They are common poorly understood chronic multisystem illnesses that are newly recognized by the medical community and mainly affect women. Men and children can also be affected. They occur in 1.5 to three per cent of people according to the 2003 Canadian Community Health Survey. They cost the health-care system millions of dollars in health-care costs and the economy millions of dollars in lost wages. As a result of being chronic illnesses, this added burden often leads to family break-ups.
The following are summaries of the clinical definitions that describe these conditions.
Fibromyalgia (FM) is characterized by more than three months of pain on both sides of the body and at least 11 out of 18 positive tender points present on physical examination. Additional symptoms can also include: severe fatigue; sleep disturbance; neurocognitive problems including impaired concentration, reduced short-term memory, and difficulty multitasking; problems regulating blood pressure, irritable bowel symptoms; body temperature instability; and loss of adaptability to stress with anxiety or reactive depression.
The criteria that define Chronic Fatigue Syndrome (CFS) include the following: severe disabling fatigue and post-exertional fatigue; sleep disorder; muscle pain and headaches; problems with mental functioning such as impaired concentration, reduced short-term memory and difficulty multitasking; symptoms related to the autonomic nervous system such as low blood pressure and irritable bowel syndrome; autonomic neuroendocrine symptoms such as low body temperature, weight change and worsening symptoms of stress with anxiety and reactive depression; immune symptoms including ongoing sore throat and swollen glands, flu-like symptoms and new sensitivities to food, medications and chemicals; and persistence of the illness for at least six months in adults and three months in children. All other causes of the above symptoms must be ruled out before the diagnosis of CFS is made.
Multiple Chemical Sensitivity is a chronic condition characterized by symptoms that are reproducible with repeated chemical exposure. Very low levels of chemical exposure (lower than commonly tolerated), produce the patient’s symptoms. The symptoms improve when the patient is removed from the chemicals. The patient responds to many chemically-unrelated substances. Symptoms involve multiple body symptoms but the most common symptoms include feeling dull or groggy, having difficulty concentrating, feeling “spacey”, and having a stronger sense of smell than most people.
As you can see there is considerable overlap in these three conditions. As a result of public pressure, the Ontario government created the Ad Hoc Committee on Environmental Hypersensitivity Disorder chaired by Judge George Thomson. Their 1985 report stated that patients with Environmental Hypersensitivity (now called MCS) had significant health problems that required further research. The committee recommended that patients be treated with compassion and that a special clinic be funded as a bridge between patients, health professionals and researchers. The clinic opened in 1994 at Women’s College Hospital and is now called the Environmental Health Clinic. When the clinic opened it also included an initial grant for a Research Unit connected to the clinic.
The clinic does not have a full time physician to service the province of Ontario. Time is divided by three part-time physicians who work at the Environmental Health Clinic one day a week. This out-patient clinic’s mandate is to do a one time comprehensive patient assessment and a one time follow-up visit a few months later. The clinic is under funded and not able to service the whole province and has a lengthy waiting list. There is an ongoing health-care access problem with patients who have severe MCS and need hospitalization, as there are no in-patient beds available for this patient population in Ontario.
The exact causes of these conditions are not yet known. Fibromyalgia is commonly seen after physical trauma such as car accidents. Chronic Fatigue Syndrome is most commonly seen after a viral illness from which the patient does not recover. Multiple Chemical Sensitivity is most commonly seen after chronic exposure to low levels of chemicals.
So how are these conditions treated? At the Environmental Health Clinic we have developed the concept of “weed and seed”. Weed out the bad habits of being sedentary, stressed out, eating junk food, drinking poor quality water, exposure to poor quality air and having poor sleep habits. Replace these with the “SEEDS” of health, which is short for the following:
Support: medical support for the patient – physical, emotional & spiritual; family, plus work place accommodation
Environment: pesticide free food, water and better indoor & outdoor air quality.
Exercise: and Pacing of activities with appropriate rests
Diet/Drugs: as needed for symptomatic relief of sleep and pain etc.
Sleep Hygiene: for better sleep quality.
In the last few years medicine has developed clinical definitions for the above conditions and research has begun to help unravel the mysteries of these illnesses. Preliminary genetic studies that were done through the EHC Research Unit showed that patients with MCS were “different from the controls in genetic polymorphisms in drug-metabolizing enzymes”. This is a fancy way of saying that patients with MCS metabolize chemicals through their livers differently than normal people. This might help to explain why they are more sensitive to chemicals than most people – perhaps the chemicals hang around longer. More research is desperately needed in these areas.
The book Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia, by Dr. Alison C. Bested, Dr. Alan Logan and Mr. Russell Howe was written to educate and uplift patients and their families.