#wessely — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #wessely, aggregated by home.social.
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Some Thoughts on Ten Years of Trial By Error
By David Tuller, DrPH
Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging at times, but always fascinating, rewarding and engaging, both intellectually and personally.
I have learned so much, have heard so many heartbreaking stories, and have met–whether in person or online—so many smart, funny, passionate and courageous people. I have also been deeply disturbed by the rampant and flagrant corruption in the editorial and peer-review practices of major medical journals, including those in the Lancet and BMJ stables. Not only have these august publications routinely failed to catch egregious methodological missteps, they have also routinely failed to take appropriate steps to fix problems once they’ve been pointed out. In many instances, their response to legitimate criticism can only be described as a blatant “fuck you.”
Back when, I never aspired to be the “chronic fatigue syndrome reporter” (or the “myalgic encephalomyelitis reporter”). I mean, who would have? But that’s what happened, and I am grateful that it did. Although I didn’t plan on spending an entire decade—basically, my 60s—on this project, it is hard now for me to imagine a more fulfilling or better use of my time.
The Lancet published the initial PACE results in 2011. Four years later, my initial PACE investigation appeared over the course of three days on Virology Blog, a popular science site hosted by my friend and colleague Vincent Racaniello, a microbiology professor at Columbia University. Given the length, the series was likely, for many patients, impossible to read without triggering major bouts of post-exertional malaise (PEM).
(As always, I need to point out that patients were aware of the trial’s fatal flaws long before I got involved; my work piggy-backed on their incisive and spot-on analyses of the research. I obviously owe enormous thanks to Professor Racaniello for supporting my project and allowing me to regularly hijack his site to disseminate my findings. I’m also grateful to Valerie Eliot Smith, a lawyer and longtime patient, and her husband, Robin Callendar; in addition to offering invaluable advice on legal matters, they suggested the name Trial By Error, which has stood the test of time.)
The publication of Trial By Error was very timely. A week later, Lancet Psychiatry published the PACE trial’s unimpressive long-term follow-up results, assessed on average 2.5 years after participants entered the trial. for the PACE trial. (The initial results were from the 12-month assessments.) This publication was another anti-scientific production from the high-powered triumvirate of lead authors—psychiatrists Michael Sharpe and Peter White, professors at, respectively, Oxford University and Queen Mary University of London, and Trudie Chalder, King’s College London’s factually and mathematically challenged professor of cognitive behavior therapy.
What was wrong with the follow-up study? Plenty. The authors chose not to focus on differences in long-term outcomes between the GET and CBT intervention groups and the comparison groups, since there were no such differences. Instead, they highlighted as their main finding that the intervention groups had maintained the (very modest) improvements claimed in the initial trial publication in The Lancet.
The fact that in the end the GET and CBT treatments provided no apparent advantage was relegated to a side-point—even though the results of interest in any clinical trial, even in follow-up, are the between-group differences, not whether the active intervention groups maintained their gains. In other words, presenting the follow-up findings as if they demonstrated the purported superiority of CBT and GET was a flagrant violation of scientific standards. It also represented a stark failure of the journal’s peer-review practices.
However, because Trial By Error had appeared the week before, some high-profile publications–such as Science (“Criticism mounts of a long-controversial chronic fatigue [syndrome] study”) and The Guardian (“Chronic fatigue [syndrome] patients criticise study that says exercise can help”)–reported on the Lancet Psychiatry paper and my expose in the same article. When these more balanced and nuanced media accounts appeared, it gave me great pleasure to imagine the dismay and shock they must have triggered in the three prominent academics in charge of PACE.
After all, these privileged and self-important investigators were used to glowing coverage of their work. From my perspective, some of this unwarranted praise could only be attributed to the British tradition of deference to authority—in this case, those who had risen to the level of. “professor.” In American English, “professor” is often used generically to designate anyone teaching students above the high school level. At Berkeley, for example, my students would routinely refer to me as their professor, even though I was officially a “lecturer.”
In the UK, it seemed to me, anyone anointed with an official professorship commanded unquestioning respect—whether deserved or not. In the case of the PACE authors and their colleagues, such respect was clearly not justified. Even so, patients challenging the study findings, no matter how cogent and accurate their arguments, were routinely portrayed as twisted and dangerous terrorists bent on tearing down the august domain of Science. In reality, the PACE authors and their ilk were the deluded batch, promoting bogus recommendations that posed enormous potential harm to patients, given the risk of prolonged bouts of PEM.
