Invisible Illnesses Need to be Counted
-Fibromyalgia, Chemical Sensitivity
and Chronic Fatigue Syndrome
statistics needed

UPdate Fall 2008

Chemical sensitivity, chronic fatigue syndrome and fibromyalgia are often referred to as invisible disabilities. They are labeled invisible because it is usually impossible to tell by looking at a person that they suffer from one or more of these disabling conditions. The illnesses have also been invisible to many doctors, to agencies which provide disability benefits, homecare and other support services, and to other policy and decision makers. For individuals, living with an invisible illness may result in lack of treatment, lack of income, and lack of social support services. Invisibility may also result in neglect of medical research into these illnesses, which in turn can hold back progress in diagnosis and treatment.

One of the ways to counter invisibility is with hard facts. In 2001, 2003 and 2005, the Canadian Community Health Survey (CCHS) included questions about multiple chemical sensitivity, chronic fatigue syndrome and fibromyalgia. The results were surprising. Data from 2003 revealed that over 1.2 million Canadians, just less than 5% of the population, suffer from one or more of these three conditions.

This makes it all the more surprising that in 2007, Stats Can dropped all questions relating to these three conditions from its survey.

Organizations representing patients living with these three illnesses are asking that this decision be reversed. A letter to the Chief Statistician of Canada, signed by almost 20 organizations across Canada requested that questions about chemical sensitivity, chronic fatigue and fibromyalgia be reinstated in the survey when it is next conducted in 2009. “1.2 million people can’t get wiped off the radar screen that easily,” says Margaret Parlor, President of the National ME/FM Action Network which spearheaded the joint letter. “This information from CCHS is exceptionally important to our organizations. We use the information to understand the needs of our communities and in our discussions with health and social agencies.”

“Without the data, it is harder to document the need for services and benefits which respond to the special needs of these populations,” agrees Eric Slone, President of the Environmental Health Association of Nova Scotia. On behalf of the chemically sensitive population, EHANS endorsed the request for continuing data collection about these illnesses.

Data from the survey can reveal serious and unexpected problems affecting these populations. Hunger is one. Data from the 2005 survey show that 20% of Canadians who reported that they often did not have enough to eat suffered from chemical sensitivity, chronic fatigue syndrome or fibromyalgia. This means that people with MCS, CFS and FM, who represent just under 5% of the population, are four times more likely than other Canadians to be going hungry.

There could be a number of reasons that this population is overrepresented among Canadians going hungry, Parlor explains. Many people who are disabled with these invisible illnesses often have difficulty receiving financial support, because definitions of disability may not capture these conditions. If people do receive benefits, those benefits seldom take into account the extra costs of special dietary needs.

Statistical information such as that collected in the Canadian Community Health Survey makes it possible to demonstrate to decision makers that illness-related problems, such as hunger or homelessness, exist. Without statistical information, organizations working to assist people with these diseases are crippled in their ability to pinpoint the problems and work towards solutions.

“I have had FM for 25 years now and it has very much impaired my quality of life. With no known cure for these 3 conditions at present, we need to maintain data on just how many Canadians are being impacted by them in order to justify more research on their diagnosis and treatment,” wrote one individual who signed the letter to the Chief Statistician.

“If there had been more understanding of my ME/FM/MCS conditions long ago,” writes another endorser, “I would probably have been saved much of a lifetime of fruitless health non-care and my children may have been saved from their almost 40 years of debilitation. So it is very important to have these now recognized conditions included so the best chance can be found for early intervention.”

Physicians caring for people with these under-recognized illnesses underline the need for both public recognition and statistical evidence. “We have repeatedly observed the challenges which patients with these conditions experience in trying to cope with their symptoms and their loss of ability to earn income. Many have difficulties in managing their activities of daily living and maintaining their important supportive relationships. Added to their suffering is general low recognition of these conditions by many healthcare professionals and the public,” wrote Dr. Lynn Marshall of the Environmental Health Centre at The New Women’s College Hospital, Toronto, Ontario.

“Patients report to us that it may take years after the onset of their illnesses for a diagnosis to be made. Hence, we believe that the statistics about diagnosed CFS, FM, and MCS may be a serious underestimate of the actual prevalence of these conditions,” Marshall explained. “Nevertheless, it is highly important for these patients to know that they are not alone in Canada, and for healthcare professionals to have these measurements on an ongoing basis.”

“We strongly support the request made by the patient support organizations in the letter attached to reinstate the prevalence questions on diagnosed Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities in the next Canadian Community Health Survey,” Marshall stated. “Further, we hope that questions about year of onset and year of diagnosis will be included.”

The Environmental Health Committee of the Ontario College of Family Physicians also “strongly support” the request.

For more information from the Canadian Community Health Study relating to chemical sensitivity, chronic fatigue syndrome and fibromyalgia see
UPdate, Fall 2008, Environmental Health Association of Nova Scotia

NEWS FLASH: Statistics Canada has now agreed to include questions about chronic fatigue, fibromyalgia and multiple chemical sensitivity in the Canadian Community Health Survey on a temporary basis for two years. Hopefully, in this time Stats Canada can be convinced to reinstate these questions permanently into the health survey so that information can continue to be tracked and compared.