Myalgic Encephalopathy

What is ME?

Myalgic Encephalopathy or ME, also known as Chronic fatigue syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS) is an illness characterized by prolonged, debilitating fatigue and multiple non-specific symptoms such as headaches, recurrent sore throats, muscle and joint pains, memory and concentration difficulties. Profound fatigue is the hallmark of the disorder. It can come on suddenly or gradually and persists or recurs throughout the period of illness. Unlike the short-term disability of the flu, for example, the symptoms of chronic fatigue syndrome linger for at least six months and often for years. Currently it is estimated that some 250,000 people in the UK are affected by this illness.

What causes ME?

The cause of ME remains unknown. It often develops after a virus, like flu or glandular fever, but it can also happen gradually for no obvious reason and may manifest after physical injury or traumatic life events. People with ME have been found to have abnormalities in the nervous system, including part of the brain called the hypothalamus. The hypothalamus regulates sleep, temperature control and appetite. Abnormalities have also been found in the immune system, however more research is needed before these abnormalities and their impact are properly understood.

What are the symptoms of ME?

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue that patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.

People with ME function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.

In addition to fatigue, a number of other symptoms have been reported by some ME patients. These include:

• irritable bowel, abdominal pain, nausea, diarrhoea or bloating

• chills and night sweats

• brain fog

• chest pain

• shortness of breath

• chronic cough

• visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)

• allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise

• difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)

• psychological problems (depression, irritability, mood swings, anxiety, panic attacks)

• jaw pain

• weight loss or gain

The severity of ME varies from patient to patient, with some people able to maintain fairly active lives. By definition, however, ME significantly limits work, school and family activities.

While symptoms vary from person to person in number, type and severity, all ME patients are functionally impaired to some degree. Studies show that ME can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.

What is the course of ME?

ME often follows a cyclical course, alternating between periods of illness and relative well-being. Some patients experience partial or complete remission of symptoms during the course of the illness, but symptoms often reoccur. This pattern of remission and relapse makes ME especially hard for patients and their health care professionals to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, which can exacerbate symptoms and fatigue and cause a relapse. In fact, postexertional malaise is a hallmark of the illness.

The percentage of ME patients who recover is unknown, but there is some evidence to indicate that the sooner symptom management begins, the better the chance of a positive therapeutic outcome. This means early detection and treatment are of utmost importance. Research indicates that delays in diagnosis and treatment may complicate and prolong the course of the disease.

What treatments are available for ME?

There are many over-the-counter (OTC) and prescription drug therapies that can be used to treat sleep difficulties, cognitive problems, pain and other symptoms of ME. Your GP will be able to advise you on these.

Other treatment strategies include physiotherapy, exercise and massage; flowtron therapy; hyperbaric oxygen therapy; electromagnetic therapy and vibrotherapy to ease pain, stiffness and fatigue; improve bowel function, enhance mood and sense of well-being as well as to help people with the condition relax, sleep better and manage their condition more effectively.

RAMS Therapy Centre and Myalgic Encephalopathy