That an academic from a world-class research institution in the United States would call the trial “a piece of crap” and publicly rip a print-out of the trial to shreds was apparently outside these professors’ range of experiences and expectations. After the initial publication, QMUL declared that my work was triggering “internet abuse” and “reputational damage”—language that I interpreted as legal threats. Of course, I wasn’t sued then and I haven’t been since, even though British libel laws are far more biased toward the plaintiffs than in the U.S.
**********
Over the years, the PACE authors and their colleagues have made fools of themselves in trying to defend the indefensible. I could fill a book with tales of their stupidity and arrogance, but will just recount a couple of examples here.
Not long after the publication of Trial By Error, Professor Sir Simon Wessely, who had a major role in PACE although was not a listed author, immediately sought to support his colleagues with a misguided essay in The Mental Elf, a prominent site covering mental health issues. In the essay, called “The PACE Trial for Chronic Fatigue Syndrome: choppy seas but a prosperous voyage,” Professor Sir Simon compared the study to an ocean liner that sets out from Southampton to New York. After a few mid-course “corrections,” he noted, the “HMS PACE” arrived at last at its intended destination.
(The essay did not mention me or Trial By Error, although the post was clearly an effort to debunk what I had exposed.)
This was an idiotic and ill-advised analogy. Apart from calling to mind the Titanic, it represented a fundamental misunderstanding of the point of clinical trials—this from someone who fancied himself an expert in research methodology. As my friend and colleague Steve Lubet, a law professor at Northwestern University in Chicago (now emeritus), wrote in an open letter to Professor Sir Simon posted as a blog:
“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.…”
Oops. Busted! In his response to Professor Lubet’s blog post, Professor Sir Simon dribbled out some drivel and nonsense, but the damage was done.
For his part, the hapless Professor Sharpe also tried to challenge Trial By Error’s reporting—to little avail. One of my sources, Columbia University’s biostats professor Bruce Levin, had referred to some of the PACE trial’s methodological missteps as “the height of clinical trial amateurism”—a potent phrase that made me laugh. Poor Professor Sharpe apparently took umbrage—and months after Trial By Error appeared, he e-mailed Professor Levin to ask whether he’d actually described the research in this manner.
Professor Levin informed him that, yes, he did indeed say what I’d quoted him as saying, and he shared with Professor Sharpe some of the other sharp criticisms he’d made as well. After Professor Levin informed me of their exchange, I e-mailed Professor Sharpe and offered to provide him with contact information for the other academic experts I had quoted. Perhaps, I suggested, he might want to vet all of their quotes in the story and assure himself that they all genuinely viewed his beloved trial as bullshit. Professor Sharpe declined my offer.
That was all quite a while ago now. To the discredit of The Lancet, PACE has not been retracted. It has, however, been discredited—and good riddance. Since those early years, the PACE authors and their colleagues have exhibited increasing desperation to protect their intellectual and academic turf. They continue to pretend their research has been robust and meaningful, and view all their critics as losers, creeps or charlatans. (I think they place me in the latter category, or perhaps even all three.)
Whatever. These academics are classic examples of what are known, in literature, as “unreliable narrators.” Nothing they say or write can be taken at face value. Everything must be presumed to be geared toward protecting their inflated reputations and their privileged status. However, they have lost control of the narrative. They know that, and they are scared. They continue to bleat in protest, but their three-decade hegemonic reign in this domain is over. The world is moving on—yet they refuse to budge.
.
-
Some Thoughts on Ten Years of Trial By Error
By David Tuller, DrPH
Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging at times, but always fascinating, rewarding and engaging, both intellectually and personally.
I have learned so much, have heard so many heartbreaking stories, and have met–whether in person or online—so many smart, funny, passionate and courageous people. I have also been deeply disturbed by the rampant and flagrant corruption in the editorial and peer-review practices of major medical journals, including those in the Lancet and BMJ stables. Not only have these august publications routinely failed to catch egregious methodological missteps, they have also routinely failed to take appropriate steps to fix problems once they’ve been pointed out. In many instances, their response to legitimate criticism can only be described as a blatant “fuck you.”
Back when, I never aspired to be the “chronic fatigue syndrome reporter” (or the “myalgic encephalomyelitis reporter”). I mean, who would have? But that’s what happened, and I am grateful that it did. Although I didn’t plan on spending an entire decade—basically, my 60s—on this project, it is hard now for me to imagine a more fulfilling or better use of my time.
