Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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A systematic review to identify the definitions of recovery for paediatric CFS or ME (Moore et al.)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Apr 29, 2015.

  1. Dolphin

    Dolphin Senior Member

    Conference presentation so there's just an abstract which is copied in full below.
    Esther Crawley is one of the authors.

    Valentijn, Esther12 and Simon like this.
  2. DaiWelsh


    with a diagnosis of CFS/ME.....duration of illness from 3 months​

    I thought all criteria required > 6 months illness?

    Oh and you have to love this:

    The recovery rate ranged from 25–100% in those accessing treatment and 4.5–100% in those without specialist care.​

    Which apparently means that

    Recovery rates are relatively high in children accessing specialist treatment​

    To me (assuming that the writing is clumsy and "accessing treatment" is he opposite of "without specialist care") it looks like recovery rates were relatively high for everyone, but of course that would not support lots of expensive specialists ;)
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  3. Denise

    Denise Senior Member

    (The pediatric definition by Jason (2006?) used 3 months in its criteria.)

    How do the authors define recovery? I'd like more detail than what is in the abstract.
    How long were they patients followed (to make sure it wasn't a remission)?

    And many thanks @Dolphin for posting this. Wish we could see the text of the whole presentation.
    Last edited: Apr 29, 2015
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  4. Dolphin

    Dolphin Senior Member

    Making a presentation like that doesn't preclude then writing and publishing a paper. There's a good chance that they will go and write a paper on this (or indeed they may already have written a paper).
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  5. user9876

    user9876 Senior Member

    I wonder if the 3 month threshold has a huge effect on the recovery stats in that it may well catch kids with glandular fever or similar temporary post viral effects.

    They talk about partial recovery but I'm not sure that concept even makes sense. But then Crawley wrote a briefing paper claiming a 30-40% (not sure if my memory is correct here) from the PACE trial (basically taking the PACE 'normal' as recovered). So I'm I suspect the rigour in reviewing papers around recovery would be sufficient.

    This still contradicts the figures of 97% recovery that Crawley was telling her patients (and may still be!). But then she is happy changing a diagnosis from CFS to a dissociative disorder (i.e. pervasive refusal syndrome) when a child has not got better. Claiming that she has cured them of CFS (because she couldn't have got the initial diagnosis wrong) and they now have a dissociative disorder due to the stress of being ill.
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