TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

alex3619

alex3619

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Logan, Queensland, Australia
There are issues in the last report that I have forgotten about. Many of the comments are good too. This study was a litany of errors from the beginning, and its alarming to realize most doctors did not get that, and that many esteemed medical institutions were fooled. If this happened over PACE, how many other error-filled studies slipped under the radar?

The aftermath of this study discredits the medical profession globally, and especially the BPS movement under which it is often promoted. Fortunately there are enough doctors out there who took the time to investigate and decide for themselves to show that medicine is not irredeemably broken.
 
alex3619

alex3619

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Logan, Queensland, Australia
Snowdrop said:
Are they warned not to go looking for information? This is why I think that a major news outlet needs to break with the status quo and provide accurate info.
Click to expand...
Issues like this demonstrate that there is an extent to which media is also broken. Much of this has to do with changing economic times, but some is about how those economic woes change media strategy. The rise of churnalism and the decline in investigative reporting are in part why the media fail.
 
Wildcat

Wildcat

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Alex wrote: "Issues like this demonstrate that there is an extent to which media is also broken"

On This thread currently (recent post from Post#13 onwards): http://forums.phoenixrising.me/inde...with-science-media-centre-on-pace-trial.9177/
(Thanks to Leela Play and Tom Kindlon for bringing the latest Science Media Centre line up of Trustees and Advisory Committee to our attention)

Illustrates what we are up against trying to get factual reporting on the iniquities of the PACE Trial into the UK Media.




http://www.sciencemediacentre.org/about-us/governance/

The Science Media Centre Trustees and Advisory Board

Governance

Trustees

The board of Trustees is the major decision-making body of the Science Media Centre and meets at least three times a year. Trustees are distinguished in the fields of science, engineering, medicine, journalism, communications, finance, law and policy.

Jonathan Baker (Chair) Professor of Journalism, University of Essex, (ex-Head of Newsgathering, BBC)

Marshall Davies (Treasurer)
Former President of the Royal Pharmaceutical Society

Julian Hitchcock Counsel, Denoon Legal

Dr Helen Jamison
Head of Media Relations, Wellcome Trust

Prof. Ottoline Leyser Director & Professor of Plant Development, Sainsbury Laboratory, Cambridge University

Prof. Sir Mike Rawlins Former Chair of NICE

Jo RevillChief Executive, British Society for Immunology

Mark Sudbury
Director of Communications and Marketing, University College London

Fran Unsworth
Director World Service Group, BBC

Prof. Sir Simon Wessely
Professor of Psychological Medicine, Kings College London




Advisory Committee

The Trustees are guided by a voluntary group of advisors from the fields of science, engineering, medicine, journalism and communications, who provide expertise and advice, and also meet three times a year.

Prof. Wendy BarclayChair in Influenza Virology, Imperial College London

Steve BatesChief Executive, BioIndustry Association

Dr Helen Bedford Senior Lecturer in Paediatric Epidemiology, UCL Institute of Child Health

Prof. Dorothy Bishop Professor Developmental Neuropsychology, University of Oxford

Adrian Bull External Relations Director, National Nuclear Laboratory

Dariel Burdass
Deputy Chief Executive and Director of Strategy and Communications, Society for General Microbiology

Prof. Chris Chambers Senior Research Fellow in Psychology, Cardiff University

Lord Paul Drayson Entrepreneur and former Science Minister

James Gallagher
Health Editor, BBC News

Jeremy Laurance Former Health Editor, The Independent and the i

Prof. Robin Lovell-Badge Head of Developmental Genetics, MRC National Institute for Medical Research

Lawrence McGinty
Former Science Editor, ITV News

Fay Schlesinger Home Editor, The Times

.
 
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eafw

eafw

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Tom Kindlon said:
I just did a Google search for:
"david tuller" "pace trial" "trial by error"

Very few results at the moment. Perhaps other search terms would give better results but at the moment there doesn't seem to be much besides ME/CFS Facebook groups/pages and a few of the free online newspapers that aggregate Twitter tweets.

"David Tuller" doesn't give any news results.
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For those that are twittering, maybe you could spice up the hashtags a bit. #PACEtrial isn't going to go very far. Would be nice to see #nationaldisgrace #shambles #charalatans #quacks #farce #firstdonoharm? #sweptunderthecarpet #youshouldbeashamedofyourselves ... as well.
 
moosie

moosie

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Snowdrop said:
I really don't know what to propose as a solution for this. The information is out there but particularly in the UK we get these bizarre stories.
Are they warned not to go looking for information? This is why I think that a major news outlet needs to break with the status quo and provide accurate info.
Click to expand...

