A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Crawley & O'Dowd - Early Intervention In Fatigue: A Feasibility Study

Discussion in 'General ME/CFS News' started by RogerBlack, Jun 30, 2017.

  1. RogerBlack

    RogerBlack Senior Member

    Keith Geraghty posted a reference to the above on twitter. It is somewhat old, and has not een published.

    From the contract document.
    Of course, remains unpublished.
    I have not the energy to read the contract document in full at this time, it seems to require a draft paper be prepared. I wonder if that was, and if it was simply not published.
    FOIA might be interesting to get that paper.
    There can be little argument that a paper produced for publication (but not published) 6 years on is excluded by any of the FOIA exemptions.
  2. slysaint

    slysaint Senior Member

    Well done finding it, I was just looking for it!

    Cost/amount awarded:
    Last edited: Jun 30, 2017
  3. Ysabelle-S

    Ysabelle-S Highly Vexatious

    Well, since I didn't have any fatigue in the first year or so, I would not have been picked up, yet I did get post viral syndrome on a medical certificate within weeks. I already had the neuro, cognitive, eye sight, immune and other problems by then. I don't recall having sleep problems though.
  4. RogerBlack

    RogerBlack Senior Member

    I apparently missed:

    I don't know what the above contract might imply about the copyright status of the above report, and how widely it may be shared.

    https://osf.io/preprints/psyarxiv/ - perhaps the original authors could take advantage of the various open public preprint archives to share the results of their work, if they are having difficulty finding publication.
  5. lilpink

    lilpink Senior Member

    It shouldn't be possible to hide null results simply by not publishing them. All research should be published in one way or another.
    GreyOwl, slysaint, Starlight and 12 others like this.
  6. Stewart

    Stewart Senior Member

    ...especially when it's funded by taxpayers.

    PACE received £5 million of public money - via the MRC, DoH, DWP and the NHS Scotland CSO (apologies for the acronym onslaught...) but the public is not allowed to see the data (which we now know to be because the data disproves the published results and undermines the rationale for administering CBT and GET in the process).

    The DoH then gave Esther Crawley nearly £250,000 of public money to conduct this study - the results of which apparently disprove the effectiveness of CBT and GET again - but she never publishes, so the evidence that her theories are complete bunkum never makes it into the public domain. Another quarter of a million of public funds spent and absolutely nothing to show for it.

    Not to worry though - because the NIHR has now given EC another million pounds to carry out the FITNET-NHS trial - building on work done in Denmark, which was shown to have no long-term effect on the health of the participants. Oh yeah, and FITNET is another non-blinded study focussing mainly on subjective outcomes - meaning that investigator bias is pretty much guaranteed to creep in. She's already done a round of media interviews, appealing for trial participants by claiming that the treatment is very effective - so she's primed participants to expect positive results even before treatment has started. There's your bias right there - her media campaign ensured that the FITNET results will be unreliable garbage before a single patient was treated. How's that for efficiency?

    I wonder how much quality research £6.25 million would buy? I think it would fund Ron Davis' team for well over a year. Instead the British Government keeps on giving it to these charlatans, who piss it up the wall with no discernable benefit to anyone but themselves.
  7. RogerBlack

    RogerBlack Senior Member

    It's not £6.25, by a long way.
    Assuming for no particular reason that there are 20 secondary care clinics in the UK, with 6 clinicians in each, with a total cost of 300K/year, all mostly deliverying illness denying CBT/GET, for around 10 years now, that is more like £62 million than £62.5.

    This is even before the costs of symptom exacerbation, either long-term or short term.
    It could probably reasonably be argued that the research has directly and indirectly lead in the UK that dwarf the above figure of 62 million.

    Seems to say there were, in 2010, 49 CFS/ME clinical teams in England. Presumably a handful in Scotland, wales, and NI too.

    We need an inarticulate screaming emote.
    Last edited: Jun 30, 2017
  8. Sean

    Sean Senior Member

    How is this anything less than serious fraud, financial and scientific?

    Withholding results should be one of the greatest sins in science, regardless of who ran or funded the study. Equivalent to straight faking of data.
    MEMum, dangermouse, GreyOwl and 5 others like this.
  9. RogerBlack

    RogerBlack Senior Member

    The contract (on a quick glance) does not actually require publication.
    It requires preparation of a draft suitable for publication.
    The contracting body is the only one that can sue for non-performance, in general.

    The DOH has the right to publish themselves, if it has not occurred in one year.

    It may be intellectually dishonest, but if the people funding the research choose not to require it to be published, nothing in their contract actually says they must publish, or submit it to a journal.

    I would be surprised if it was not agreed by the DOH and the team in question not to publish.

    A full copy of the correspondence around this would be interesting, especially if it shone light on any rationale not to publish.
    MEMum, dangermouse, Sean and 6 others like this.
  10. BruceInOz

    BruceInOz Senior Member

    The real problem with negative results not being published is that when Cochrane etc produce a review of the literature they only find positive results. Biased review guaranteed. (Or can their protocol catch unpublished studies?)
    MEMum, Webdog, dangermouse and 11 others like this.
  11. NelliePledge

    NelliePledge plodder

    the DOH is under parliamentary oversight i would hope that the Countess of Mar and the group she works with were bringing this to the attention of the members of the Health Select Committee and Public Accounts Committee
    MEMum, Webdog, RogerBlack and 2 others like this.

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