The Lancet published the initial PACE results in 2011. Four years later, my initial PACE investigation appeared over the course of three days on Virology Blog, a popular science site hosted by my friend and colleague Vincent Racaniello, a microbiology professor at Columbia University. Given the length, the series was likely, for many patients, impossible to read without triggering major bouts of post-exertional malaise (PEM).
(As always, I need to point out that patients were aware of the trial’s fatal flaws long before I got involved; my work piggy-backed on their incisive and spot-on analyses of the research. I obviously owe enormous thanks to Professor Racaniello for supporting my project and allowing me to regularly hijack his site to disseminate my findings. I’m also grateful to Valerie Eliot Smith, a lawyer and longtime patient, and her husband, Robin Callendar; in addition to offering invaluable advice on legal matters, they suggested the name Trial By Error, which has stood the test of time.)
The publication of Trial By Error was very timely. A week later, Lancet Psychiatry published the PACE trial’s unimpressive long-term follow-up results, assessed on average 2.5 years after participants entered the trial. for the PACE trial. (The initial results were from the 12-month assessments.) This publication was another anti-scientific production from the high-powered triumvirate of lead authors—psychiatrists Michael Sharpe and Peter White, professors at, respectively, Oxford University and Queen Mary University of London, and Trudie Chalder, King’s College London’s factually and mathematically challenged professor of cognitive behavior therapy.
What was wrong with the follow-up study? Plenty. The authors chose not to focus on differences in long-term outcomes between the GET and CBT intervention groups and the comparison groups, since there were no such differences. Instead, they highlighted as their main finding that the intervention groups had maintained the (very modest) improvements claimed in the initial trial publication in The Lancet.
The fact that in the end the GET and CBT treatments provided no apparent advantage was relegated to a side-point—even though the results of interest in any clinical trial, even in follow-up, are the between-group differences, not whether the active intervention groups maintained their gains. In other words, presenting the follow-up findings as if they demonstrated the purported superiority of CBT and GET was a flagrant violation of scientific standards. It also represented a stark failure of the journal’s peer-review practices.
However, because Trial By Error had appeared the week before, some high-profile publications–such as Science (“Criticism mounts of a long-controversial chronic fatigue [syndrome] study”) and The Guardian (“Chronic fatigue [syndrome] patients criticise study that says exercise can help”)–reported on the Lancet Psychiatry paper and my expose in the same article. When these more balanced and nuanced media accounts appeared, it gave me great pleasure to imagine the dismay and shock they must have triggered in the three prominent academics in charge of PACE.
After all, these privileged and self-important investigators were used to glowing coverage of their work. From my perspective, some of this unwarranted praise could only be attributed to the British tradition of deference to authority—in this case, those who had risen to the level of. “professor.” In American English, “professor” is often used generically to designate anyone teaching students above the high school level. At Berkeley, for example, my students would routinely refer to me as their professor, even though I was officially a “lecturer.”
In the UK, it seemed to me, anyone anointed with an official professorship commanded unquestioning respect—whether deserved or not. In the case of the PACE authors and their colleagues, such respect was clearly not justified. Even so, patients challenging the study findings, no matter how cogent and accurate their arguments, were routinely portrayed as twisted and dangerous terrorists bent on tearing down the august domain of Science. In reality, the PACE authors and their ilk were the deluded batch, promoting bogus recommendations that posed enormous potential harm to patients, given the risk of prolonged bouts of PEM.
That an academic from a world-class research institution in the United States would call the trial “a piece of crap” and publicly rip a print-out of the trial to shreds was apparently outside these professors’ range of experiences and expectations. After the initial publication, QMUL declared that my work was triggering “internet abuse” and “reputational damage”—language that I interpreted as legal threats. Of course, I wasn’t sued then and I haven’t been since, even though British libel laws are far more biased toward the plaintiffs than in the U.S.
**********
Over the years, the PACE authors and their colleagues have made fools of themselves in trying to defend the indefensible. I could fill a book with tales of their stupidity and arrogance, but will just recount a couple of examples here.
Not long after the publication of Trial By Error, Professor Sir Simon Wessely, who had a major role in PACE although was not a listed author, immediately sought to support his colleagues with a misguided essay in The Mental Elf, a prominent site covering mental health issues. In the essay, called “The PACE Trial for Chronic Fatigue Syndrome: choppy seas but a prosperous voyage,” Professor Sir Simon compared the study to an ocean liner that sets out from Southampton to New York. After a few mid-course “corrections,” he noted, the “HMS PACE” arrived at last at its intended destination.
