SOC
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TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
- Thread starter Daisymay
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adreno
PR activist
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Probably part of the brainwashing technique.
SOC
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Oh, please!
That's just outright delusional. Even if it was decent research, which it most definitely is not, describing it as among the top research studies of all time is absurd. "Elegant"? "Beautiful"? Seriously?? And people take this guy seriously when he makes statements like that? Aren't other researchers who have done elegant and definitive research offended by his cavalier claims of superiority?
Kati
Patient in training
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New tweet worthy of mention:
Gus (@augustine_ryan) tweeted at 10:18am - 23 Oct 15:
Has The Lancet called in the police over Tuller yet? What about a Wessely-style 'panic button'? (https://twitter.com/augustine_ryan/status/657607122352525312?s=17)
Gus (@augustine_ryan) tweeted at 10:18am - 23 Oct 15:
Has The Lancet called in the police over Tuller yet? What about a Wessely-style 'panic button'? (https://twitter.com/augustine_ryan/status/657607122352525312?s=17)
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Oh Dear. Is David Tuller harassing 'scientists'? Are Profs Wessely White Sharpe and Chalder planning to leave the country to seek safety in a war zone to avoid the PACE Trial exposee 'terror'?
Oh Dear. Is David Tuller harassing 'scientists'? Are Profs Wessely White Sharpe and Chalder planning to leave the country to seek safety in a war zone to avoid the PACE Trial exposee 'terror'?
Tom Kindlon
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(Norwegian piece on the PACE Trial and David Tuller's reports on it)
Dr Seema Yasmin (UK Cambridge medical graduate who happens to be a Professor at University of Texas and CNN Medical Analyst) has tweeted about PACE trial fraud.
Thank you and Congratulations Dr Yasmin for being the first UK doctor to publicly shame the PACE Trial!!!!
https://twitter.com/DoctorYasmin/status/657660921041448960
"What a sham. How long for @TheLancet to retract this deeply flawed study? #PACEtrial "
Wow she has an amazing CV and the guts to publicly come out and speak her mind. And did I say that she happens to have been an undergraduate at............. Queen Mary Univ of London.
http://www.seemayasmin.com/
When are the other UK doctors going to follow this brave young doctor's example and stand up for patients and science?
Thank you and Congratulations Dr Yasmin for being the first UK doctor to publicly shame the PACE Trial!!!!
https://twitter.com/DoctorYasmin/status/657660921041448960
"What a sham. How long for @TheLancet to retract this deeply flawed study? #PACEtrial "
Wow she has an amazing CV and the guts to publicly come out and speak her mind. And did I say that she happens to have been an undergraduate at............. Queen Mary Univ of London.
http://www.seemayasmin.com/
When are the other UK doctors going to follow this brave young doctor's example and stand up for patients and science?
searcher
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Hi all-
I wanted to let everyone that all of us at #MEAction are working on a petition to demand that the Lancet retract the papers based on the PACE trial and that NICE guidelines be updated to removed any recommendations based on the irreparably faulty study. We hope to get this up in the next few days, and will work with knowledgeable patients and supporters in the UK and elsewhere to make sure that we get the language right.
I wanted to let everyone that all of us at #MEAction are working on a petition to demand that the Lancet retract the papers based on the PACE trial and that NICE guidelines be updated to removed any recommendations based on the irreparably faulty study. We hope to get this up in the next few days, and will work with knowledgeable patients and supporters in the UK and elsewhere to make sure that we get the language right.
Thank you for your work.
The NICE guidelines need attention badly.
Are you including the Cohrane review, too?
Also I think the P2P report still grades PACE as good quality evidence (it sounds almost like this was mostly because if they excluded it, they would have no evidence for their main points of CBT/GET, but, well, maybe they were given the wrong mandate!).
Research 1st
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Exactly, and in addition Esther, (as Part 3 of Tuller's article explains) in White's view, why CFS patients should be grateful for PACE and should stop wrecking Science.
searcher
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Thanks. We will definitely include the Cochrane review as well. We are trying to decide if there should be three petitions-- one focused solely on a retraction by the Lancet, one focused on the UK guidelines, and one on the US ones, although all could be signed by people worldwide since US and UK guidelines impact everyone.
