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400,000 Canadians disabled by CFS

20% of Canadians with CFS cannot put food on the table

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.

Table 2. Canadians reporting a diagnosis of fibromyalgia, chronic fatigue syndrome, or multiple chemical sensitivities, by sex, household population aged 12 and older
2010 % 2014 %
Total1 1,397,079 4.9 1,408,023 4.7
Fibromyalgia
Total 438,980 1.5 519,146 1.7
Males 91,485E 0.6E 95,449 0.6
Females 347,495 2.4 423,696 2.8
Chronic fatigue syndrome
Total 411,562 1.4 407,789 1.4
Males 138,082 1.0 149,013 1.0
Females 273,480 1.9 258,776 1.7
Multiple chemical sensitivities
Total 800,562 2.8 722,630 2.4
Male 220,871 1.6 186,169 1.3
Female 579,691 4.0 536,461 3.5

Total reporting fibromyalgia or chronic fatigue syndrome or multiple chemical sensitivities. The totals of individual conditions do not add up to the total as respondents may report more than one condition
Use with caution
Source: Canadian Community Health Survey (3226).

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

Illness/Condition 2014 2010 2005
Chronic Fatigue Syndrome 63% 66% 69%
Fibromyalgia 79% 79% 83%

 

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)

Illness/Condition %
Alzheimer’s 78%
Effects of Stroke 52%
Chronic Fatigue Syndrome 47%
Fibromyalgia 38%
Bronchitis/Emphysema/COPD 31%
Heart Disease 30%
Cancer 27%
Fibromyalgia 38%

 

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
Target Population 7% 5%
Chronic Fatigue Syndrome 20% 17%
Fibromyalgia 13% 11%

 

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)

Illness/Condition %
Fibromyalgia 31%
Chronic Fatigue Syndrome 29%
Effects of a stroke 21%
Cancer 16%
Alzheimer’s disease or other dementia 14%

 

FEATURE PHOTO: Rain by Chris Smart

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Written by Russell Logan

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Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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