being given the diagnosis of M.E./CFS. While somewhat arbitrary, this requirement recognizes the fact that delayed recovery after viral or other infections is very common in the community, and serves to distinguish those with short-term illness from those with longer-term (or chronic) illness, i.e. M.E./CFS.

What other diseases have some symptoms similar to M.E./CFS?

Before the diagnosis of M.E./CFS can be arrived at, other conditions, which can have similar symptoms to M.E./CFS, must be excluded. These include cancer, HIV disease, autoimmune diseases, neuromuscular diseases, endocrine diseases, and a range of psychiatric illnesses, to name some. The early stages of multiple sclerosis and systemic lupus erythematosus can resemble M.E./CFS, and must be carefully excluded.

Treatment

No effective treatment for M.E./CFS has been developed.

However several substances have been tested in double blind, placebo-controlled trials, with mixed results.

These include:

· Ampligen (an experimental anti viral drug)
· Acyclovir (an antiviral drug)
· Intravenous Gamma globulin (Gammar)
· Intravenous Vitamin B12
· Transfer factor
· Magnesium injections

Ampligen has shown benefit for people with M.E./CFS in its original trials, but results need to be confirmed through additional trials before the role such substances in treating M.E./CFS becomes clear. Gammaglobulin and magnesium have shown some success with alleviating symptoms in their initial trials, but the results of subsequent trials have contradicted the original findings. We are still waiting for larger trials of these substances to be completed before we will know if they have any role in the treatment of the illness. In Australia, supplies of gammaglobulin are limited, and regardless of efficacy, this drug is unlikely to be available for treating M.E./CFS. At present, M.E./CFS cannot be treated; rather it is managed.

Any treatment that you are considering should first be discussed with your Dr.

Careful Consideration of Information about M.E./CFS

Because the cause of CFS has not been identified and its effect on the body is not well understood, periodically new invalidated beliefs about cures and causes of CFS are widely circulated. Simply be advised to be wary of information that points to sure cures and causes. Specific questions should be discussed with the patient's physician.

*Disclaimer*

This is only a brief overview of M.E./CFS is in no way to replace proper medical advice nor is it meant as a diagnostic tool.

Some of the information was taken from the ME/CFS Society of Western Australia

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