Prevalence of CFS in Canada.

Tom Kindlon

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http://www.statcan.gc.ca/daily-quotidien/150617/t002b-eng.htm

Table 2
Canadians reporting a diagnosis of fibromyalgia, chronic fatigue syndrome, or multiple chemical sensitivities, by sex, household population aged 12 and older


Canadian prevalence figures.png

Data for other chronic conditions were included in the survey in 2010 and 2014. At the time of collection, respondents were asked if they had "chronic fatigue syndrome" that had been diagnosed by a health professional. Although the condition can be referred to by other terms, such as "myalgic encephalomyelitis" or "systemic exertion intolerance disease," this analysis uses the term "chronic fatigue syndrome" to reflect what was asked during the interview.
http://www.statcan.gc.ca/daily-quotidien/150617/dq150617b-eng.htm
 

Tom Kindlon

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http://www.statcan.gc.ca/daily-quotidien/150617/t002b-eng.htm

Table 2
Canadians reporting a diagnosis of fibromyalgia, chronic fatigue syndrome, or multiple chemical sensitivities, by sex, household population aged 12 and older

View attachment 15681



http://www.statcan.gc.ca/daily-quotidien/150617/dq150617b-eng.htm

Data for other chronic conditions were included in the survey in 2010 and 2014. At the time of collection, respondents were asked if they had "chronic fatigue syndrome" that had been diagnosed by a health professional. Although the condition can be referred to by other terms, such as "myalgic encephalomyelitis" or "systemic exertion intolerance disease," this analysis uses the term "chronic fatigue syndrome" to reflect what was asked during the interview.
There was a discussion elsewhere about the prevalence of CFS with these figures being quoted.

However I am sceptical of these figures for CFS given:
(i) studies done in other countries which were more rigorous (e.g. involved physician assessment using specific criteria, often looking for differential diagnoses, etc) which found lower figures

(ii) because whatever way one looks at it, these figures would be an inaccurate assessment of the true prevalence in Canada as lots and lots of people will satisfy CFS criteria but not be diagnosed with it by a health professional. Some people wait years to be diagnosed and some people have it but never get diagnosed. For example, a CDC study found that only 9% with CFS had been diagnosed; a Leonard Jason study found only 16% had been diagnosed.

Accepting these figures, this fact [i.e. that many would be undiagnosed] would mean that much more than 1.4% really have CFS. So maybe 3%-15% of Canadians have CFS. I don't find these figures plausible, making me think that some people were ticking the box when they didn't have CFS. Maybe it was a misdiagnosis or maybe they simply had some chronic fatigue and decided to call chronic fatigue syndrome.
 
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Kati

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http://www.phac-aspc.gc.ca/publicat/hpcdp-pspmc/35-1/ar-02-eng.php

Chronic fatigue syndrome and fibromyalgia in Canada: prevalence and associations with six health status indicators
C. Rusu, MD (1); M. E. Gee, MSc (1); C. Lagacé, MSc(1); M. Parlor, LLB (2)

This article has been peer reviewed

Abstract
Introduction: Few studies have considered the factors independently associated with chronic fatigue syndrome (CFS) and/or fibromyalgia (FM) or considered the impact of these conditions on health status using population-based data.

Methods: We used data from the nationally representative 2010 Canadian Community Health Survey (n= 59 101) to describe self-reported health professional-diagnosed CFS and/or FM, and their associations with 6 health status indicators.

Results: In 2010, diagnosed CFS and FM are reported by 1.4% (95% confidence interval [CI]: 1.3%–1.6%) and 1.5% (1.4%–1.7%), respectively, of the Canadian household population aged 12 years and over, with comorbid CFS and FM affecting 0.3% (0.3%–0.4%) of that population. Prevalent CFS and/or FM were more common among women, adults aged 40 years and over, those with lowest income, and those with certain risk factors for chronic disease (i.e. obesity, physical inactivity and smoking). After controlling for differences between the groups, people with CFS and/or FM reported poorer health status than those with neither condition on 5 indicators of health status, but not on the measure of fair/poor mental health. Having both CFS and FM and having multiple comorbid conditions was associated with poorer health status.

Conclusion: Co-occurrence of CFS and FM and having other chronic conditions were strongly related to poorer health status and accounted for much of the differences in health status. Understanding factors contributing to improved quality of life in people with CFSand/or FM, particularly in those with both conditions and other comorbidities, may be an important area for future research.

