Press release: "PACE Trial: The Making of a Medical Scandal" avail. to journalists. Please highlight

[CFS_for_19_years]

Well said.

https://twitter.com/i/web/status/892050484160331777

 

[Sean]

Cowards.

 

[lilpink]

Well said.

https://twitter.com/i/web/status/892050484160331777

Nicely played Tweet illustrating how the story has been twisted to be about the ruckus, not the scandal that PACE actually is. Which is why I repeat again: we must get our ship in order. Why is it always about everyone else bar the suffering of the patient? This narrative needs to be about what the Wessely School have done to people with ME and how PACE is the pivot around which the paradigm is now spinning..throwing out exponential BPS constructs such as MUS like a Catherine Wheel careering out of control & spitting out sulphurous sparks to create the maximum amount of carnage. I think Marks has a handle on this... his remarks are pithy but within the limits of what ought to be acceptable in such a debate. This is not about any one individual getting lairy, or it shouldn't be... This is about a very ill population suffering with the added burden of an Establishment who only wish that suffering to continue, promulgating a faulty 'evidence base' to that end. This is about US. I think Marks sees that..thankfully.

 

[JaimeS]

his narrative needs to be about what the Wessely School have done to people with ME and how PACE is the pivot around which the paradigm is now spinning..throwing out exponential BPS constructs such as MUS like a Catherine Wheel careering out of control & spitting out sulphurous sparks to create the maximum amount of carnage.

Vivid!

 

[Cheshire]

Hard kritikk av stor ME-studie

Ingrid Spilde
journalist
http://forskning.no/medisin-sykdommer/2017/08/hard-kritikk-av-stor-me-studie#.WYWNpLbhxuE.twitter

Google translate:

The so-called PACE study is the school example of bad research, writes journal editor. Thus, the war of ME / chronic fatigue syndrome continues.

The researchers behind the strongly criticized PACE study will not participate in a scientific debate on the matter. It is disappointing, writes the editor of the Journal of Health Psychology, which dedicated a whole number to the debate around the study.
"They behaved as if they should have a kind of right not to respond to criticism, according to editor David F. Marks.

He writes that the magazine gave PACE researchers and others who support their view many opportunities to defend the study in peer-reviewed posts. Initially, Marks invited as many critics and defenders of the study to write in the theme number.

https://translate.google.com/transl...08/hard-kritikk-av-stor-me-studie&prev=search

 

[AndyPR]

As you may know, a few days ago the Journal of Health Psychology published a very important special issue critiquing in depth the controversial, deeply flawed PACE Trial, a study which purported to provide evidence for the use of graded exercise and a very specific type of CBT in the treatment of ME (myalgic encephalomyelitis, also known – misleadingly – as chronic fatigue syndrome or CFS).

Congratulations to the journal’s editor Prof David F Marks for taking the trouble to inform himself about the true situation regarding ME. He is one of very few scientists and health professionals who despite having no personal or pre-existing professional interest in the condition has made the effort to look at the facts and realise that – unlikely as it may seem to many – the PACE Trial and similar ‘research’ into ME by those with a fixed biopsychosocial mindset really is every bit as flawed, misleading and potentially damaging as patients have been claiming for years.

Dr David Tuller, Prof James Coyne, and Prof Jonathan Edwards are other rare free thinkers who have not been afraid to get informed and challenge the status quo – or to put it another way, to point out that the emperor is naked because that is what he is.

https://spoonseeker.com/2017/08/05/looking-at-the-evidence/

 

[Jonathan Edwards]

https://spoonseeker.com/2017/08/05/looking-at-the-evidence/

I have not seen exactly what was said but if Davey Smith knew he was in a position to provide a defence of PACE and decided to resign instead his credibility falls to zero. Others had consistently failed to provide any cogent defence. If GDS was aware of such a defence he should have let us know. If not, why resign?

 

[Countrygirl]

I don't know the evidence for this claim:

https://twitter.com/i/web/status/895013220875980800

 

[lilpink]

I don't know the evidence for this claim:

https://twitter.com/i/web/status/895013220875980800

If true it's hardly surprising. I wonder if he was also the spokesperson from Oxford?

 

[Jonathan Edwards]

I don't know the evidence for this claim:

It figures. And presumably he will deny it pretty sharpish if it wasn't.

 

[Snowdrop]

I don't know the evidence for this claim:

https://twitter.com/i/web/status/895013220875980800

John might have said whistleblower but if they are unknown generally then they are more like a confidential informant. Suspect they don't want their cover blown. In which case there is no way to validate it except to trust the source sharing the info (I do).

 

[lilpink]

just needs a cat

Seems a bit unfair to the cat..

 

[Tom Kindlon]

https://twitter.com/i/web/status/897458781017317376

 

[AndyPR]

Letter from a patient physician to David Marks.

From this original tweet

https://twitter.com/i/web/status/897784702819602432