Damning criticism of the flawed #PACEtrial by psychologist Prof Brian Hughes

Damning criticism of the flawed #PACEtrial in a new book by Prof Brian Hughes on the “rampant methodological crisis” in psychology.

 'Rampant methodological crisis' - describes how psychologists invent their own study methods, change them part way if the data don't fit their preconceptions, misuse stats etc.

 “The controversies surrounding the PACE trial can be seen as emblematic of the real-world problems caused by psychology’s many crises.”

 From p. 140: That the PACE Trial continues to be so doggedly defended, despite a litany of damaging critiques, shows us how psychologists can retain an unswerving allegiance to their own ideas.

 You can read here part of the pages dedicated to the PACE trial (from p132 to 140, p 138 is missing).

The Times: Call for review of ‘flawed’ ME research in Lancet letter

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By Tom Whipple, Science Editor, August 21 2018, 12:01am, The Times

More than a hundred academics have joined ten MPs and scores of patient groups from around the world to sign an open letter calling for The Lancet to reanalyse a study into treatment for myalgic encephalomyelitis (ME).

The letter follows a debate in parliament in which one MP said that the study, which is used to set NHS guidelines, “will go down as one of the biggest medical scandals of the 21st century”. The authors of the research paper stood by their findings and said that the letter represented a campaign to discredit solid research and force the retraction of papers simply because patients disagreed with their findings.

The signatories, who include academics from Harvard, Stanford, UCL and the London School of Hygiene and Tropical Medicine, said that the 2011 Pace trial, which recommended therapy and exercise as a treatment for the condition, had “major flaws” and “unacceptable methodological lapses”.

The £5 million publicly funded trial was published in The Lancet and has informed advice on treating people with ME in the NHS and abroad, but is controversial among ME sufferers. Some claim that its advice perpetuates an idea that the disease, which causes debilitating disability, is all in the mind.

The Lancet declined to comment.

https://www.thetimes.co.uk/edition/news/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh   

Multidisciplinary rehabilitation treatment is not effective for ME/CFS : A review of the FatiGo trial

Review of the FatiGo trial (Vos-Vromans), one of the 13 pieces of evidence NICE will review. FatiGo, a trial with many problems including ignoring its own results.

Mark Vink, Alexandra Vink-Niese,

First Published August 6, 2018 Review Article 

Abstract

The FatiGo trial concluded that multidisciplinary rehabilitation treatment is more effective for chronic fatigue syndrome/myalgic encephalomyelitis in the long term than cognitive behaviour therapy and that multidisciplinary rehabilitation treatment is more cost-effective for fatigue and cognitive behaviour therapy for quality of life. However, FatiGo suffered from a number of serious methodological flaws. Moreover, it ignored the results of the activity metre, its only objective outcome. This jeopardizes the validity of FatiGo. Its analysis shows that there was no statistically significant difference between multidisciplinary rehabilitation treatment and cognitive behaviour therapy and neither are (cost-)effective. FatiGo’s claims of efficacy of multidisciplinary rehabilitation treatment and cognitive behaviour therapy for chronic fatigue syndrome/myalgic encephalomyelitis are misleading and not justified by their results.

Full text 

Please SMILE and GETSET for the FUQOFF trial

GETSET: when your mates are the trial steering committee ...

No problem making Endpoint changes during an unblinded trial if your mates who also ignore all the evidence that #MEcfs is a physical disease (PACE trial's Alastair Miller (infectious disease specialist and former Action for ME Medical advisor, the only "ME charity" that was part of the PACE trial and psychologist Rona Moss- Morris) are the trial steering committee and your PACE trial mates are part of the Data Monitoring and Ethics Committee.

 GETSET Data Monitoring and Ethics Committee (DMEC): Astrid Fletcher, Charlotte Feinman and Irwin Nazareth who has co-authored MEcfs articles with Esther Crawley and Peter D. White ...

 PACE trial Data Monitoring and Ethics Committee (DMEC): Professor Paul Dieppe (initial chair), Dr Charlotte Feinmann (liaison psychiatrist) and Professor Astrid Fletcher (final Chair, epidemiologist).

 In 2012 a group of doctors in the UK wrote a letter to the Independent on Sunday and all British newspapers to condemn the harassment and death threats by patients of Simon Wessely of which he had never provided any evidence; the foi commissioner last year ruled that the psychiatrists had grossly exaggerated things/made things up and that there were no death threats. Amongst those signing that letter were: the three principal investigators of the PACE trial (Peter White, Michael Sharpe and Trudie Chalder), Alastair Miller, Rona Moss-Morris, Charlotte Feinmann, Esther Crawley, and MEGA's chairman Stephen Holgate. http://www.independent.co.uk/voices/letters/ios-letters-emails-online-postings-2-december-2012-8373777.html

Dr Keith Geraghty's undeclared conflict of interest

Does the PACE trial represent professional misconduct?

