Invest in ME Conference 12: First Class in Every Way
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A qualitative investigation of eating difficulties in adolescents with cfs/meA qualitative investiga

Discussion in 'Latest ME/CFS Research' started by Kati, May 25, 2016.

  1. Kati

    Kati Patient in training

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    FWIW

    http://www.ncbi.nlm.nih.gov/pubmed/27215228

    A qualitative investigation of eating difficulties in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis.
    Harris S1, Gilbert M2, Beasant L2, Linney C3, Broughton J2, Crawley E4.
    Author information

    Abstract
    BACKGROUND:
    An estimated 10% of children and adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience eating difficulties; however, little is known about why these difficulties develop, what the impact is or how to manage them.

    METHODS:
    Semi-structured interviews were conducted with adolescents (aged 12-17 years) attending a specialist service who have a primary diagnosis of CFS/ME and experience nausea, abdominal pain and/or eating difficulties. A total of 11 adolescents were interviewed (eight female, mean age: 15 years). Transcripts were analysed thematically using techniques of constant comparison which commenced soon after data collection and informed further interview protocols.

    RESULTS:
    Adolescents perceived their eating difficulties were caused by abdominal symptoms, being too fatigued to eat and changes to their senses of taste and smell. Some of the adolescents recognised how their eating difficulties were exacerbated and maintained by psychological factors of low mood and anxiety. The adolescents eating difficulties had a negative impact on their weight, fatigue, socialising and family life. They perceived helpful interventions to include modifying their diets, families adjusting and also medical interventions (e.g. medication). Adolescents identified that early education and support about diet and eating habits would have been helpful.

    CONCLUSIONS:
    If adolescents diagnosed with CFS/ME develop eating difficulties, this has a significant impact on their quality of life, illness and on their families. Not eating increases fatigue, low mood and anxiety which further exacerbates the eating difficulties. Clinicians should screen for eating difficulties in those with symptoms of nausea and abdominal pain, warn adolescents and their families of the risk of developing eating difficulties and provide interventions and support as early as possible.

    © The Author(s) 2016.
     
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  2. Esther12

    Esther12 Senior Member

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    Not feeling enthused to read this one. There could be good annoying stuff in there though... will put it on the list.
     
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  3. Valentijn

    Valentijn Senior Member

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  4. msf

    msf Senior Member

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    I personally hate it when my false illness beliefs make the pizza I am eating taste like cheese and tomato on bread.
     
  5. Kati

    Kati Patient in training

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  6. TiredSam

    TiredSam The wise nematode hibernates

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    Oh really.

    Transcripts were immediately cherry-picked so that we could adapt future interviews to get the answers we wanted more efficiently.
     
  7. JohnCB

    JohnCB Immoderate

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    I have only read the abstract posted above, but how do you get a 10% rate from 11 individuals. 10% of 11 is 1.1 kids. They had one kid that showed a problem. How far can you extrapolate from one 15 year old girl (probably)? This doesn't mean anything at all.

    I realise that Ms Crawley wants to pump out as many papers as she can and justify the weird and wonderful(?) things she does to the poor children under her control. Telling her funders that 10% of those juvenile CFS victims have eating disorders is just the thing to justify dragging them off to her looney-bin.

    Do you need s authors for a paper about interviewing 11 kids. Is this yet another student exercise being touted as science? Where are the healthy controls? How many teenage girls have some kind of issue with eating and diet?
     
  8. sarah darwins

    sarah darwins I told you I was ill

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    LOL! :rofl::thumbdown::eek:;) 1.1 Kids ... wasn't that a sitcom? I've often wondered if the behaviourist mob were really performance artists engaged in some kind of surreal parody.
     
  9. Valentijn

    Valentijn Senior Member

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    The authors are:
    • Sarah Harris - psychologist with an interest in cognition and behavior
    • Matthew Gilbert - child psychiatrist
    • Lucy Beasant - PhD student supervised by Crawley & co-author of the SMILE Lightning Process trial feasibility for children with CFS/ME
    • Jessica Broughton - Psychologist interested in doing CFS/ME research
    • Esther Crawley - Psychiatrist who claims to have cured children even when their symptoms don't improve
    • Catherine Linney - Psychology Master's student with interest in behavior

    Hrm, I think I see a problem. They forgot to invite someone with a medical background in gastroenterology, and just got together with a bunch of other people inclined toward psychobabble.

