1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

PACE Trial and PACE Trial Protocol

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

  1. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,902
    Kind of amusing that NICE don't think PACE showed anything worthwhile.
     
    Valentijn and Sean like this.
  2. biophile

    biophile Places I'd rather be.

    Messages:
    1,409
    Likes:
    4,943
    Since the 2007 NICE guidelines for CFS were published, evidence had come to light that CBT and GET do not increase employment hours and do not increase total activity levels, contrary to common allusions.

    These findings come at no surprise to patients and carers who live in the real world, but such facts should be part of any guideline which purports to outline how patients should be managed with CBT/GET.
     
    Valentijn, Sean, Dolphin and 2 others like this.
  3. Graham

    Graham Senior Moment

    Messages:
    846
    Likes:
    2,246
    Sussex, UK
    I think PACE used the London criteria, but to be honest, it is so irrelevant I haven't bothered comparing it with the others, otherwise we will all be debating how many psychiatrists in the Wessley camp can dance on the head of a pin.
     
    Valentijn and Sean like this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,859
    Likes:
    4,621
    Cornwall, UK
    I prefer the question of how many pins one can stick in the head of a psychoquack! :D
     
    peggy-sue likes this.
  5. Graham

    Graham Senior Moment

    Messages:
    846
    Likes:
    2,246
    Sussex, UK
    Well, I'd put more faith in voodoo that psychology for sorting out my ME. At least as a zombie I'd get about more.
     
    peggy-sue, Min and Valentijn like this.
  6. biophile

    biophile Places I'd rather be.

    Messages:
    1,409
    Likes:
    4,943
    It has been mentioned a few times on this forum that James Coyne is a renegade psychologist who critiques the flaws in CBT and other psychological research. He has recently been ripping into the CBT trial for schizophrenia, which was published in the Lancet and hyped uncritically, reminiscent of the PACE results being published there 3 years ago.

    Coyne is at least cursorily aware that potential issues exist with the PACE Trial.
    https://twitter.com/CoyneoftheRealm/status/407067890224230400

    But if anyone has wondered why Coyne has not been all over the PACE Trial like a seagull at a picnic (or garbage dump), besides the usual such as being too busy or simply just not being interested, here is another possible reason:

    "I know Simon Wessely and know that he has had death threats over his interpretation of a trial of CBT chronic fatigue."

    http://jcoynester.wordpress.com/2014/02/12/my-response-to-the-hacking-of-this-blog-site
     
    Last edited: Feb 25, 2014
  7. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,714
    Likes:
    10,219
    Amersfoort, Netherlands
    Fascinating. Someone gets a death threat, and suddenly their bullshit theories cannot be politely and scientifically disputed. I guess that explains his I'm-the-victim media campaign regarding such threats.
     
    Purple, peggy-sue and Roy S like this.
  8. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    473
    Illinois, USA

    That's a good find. The other sentence regarding Wessely seems to indicate that he doesn't understand the issues.

    "I know Simon Wessely and know that he has had death threats over his interpretation of a trial of CBT chronic fatigue. I do not think he wants to step back into the fray late judgments about a trial of CBT for unmedicated schizophrenics."

    Gish Gallop is a good term that he uses.
    http://rationalwiki.org/wiki/Gish_Gallop
     
  9. Min

    Min Senior Member

    Messages:
    1,304
    Likes:
    1,626
    UK
    There is no evidence that even one person with myalgic encephalomyelitis has ever threatened a researcher. It is deliberately harmful propaganda being used to denigrate us. The only person ever convicted did not have M.E. or even chronic fatigue.
     
    ukxmrv, Art Vandelay and peggy-sue like this.
  10. biophile

    biophile Places I'd rather be.

    Messages:
    1,409
    Likes:
    4,943
    I am not sure who you are referring to, Coyne or Wessely? Just to be clear: Wessely is mentioned because, during a debate between Coyne and the "hacker" of his blog, the "hacker" apparently suggested using Wessely as a referee:

    [edit: the debate involves a trial of CBT for schizophrenia]

    On the issue of abuse ...