Someone (I will edit this once I confirm I can use her name) very helpfully researched how PACE has affected US guidelines. Here is some of what she found:
1) Many U.S. clinical guidelines incorporate treatment recommendations for CBT and GET and claims that poorer prognosis is associated with a belief in having an organic illness. This includes CDC's 2012 CME for diagnosis and management which references PACE. Others use PACE or other Oxford studies
Another example - In its article announcing the 2015 IOM report, the American Academy of Family Physicians provides a link for more information to an article by Yancey that recommends CBT and GET states that poorer prognosis is associated with “poor social adjustment, a strong belief in an organic cause for fatigue, or some sort of sickness benefit.” Yancey references PACE.
2) The 2014 AHRQ Evidence Review recommended CBT and GET as treatments based on large part on Oxford studies including PACE. The AHRQ Evidence Review ranked the PACE trial as a "good" study.
AHRQ acknowledged that Oxford included patients who do not have the disease but recommended including Oxford studies anyway because not including them would "limit the evidence" available for review but continued to support treatment recommendations based on Oxford definitions because they “may give us some clue as to where to go with things.”
3) UpToDate (updated since the IOM) refers to the disease as “CFS/SEID,” recommends the IOM criteria for diagnosis but then characterizes immune changes as minor or not different from controls, recommends CBT and GET based on PACE an the 2014 AHRQ Evidence Review, and states that a poorer prognosis may be related to a belief that the disease has an organic cause. This report is behind a paywall.
4) A 2015 Medscape article, entitled “Management of SEID,” referenced the PACE trial and recommended CBT and graded exercise.
SOC
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When, like Dr Yasmin, they can live and practice outside the UK...?
Not to downplay Dr Charles Shepherd and Dr Jonathan Edwards contributions to this debate - Thank you both. What I should have said is first UK educated British doctor (albeit living in the US of A) outside the ME field to comment. Maybe that is why she is able to as she is not in the NHS.
Research 1st
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Thank you, what a good idea and I hope it is successful. However, you may remember many moons ago in 2004 I think, a petition (RIME) of over 12,000 signatures was handed in to the UK Houses of Parliament calling for the withdrawal of the Royal Colleges report on CFS in the UK to the houses of Parliament.
Source: http://web.onetel.com/~kickback/rime response to mrc draft document.html
http://www.meactionuk.org.uk/RiME_Petition_II_Update.htm
So if this was dismissed with arrogant aplomb, you'd need to get the world to sign it (via forums and social media), say, millions of signatures and then alert the media in something akin to a 'million man march', for scientific and academic integrity.
The powerful psychiatrists are 40 years behind the science knowledge, but thus serve a purpose for the state to hold back the scientific discovery of pathogens caused by censored. Due to this, Mind-Body theory of Fatigue (subjective complaint) will always be the preference, when ME sufferers with the original disease Myalgic Encephalomyelitiss never complained of fatigue in the first place.
So as we live in a caustic medical plutocracy we need a back up plan.
If a NEW petition for PACE apparent medical fraud fails, advocates for scientific integrity may consider to start a gofundme
https://www.gofundme.com/
To fund a pool of cash to pay a human rights EU lawyer to take an class action law suit out against the many parties blocking public access to the raw data.
QUESTION: If the raw data is not unflattering, why are they so desperate for the public not to see the raw data, in a publically funded trial?
ANSWER: Is in the raw data.
Snowdrop
Rebel without a biscuit
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I did David Tuller journalist MEcfs PACE trial and got a top hit
Snowdrop
Rebel without a biscuit
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I think the only thing that will work is if the rest of the world at large shames the authors and politicians to the point where it's not possible to defend it to everyone so openly without being seen to be fools.
It would be great to see a lot more response from the UK but Dr's are kept in line by fear and misinformation.