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Collin, Crawley, White: Trends in the incidence of CFS and FM in the UK

Discussion in 'Latest ME/CFS Research' started by mango, Mar 31, 2017.

  1. mango

    mango Senior Member

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    Trends in the incidence of chronic fatigue syndrome and fibromyalgia in the UK, 2001-2013: a Clinical Practice Research Datalink study

    Collin SM
    1, Bakken IJ2, Nazareth I3, Crawley E1, White PD4.

    Author information
    1. School of Social and Community Medicine, University of Bristol, Bristol BS8 2BN, UK.
    2. Norwegian Institute of Public Health, 0403 Oslo, Norway.
    3. UCL Department of Primary Care and Population Health, UCL Royal Free Campus, London NW3 2PF, UK.
    4. Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London EC1M 6BQ, UK.
    J R Soc Med. 2017 Jan 1:141076817702530. doi: 10.1177/0141076817702530. [Epub ahead of print]

    Abstract
    Objective
    Trends in recorded diagnoses of chronic fatigue syndrome (CFS, also known as 'myalgic encephalomyelitis' (ME)) and fibromyalgia (FM) in the UK were last reported more than ten years ago, for the period 1990-2001. Our aim was to analyse trends in incident diagnoses of CFS/ME and FM for the period 2001-2013, and to investigate whether incidence might vary by index of multiple deprivation (IMD) score.

    Design
    Electronic health records cohort study.

    Setting
    NHS primary care practices in the UK.

    Participants
    Patients registered with general practices linked to the Clinical Practice Research Datalink (CPRD) primary care database from January 2001 to December 2013.

    Main outcome measure
    Incidence of CFS/ME, FM, post-viral fatigue syndrome (PVFS), and asthenia/debility.

    Results
    The overall annual incidence of recorded cases of CFS/ME was 14.8 (95% CI 14.5, 15.1) per 100,000 people. Overall annual incidence per 100,000 people for FM was 33.3 (32.8-33.8), for PVFS 12.2 (11.9, 12.5), and for asthenia/debility 7.0 (6.8, 7.2).

    Annual incidence rates for CFS/ME diagnoses decreased from 17.5 (16.1, 18.9) in 2001 to 12.6 (11.5, 13.8) in 2013 (annual percent change -2.8% (-3.6%, -2.0%)). Annual incidence rates for FM diagnoses decreased from 32.3 (30.4, 34.3) to 27.1 (25.5, 28.6) in 2007, then increased to 38.2 (36.3, 40.1) per 100,000 people in 2013.

    Overall annual incidence of recorded fatigue symptoms was 2246 (2242, 2250) per 100,000 people. Compared with the least deprived IMD quintile, incidence of CFS/ME in the most deprived quintile was 39% lower (incidence rate ratio (IRR) 0.61 (0.50, 0.75)), whereas rates of FM were 40% higher (IRR 1.40 (0.95, 2.06)).

    Conclusion
    These analyses suggest a gradual decline in recorded diagnoses of CFS/ME since 2001, and an increase in diagnoses of fibromyalgia, with opposing socioeconomic patterns of lower rates of CFS/ME diagnoses in the poorest areas compared with higher rates of FM diagnoses.

    KEYWORDS:
    Chronic fatigue syndrome; diagnosis; fibromyalgia; general practice; incidence; fatigue; myalgic encephalomyelitis; post-viral fatigue; primary care

    https://www.ncbi.nlm.nih.gov/pubmed/28358988

    http://journals.sagepub.com/doi/10.1177/0141076817702530
     
  2. Tom Kindlon

    Tom Kindlon Senior Member

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    From the top line in table 3:


     
  3. Dolphin

    Dolphin Senior Member

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    Given the authors, I thought there might be some annoying stuff in this. I was pleasantly surprised.
     
  4. Dolphin

    Dolphin Senior Member

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    This doesn't make sense to me. 1% is 1000 per 100,000 which is 100 times the incidence of 10 per 100,000.
     
  5. Dolphin

    Dolphin Senior Member

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  6. Dolphin

    Dolphin Senior Member

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  7. Dolphin

    Dolphin Senior Member

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  8. Dolphin

    Dolphin Senior Member

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  9. Dolphin

    Dolphin Senior Member

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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I agree this looks completely wrong. I cannot quite be sure of the sums at the moment but I cannot see how they can be the way they say.

    I think the prevalence should be 0.01-0.02% - which is actually far too low.
     
  11. user9876

    user9876 Senior Member

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    I would assume that these are new diagnoses each year and hence the overall prevalence will be higher although I don't know how they calculate that.
     
  12. Dolphin

    Dolphin Senior Member

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    It is right that incidence should not be confused with prevalence. But I don't see how that explains the figures in this:

     
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  13. Snow Leopard

    Snow Leopard Hibernating

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    I believe the incidences are reported in the usual person/years (haven't looked closely).

    If a majority aren't recovering, then it adds up to somewhere between 0.1-1% (lifelong illness, depending on assumptions used).

    But these aren't true incidences, they're number of diagnoses logged in the system. If medical doctors aren't doing their jobs properly and making sure patients have diagnoses and that these diagnoses are logged into the system, then will get biased results.
     
    Last edited: Mar 31, 2017
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  14. user9876

    user9876 Senior Member

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  15. Snow Leopard

    Snow Leopard Hibernating

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    Strange that they didn't bother to cite Jason, Bell etc.

    Crude assumptions (10 per 100000 * 20 years) / 2 years duration = 0.1% (this math also assumes that once a person is ill, and recovered, they can become ill again), hmm...

    edit - Note, I'm assuming the incidences are in person/years

    Would have liked to see it broken down into smaller age ranges. It is mistake to pool the 0-20 in one group in comparison to the adults.
     
    Last edited: Mar 31, 2017
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  16. user9876

    user9876 Senior Member

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    They also require 12 months recording of data from the GP so that there is not an effect where new patients get a diagnosis. I think this could have an affect on the figures as sometimes it can be necessary to move GPs to get anyone who can be bothered to look for a diagnosis.
     
  17. Dolphin

    Dolphin Senior Member

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    Though not as teenagers as claimed by this study as there not many years to accumulate. Also they claim the diagnosis only last 12 to 24 months in teenagers.

    Anyway it's only a minor point.

    Edited to add: this was written before I saw your latest post.
     
  18. Snow Leopard

    Snow Leopard Hibernating

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    Initial onset is often relapse-remission for teenagers, later to develop into continuous illness for many, and this is something that is not effectively captured with the methodology of this study. The data is what it is, just important not to jump to conclusions about duration with such limitations.
     
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  19. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    USA
    Incidence = number of new cases each year divided by population.

    Prevalence = number of all cases divided by population.
     
  20. Dolphin

    Dolphin Senior Member

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    I know that. I don't see how that explains these figures:

     
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