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INVISIBLE DISABILITIES ASSOCIATION OF CANADA
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Definition
Diagnosis
Symptoms
Treatment

Definition:

Chronic Fatigue Syndrome (CFS) is one of fifty names for an illness that has caused suffering since the 1850s. Some other names for this illness are Chronic Epstein-Barr Virus Disease, Chronic Fatigue, and Immune Dysfunction Syndrome (CFIDS), and Post-Viral Fatigue Syndrome (PVFS). The emphasis is put on 'fatigue'. Chronic means ongoing and therefore refers to a fatigue that is long-lasting.

The term Chronic Fatigue Syndrome is used primarily in North America. Myalgic Encephalomyelitis (ME) is used in most other countries. It can be best understood when broken down into its individual parts. As you look at the term it becomes clear that the emphasis is on the central nervous system.

My - muscle
algic - pain
encephalo - brain
myel - spinal cord
itis - inflammation

Neither term is satisfactory. People with CFS have many other symptoms contributing to their disability besides fatigue. Seldom is an infection in the brain found in those who have ME as was once suspected.

CFS/ME affects thousands of men, women and children. The majority of sufferers seem to be women between the ages of 30 and 50. Generally these people are high functioning, productive individuals. There are some differences in how children of different age groups are affected by the illness. This topic is dealt with later.

Adults generally fall into one of the following categories. Twenty-five percent are bedridden, 40% are able to maintain part-time work, 35% work full-time, and 50% are disabled and can not work for varying periods of time.

Diagnosis:

Chronic Fatigue Syndrome is the fourth most frequent reason people go to an internist. Whether going to a physician or specialist it is very difficult to get a quick diagnosis of CFS/ME because there is no known cause. There are many theories about what causes CFS. Viruses, bacteria, parasites, abnormal blood cell shape, low blood pressure, and hypoglycemia are some of the theories being studied by researchers around the world.

There are no specific tests (i.e. blood, x-ray) for CFS/ME. A doctor may order a battery of tests to eliminate other medical conditions. Others simply gather information about your symptoms and decide from his own observations that you have CFS. Either way, you can aid in finding a diagnosis by noting the various symptoms you experience and telling your physician about them.

Fatigue is the most obvious symptom. This is not fatigue that disappears after a good night's sleep. It must be severe unexplained fatigue which persists or relapses for 6 months or longer; is not caused by exertion, or substantially relieved by rest; has an identifiable onset (i.e. not lifelong fatigue); and results in a substantial reduction in previous levels of occupational, educational, social or personal activities.

According to Dr. Michael Rosenbaum and Dr. Murray Susser, patients have the following symptoms:

Symptom/Sign Frequency (%)

Fatigue:

  • easy fatiguability 95
  • fatigue alternating with periods of normalcy 70
  • can do regular work in spite of fatigue 60
  • can work only part-time 25
  • house-bound 15
  • bedridden 15

Other Symptoms:

  • headache 80
  • low grade afternoon fever 78
  • swollen lymph glands 70
  • poor concentration 70
  • sore throat 70
  • depression 70
  • allergies 65
  • muscle aches, joint pain 50
  • anxiety attacks 50
  • mental confusion 50
  • sleep disturbances 50
  • abdominal problems 35
  • weight loss 20
  • skin rash 15

Treatments:

Before seeing any medical practitioner, keep a journal of the symptoms (time, severity, improvements, relapses, physical, emotional, and mental state). This is necessary to enable your doctor or other medical person to make an accurate diagnosis and give appropriate treatment. The journal is needed because you may be limited by memory and cognitive problems in remembering everything accurately.

General Practitioner - your doctor will focus on treating the symptoms, not CFS. (As was already mentioned there is no cure for CFS.) It could be medication to help with pain or headaches. He uses conventional methods for treating you. If you feel that these conventional treatments are not appropriate for you then go to a Naturopath, Acupuncturist, or use other alternative approaches.

