CFS Health Consumer Perspective:
The Experience of CFS

"CFS is like living in a fog of fatigue and pain that affects all my body, even after limited activities; the way I move, the way I think and the way I live; rest is bliss to ease the awful pain - but with 70 % less active hours in my day my patience is tested to the limits. I feel I must keep going hoping the "fog" will lift - but how long? My son and I have lost so much. It's 6 years since we rode our bikes together, flew our kites together - now he's 18. My wife grieves over the many losses too."

For the PwCFS it seems extraordinary that such a wide range of symptoms and associated suffering can be caused by an illness. Either from gradual or sudden onset, the effect of symptoms can range from mildly incapacitating (being able to maintain a limited working and social life) to severely disabled (bed and/or house-bound). Delayed incapacity caused by prior exertion creates continual uncertainty and anxiety about undertaking further activities and life/career choices and commitments.

The consequences of illness misnomer

The name "Chronic Fatigue Syndrome" neither adequately describes the range of symptoms nor their severity. Because of the "invisible" nature of the disabilities associated with CFS, the seriousness of this illness is often overlooked or mistaken. PwCFS must live with an illness whose very name is a mockery of their true condition.

Similarly, Hysterical Paralysis after a history of misunderstanding, political lobbying, resource funding and successful research became "respectable" in the name, Multiple Sclerosis. CFS still does not yet enjoy such widespread recognition much to the further dismay of people with the illness. Medical nomenclature still affects the way disease is perceived, initial diagnosis given, and prompts inappropriate responses to those with the illness.

Symptoms

People with Chronic Fatigue Syndrome report a wide range of symptoms which may vary in type and severity (illustrated in the combination of the U.S. Centre for Disease Control (CDC) and other symptom lists developed by researchers, medical practitioners & CFS Advocacy and Support Associations/Societies world-wide.)

Extreme fatigue, loss of energy and weakness are common. Other symptoms may include mild to extreme myalgia associated with muscles and joints, neurological impairment (sequencing, spatial, memory and concentration problems), abnormal sensations such as tingling in different parts of the body, eye problems, light sensitivity, tinitus, sleep disturbance, problems with balance, staggering gait, often long lasting and severe headaches, mood swings, anxiety &/or panic, chills, nightsweats, abdominal problems and pain, heart beat irregularities, hunger for air, and worsening allergy problems.

"Although fatigue is a symptom of CFS, that is often the only symptom acknowledged by health professionals, whilst the other symptoms may be disregarded. It should be emphasised that other symptoms (pain, muscle spasms, neurological etc) may be of the most concern to the PwCFS, and need to be equally regarded both in research and in clinical treatment."

Symptoms less frequently reported include wounds that won’t heal, ongoing unresolved infections, a range of digestive system problems, tachycardia and irregular heartbeat, mouth ulcers, and difficulty in swallowing.

An extreme end of the suffering spectrum