The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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"Pulse" article: "CFS affects 2% of teens, study finds"

Discussion in 'General ME/CFS News' started by Aurator, Feb 4, 2016.

  1. Aurator

    Aurator Senior Member

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    An article in the magazine that has been "at the heart of general practice since 1960".
    http://www.pulsetoday.co.uk/clinica...s-2-of-teens-study-finds/20030965.fullarticle
    The comments are more interesting than the article itself:
    "Are we too afraid of a label of mental illness?"
    "It's just laziness. Let's not medical everything!"
    "more overmedicalisation"


    And then a great one from someone referring to herself as "a practice nurse":

    "As a mother of a young woman with ME/CFS who got whatever it is when she was 16 (now aged 30),I think the time limit should be well over what people commonly suffer from most post viral fatigue. The genuine sufferers whose lives are blighted by CFS, are often belittled by others who appear to make miraculous recovery after a few months. These people then patronise those who struggle for years with the condition as uncooperative or lazy.
    GP's or not, if you have children, and one day you see you beautiful 16 year old daughter who was once full of vitality and ambition, crippled to the point she is bedridden 23 hours a day, too weak to eat or stand, muscles visually twitching, migraine after migraine, periods of vomiting and retching for no discoverable reason, you would be worried. Then perhaps one or two days a month, almost normal, cruelly allowing a taste of normality, only to lose it again and again, then payback for that normality is back to bed again, sleeping for 15-20 hours a day for several days. One doesn't bother the GP because bloods are normal and there is nothing clinical knowledge can do. Many of these people are hidden because they know there is no treatment that works for them, only hangers on, trying to make money from the desperate with quackery. The PACE trials are scary because one has already experienced gradually trying to do a little more, year after year, but experience and living with CFS shows this only results in yet another relapse.
    Because the lifestyle often results in depression, CBT can help some, but the NICE Guidelines and PACE trials on which they are based misguides many health professionals into thinking CBT helps the CFS, rather than the restricted lifestyle that results in depression. The implications on those struggling day to day with the exhaustion beyond arousal at times, not just "tired" is patronising and demoralising.
    Even a GP my daughter saw a couple of weeks ago because she needed a letter of evidence stated, "Well I feel tired in the mornings too. You just have to push yourself!".
    I have seen my otherwise ambitious daughter many a morning, almost like in a paralysis, unable to move, eat, dress, wash. Even if food is taken to her, she hasn't the strength to eat. I fear for what will happen to her when I am gone if this most misunderstood illness is not recognised and believed."
     
  2. Esther12

    Esther12 Senior Member

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  3. *GG*

    *GG* Senior Member

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    Concord, NH
    Can anybody read all that text? How about you poster? @Aurator

    GG
     
  4. Chrisb

    Chrisb Senior Member

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    The researcher who said "we are as confident as we can be that we have the right prevalence figures here" has a very cavalier attitude either to the use of language or to "scientific" methodology. There is no process that could provide more accurate data? Really?

    Solzhenitsyn wrote a short story entitled "We never make mistakes". It may be time for nominations for the Lysenko awards again.

    As Aurator said the comments are interesting. Their range from the reprehensible to the thoughtful shows both the difficulties patients will encounter with some doctors and those faced by some well meaning doctors in diagnosing difficult cases.
     
    Snow Leopard, halcyon and Aurator like this.
  5. jimells

    jimells Senior Member

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    northern Maine
    Who needs scientific method and evidence when we have "researcher beliefs" and "confidence"?
     
  6. worldbackwards

    worldbackwards A unique snowflake

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    Earth
    Why is Phil Hammond being presented as an independent commentator, rather than the flunky of one of the researchers? I wonder where they got his name from?
     
    Tom Kindlon, Esther12 and Scarecrow like this.

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