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Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jun 2, 2016.

  1. Dolphin

    Dolphin Senior Member

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    http://www.nets.nihr.ac.uk/projects/hta/14192109

    Cost £ 994,430.00

    ---

    Comment:
    No 6-minute walking test nor fitness test which gave null results for CBT in PACE trial.

    No actometers/pedometers

    Patient self-reports in nonblinded trials can be inaccurate/biased after therapy.
     
    Last edited: Jun 2, 2016
    MEMum, aaron_c, Susanna D and 12 others like this.
  2. Denise

    Denise Senior Member

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    @Dolphin thank you for posting this.
    I really wish there we had a button to indicate "Argh!" or "You must be kidding me!" or "Dislike" because I can't "like" this study.
     
    MEMum, Jan, Susanna D and 20 others like this.
  3. TiredSam

    TiredSam The wise nematode hibernates

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    So much of this makes me sick I wouldn't know where to start. How about here:

    What this should say is that 90% of children in the UK are currently fortunate enough to live too far away for Esther Crawley to get her hands on them, but she's out to fix that.

    Blimey it's a miracle. Reference?
     
  4. Cheshire

    Cheshire Senior Member

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    Oxford like criteria...
    How on earth are we still stuck there?
     
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  5. lnester7

    lnester7 Seven

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    I wonder who is paying for this. And the poor parents probably will be "encorage" (so they are not accused of abuse or neglect).

    I hope they put warnings that can be harmful.
    The criteria should be brought to attention, so they do not call it CFS/ME.
     
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  6. Denise

    Denise Senior Member

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    Because Oxford-like and only requiring 3 months of fatigue (as compared to 6 months) "guarantees" good results?
     
    JaimeS and Bob like this.
  7. Dolphin

    Dolphin Senior Member

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    The National Institute for Health Research = UK taxpayer.
     
    Last edited: Jun 2, 2016
  8. BurnA

    BurnA Senior Member

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    Did you see the long list of names under co-investigators - that's why
     
    Wildcat likes this.
  9. Wildcat

    Wildcat

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    .
    AYME is up to their necks in this FITNET study - and Boy - is Bristol University Invested in this study, Knoop and Bleijenberg too...:
    .
    Professor William Hollingworth (University of Bristol), Dr David Kessler (University of Bristol), Professor John Macleod (University of Bristol), Dr Chris Metcalfe (University of Bristol), Dr Nicola Mills (University of Bristol), Professor Paul Stallard (University of Bath), Mrs Harriet Downing (University of Bristol), Dr Elise Van de Putte (UMC Utrecht), Dr Sanne Nijhof (UMC Utrecht), Associate Professor Hans Knoop (Radboud University Medical Centre), Professor Gijs Bleijenberg (Radboud University Medical Centre), Mrs Mary-Jane Willows (The Association for Young people with ME), Dr Simon Price (University of Bristol)
    .
    .

    Crawley brings in Lotsa research funding to Bristol University - and thats what its all about in UK University Education these days, its cutthroat - the lecturers have to bring in the research funding or they are out.
    .
     
    Last edited: Jun 2, 2016
  10. Comet

    Comet I'm Not Imaginary

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    How are they able to keep getting away with this?

    This is a fail on so many levels.

    It shows that very few are interested in researching actual ME/CFS. And that very few understand why this is not a study on children with ME/CFS.

    It's bad enough what we adults are subjected to, but to do this to children... I just don't have the words. Yet it keeps happening...
     
  11. Esther12

    Esther12 Senior Member

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  12. worldbackwards

    worldbackwards A unique snowflake

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    Not even Oxford. Just tired.

    How, I understand to an extent. Why, is what bothers me.
     
  13. worldbackwards

    worldbackwards A unique snowflake

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    One thing that does encourage me about this stuff is that CBT is getting increasingly more computer based and less intrusive, clearly as part of cost cutting measures, which makes it easier to disregard and ignore if it goes wrong.

    I imagine much of the damage done in ME type CBT is done because patients are made to feel guilty by practitioners. When they've been left to the mercy of a computer, people will feel more emboldened to walk away. And clearly it's already been decided that this is the future, otherwise it wouldn't be being pushed through like this.
     
  14. Bob

    Bob

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    So Mary-Jane Willows (The Association for Young people with ME) has actually put her name to this research. The organisation should change its name to "The Association for Young people with Fatigue", then at least it wouldn't be misleading.
     
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  15. Bob

    Bob

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    How does this contradictory spin get past peer review? Or is it an editorial decision because the results have to be spun as positive in order to get published?
     
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  16. Bob

    Bob

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    Expect the primary outcome to be switched to fatigue by the time of publication!
     
    Last edited: Jun 4, 2016
    Woolie, Valentijn, sue la-la and 3 others like this.
  17. 2kidswithME

    2kidswithME

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    "Most children with CFS/ME will recover if they receive specialist treatment."

    AYME have been saying this for some years, it used to be on the activity management page of their website, when I asked for the source, they (eventually) sent me a reference to a paper that only looked at recovery rates after some years, from clinics in the US in the 1990s, nothing to do with actual treatment. When I pointed this out they removed that sentence from the page and it hasn't reappeared last I checked. Recovery rates were not impressive, either in that paper or in Dr Bell's 13 yr follow up to the Lyndonville outbreak.

    I'd love to know if there is now definitive research proving this? Unlikely!
     
    Jan, Chrisb, Woolie and 10 others like this.
  18. user9876

    user9876 Senior Member

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    Its because it is only ever peer reviewed by other true believers.

    But it is really bad editorial policy that allows this to happen and this should reflect badly on the publishers and the editors. I feel that things won't improve until publishers are held to account and can be sued for harm done in papers that they publish that are not adequately checked. Harm could also be money spent on worthless treatments rather than being put to a good use.
     
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  19. user9876

    user9876 Senior Member

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    Or the association for the support of esther crawley
     
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  20. worldbackwards

    worldbackwards A unique snowflake

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    Is all this just for the love of Esther? If we made a statue of her and worshiped her a bit, would she just bugger off and leave us alone?
     

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