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Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
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From Nijmegen new one

Discussion in 'Latest ME/CFS Research' started by lansbergen, May 24, 2010.

  1. Mithriel

    Mithriel Senior Member

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    In the abstract they say
    but in the press release they say
    which gives the impression they did a study specifically designed to answer the question of whether deterioration happened.

    We know that some of the fatigue scales used are not sensitive enough for detecting deterioration. Metanalysis is not good enough for such an important question. This is more publishing on the cheap.

    And using the Fukuda defintion but leaving out the symptoms thing would be laughed at rather than published in any other disease.

    Mithriel
     
  2. _Kim_

    _Kim_ Guest

    :Sign giggle:
     
  3. Doogle

    Doogle Senior Member

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    PoetInSF, do you think their assertion that their study is about CFS (Fukada definition), when patients are eligible to enroll with only Chronic Fatigue is valid, honest, and not manipulative? The Fukada definition specifically states their study is not about CFS but instead Idiopathic Chronic Fatigue.

    "A case of idiopathic chronic fatigue is defined as clinically evaluated, unexplained chronic fatigue that fails to meet criteria for the chronic fatigue syndrome. The reasons for failing to meet the criteria should be specified."

    A study that uses ICF patents and then names it a CFS study contrary to the definition they claim to be using is not valid, and is manipulative and dishonest IMO.
     
  4. Dolphin

    Dolphin Senior Member

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    I've sent in a letter on this. Fingers crossed they publish it. It'd be great if other people wrote in too but it's not easy to do a write a letter that will be published - probably easiest to work up to doing that by sending in e-letters where journals allow them as the standard is lower there.

    -------
    I was corresponding with somebody who shared their thoughts on the paper. They say I could share them.

    .

    and
    I quoted from this.

     
  5. oceanblue

    oceanblue Senior Member

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    I'd strongly endorse this statement from your correspondent. While there are clear limitations from such non-random samples, the patient numbers in these surveys are enormous compared with those in published trials and so are a valuable source of information. CONSORT endorsement of this type of information means that researchers can no longer credibly dismiss such surveys out of hand.

    Good luck with your letter.
     
  6. Snow Leopard

    Snow Leopard Senior Member

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    See also:
    "How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity". http://www.ncbi.nlm.nih.gov/pubmed/20047707

    These guys sound a little confused in their conclusions. Since they actually demonstrated that CBT doesn't actually work in terms of QUANTITATIVE results, rather than subjective questionnaires that are subject to the placebo response. Also, maybe patients with a 'pervasively passive activity pattern' are like that because they have a severe organic illness, rather than 'perception bias'. Or is that perception bias of the researchers? Now even I'm confused.
     
  7. Dolphin

    Dolphin Senior Member

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    A reply has been published:

     
  8. Snow Leopard

    Snow Leopard Senior Member

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    Australia
  9. oceanblue

    oceanblue Senior Member

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    Congratulations!
    Are you able to post the text of at least the submitted version - and did the original authors reply?
     

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