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New PACE paper, more SMC spin.

Discussion in 'Latest ME/CFS Research' started by Esther12, Jan 13, 2015.

  1. Esther12

    Esther12 Senior Member

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    Not out yet but there's this from the SMC, although it then got taken off-line:

    Removed from google, but saved by @maxwhd here: https://twitter.com/maxwhd/status/555130020939591682/photo/1

    More of the pretence that patients are foolishly angry because they're just so misguided in their understanding of psychiatry and mental health, rather than because PACE are refusing to release results for the outcomes laid out in the trial's protocol and have instead being spinning things to make CBT and GET look better:

    https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po

    Oh the cruel harassment of an FOI request asking for the release of important data! Imagine being so brutally attacked as to be accused of bias! Imagine - the very idea of researchers wanting to hype their results, and being aided by lazy journalists. It's heart breaking. I wonder if they'll do sad faces while talking about 'stigma', even as they try to promote and hide behind this bigotry.

    Maybe the British science press might be willing to do a bit of independent research... but I doubt it. The PACE 'Recovery' paper didn't get any press despite being promoted by the SMC, but I think that was largely because reporters remembered having uncritically parroted the even more positive claims about recovery when the first paper came out. "They're now saying only 22% recovered? What cautious researchers, I remember thinking that it should be a third, or maybe 30-40%!" The post-hoc 'recovery' criteria which led to the 22% claim has now been criticised as 'contradictory' by the recent P2P Evidence Review for defining 'normal' fatigue and disability in a way that overlaps with their own criteria for 'abnormal' fatigue and disability - maybe some 'experts' repeating the things patients have been saying for years will mean a couple of journalists actually take the time to think things through for themselves.

    Also, I like how they now use the dismissive 'all in the mind' phrase to encapsulate patient's foolish fears. This old discussion from Wessely and Shorter is of interest here imo:

    http://forums.phoenixrising.me/showthread.php?14523-1997-Wessely-thing-(minor-more-morality-and-philosophy-than-CFS)

    Just to remind people, this is how the PACE mediation results were presented earlier:

    Sounds like they've been sexed up since.

    I wonder if they'll mention the evidence from PACE that CBT and GET just lead to minor improvements in questionnaire scores in a nonblinded trial - like homeopathy and lots of other worthless interventions. When pushed to include more objective evidence as part of the PACE trial, as actometers were only used at baseline, they stated:

    "We have used several objective outcome measures; the six minute walking test [1], a test of physical fitness [2], as well as occupational and health economic outcomes [3]. Although we originally planned to use actigraphy as an outcome measure, as well as a baseline measure, we decided that a test that required participants to wear an actometer around their ankle for a week was too great a burden at the end of the trial. We will however test baseline actigraphy as a moderator of outcome."

    http://www.biomedcentral.com/1471-2377/7/6/comments

    None of them showed imporovement for CBT or GET other than a statistically significant improvement for the 6mwt post-GET that did not meet the criteria for clinical significance that was used for the other PACE outcome measures.

    Since that point we've also had the public release of old data from CBT trials showing that CBT led to improvements in questionnaire scores, but not in the amount of activity patients could actually do when measured objectively with actometers: http://www.bmj.com/rapid-response/2...-released-showing-there-was-not-statistically

    What do we reckon the new results will be presented as? More confounds sold as breakthroughs?

    • People who report improvements in symptoms also reported being more positive about treatment... therefore we must put the most positive spin on treatments possible in order to promote these empowering cognitions!
    • People who report improvements in symptoms also reported feeling less depressed... important but controversial evidence that disability is perpetuated by emotional disorder in these patients. Sadly this will be rejected by some stubborn dualists!
    • People who report improvements in symptoms will also report feeling less concerned by symptoms... we must convince patients not to worry about symptoms. The negativity around this condition is oh so very destructive!
    • People who are most likely to believe that they have control over symptoms are most likely to report an improvement in symptoms.... there's no potential problems with bias in a non-blinded trial. Don't worry about that!
    • People who think that their problems have a psychological cause are most likely to report improvements following psychological therapies... if only we could convince everyone of the importance of psychosocial perpetuating factors, then the NHS could devote even more resources to cheap and effective CBT!
     
    Last edited: Mar 24, 2015
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  2. Esther12

    Esther12 Senior Member

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    PS: Maybe we should keep this thread for any press coverage/spin, and start a new thread for the emergence of the paper?

    Also... probably worth not putting too much time into keeping up with this now if you're doing things for the P2P. The whole 'antipsychiatry'/fear of stigma bigotry really bugs me though - hard not to be pissed off by it.
     
  3. Valentijn

    Valentijn Senior Member

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    Oh good, I was just looking for some more fiction to read :rolleyes:
     
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  4. Esther12

    Esther12 Senior Member

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  5. A.B.