PACE trial should acknowledge inefficacy and harmfulness of CBT and GET

By Mark Vink, (Family Physician) the author of the 2016 Review of the PACE trial for which he was nominated for the John Maddox Prize for Standing up for Science.

If CBT and GET had really been effective there would have been no need for an extensive number of changes to the recovery criteria made during an unblinded trial, making the definition much less accurate to the point that people who were still (severely) ill were classed as recovered.

The time has now come for the PACE trial authors to stop misrepresenting their own results; acknowledge the inefficacy and harmfulness of CBT and GET to prevent further unnecessary suffering inflicted on patients by physicians/therapists, which is the worst of all harms, yet totally preventable.

MORE @ Observantonline, the journal of the University of Maastricht

Berkeley's lecturer in public health: Bizarre PACE trial response

By David Tuller, lecturer in public health and journalism at the University of California, Berkeley:

They have recently argued, in response to Wilshire et al, that it doesn't matter that some participants were recovered on the physical function or the fatigue outcomes at baseline because there were other recovery criteria. This is truly a bizarre response for researchers to make. It is also a serious violation of the rules of honest scientific inquiry. It is unclear to me why we all have to waste so much intellectual time and energy simply to demonstrate that studies in which participants can be disabled and recovered simultaneously on key indicators should never have been published and, once published, need to be retracted immediately. The PACE authors have no scientific ground to stand on.

MORE @ Observantonline, the journal of the University of Maastricht

Psychologist Prof Coyne: PACE trial's CBT for ME/CFS is condescending pseudoscience

Psychologist Prof Coyne on #PACEtrial's CBT for #MEcfs: condescending pseudoscience presented to convince patients that their problems were in their heads

from Danish RCT of cognitive behavior therapy for whatever ails your physician about you | Mind the Brain http://blogs.plos.org/mindthebrain/2016/12/07/danish-rct-of-cognitive-behavior-therapy-for-whatever-ails-your-physician-about-you/

Sir Simon Wessely (the godfather of PACE): The PACE trial simply made whatever adjustments they needed in order to get the results they wanted

Sir Simon Wessely (the godfather of PACE): The PACE trial simply made whatever adjustments they needed in order to get the results they wanted

By spoonseeker 9 December 2016:

  As for the PACE authors themselves, I doubt that anything will make a difference. They had clearly decided how the trial was going to turn out before they even started it, and I can’t see anything changing their views about it now, whether peer reviewed or otherwise.

PACE was not a voyage of discovery. As the godfather of PACE, Sir Simon Wessely, inadvertently revealed, they always knew exactly where they wanted to get to.

They simply made whatever adjustments they needed in order to get there. They live in a world where they are right, patients are wrong, and the facts can be changed to support that. I doubt they’re open to any kind of reason.

Or as Professor Steven Lubet, a Professor of Law at Northwestern University, recently stated:

"Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way. 

But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. 

You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there.  Just so."

Dr Phil Hammond in this week's Private Eye Magazine: ME "is a proven and classified neuro-immune disorder"

Dr Phil Hammond in this week's Private Eye Magazine: ME "is a proven and classified neuro-immune disorder"

LSE: The medical and psychiatric establishment has to admit and apologise for abusing ME/CFS patients

LSE: The medical and psychiatric establishment has to admit and apologise for abusing ME/CFS patients

  LSE, 21 November 2016:

  "the psychiatrisation of conditions like Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) where organic and physical conditions become ‘all in the mind’. Here, whilst there is a complex inter-relationship between the mind and body, psychiatric reductionism has resulted in a catalogue of instances of maltreatment, neglect and abuse."  

  "The medical and psychiatric establishment has yet to come clean, admit to or apologise for these abuses."

 

The inaugural Dr. Speedy health award goes to ...

The inaugural Dr. Speedy health award for a lifetime dedication to improving the health and quality of life for people with ME/CFS goes to a man who has taken on the mighty Pinocchio Psychiatrists; a fight based on scientific evidence, an essential part of modern day evidence based medicine against people who have ignored all scientific evidence for decades (even if they have produced it themselves) and have made a fortune out of opinion, non evidence-based medicine .

And the winner is, yes yes yes, Tom Kindlon. Congratulations Tom from everybody at the Dr. Speedy Network of Clinical Excellence, a well-deserved award.

PS: Please do not confuse us with NICE from the UK: the National Institute of ignoring Clinical Evidence

Bogus FITNET trial is a GET trial in disguise being tested on children who don't have #MEcfs

Bogus FITNET trial is a GET trial in disguise being tested on children who don't have #MEcfs

FITNET trial is an unblinded trial (not a RCT) using subjective outcomes which uses their own "ME/CFS" criteria so that they can select patients who do not have the disease but then label them as if they do ...

Which is not surprising as Crawley, Bleijenberg and Knoop are involved who make Diederik Stapel look like an honest man. Pinocchio research from Britain and Holland. And the medical councils are still hibernating.

If you want to make yourself sick have a look at their protocol but make sure that you've got a bucket ready or better still ask your GP for an antiemetic before you read it. You will need it.