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

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Yogi

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Other interesting twitter accounts to keep an eye on.

Stony silence from Lancet apart from Pam "results of the PACE trial paved the way for this IOM report" *Das 6 hours ago recruiting a new media officer to deal with the aftermath of this! I think they need more than a media officer and maybe advertise for jobs for some peer reviewers!! Comical! To think this was once a world renowned and very respected medical journal.

https://twitter.com/TheLancet/status/657205320016613380

What a farce!!

It would be hilarious if people who were the victims of this bad joke of the PACE trial were not suffering from a severe neurological disease and being bed-ridden and dying from the disease!!!


*http://forums.phoenixrising.me/inde...-systemic-exertion-intolerance-disease.35729/
 
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Sasha

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Cort has just posted a blog on this:

http://www.cortjohnson.org/blog/201...-chronic-fatigue-syndrome-pace-cbt-get-trial/

Cort Johnson on Health Rising said:
Investigative Reporter Shreds PACE CBT/GET Trial: Calls Mount for Independent Review
By Cort Johnson on October 22, 2015

“I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.” Dr. Ronald Davis, Stanford University

Was the most expensive ME/CFS study ever built on a house of cards? David Tuller has published several long pieces on chronic fatigue syndrome but his piece “TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study” on the UK’s federally funded PACE CBT/GET trial may be the most impactful. The trial with it’s many problems proved to be catnip for this investigative journalist – there was just so much there… Tuller’s findings are being published in a three part series on Vincent Raccaniello’s Virology Blog. Parts I and II have been released.
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CFS_for_19_years

CFS_for_19_years

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Yogi said:
Other interesting twitter accounts to keep an eye on.

Stony silence from Lancet apart from Pam "results of the PACE trial paved the way for this IOM report" *Das 6 hours ago recruiting a new media officer to deal with the aftermath of this! I think they need more than a media officer and maybe advertise for jobs for some peer reviewers!! Comical! To think this was once a world renowned and very respected medical journal.

https://twitter.com/TheLancet/status/657205320016613380
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And here's David Tuller's reply:
davidtuller ‏@davidtuller1 2h2 hours ago
@TheLancet @pam_das given that the Lancet refused to talk to me about indefensible flaws in PACE trial, good to get a new relations officer
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T

Tom Kindlon

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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.
 
CFS_for_19_years

CFS_for_19_years

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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.
Click to expand...

I don't know what results are most important, but the article got a repost at BioPortfolio, which shows the ME Association as its source:
http://www.bioportfolio.com/news/ar...ase-of-the-PACE-Chronic-Fatigue-Syndrome.html
 
Kati

Kati

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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.
Click to expand...
I wonder if it would not be worthwile to ask ME Action to sponsor a media release. (I don't think it would be too expensive and I bet many of us could chip in for that kind of media attention.
 
searcher

searcher

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I can't go into detail, but there are several journalists that are looking into covering the story (but no guarantees.) I don't think we will see anything until the final installment comes out. And it may be slow because it's a very complex story, and AFAIK the Lancet and researchers still aren't talking. Many of us on PR have been reading about the PACE trial issues for several years, but it will take awhile for people new to the topic to really understand the history (although David Tuller is doing a fantastic job explaining how this horrible study was conceived, published, and publicized.)
 
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Kati

Kati

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searcher said:
I can't go into detail, but there are several journalists that are looking into covering the story (but no guarantees.) I don't think we will see anything until the final installment comes out. And it may be slow because it's a very complex story, and AFAIK the Lancet and researchers still aren't talking. Many of us on PR have been reading about the PACE trial issues for several years, but it will take awhile for people new to the topic to really understand the history (although David Tuller is doing a fantastic job explaining how this horrible study was conceived, published, and publicized.)
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That got me curious now.

I also think in terms of class action. Is this kind of neglect, abuse of science etc resulting in patient neglect, wrong and harmful treatments, actionable at the UK level but also internationally?
 
SOC

SOC

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Kati said:
That got me curious now.

I also think in terms of class action. Is this kind of neglect, abuse of science etc resulting in patient neglect, wrong and harmful treatments, actionable at the UK level but also internationally?
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Sigh, we wish. I doubt any legal action will be allowed in any nation. They will claim that they only had the best of intentions and were working with the best knowledge they had at the time. Nothing illegal in being stupid, willfully ignorant, self-centered, cruel, egotistical, or scientific frauds. The best we can hope for, I imagine, is that they are publicly humiliated.
 
searcher

searcher

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It took the Lancet 12 years to fully retract the infamous Wakefield study. They are not a fast-moving organization. No matter what your views are on vaccines, it was a bad study and it required a ton of pressure to get the Lancet to act.
I look forward to seeing the word "Retracted" on all the PACE-based publications like it is printed here: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)11096-0/abstract
 
Kati

Kati

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searcher said:
It took the Lancet 12 years to fully retract the infamous Wakefield study. They are not a fast-moving organization. No matter what your views are on vaccines, it was a bad study and it required a ton of pressure to get the Lancet to act.
I look forward to seeing the word "Retracted" on all the PACE-based publications like it is printed here: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)11096-0/abstract
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It's a bit off the path, but Subway just lost a class action lawsuit because their 1foot sub didn't measure up.

Edit to add: http://www.cbc.ca/news/trending/subway-lawsuit-footlong-sandwiches-1.3284866
 
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snowathlete

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Esther12 said:
The Wham! Bams! get a bit in the way of reading, but it's good to enjoy PACE getting a more high profile kicking. I'm pro-wham-bams! (Sorry for getting OT).
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I like them too but understand difficult for some. Could use Spoiler tags perhaps? I have thought to do that on rare occasion that I post animated gifs.
 
snowathlete

snowathlete

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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.
Click to expand...

In my limited experience it takes time but good content that gets attention does rise up the ranks and can suddenly appear in results out of the blue.
I think it being three parts will help its chances and it being shared and linked on other sites makes a huge difference.
 
TiredSam

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Y

Yogi

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Kati said:
I

I wonder if it would not be worthwile to ask ME Action to sponsor a media release. (I don't think it would be too expensive and I bet many of us could chip in for that kind of media attention.
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Yeah ME Action are quite media savvy. I agree many people would chip in for that media attention.

We really need to capitalise on this given the opportunity and the potential of this story and get more science journalists involved in looking into it.

I see that Sonia Poulton (good UK journalist aware of ME issues) has not not tweeted about it, perhaps she is not aware. She would proably write something about it. Anyone on twitter who can tweet her?
 
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