The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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BBC - Chronic fatigue syndrome on rise among 16-year-olds

Discussion in 'General ME/CFS News' started by worldbackwards, Jan 25, 2016.

  1. worldbackwards

    worldbackwards A unique snowflake

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    2% my arse. Bloody Crawley strikes again.

    http://www.bbc.co.uk/news/health-35383832
     
  2. alex3619

    alex3619 Senior Member

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    This is in line with the prevalence under Oxford criteria. I wonder what criteria were used. As we know the Oxford criteria need to be retired.

    They are still perpetuating the myth that "chronic fatigue = chronic fatigue syndrome = ME", all of which have different symptom requirements and different prevalence, and most importantly they have different severity.
     
  3. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    I only read the news article, not the published article, so setting aside that it's about "chronic fatigue" I'm wondering how this reconciles with BSP babbling about children of middle-class whiny over-protective mothers?
     
    moosie likes this.
  4. Chrisb

    Chrisb Senior Member

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    Good to see how real science works.

    Of course one could start by taking mobile phones and computers away from them at 10.30pm and see how that effects states of fatigue.
     
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  5. Sidereal

    Sidereal Senior Member

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    This sort of 'research' is why I'm opposed to most of what is happening in the UK collaborative. Bad research is more harmful than no research.
     
    SDSue, beaker, Chezboo and 10 others like this.
  6. justy

    justy Donate Advocate Demonstrate

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    'Persistent exhaustion' = CFS = M.E?
     
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  7. Simon

    Simon

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    Not sure a pencil and paper exercise adds anything of value, apart from highighting that lots of school children have chronic fatigue.

    Bonus! Yuppie flu headline here too
    'Yuppie flu' taking toll on teens | Western Daily Press
     
    Last edited: Jan 25, 2016
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  8. charles shepherd

    charles shepherd Senior Member

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    CS will be talking live to LBC radio shortly after 3pm about this new research

    LBC radio: http://www.lbc.co.uk
     
  9. K22

    K22

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    Let's see who speaks out that Crawley's persistent fatigue isn't CFS let alone M.E. Certainly nothing from AYME or AFME who go along that Crawley is studying CFs/ME. Will anyone make it clear that use of these broadest of umbrellas and conflating fatigue with complex illness isn't useful. Who will say that M.E entails more than persistent fatigue & explain what and that loose questionaire research on tired teens isn't bringing answers for people really ill & that not enough state funds are getting put in to help the sickest...
    Conflating M.E with PF is as harmful as the press calling it derogatory names.
     
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  10. charles shepherd

    charles shepherd Senior Member

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    Re Western Daily Press

    INTENDED FOR PUBLICATION

    Dear Sir

    Re the headline to the news item in today's Western Daily Press covering children with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS):

    http://www.westerndailypress.co.uk/Yuppie-flu-taking-toll-teens/story-28594735-detail/story.html

    Yuppie flu is a derogatory and inaccurate description for the serious and debilitating neurological illness known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

    The name was invented by journalists and has NEVER been used by the medical profession

    And as you say in the news item, ME/CFS is an illness that was more common in children from poor homes with little practical or emotional support from their mothers

    ME/CFS has no social class bias and has nothing to do with so-called yuppies

    To comply with the press code of conduct on accuracy please take immediate steps to remove this appalling headline from your on-line news item and place a suitable correction and apology in the paper edition tomorrow

    Yours
    Dr Charles Shepherd

    Medical Adviser, ME Association
    7 Apollo Office Court
    Radclive Road
    Gawcott
    Bucks MK18 4DF

    Website: www.meassociation.org.uk

     
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  11. Denise

    Denise Senior Member

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    The press release (includes mention of AYME, Action for ME and other "interesting" notes to editors)
    http://www.eurekalert.org/pub_releases/2016-01/uob-1i5012216.php

    includes info on how to access a proof of the paper.

    "The paper, 'Chronic Fatigue Syndrome at Age 16 Years' by Simon Collin et al is published today [Monday, Jan. 25, 2016] in Pediatrics, the official journal of the American Academy of Pediatrics. An advance proof of the paper can be downloaded here: https://fluff.bris.ac.uk/fluff/u3/indoh/m2jZ5k_4imurceZIJHdGRgVXL/"
     
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  12. charles shepherd

    charles shepherd Senior Member

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  13. Cheshire

    Cheshire Senior Member

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    How they "diagnosed" the patients:

    Apart from the loosy and only criteria of fatigue, the fact that these people are "diagnosed" without even seeing a doctor, by self report of symptoms is just astonishing!!

