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NCNED - Epidemiological characteristics of chronic fatigue- syndrome/myalgic encephalomyelitis in Au

Discussion in 'Latest ME/CFS Research' started by hixxy, May 18, 2016.

  1. hixxy

    hixxy Senior Member

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    Authors Johnston SC, Staines DR, Marshall-Gradisnik SM
    Received 21 September 2015
    Accepted for publication 31 March 2016
    Published 17 May 2016 Volume 2016:8 Pages 97—107
    DOI http://dx.doi.org/10.2147/CLEP.S96797
    Checked for plagiarism Yes
    Review by Single-blind
    Peer reviewers approved by Dr Harminder Singh
    Peer reviewer comments 3
    Editor who approved publication Professor Henrik Toft Sörensen

    Samantha C Johnston1,2 Donald R Staines1 Sonya M Marshall-Gradisnik1,2

    1National Centre for Neuroimmunology and Emerging Diseases, Menzies Health Institute Queensland,2School of Medical Sciences, Griffith University, Parklands, QLD, Australia

    Background: No epidemiological investigations have previously been conducted in Australia according to the current clinical definitions of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The aim of this study was to describe sociodemographic and illness characteristics of Australian patients with CFS/ME.

    Methods:
    A cross-sectional survey on the medical history of patients enrolled in an Australian CFS/ME research database between April 2013 and April 2015. Participants were classified according to Fukuda criteria and International Consensus Criteria.

    Results:
    A total of 535 patients diagnosed with CFS/ME by a primary care physician were identified. The mean age of all patients was 46.4 years (standard deviation 12.0); the majority were female (78.61%), Caucasian, and highly educated. Of these, 30.28% met Fukuda criteria. A further 31.96% met both Fukuda criteria and International Consensus Criteria. There were 14.58% reporting chronic fatigue but did not meet criteria for CFS/ME and 23.18% were considered noncases due to exclusionary conditions. Within those meeting CFS/ME criteria, the most common events prior to illness included cold or flu, gastrointestinal illness, and periods of undue stress. Of the 60 symptoms surveyed, fatigue, cognitive, and short-term memory symptoms, headaches, muscle and joint pain, unrefreshed sleep, sensory disturbances, muscle weakness, and intolerance to extremes of temperature were the most commonly occurring symptoms (reported by more than two-thirds of patients). Significant differences in symptom occurrence between Fukuda- and International Consensus Criteria-defined cases were also identified.

    Conclusion:
    This is the first study to summarize sociodemographic and illness characteristics of a cohort of Australian CFS/ME patients. This is vital for identifying potential risk factors and predictors associated with CFS/ME and for guiding decisions regarding health care provision, diagnosis, and management.

    Keywords: chronic fatigue syndrome, myalgic encephalomyelitis, chronic fatigue, diagnosis, epidemiology

    [​IMG]This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.phpand incorporate the Creative Commons Attribution - Non Commercial (unported, v3.0) License. By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms.

    https://www.dovepress.com/epidemiol...bspsyndromemyalgic-peer-reviewed-article-CLEP
     
    Kati, Snow Leopard, Simon and 5 others like this.
  2. Sasha

    Sasha Fine, thank you

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    The fact that most were highly educated seems a red flag. I see no reason for this to be the case (biologically speaking).

    So the characteristics of the patients could just represent the characteristics of people most likely to participate in research surveys. :(

    In fairness:

     
    Dolphin, TiredSam, voner and 5 others like this.
  3. hixxy

    hixxy Senior Member

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    That's kind of annoying. I thought they'd done this based on the surveys we fill out when participating in their other studies. I have to fill out a survey with each blood draw within X number of days.
     
    Sean likes this.
  4. Hutan

    Hutan Senior Member

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    I really want NCNED to be doing amazing work, solving the riddle of this disease. But every time they put out a paper like this or like the underpowered genetic studies, my heart sinks a little ... and makes me less excited about their claim to have found biomarkers.

    What they have here is the demographics of sick people who have the time and wherewithal to participate in surveys. It certainly can't be claimed to be the demographics of ME/CFS. It adds to the authors' publication counts but tells us nothing new.

    What's the bet it will be used by some to make claims along the lines of 'MECFS is a set of symptoms displayed by middle-aged highly educated women who are dissatisfied with their lives'. And I know well how that line of thinking guides management of ME/CFS.

    NCNED, how about going to some Aboriginal communities and finding out the incidence and previous diagnosis rate of ME/CFS there? Or in villages in the Solomon Islands? Or in a rural community in Tasmania? Now that would be interesting. And might result in much better information for 'guiding decisions regarding healthcare provision, diagnosis and management'.
     
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  5. msf

    msf Senior Member

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    Highly educated - so let´s come up with an explanation for their illness that anyone with common sense can see through...
     
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  6. Snow Leopard

    Snow Leopard Hibernating

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    Mean age of onset, 28-30 years old, average duration of illness: 14.5 years!
     
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  7. JaimeS

    JaimeS Senior Member

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    There may not be genetic reasons, but environmental ones: Hyde found that his patients were in education, foreign aid, and medicine, overwhelmingly... where they came into close contact with a wide variety of pathogens every day as part of their job. As a result, the 'average' patient was educated and generally well-informed. Hyde did say, however, that maybe those were simply the people who stuck it out long enough to be diagnosed in the first place: people who didn't really buy it when their physician suggested they get out more, change their hairstyle, or go to a psychotherapist, instead.

    So it's possible that it's not that PWME tend to be clever, but the ones who eventually get diagnosed tend to be.

    -J
     
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  8. JaimeS

    JaimeS Senior Member

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    ....I think that was the original argument! :confused::mad:
     
  9. JaimeS

    JaimeS Senior Member

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    This is, to me, one of the weirdest and most interesting aspects of ME/CFS. Why isn't anybody studying WTH happens to (especially) women at age 30 that makes them suddenly many times more susceptible? I've watched women in my family drop at this age three times, now... I want a study on this!
     
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  10. Hutan

    Hutan Senior Member

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    They are talking about mean age though. So it's possible that there were peaks in adolescence and in the 40's, rather than one peak in the 30's. I seem to remember a Scandanavian age of onset graph that found the two peaks.
     
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  11. JaimeS

    JaimeS Senior Member

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    I did hear about that as well, @Hutan! However, I have heard anecdotally from many that onset was between the ages of 28 and 34. Maybe it's somewhat self-selecting; that's when onset was for me, so those values stick out in my mind.
     
    Hutan likes this.
  12. alicec

    alicec Senior Member

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    My feelings exactly.

    All their recent publications seem to fit into that category.
     
    Hutan likes this.
  13. CCC

    CCC Senior Member

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    This sounds like a thesis (hope it's not a PhD) - small goal, well-defined data source, readily analysed.

    The first thing a PhD student learns is just how small their topic will be compared with their grand goals to save the world. Other students learn the same thing, but honours students are just happy to be there by and large.
     
    Kati likes this.
  14. alex3619

    alex3619 Senior Member

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    Yes, I suspect this too. It looks like a selection bias.

    However I also have to comment that people with money and a better education are more likely to wind up seeking better care and diagnosis. Other people may be less likely to even get a proper diagnosis.

    More educated people are also more likely to wind up places like here at Phoenix Rising. That is changing however, I believe most young people will find places like this, or research studies, more often than previous generations. Its the internet age. So I expect some degree of selection bias will decrease over time. Its mostly a matter of awareness.
     
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