Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Prevalence of CFS in Canada.

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, May 15, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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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

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

    hixxy Senior Member

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    Australia
    Sadly despite those statistics MCS gets EVEN worse funding than CFS and FMS.
     
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  3. Kati

    Kati Patient in training

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    In Canada you get a blank look if you mention the ME word to a health care professional. And not much more respect.
     
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  4. hixxy

    hixxy Senior Member

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    Isn't that the same most places unless you specifically choose doctors that treat ME?
     
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  5. Tom Kindlon

    Tom Kindlon Senior Member

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    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.
     
    Last edited: May 15, 2016
  6. Kati

    Kati Patient in training

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    Drs who treat ME are also caught saying 'chronic fatigue'
     
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  7. Tom Kindlon

    Tom Kindlon Senior Member

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  8. Kati

    Kati Patient in training

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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.

     
  9. hixxy

    hixxy Senior Member

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    Well they aren't doctor treating ME then are they?
     
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  10. Kati

    Kati Patient in training

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  11. Kati

    Kati Patient in training

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    Technically, they are not allowed to treat ME since there are no Health Canada or FDA approved treatments. They may be seen prescribing supplements or treating sleep, and signing disability papers. They are also sending patients for group therapy.
     
  12. Justin30

    Justin30 Senior Member

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    I bet the prevalance is high....now these stats coming out of Canada is cause Drs fail to test for other conditions....

    I dont not believe that in the UK there is only 250,000 sufferers I think this is a understatement.
     
  13. Old Bones

    Old Bones Senior Member

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    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.
     
    Last edited: May 16, 2016
  14. Tom Kindlon

    Tom Kindlon Senior Member

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    Why?
     
  15. Tom Kindlon

    Tom Kindlon Senior Member

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    Free full text: http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91
     
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  16. Tom Kindlon

    Tom Kindlon Senior Member

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    (Fukuda)

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

     
  17. Tom Kindlon

    Tom Kindlon Senior Member

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    (Fukuda)

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

     
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  18. shannah

    shannah Senior Member

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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.
     
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  19. panckage

    panckage Senior Member

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    Vancouver, BC
    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
     
    Last edited: May 16, 2016
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  20. Old Bones

    Old Bones Senior Member

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    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.
     

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