    This is just so stupid words fail me...
    Even for the Fukuda criteria, it's always said CFS is a difficult diagnosis, you have to eliminate other diseases, and so on...
    Have the rare tests recommended even by the BPS crew been ruled?

    Disgraceful.
     
    Last edited: Jan 25, 2016
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  14. sarah darwins

    sarah darwins I told you I was ill

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    Goodbye Monty Python, hello Esther Crawley. Can you imagine research into any other disease establishing patient eligibility on a "his mum said he's got it" basis?

    It's a bad joke. And thanks to the 'Science' Media Centre this sort of garbage is reported nationwide as though it were actually science.
     
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  15. A.B.

    A.B. Senior Member

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    What, making assumptions about missing data is less biased than not making assumptions? Surreal.

    And sure enough, their assumptions inflate the prevalence of CFS:

     
    Last edited: Jan 25, 2016
  16. K22

    K22

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    Crawley on twitter has a tweet along lines of "ME found in 1 in 50 teens". How does she get away with conflating this research type fatigue questionnaire conclusions with ME.? This type of thing happened in USA in the past. This is why some will argue that a collaborative approach as broad as this ,with these type of individuals can not work in the UK. How can we get ME understood and respected in this company? We are only taking dolly steps progress not the strides required because the BPS school go unchallenged undermining us left , right and centre. Also AFME are right there alongside them ,speaking as the largest national charity yet misusing the name ME with the worst of them & then declaring anyone who points out that ME isn't CFS or CF is being discriminatory - the cfs/me club is open to all fatigue. Been a bit tired lately?
     
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  17. Simon

    Simon

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    The article is now online here
    Chronic Fatigue Syndrome at Age 16 Years | Articles | Pediatrics

    Abstract
    BACKGROUND: In the Avon Longitudinal Study of Parents and Children (ALSPAC) birth cohort, chronic disabling fatigue lasting ≥6 months affected 1.3% of 13-year-olds, was equally common in boys and girls, and became more prevalent with increasing family adversity.

    METHODS: ALSPAC data were used to estimate the prevalence of chronic fatigue syndrome (CFS) at age 16 years, defined by parental report of unexplained disabling fatigue lasting ≥6 months. We investigated gender and a composite 14-item family adversity index as risk factors. School absence data were obtained from the National Pupil Database. Multiple imputation was used to address bias caused by missing data.

    RESULTS: The prevalence of CFS was 1.86% (95% confidence interval [CI]: 1.47 to 2.24). After excluding children with high levels of depressive symptoms, the prevalence was 0.60% (95% CI: 0.37 to 0.84). Authorized school absences were much higher (mean difference: 35.6 [95% CI: 26.4 to 44.9] half-day sessions per academic year) and reported depressive symptoms were much more likely (odds ratio [OR]: 11.0 [95% CI: 5.92 to 20.4]) in children with CFS than in those without CFS. Female gender (OR: 1.95 [95% CI: 1.33 to 2.86]) and family adversity (OR: 1.20 [95% CI: 1.01 to 1.42] per unit family adversity index) were also associated with CFS.

    CONCLUSIONS: CFS affected 1.9% of 16-year-olds in a UK birth cohort and was positively associated with higher family adversity. Gender was a risk factor at age 16 years but not at age 13 years or in 16-year-olds without high levels of depressive symptoms.
    Accepted November 16, 2015. Copyright © 2016 by the American Academy of Pediatrics
    I simply don't understand how parental reported chronic fatigue can be presented as mecfs, certainly the 1.9% prevalence figure claimed is not sound, given the methodology.​
     
    Last edited: Jan 25, 2016
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  18. medfeb

    medfeb Senior Member

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  19. Snow Leopard

    Snow Leopard Hibernating

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    With any other condition these researchers would have been able to obtain funding to do a proper study and actually investigate these cases clinically to get a more realistic estimate.

    Alas, all we have is sloppy vague questionnaire based 'research'.
     
  20. Daisymay

    Daisymay Senior Member

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    How on earth does this get published?

    And as for AfME and AYME.....I just wish everyone would boycott them and let them fail through lack of funds. AfME has caused so much harm eg backing PACE.
     
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