    Considering how common internet abuse is these days even for unimportant issues, I tend to think that a degree of abuse towards a few CFS researchers has plausibly occurred over heated issues. However, you are correct that it has been used successfully to tarnish the general impression of their critics, but no solid evidence has been produced, just unverifiable references to the police or authorities, despite the lack of arrests for such supposedly-common criminal offenses.

    The Nigel Hawkes BMJ article, IIRC commissioned by the Science Media Center for what they later described as part of their organized campaign against abusers, does mention some disturbing examples though.

    I also vaguely remember one researcher coming to PR to describe some abuse they allegedly received. However, after interpreting the slightest criticism or failure to respect their supposed scientific authority as "harassment", it unfortunately made me question the severity and nature of the other alleged abuses.
     
    Last edited: Feb 25, 2014
    peggy-sue, Ritto and Valentijn like this.
  11. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    473
    Illinois, USA
     
  12. biophile

    biophile Places I'd rather be.

    Messages:
    1,409
    Likes:
    4,943
    I thought it would be the first sentence rather than the second sentence which indicates Coyne doesn't understand the issues surrounding PACE and ME/CFS, because he seemingly refers to it as a CBT trial for "chronic fatigue". Although on the other hand, PACE only required the Oxford criteria, which all other CFS definitions regard as idiopathic chronic fatigue.

    The second sentence makes sense from the point of view of bringing in Wessely to referee an argument about "a trial of CBT for unmedicated schizophrenics", since that is what Coyne's blogpost was all about.
     
    Last edited: Feb 25, 2014
  13. Graham

    Graham Senior Moment

    Messages:
    846
    Likes:
    2,246
    Sussex, UK
    I can't get my head around this idea that abuse and threats over the internet has put professionals off. What about all those professionals who face real physical threats regularly, such as medical staff at A&E, social workers, teachers, …? Is it just that they see it as a vocation, whereas these folk just aren't that committed to their cause? Or is it simply that a larger salary reduces a person's dedication?
     
    Cheshire, Bob, Valentijn and 3 others like this.
  14. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,714
    Likes:
    10,219
    Amersfoort, Netherlands
    Option 3: They're just looking for yet another excuse to vilify anyone who disagrees with them. Despite Wessely's histronics, I don't think we've lost any useful researchers or clinicians due to purported abuse. Even Wessely keeps coming back :meh:
     
  15. Graham

    Graham Senior Moment

    Messages:
    846
    Likes:
    2,246
    Sussex, UK
    Is that the solution then to getting better researchers?
     
    peggy-sue and Valentijn like this.
  16. Art Vandelay

    Art Vandelay

    Messages:
    50
    Likes:
    74
    Adelaide, Australia
    Precisely. If real death threats had been made, they would have been reported to the police and action would have been taken. Alleging "death threats" is a tactic used by vested interests to shut down debate (it has been used in Australia in recent years on other issues).
     
    Last edited: Feb 26, 2014
    peggy-sue and Min like this.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,166
    Simon likes this.
  18. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    258
    Likes:
    799
    I haven't followed it closely but there has been a bit of a furore among some with how a trial of Cognitive therapy for another condition, Schizophrenia, has been reported in the Lancet. This article links to a lot of the information:
     
  19. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,902
    From Lancet PACE:

    I was just about to look into reference 31, when I found that Dolphin already had (back on page 32!).
    I thought I'd repost, as I think that this was one of the two papers that they cited to justify changing their primary outcomes from those laid out in the trial's protocol:


    The text is no longer available at that link.
     
  20. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,902
    The other paper that they cited to justify their changes in primary outcome measures:

    PACE Lancet:

    30: http://www.ncbi.nlm.nih.gov/pubmed/19455540

    This paper got a few bits of correspondence, and I meant to look into it more in 2011, but I don't think we ever got copies of them.
     

See more popular forum discussions.

Share This Page