Naturopath - concentrates on getting the body's balance back into healthy regions. They do this by several methods - herbal remedies, detoxification, Rotational Diets, etc. The appropriate approach is the one that addresses your specific needs.

Acupuncturist - can help with allergies and pain. By using the Chinese concept of Yen and Yang, he can help your body regain balance.

There are practical steps you can take to help move yourself towards wellness.

  1. Rest, especially at the beginning and during relapses. Your body will tell you when it needs a much needed break.
  2. Eat nutritious meals, they give energy and build up the immune system. Unhealthy fats and processed sugar deplete energy levels.
  3. Be careful about taking antibiotics. They flush out natural bacteria, weaken your immune system, cause allergic reactions and counteract vitamin therapy. If you take antibiotics, consider taking some natural remedies to offset the damage they may do to your body.
  4. Exercise according to your body's abilities.
  5. There are some natural remedies that people find helpful. Try one at a time so that you know what works and what doesn't. We are very individual in our illness and also with how we respond to remedies. If one does not work, another may.
    • Magnesium is very good for fatigue. Most people take it close to bedtime. A few people find that taking it close to bedtime actually keeps them awake. You may want to try taking it at bedtime and see how you do. If it seems to keep you awake, try taking it earlier in the day. Magnesium also helps with muscle spasms. Most people take calcium with the magnesium.
    • Evening primrose oil along with fish oil (in order for the primrose oil to work effectively, you need to take the fish oil). Halibut or cod liver oil is the best. The evening primrose oil helps you to feel better in general.
    • Vitamin C, B complex, and E are natural antioxidants and antihistamines. These can help with allergies. If you start having a reaction, taking a vitamin C (1 or 2 grams) can cut it short.
    • Grape seed extract helps with pain.

Generally, a three to seven year recovery rate is given for those suffering from CFS. However, there are those who are 85-90% better within six months. Others are still very ill twenty years later.

Children with CFS/ME:

Some points to consider if you suspect your child has CFS/ME are:

  • The illness is very rare in children under the age of five.
  • Children with CFS/ME will often have a history of allergies or asthma.
  • No obvious sex preference in children under the age of 12.
  • In the younger child the onset is usually gradual (over months or even years, adults with CFS/ME for many years generally had a gradual onset of symptoms).
  • Fatigue is not a predominant factor in younger children.
  • Symptoms tend to blend together in younger children.
  • Symptoms are less severe than with the adult.
  • The course of the illness is milder but more prolonged. Relatively few become symptom free in a few years.

Because younger children are not able to accurately describe a new onset of fatigue, the following criteria can be used to diagnose him/her:

  1. Six of the eight major symptoms: fatigue, headaches, sore throat, lymph node pain, muscle pain, joint pain, abdominal pain, or neurologic symptoms or five of eight major symptoms plus two of three minor symptoms; fever/chills/night sweats, eye pain, skin rash.
  2. Persistence of the symptoms for at least six months.
  3. No other illness suggested by clinical or laboratory evaluation.

Adolescents:

Adolescents are at a critical stage of life. They are discovering who they are, where they want to go, learning interpersonal skills, etc. Having CFS can be especially difficult because it affects all of these important aspects of life. Some who do not have a strong sense of who they are can shift from seeing themselves as being able-bodied to seeing themselves as disabled, therefore, affecting their self-esteem. So, although the illness affects them in ways similar to adults, there are some differences to consider.

  • Most common age of acute onset is at the time of puberty.
  • Acute onset of symptoms - the majority will be well or nearly well within three years.
  • They have significant difficulties in social and school functioning.

Compiled from:
ME Association of Canada pamphlets.
Solving the Puzzle of Chronic Fatigue Syndrome. Michael Rosenbaum, MD, Murray Susser, MD.
CFS/CFIDS/ME in Children. David S. Ball, MD, FAAP.
Chronic Fatigue Syndrome: The Facts. The New Brunswick ME/CFS Association.

Please note that you should always check with your doctor before undertaking any type of treatment.

INVISIBLE DISABILITIES ASSOCIATION OF CANADA
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