Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

  1. Dolphin

    Dolphin Senior Member

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  2. slysaint

    slysaint Senior Member

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    Ok....I am going to make it my mission to read this whole thread and hopefully not ask things that have already been answered.;)

    But already have noted how often the phrase 'the tide is turning' has been used over the years; hopefully it really is this time.
     
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  3. Valentijn

    Valentijn Senior Member

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    Pretty sure it happens several times per day, actually :p
     
  4. Tom Kindlon

    Tom Kindlon Senior Member

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  5. Dolphin

    Dolphin Senior Member

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    Last edited: Jun 3, 2017
  6. Dolphin

    Dolphin Senior Member

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  7. RogerBlack

    RogerBlack Senior Member

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    Broad outline: PACE is being used to justify treatment of CFS patients it was never tested on (the severe group) At best it has a null outcome, but a reasonable case can be made that due to the problems in reporting changes, significant numbers of people could have been made a lot worse.

    I thought I'd posted one of the criticisms that is missing in the paper - you can get worse a _lot_ in some cases before you're even considered to have a non-serious harm.
    For example, going from able to work full time, to only being able to work part time Or being unable to do anything workwise, but being able to putter around in the garden for half an hour to not-quite bedbound.
    These changes can persist forever, and still be 'non-serious'.
     
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  8. Dolphin

    Dolphin Senior Member

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    I wasn't that impressed with this unfortunately.
    The start was okay. Nothing particularly new but the points were reasonable enough I thought:

    ---

    This is true. But what you would be particularly interested in would be if CBT and GET resulted in increased adverse events and this was not found. People with CFS tend to have a lot of symptoms and some fluctuations so you can't ascribe every adverse event to treatments.

    ---

    I don't think one will necessarily get changes at 33%/33%/33%. One could equally get say 10%/80%/10% if the thresholds for change were not minimal.

    Quite a bit of the latter part of the document assumes 33%/33%/33%

    ---
    CBT and GET actually did the best in this. So I'm not sure it says anything bad about CBT and GET.

    I'm not sure however whether it really shows deterioration for APT. The APT did no worse than CBT on all the objective measures. I think it could simply be a reporting bias, that APT are now more cautious about activity.
     
    Last edited: Jun 10, 2017
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  9. Dolphin

    Dolphin Senior Member

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    Unfortunately I was not that impressed with this in terms of the criticism of the PACE trial and its results.

    The Specialist Medical Care-only group were effectively a no treatment group in the PACE trial. One could argue that the APT group was a placebo or a control group. The results obtained for CBT and GET on many subjective measures were better than these 2 groups so you can't necessarily put the changes down to natural fluctuations.

    The UNSW study was different as there was no control group
     
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  10. Esther12

    Esther12 Senior Member

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    I didn't read either of those pieces closely, but on a skim through I was worried that some of the claims made were not safe. Thanks for going through them and then posting up your concerns. Important to try to keep PACE criticism as good as possible.
     
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  11. Esther12

    Esther12 Senior Member

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    Not really interesting enough for its own thread, particularly as we missed it, but I'd have liked a recording:

    http://www.stx.ox.ac.uk/current-members/events/2773
     
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  12. Valentijn

    Valentijn Senior Member

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    :mad:

    This is nothing more than hate speech being used by supposed professionals to push an agenda. How the hell are they allowed to spew this backwards bile at educational institutions?
     
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  13. Sean

    Sean Senior Member

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    The sheer gall is breathtaking. You'd think after the widely publicised, unambiguous tribunal finding of no evidence of significant harassment at all, that they would be at least a little more circumspect and modest in their claims.

    But no. Just keep telling the Big Lie at every opportunity.
     
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  14. Hutan

    Hutan Senior Member

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    New Zealand
    :eek:
    I was a member of St Cross College. Now I find it's an epicentre of BPS. Somehow it makes the affront more personal. I shall eventually write them a (polite) letter. Although as both a person from the colonies and an ME patient, my words won't count for much.

    :rofl::rofl: The irony.

    @harveythecat, are you still taking on Oxford?
     
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  15. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Bless, 85,000 doctors receiving a warning about the PACE trial in New York state must have come as a bitter blow to Sharpe. Can't recall if that was just after this event, but it was the May newsletter. I see the psychological projection continues with the weaponising of anti-climate science rhetoric. The poor little man looks at us and sees himself. He cannot be unaware of the science on ME, I mean the real science. All he can do is wail to those who will listen. I wonder if the little team of PACE charlatans and their accolytes have secretly ordered the DVDs from the Invest in ME conference, just to see what they're up against. It would be nice to think of them watching the TV in a darkened room as real scientists give presentations which are completely beyond their competence or ken. I'd happily send them a box of hankies to wipe their tears, though they could tear up their rank amateur trial instead and use that. Or maybe David Tuller could offer shreds of paper from his performance piece knows as Tearing Up The PACE Trial. These self-promoting fools might not be out the field yet, but their recent behaviour just flags up the mounting panic, paranoia and tin foil hat antics. So delicious to see their pompous pretence to be scientists.

    P.S. Someone add that Sharpe/Oxford page to the internet wayback machine.
     
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  16. Dolphin

    Dolphin Senior Member

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  17. slysaint

    slysaint Senior Member

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    A few 'highlights'

    "It’s extraordinary that 16 papers would come out of a single psychotherapy trial. The authors seem to be pointing to that as an accomplishment, but for others who are concerned with broader issues, it raises issues about duplicate publication and the integrity of the peer review under which those 16 papers were published."

    "Their citing of Action for ME (2011) is inappropriate for a number of reasons. It’s an unrepresentative that was not subject to peer review. The claims that patients believe their treatments lead to improvement of contradicted by the extraordinary petitions signed by thousands."

    "Advocates for the improvement of the trustworthiness of the psychological literature should be particularly offended by the distorted view offered in their point (3). They are dodging the very important issue of not only investigator allegiance, but investigator conflict of interest."

    "...the authors abandoned their protocol and a substantial portion of the patients available for the follow-up were no longer receiving the treatment to which they were assigned."

    "The authors substantially misrepresent the use of Freedom of Information Act requests and their response to them. They exaggerate the number of requests that were made by counting multiple times any request that involved multiple variables....They misrepresent the multiple times they’ve invoked the excuse that people who requested the data were vexatious."

    "I find it odd that they retreat to a blog post by Simon Wessely as a defense of their many methodological problems."

    "Their excuse that they do not release their data because the consent forms do not allow it was argued in proceedings that cost them over 250,000 pounds"
     
    Last edited: Jun 13, 2017
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  18. Dolphin

    Dolphin Senior Member

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  19. Cheshire

    Cheshire Senior Member

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  20. dangermouse

    dangermouse Senior Member

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    Good grief!! It's gets worse. Thanks for posting @Cheshire

    I'm speechless.
     
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