 

Kati

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Old Bones

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This article concerning the 2010 statistics can also be enlightening:
http://www.mefmaction.com/images/stories/quest_newsletters/QUEST88Summer2011.pdf

At this point, I consider the 411,500 number being patient being on the 'spectrum'. Whether they meet the Canadian Consensus Criteria . . .
I've always been a bit sceptical of the 411,500 prevalence figure in Canada -- at least with respect to ME vs chronic fatigue, syndrome or otherwise. When diagnosed more than 25 years ago, only two physicians in my city were considered knowledgeable enough to try to treat patients. When My ME specialist retired and I accessed the provincial "find a doctor" database, entering CFS in the search criteria identified only one GP interested in the illness, but many who would not accept CFS patients in their practices. A recent search indicates that physicians are no longer actively excluding us, at least not in their written profiles. But I don't think their knowledge of the illness has increased very much over the years. So, who are making the professional diagnoses? It seems likely that many patients are self-diagnosed -- rightly, or wrongly. Besides, how many people would have noticed, or complied with, the requirement for a professional diagnosis before responding to the survey?

Although our community may consider that providing a high incidence figure gives our neglect some urgency, I think it is just as likely to create a credibility problem. I tend to believe the frequently-reported incidence of between 0.2 - 0.4 percent is more accurate, unless we include people with fatigue only, and not the immune, endocrine, neurological, orthostatic, and cardiac issues, for example, included in the stricter criteria.
 
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Tom Kindlon

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Free full text: http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91
BMC Med. 2011 Jul 28;9:91. doi: 10.1186/1741-7015-9-91.
Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care.
Nacul LC1, Lacerda EM, Pheby D, Campion P, Molokhia M, Fayyaz S, Leite JC, Poland F, Howe A, Drachler ML.

Abstract
BACKGROUND:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. Attempts to estimate the burden of disease have been limited by selection bias, and by lack of diagnostic biomarkers and of agreed reproducible case definitions. We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research.

METHODS:
We compared the clinical presentation, prevalence and incidence of ME/CFS based on a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in three regions of England. Case ascertainment involved: 1) electronic search for chronic fatigue cases; 2) direct questioning of general practitioners (GPs) on cases not previously identified by the search; and 3) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.

RESULTS:
The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. The overall estimated minimal yearly incidence was 0.015%. The highest rates were found in London and the lowest in East Yorkshire. All but one of the cases conforming to the Canadian criteria also met the CDC-1994 criteria, however presented higher prevalence and severity of symptoms.

CONCLUSIONS:
ME/CFS is not uncommon in England and represents a significant burden to patients and society. The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care. We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants. This combination if used systematically will enable international comparisons, minimization of bias, and the identification and investigation of distinct sub-groups of patients with possibly distinct aetiologies and pathophysiologies, standing a better chance of translation into effective specific treatments.

PMID:
21794183
[PubMed - indexed for MEDLINE]
PMCID:
PMC3170215
 

Tom Kindlon

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(Fukuda)

Free full text: http://archinte.jamanetwork.com/article.aspx?articleid=215827

Arch Intern Med. 2003 Jul 14;163(13):1530-6.
Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas.
Reyes M1, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC.

Abstract
BACKGROUND:
Chronic fatigue syndrome (CFS) is a debilitating illness with no known cause or effective therapy. Population-based epidemiologic data on CFS prevalence and incidence are critical to put CFS in a realistic context for public health officials and others responsible for allocating resources and for practicing physicians when examining and caring for patients.

METHODS:
We conducted a random digit-dialing survey and clinical examination to estimate the prevalence of CFS in the general population of Wichita, Kan, and a 1-year follow-up telephone interview and clinical examination to estimate the incidence of CFS. The survey included 33 997 households representing 90 316 residents. This report focuses on 7162 respondents aged 18 to 69 years. Fatigued (n = 3528) and randomly selected nonfatigued (n = 3634) respondents completed telephone questionnaires concerning fatigue, other symptoms, and medical history. The clinical examination included the Diagnostic Interview Schedule for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, laboratory testing, and a physical examination.

RESULTS:
The overall weighted point prevalence of CFS, adjusted for nonresponse, was 235 per 100,000 persons (95% confidence interval, 142-327 per 100,000 persons). The prevalence of CFS was higher among women, 373 per 100,000 persons (95% confidence interval, 210-536 per 100,000 persons), than among men, 83 per 100,000 persons (95% confidence interval, 15-150 per 100,000 persons). Among subjects nonfatigued and fatigued for less than 6 months, the 1-year incidence of CFS was 180 per 100,000 persons (95% confidence interval, 0-466 per 100,000 persons).

CONCLUSIONS:
Chronic fatigue syndrome constitutes a major public health problem. Longitudinal follow-up of this cohort will be used to further evaluate the natural history of this illness.

PMID:
12860574
[PubMed - indexed for MEDLINE]
 

Tom Kindlon

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Free full text:http://archinte.jamanetwork.com/article.aspx?articleid=415556

Arch Intern Med. 1999 Oct 11;159(18):2129-37.
A community-based study of chronic fatigue syndrome.
Jason LA1, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S.
Author information
Abstract

BACKGROUND:
Most previous estimates of the prevalence of chronic fatigue syndrome (CFS) have derived largely from treated populations, and have been biased by differential access to health care treatment linked with sex, ethnic identification, and socioeconomic status.