I was repeatedly warned by doctors not to read anything about it on the web. Also told not to join any of the patient groups/charities. (I think I was warned particularly against the Me Association.) By doctors that seemingly had no connection to one another. And I didn’t for years. A Doctor told me. Continued pushing myself a bit more all the time (after a year completely bedbound at the start). Eventually started getting worse and worse – kept pushing – mind over matter. I charged on with my life as much as I could. I had/have so much that I wanted/want to do with my life. Who wants to be ill?? Now mostly housebound, mostly bedbound. How different would my life be now if I’d had proper advice and maybe even a little help? Who knows. I’ve been ill about 20 years and I’ve never had a good day – health wise – in all that time. Not one. The same as many people here.

This amazing piece by Tuller will have to be recognized by the UK at some point – you just can’t deny the information in it. Slam-dunk. Thanks to the tenacity and hard work of, in particular, Tom Kindlon and the others who have been making a stink with FOI requests. It’s just how long is it going to take?? I’m a Guardian reader and I’ve been so disappointed that they have been so - excuse me – crap over this illness. I’m going to try to write them a letter. This has taken me hours to write so it may be a while.
 
jimells

jimells

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northern Maine
I've managed to read the entire article, and it is certainly an impressive piece of work. I'm blown away by the technical accuracy and consistent use of terms, that is, he got his facts right, a huge achievement considering the complexity of the topic.

I wonder if the length of the article, while necessary to cover the story, will tend to limit its usefulness. I expect few physicians will have the time to read it. I'm hoping the article will be the foundation for shorter stories aimed at specific audiences, and disseminated widely, of course.

Maybe this isn't fair, but I keep thinking that Mr Tuller has nearly missed the real story here, which is the burial of our illness by the insurers, and their use of the Wessely School, the media, and various government agencies to do that.

Perhaps this article is merely the first chapter in that story, and Mr Tuller is still raking the muck. I sure hope so.
 
Wildcat

Wildcat

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1,446
@jimells wrote:
"Maybe this isn't fair, but I keep thinking that Mr Tuller has nearly missed the real story here, which is the burial of our illness by the insurers, and their use of the Wessely School, the media, and various government agencies to do that."

Agreed.
 
Snowdrop

Snowdrop

Rebel without a biscuit
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2,933
alex3619 said:
Issues like this demonstrate that there is an extent to which media is also broken. Much of this has to do with changing economic times, but some is about how those economic woes change media strategy. The rise of churnalism and the decline in investigative reporting are in part why the media fail.
Click to expand...

And the fact that media ownership is compressed to fewer people.
 
Snowdrop

Snowdrop

Rebel without a biscuit
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2,933
@jimells
I agree the article is brilliant but the fact that it is so long means less eyes (I hope I'm wrong)
Maybe someone with energy might do a precis. But maybe Tom Kindlon's work is a kind of precis.
 
S

Sasha

Fine, thank you
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UK
jimells said:
Maybe this isn't fair, but I keep thinking that Mr Tuller has nearly missed the real story here, which is the burial of our illness by the insurers, and their use of the Wessely School, the media, and various government agencies to do that.
Click to expand...

I think there's a whole ton of stories but that the one that David Tuller has covered is the most incontrovertible one because the documentation of it is in plain sight, in journals.

Think of it as a crowbar!
 
W

worldbackwards

Senior Member
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2,051
I don't know if this has been floated, is being so or whatever, but wouldn't it be best if someone started trying to get this published somewhere in print rather than it just floating around on the internet? Or am I way behind everyone here?
 
T

Tom Kindlon

Senior Member
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1,734
Valerie Eliot Smith has written a short blog post on David Tuller's indepth investigation of the PACE Trial.

She mentions:

"I have been in contact with David during the last eighteen months and I have given him some assistance with the production of this article."
Click to expand...
http://valerieeliotsmith.com/2015/10/21/the-pace-trial-david-tuller-investigates-part-1/

Hopefully there will be more blog posts. I know blogs often link to each other so one post could be seen by quite a lot of people. Even a short post linking to the articles and some summary pieces (e.g. by Cort Johnson and #ME Action) would be useful.
 
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