You and Chronic Fatigue Syndrome


What is it?

Chronic Fatigue Syndrome [CFS], also called Myalgic Encephalitis, or ‘yuppie flu’, is a disorder characterised by severe fatigue with even mild exertion, a sore throat with tender lymph nodes in the neck or armpits, joint and muscle pain, headache, unrefreshing sleep and difficulty concentrating, all of which must have lasted at least 6 months and should not have occurred prior to the fatigue. It is diagnosed when all other causes of fatigue have been excluded, as there are no specific tests for the disorder.

What it is not

It is not due to depression.

It is not due to infection with candida or other yeast.

There is no obvious nutritional deficiency.

Who gets it?

It is most common in young to middle aged women, but can affect any age group, including children.

What are the causes?

The cause is unknown, but it is thought to be related to infection with certain viruses or bacteria, including Coxsakie and Ebstein-Barr virus. It is no longer thought that any one agent is responsible, but it is rather the common end point of infection with a variety of agents. Other possible causes include stress activating the hypothalamic-pituitary adrenal (HPA) axis, because lower than usual, but not abnormal, levels of cortisol have been found. Treatment with cortisone does not relieve the symptoms however.

Research has confirmed that the immune system is not functioning optimally, although this is not readily measured by routine lab testing.

Neurally mediated hypotension, a disturbance of the normal autonomic regulation of pulse and blood pressure, is present in some CFS sufferers, but it is not universal.

There is now thought to be a disturbance in the way that cells use energy.

What is the usual treatment ?

CFS is a chronic disease and has a devastating effect on daily life, requiring significant lifestyle changes. Common problems include difficulty in performing normal every day activities due to fatigue, and memory and concentration problems that may seriously affect work or school performance. These can lead to loss of independence and economic security, with worries about raising children, and altered relationships with friends and family, as well as concerns about intimate relationships. These problems lead to feelings of anger, guilt, anxiety, and isolation, which can make symptoms worse, interfere with drug therapies and make recovery more difficult.

Lifestyle changes, with reduction of stress and prevention of overexertion are recommended as well as medication for sleep, pain and other specific symptoms such as low blood pressure.

Carefully supervised physical therapy with gentle stretching is known to be helpful, but too much physical activity can worsen symptoms, and must be done within the patient’s level of tolerance, which may be very limited. Graded exercise therapy (GET) starts very slowly and gradually increases over time. A program that includes active stretching followed by range-of-motion contractions and extensions is usually an effective start. Five minutes per day is a typical starting point for someone who has been totally inactive, and patients must learn to stop their activity before symptoms are worsened.

Cognitive behavioral therapy, or CBT, can help patients adapt to their illness and improve their level of function and quality of life.

Relaxation, meditation and memory aids, such as organizers, schedulers and written resource manuals, can be helpful in addressing cognitive problems. Stimulating the mind with puzzles, word games, card games and other activities may also help for some.

Sleep hygiene is essential. This means using the bed for sleeping and sex only, going to bed at a regular time, avoiding sleeping during the day, and avoidance of caffeine and alcohol at night.

CFS support groups can provide patients with useful current information, and provide a sense of community with people who understand what you're going through. Some patients do not have the energy to physically join a support group but can benefit by participating via teleconference or email.

Depression is a common secondary effect of chronic illness, and antidepressants may be necessary to help adjust to the lifestyle changes needed. Small doses of tricyclics are effective in treating both sleep disturbance and pain management, while SSRIs are used for secondary depression.

Experimentally, Ritalin [used for attention deficit disorder], has been tried with some improvement in fatigue and concentration.

Corticosteroids have produced variable results.

Some people have benefitted from use of the antibiotic doxycycline.

Dietary restrictions and nutritional supplementation have been tried without much success, but patients should try to maintain a healthy diet rich in omega 3 fats with low glycemic load, and minimal animal fats.


What other treatments are available?

Acupuncture is helpful for many patients in lessening fatigue, muscle pain and anxiety.

D-Ribose, an essential source of energy in cells, has helped some.

St John’s Wort may be used for depression as long as no other antidepressant is being used.

Echinacea will support the immune system.

Magnesium supplements may help muscle pain.

A good quality multi vitamin containing 25mg of each B vitamin and sufficient antioxidants is advisable.

Gingko Biloba and Siberian Ginseng help with memory and concentration as well as general wellbeing.

Cat’s claw has immune stimulant, antioxidant and antiiflammatory properties and has been used with some success.

Immune modulators such as Moducare may help.

Due to the chronic nature of CFS and the lack of any real cure, there are many products on the market which claim to relieve symptoms, but sadly few do. Do remember that herbal products can also have side effects and are not always harmless.

WHEN TO WORRY

There are no long term physical complications of CFS, and many people recover, or at least improve within 5 years of the onset. The disease however can cause major disruption to lifestyle due to reduced ability to work, run a household etc, and naturally also has an impact on personal relationships, and for this reason counselling is advised.

 
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