OBJECTIVE:
To assess the point prevalence of CFS in an ethnically diverse random community sample.

DESIGN AND PARTICIPANTS:
A sample of 28,673 adults in Chicago, Ill, was screened by telephone, and those with CFS-like symptoms were medically evaluated. MAIN OUTCOME MEASURES AND ANALYSES: Self-report questionnaires, psychiatric evaluations, and complete medical examinations with laboratory testing were used to diagnose patients with CFS. Univariate and multivariate statistical techniques were used to delineate the overall rate of CFS in this population, and its relative prevalence was subcategorized by sex, ethnic identification, age, and socioeconomic status.

RESULTS:
There was a 65.1% completion rate for the telephone interviews during the first phase of the study. Findings indicated that CFS occurs in about 0.42% (95% confidence interval, 0.29%-0.56%) of this random community-based sample. The highest levels of CFS were consistently found among women, minority groups, and persons with lower levels of education and occupational status.

CONCLUSIONS:
Chronic fatigue syndrome is a common chronic health condition, especially for women, occurring across ethnic groups. Earlier findings suggesting that CFS is a syndrome primarily affecting white, middle-class patients were not supported by our findings.

PMID:
10527290
[PubMed - indexed for MEDLINE]
 

shannah

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The question of numbers in Canada recently came up on a discussion on FB. I was told the 411,500 was a self reported figure (not requiring actual diagnosis) based on a Stats Can Community Health telephone survey and not accurate at all. Additionally, there would be those with Chronic Fatigue thinking it was the same as Chronic Fatigue Syndrome or M.E., further confusing the stats.

It was suggested that making this a reportable illness and basing the diagnosis on CCC or ICC would come up with a more accurate representation. Since we are banned from blood and organ donation, this is one possibility that we may or may not want but would give us hard numbers.

Based on the US figures of a current population of 324 M and using the 1 - 4 M range they say have CFS (which itself may or may not be accurate), it works out to be .3% - 1.23 % of the population. Applying the same algorithm to Canada works out to be 108,000 to 442,800 people with ME (or a version of CFS of course, depending on the definition used.)

Using @Old Bones incidence rate of 0.2 - 0.4 % which is lower than this figure, US figures would be 648,000 - 1.296,000. Canadian numbers would be 70,000 - 140,000 using the 2013 population of 35 million.
 

panckage

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However I am sceptical of these figures for CFS given:
(i) studies done in other countries which were more rigorous (e.g. involved physician assessment using specific criteria, often looking for differential diagnoses, etc) which found lower figures
I took the survey. I believe it is called the "Canadian Community Health Survey"

Its done over the phone and takes 1+ hours to do. I agreed to do the survey but was never told how long it would be (they probably don't tell you because otherwise no one would take the survey). Naturally I was tired for the second half of the survey so the accuracy of my answers probably trailed off. I just wanted to get it over. The person doing the survey (while a pleasant older gentleman) couldn't speak English very well. He had a heavy accent was difficult to understand. He was trying to small talk with me... I got the impression he was a bit lonely and needed a friend err......

I really wouldn't put much weight behind this survey. The completion rate of 65.1% shows just how poorly it was done. It was WAAAAAAAAAAAAAAAY TOO LONG. It should have been much shorter and should have been done by people who were easier to understand. I mean who wants to spend an hour trying to understand someone with a heavy accent.

Oh and after every question the interviewer would list the choices like:
1 - all the time
2 - most of time
3 - some of the time
4 - rarely
5 - never

The choices for each question would change so they would have to keep being read out. It was just stupid to have this on a phone interview. If done paper based or on the internet it would have taken much less time

edit: Oh and when I was asked about whether I was diagnosed with CFS and Fibromyalgia from a health professional I told them that I did not know, but my doctor was giving me treatment for those illnesses. The interviewer told me that counts as being diagnosed with them. Whether this was how the survey was supposed to be done or whether the interviewer made that interpretation on his own I have no idea :p
 
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Old Bones

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Additionally, there would be those with Chronic Fatigue thinking it was the same as Chronic Fatigue Syndrome or M.E., further confusing the stats.
Absolutely! The GP I saw for the first 13 years was recommended by my company's Chief Medical Officer because she believed he was the most knowledgeable about ME in the city. He was also a very compassionate man who took on patients no other doctors wanted (eg. the homeless, drug addicts). As a result, he agreed to see, at least once, many patients who were looking for medical confirmation of their self-diagnosis. According to him, only one in ten of these people actually had what he referred to as ME. Similarly, the psychologist who did my cognitive and mental testing also expressed the opinion that only ten percent of self-diagnosed ME patients actually had ME. Neither man discounted the genuine suffering of these patients. They just believed there were other explanations for their symptoms.