    Naturally the authors have no idea what orthostatic intolerance is, nor how it is impacted by a meal:

    They seem to be using "stress" in a general sense, instead of a purely psychological sense at least:

    Oh, here comes Psychobabble Central :rolleyes::

    I haven't seen any support for presuming that eating difficulties indicate a need for psychological testing, but there they go anyhow:

    Overall, not too bad. It's reading like one or both of the younger grads/students did most of the writing, and aren't too sucked in by Crawley & Co's bullshit yet. But given time, I've no doubt they can devolve into full-blown psychobabblers and join the cult.
     
    Last edited: May 25, 2016
  10. Esther12

    Esther12 Senior Member

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    I don't know where the 10% is from, but those kids were selected because they were reporting problems with eating.
     
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  11. PDXhausted

    PDXhausted Senior Member

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    I haven't read the paper but it's a shame they gave funding to a psych dept for eating problems rather than the gastroenterology dept, because information about SIBO, dysbiosis, food intolerances, food allergies/MCAS and autonomic gut problems in kids with ME/CFS would actually be relevant and useful research. So sad to waste that money on psych.
     
  12. Valentijn

    Valentijn Senior Member

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    I think the paper said they didn't receive any funds for it.
     
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  13. Effi

    Effi Senior Member

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    That was 2.4 children. A LOT better as a sample than what they did here! :rolleyes:
     
  14. user9876

    user9876 Senior Member

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    My immediate reaction on reading it is that the quotes and themes they pull out don't seem to match the narrative they put around them but rather the narrative seems to follow what you would hear from their clinic.

    At one point 4 patients report a smaller appetite with an additional 2 talking of a shrunken stomach. But this doesn't come into their categorization. With my child I've noticed a complete lack of appetite a lot of the times its a bit like the body is just not always creating hunger signals.

    I got the impression from what they say that a lot of the mood issues are associated with not being able to eat rather than the other way around.

    From experience doctors were very keen to say that fatigue was partly of a result of not eating well. But with my child I kept a very detailed diary around overall activity levels, calorie intake and general health levels. In general what I found was that as health fluctuated eating followed rather than the other way around. Which makes sense to me but I think doctors couldn't understand.
     
  15. user9876

    user9876 Senior Member

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    The other comment I would make is they say they were semi-structured interviews but don't report on the interview questions so it is unclear from their report how many of the issues and themes result from the interview and how many from the kids or parents.
     
  16. PDXhausted

    PDXhausted Senior Member

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    My bad, guess I should read before commenting... :)

    Just frustrated with psych wanting to encroach on other body systems.
     
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  17. lansbergen

    lansbergen Senior Member

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    Fasting is part of the sickness response.
     
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  18. Ben H

    Ben H OMF Correspondent

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    Next time I really want to be pissed off, I will read the full 'study'. The abstract has pissed me off enough already. Bunch of absolute jokers. What does 'semi-structured' interviews even mean? As Valentjin says, they forgot to invite someone with a background in gastroenterology.

    The concept of food has changed for me since being ill, in the sense that I feel like I no longer get energy from food, I.e. The Krebs cycle. And with the issues with mitochondria, is this really surprising? It has not changed because I feel depressed, food has very little effect on energy whether I eat or not, contrary to the authors assumptions. In normal people yes, in us, not so much.

    You wouldn't hire a plumber to fix your car, so why are these muppets allowed to write so conclusively about something they know nothing about. Biopsychosocial nonsense. :mad:
     
    Last edited: May 26, 2016
  19. panckage

    panckage Senior Member

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    Good point this is an easy one. When I am housebound I don't eat much because I don't do anything. OTOH on days when I am feeling better and get out I eat more. Jesus fucking rocket science psychobabblers!!!

    Another stupidly obvious false attribution is that somehow feeling nausea without throwing up means that the patient is causing the nausea. What the hell this is like a religion attributing everything not directly observable and attributing it psychological processes. How is this crud even published?
     
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  20. Ben H

    Ben H OMF Correspondent

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    My bold. Pure Lightning process bullshit.

    How about looking at things from the opposite, scientific perspective, such as the adolescents abdominal symptoms physically causing their eating difficulties? And stop attributing perception/psychology to a myriad of symptoms.

    Nope. Vested interests. Too much effort. Too much science. :nervous:


    B
     
    Last edited: May 26, 2016

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