    A.B. Senior Member

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    A straw man is a common type of argument and is an informal fallacy based on the misrepresentation of an opponent's argument.[1] To be successful, a straw man argument requires that the audience be ignorant or uninformed of the original argument.

    http://en.wikipedia.org/wiki/Straw_man
     
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  6. charles shepherd

    charles shepherd Senior Member

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    There is likely to be extensive media coverage in the UK press of this new Lancet paper once the embargo is lifted at midnight.

    The MEA has a statement that has already been sent to the press and this has resulted in a number of enquiries from the serious health correspondents.
     
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  7. chipmunk1

    chipmunk1 Senior Member

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    of course it is all in the mind.

    has there ever been a treatment with medications aside from antidepressants? Answer: No
    Has there ever a therapy that wasn't mostly behavioural? Answer: No

    Since the treatment has never differed from a psych treatment one has to conclude.

    Either it is viewed as all in the mind or it is at least treated as if it were all in the mind.

    all this talk about "science" is disgusting. Psychobabble is at best a social science at worst a pseudoscience.

    they should stop pretending they are scientists with a good understanding of the human brain. This will be possible maybe 50-70 years from now. Not today. Surely not with 100 year old freudian theories or behavioural idiocy from the fifties.
     
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  8. Daisymay

    Daisymay Senior Member

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    Groan......

    Charles, Ian LIpkin spoke at the SMC to journalists (and to SMC employees) when he was over for the UK Collaborative Conference did he not?

    How did it go?

    What was the reaction of the journalists and the SMC?

    One would have hoped that having heard someone of the calibre of Lipkin talk about his (and others) research on ME, stating therefore that it is an organic disease, journalists would have seen the light and seen that the psychiatric paradigm is invalid.

    Did that happen in any shape or form?

    Thanks.
     
    NK17 and Min like this.
  9. user9876

    user9876 Senior Member

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    I hope you remind the press that this is a group that redefined recovery to be not quite as well as the trial entry conditions and are suppressing trial results as defined in their original protocol. And suggest that the press should ask in any press conferences why results from the PACE trial are being kept secret.
     
  10. jimells

    jimells Senior Member

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    northern Maine
    Dumb. Dumb. Dumb. How could they allow themselves to be recorded while admitting that they lie for profit?
     
  11. A.B.

    A.B. Senior Member

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    Yes, but this is not the reason why the PACE trial is being criticized. The PACE trial is about the claim that exercise and belief modifications can reverse the illness. It is criticized for nonsensical use of statistics, flawed patient selection criteria, nonsensical definition of recovery, and others. If we stick to objective criteria, the PACE trial is evidence that GET and CBT are not effective. Finally, there are also clear conflicts of interests: it was partially funded by the UK government agency that distributes disability benefits, and several of the investigators had ties to the insurance industry.
     
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  12. Esther12

    Esther12 Senior Member

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    Pleased to hear there are some left in the UK. Are you sure?
     
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  13. charles shepherd

    charles shepherd Senior Member

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    Reply:

    Yes, Ian had to leave our London meeting earlier than planned to dash over to the SMC for a briefing with medical journalists before flying back to America

    Before departing for SMC I understood (as did he) that a number of top rank health and science journalists were going to be there

    Ian was briefed on key issues relating to ME/CFS here in the UK before he left for SMC

    Unfortunately, I did not see Ian after the SMC meeting as he was then on his way to Heathrow and we never managed to find any press reports the following day

    All rather strange…

    Now you mention it I will try and find out what happened last September - if I have time to do the detective work!
     
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  14. chipmunk1

    chipmunk1 Senior Member

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    Translation: You just tell them lies and it is ethical to do so.

    Now i need to log-off and treat my helicobacter with positive affirmations.
     
    Last edited: Jan 13, 2015
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  15. snowathlete

    snowathlete

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    UK
    "Yuk."
    That's all I have at the moment.
     
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  16. charles shepherd

    charles shepherd Senior Member

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    Valentijn, Sean, Bob and 1 other person like this.
  17. Bob

    Bob

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    I'm surprised that the Lancet is going here again. I thought they might have learned at least some lessons about how not to mock an entire patient community, and lessons about how their peer review process totally failed to serve the public. But perhaps the Lancet Psychiatry is independent enough from the main publication to not be aware of the lessons that should have been learned. Or perhaps I just have far too much faith in human nature, and I shouldn't just assume that supposedly intelligent people take on board information and amend their world-view according to the evidence and information that they are presented with.
     
    Last edited: Jan 13, 2015
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  18. Esther12

    Esther12 Senior Member

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    When people are criticised some will take the time to look at the evidence and consider whether any of the criticism was justified, some will close ranks or just assume that their critics must be ill-informed or unreasonable.
     
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  19. Sidereal

    Sidereal Senior Member

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    Lancet Psychiatry is a new journal. It doesn't even have an impact factor yet as far as I'm aware.
     
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  20. Daisymay

    Daisymay Senior Member

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    Thanks Charles, yes strange indeed, or perhaps not really.

    Please do try and find out.

    Have you noticed any glimmer of change in journalists views of me ME since that time?
     
    Kati likes this.

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