Thursday, June 29, 2017

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

Monday, March 27, 2017

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

Monday, December 12, 2016

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/

Saturday, December 10, 2016

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."



Monday, November 21, 2016

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."

 

Friday, November 11, 2016

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

Tuesday, November 8, 2016

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.



Monday, October 31, 2016

Breaking news: Cause of ME/CFS is in the blood


By Cort Johnson (@CortJohnson) tweeted at 1:18 PM - 29 Oct 2016 live from the ME/CFS conference in Florida: #IACFS/ME #ME/CFS: ME/CFS cells put in healthy serum do fine; healthy cells put in ME/CFS serum poop out - something in the blood is cause (http://twitter.com/CortJohnson/status/792196306072633345?s=17)

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