When I am 64 and other false positives : The PACE Trial.


Greg Crowhurst
6th February 2013

“Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being so “ 
Roger Pielke Jr

Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis,  according to Nelson and  Simonsohn (2011). 

Their frightening  paper “False-Positive Psychology,” shows  how  “undisclosed flexibility in data collection and analysis allows presenting anything as significant,” . In fact Nelson and Simonshon statistically “prove” that listening to “When I am 64” by the Beatles can  make you a couple of years younger !



The bad news, for people with ME,  as Nature points out, is how  : Positive results in psychology can behave like rumours: easy to release but hard to dispel. 

http://www.nature.com/news/replication-studies-bad-copy-1.10634.

Compounding the problem  “  is the pathetic state of science reporting: the problem of how unacceptably easy it is to publish total fictions about science, and falsely claim relevance to real everyday life.” In  the ME community we know more than most  the devastating impact of that.

 http://chronicle.com/blogs/linguafranca/2012/03/15/bad-science-reporting-effect/

Science has the potential to do so much good - imagine if for the last 20 years the emphasis had been upon biomedical research in ME ! Instead we have all  suffered grievously  from psychiatry  acting in the interests of massive vested interests, determined to deny the physical reality of ME. Ultimately that  is terribly damaging for science.

http://www.guardian.co.uk/science/2012/sep/13/scientific-research-fraud-bad-practice

Disturbingly it has been found that   the odds of reporting a positive result are  around "five times higher among papers in the disciplines of psychology and psychiatry and economics and business compared with space science". We would have done far better, it seems , if ME had been  ascribed  to aliens !!

http://www.guardian.co.uk/science/2012/sep/13/scientific-research-fraud-bad-practice

The situation is not improving. In 1959, statistician Theodore Sterling found that 97% of the studies in four major psychology journals had reported statistically significant positive results.  When he repeated the analysis in 1995, nothing had changed. http://www.nature.com/news/replication-studies-bad-copy-1.10634 

This is especially remarkable , given that the DSM currently lists 297 official mental disorders,  yet  there is no lab test for any of those 297 disorders. As Jon Rapport comments : If psychiatry were nothing more than an intellectual game in a vacuum, it wouldn’t matter.

 Oh, but it matters ! It matters very much to my wife and I, given she has suffered twenty untreated years of absolute  agony, while ME funding, in its millions, has been wholly diverted to psychiatry.

The evidence is overwhelming that CBT – designed to change "negative thinking" and GET are devastating for people with ME, making them worse – this is shown in study after study. So, if I was a psychiatrist, how might I manipulate the inevitable disappointing  research figures ?
There are any number of ways :


  • Write  your own version of the  London Criteria , so that they are virtually  identical to the Oxford Criteria.








  • Make sure there is  absolutely no data whatsoever in your  paper on what most people would regard as objective markers of recovery; this data was simply ignored. http://www.meassociation.org.uk/?p=14333


  • Do not define or objectively measure "fatigue". Just as  the meaning of  "ME " is shifted to "CFS", shift the meaning of "recovery" to not mean physical recovery, nor to mean loss of symptoms - only the removal of a fatigue that you have not defined in the first place, or measured in any objective way.

  • Make sure that your definition of recovery is not relative to a healthy person’s score by using the English population mean ( which includes elderly and disabled people) -  rather than the working age mean .

The PACE Trial,   surely , is  a  watershed.  No matter how much they try and veil the results in smoke and mirrors or spin it  to the hilt,  the Pace Trial  confirms  how redundant psychiatry has always been in the treatment of  ME; the serious  neurological disease that is  destroying  our lives.

Comments

  1. The authors of this PACE trial study are using a deceptive trick to get their apparently good results.

    These researchers concluded in the abstract of their PACE study that:

    "This study confirms that recovery from CFS is possible, and that CBT and GET are the therapies most likely to lead to recovery."

    However, these authors are distorting the truth by using trickery of language centered on the word "recovery."

    Their deceptive trick is this: these authors redefine the meaning of the word "recovery" within body of the text of their study, so that, under this new meaning of the term "recovery," many ME/CFS can be said to be, ahem, "recovered" following the GET/CBT therapies used in the PACE trial.

    However, if you only read the study's abstract, there is no indication that the word "recovery" used therein has been totally redefined by the authors, and thus the causal reader will erroneously assume that the word "recovery" just carries its normal English meaning, which in the dictionary is defined as "a return to a normal state of health, mind, or strength."

    Thus many people causally reading this PACE study authored by White, Goldsmith, Johnson, Chalder and Sharpe will be led to erroneously believe that GET/CBT therapies can return a ME/CFS to a normal state of health, which is not the case at all.

    I think this deceptive trick used by the authors is a genuine case scientific misconduct.

    If you are going to redefine your terms and the words you use, you need to make sure that the precise definitions of these terms are clearly given, so that there can be no misinterpretations.

    It seems apparent that the authors of this PACE study actually want their completely redefined word "recovery" to be misinterpreted. Thus, this is not a mistake by the PACE study authors, but is deliberately deceptive.

    This deceptive PACE study publication should be reported to an appropriate body within the UK National Health Service (NHS), otherwise busy NHS doctors, who only have time to scan study abstracts, may read this PACE study abstract, and then get the completely incorrect impression that the GET/CBT therapies used in the PACE trial can actually cure ME/CFS, which they cannot at all.

    ReplyDelete
    Replies
    1. Thank you so much Hip, for this - it is very helpful.

      I agree with you, a complaint needs to be lodged; the PACE document is profoundly misleading. I was sickened to read the response to the Countess of Mar's presentation yesterday in the House of Lords - all those Lords, reading from the same script it seemed - praising PACE and pushing for it to be funded for another 5 years. God help us all- the harm that is being done, the sophisticated propaganda campaign that is being waged : running rings around us all.

      Delete
  2. The only scientific measure in the PACE trial was the 6 min walking test. But the authors did not publish 27% of results from this test. What did those show?

    In the paper the 73% of the data published shows that CBT produced no objective benefit and GET produced no clinically significant benefit. Did these hidden results show CBT and GET to not only be no use for anyone in the trial, but also show them to be harmful? How can anyone know if they keep this hidden from peer review? How was such a study ever published?

    ReplyDelete

Post a Comment

Popular posts from this blog

THE STONEBIRD DEFINITION OF SEVERE ME

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis