Almost half a million Canadians with debilitating Chronic Fatigue Syndrome (CFS) also suffer severe deprivation and isolation, in many cases worse than more recognized illnesses such as stroke and cancer, according to the latest report from Health Canada.
The 2014 Canadian Community Health Survey (CCHS) (published June 17, 2015) reveals that, among Canadians aged 12 or older, 1.4% have been diagnosed by a health professional with CFS, relatively unchanged from figures collected in 2010 and 2005.
The survey reveals a tragic reality of hundreds of thousands of patients disenfranchised from the community, requiring help to carry out even the simplest of tasks such as feeding, bathing and grocery shopping.
Although a more detailed breakdown of the 2014 survey is not available, an analysis of the 2010 CCHS revealed that as many as 20% of Canadians with CFS could not afford or were too incapacitated to feed themselves.
Respondents were asked: “Now I’d like to ask about certain long-term health conditions which you may have. We are interested in “long-term conditions” which are expected to last or have already lasted 6 months or more and that have been diagnosed by a health professional.”
Data from the 2015 CCHS is scheduled for release on November 15, 2016.
Statistics Canada, which carried out the survey on behalf of Health Canada, noted that the “proportion of women diagnosed with any of these conditions (1.0 million) was consistently higher than for men (390,000)”.
To display a table outlining the prevalence of fibromyalgia, CFS, and multiple chemical sensitivities by sex in Canada, tap the toggle below, or visit Statistics Canada.
Illness predominates at a time when patients should be raising families and working
While a breakdown of the 2014 survey is not available, Canada’s National ME/FM Action Network analyzed the data from the 2010 and 2005 surveys.
According to the support group, “CCHS 2010 showed a slight increase [from 2005] in the ages of people with chronic conditions, consistent with the general aging of the population.”
A staggering 24% of seniors indicated they had been diagnosed with CFS.
“In CCHS 2005, about half the people diagnosed with CFS, FM and/or MCS were between 45 and 64 years old while another quarter were in the 25-44 age group.”
“These illnesses predominate in the years when patients would ordinarily be raising families and working.”
Women comprise a large majority of patients
Women comprised almost two-thirds of the sample group for CFS in 2014, though this was down marginally from data collected in 2010 and 2014.
In 2014, 63% of the CFS cohort were women, compared with 66% in 2010 and 69% in 2005.
Percentage of Canadian women with chronic fatigue syndrome
|Chronic Fatigue Syndrome||63%||66%||69%|
Disability in ME and CFS is on a level comparable with Alzheimer’s and stroke
Disability in ME and CFS can vary widely from patient to patient, with about 25% of patients being bedbound, some having to be tube fed. Several useful means of grading disability are outlined in 2 subjective measures of incapacity in CFS.
In CCHS 2010, a key measure of disability was whether a patient needed help with basic tasks. Although this data is not available for 2014, in 2010 respondents were asked a series of questions about whether they needed help with such tasks as preparing meals, getting to appointments, shopping, housework and personal care.
The 2010 survey data confirmed that CFS is a very disabling illnesses, on a level comparable with Alzheimer’s and effects of stroke, with 47% of CFS patients requiring assistance.
A disturbing note to the figures is that, while the majority of people with Alzheimer’s and stroke are seniors, the majority of people with ME and CFS are of working age.
Percentage of Canadians needing help with tasks (2010)
|Effects of Stroke||52%|
|Chronic Fatigue Syndrome||47%|
20% of ME and CFS patients unable to put food on the table
Food insecurity is a very concrete indicator of marginalization or deprivation in society.
In 2010, rates of food insecurity among the CFS cohort were the highest of any of the surveyed groups, and three times that of the target population, revealing an appalling picture of neglect and marginalization.
As much as 20% of CFS patients found it difficult to put food on the table, whether this was due to financial hardship or physical incapacity.
This data was not available for 2014.
Percentage of Canadians found to be food insecure (2010)
|Percentage of the cohort found to be food insecure||2010||2005|
|Chronic Fatigue Syndrome||20%||17%|
Access to adequate healthcare
In 2010, patients with CFS were among those with the highest rates of unmet health care needs. Twenty-nine percent of CFS patients reported unmet health care needs, compared with 21% for the effects of stroke and 16% for cancer.
Percentage of Canadians reporting unmet health care needs (2010)
|Chronic Fatigue Syndrome||29%|
|Effects of a stroke||21%|
|Alzheimer’s disease or other dementia||14%|