(The essay did not mention me or Trial By Error, although the post was clearly an effort to debunk what I had exposed.)
This was an idiotic and ill-advised analogy. Apart from calling to mind the Titanic, it represented a fundamental misunderstanding of the point of clinical trials—this from someone who fancied himself an expert in research methodology. As my friend and colleague Steve Lubet, a law professor at Northwestern University in Chicago (now emeritus), wrote in an open letter to Professor Sir Simon posted as a blog:
“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.…”
Oops. Busted! In his response to Professor Lubet’s blog post, Professor Sir Simon dribbled out some drivel and nonsense, but the damage was done.
For his part, the hapless Professor Sharpe also tried to challenge Trial By Error’s reporting—to little avail. One of my sources, Columbia University’s biostats professor Bruce Levin, had referred to some of the PACE trial’s methodological missteps as “the height of clinical trial amateurism”—a potent phrase that made me laugh. Poor Professor Sharpe apparently took umbrage—and months after Trial By Error appeared, he e-mailed Professor Levin to ask whether he’d actually described the research in this manner.
Professor Levin informed him that, yes, he did indeed say what I’d quoted him as saying, and he shared with Professor Sharpe some of the other sharp criticisms he’d made as well. After Professor Levin informed me of their exchange, I e-mailed Professor Sharpe and offered to provide him with contact information for the other academic experts I had quoted. Perhaps, I suggested, he might want to vet all of their quotes in the story and assure himself that they all genuinely viewed his beloved trial as bullshit. Professor Sharpe declined my offer.
That was all quite a while ago now. To the discredit of The Lancet, PACE has not been retracted. It has, however, been discredited—and good riddance. Since those early years, the PACE authors and their colleagues have exhibited increasing desperation to protect their intellectual and academic turf. They continue to pretend their research has been robust and meaningful, and view all their critics as losers, creeps or charlatans. (I think they place me in the latter category, or perhaps even all three.)
Whatever. These academics are classic examples of what are known, in literature, as “unreliable narrators.” Nothing they say or write can be taken at face value. Everything must be presumed to be geared toward protecting their inflated reputations and their privileged status. However, they have lost control of the narrative. They know that, and they are scared. They continue to bleat in protest, but their three-decade hegemonic reign in this domain is over. The world is moving on—yet they refuse to budge.
.
-
Some Thoughts on Ten Years of Trial By Error
By David Tuller, DrPH
Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging at times, but always fascinating, rewarding and engaging, both intellectually and personally.
I have learned so much, have heard so many heartbreaking stories, and have met–whether in person or online—so many smart, funny, passionate and courageous people. I have also been deeply disturbed by the rampant and flagrant corruption in the editorial and peer-review practices of major medical journals, including those in the Lancet and BMJ stables. Not only have these august publications routinely failed to catch egregious methodological missteps, they have also routinely failed to take appropriate steps to fix problems once they’ve been pointed out. In many instances, their response to legitimate criticism can only be described as a blatant “fuck you.”
Back when, I never aspired to be the “chronic fatigue syndrome reporter” (or the “myalgic encephalomyelitis reporter”). I mean, who would have? But that’s what happened, and I am grateful that it did. Although I didn’t plan on spending an entire decade—basically, my 60s—on this project, it is hard now for me to imagine a more fulfilling or better use of my time.
The Lancet published the initial PACE results in 2011. Four years later, my initial PACE investigation appeared over the course of three days on Virology Blog, a popular science site hosted by my friend and colleague Vincent Racaniello, a microbiology professor at Columbia University. Given the length, the series was likely, for many patients, impossible to read without triggering major bouts of post-exertional malaise (PEM).
(As always, I need to point out that patients were aware of the trial’s fatal flaws long before I got involved; my work piggy-backed on their incisive and spot-on analyses of the research. I obviously owe enormous thanks to Professor Racaniello for supporting my project and allowing me to regularly hijack his site to disseminate my findings. I’m also grateful to Valerie Eliot Smith, a lawyer and longtime patient, and her husband, Robin Callendar; in addition to offering invaluable advice on legal matters, they suggested the name Trial By Error, which has stood the test of time.)
The publication of Trial By Error was very timely. A week later, Lancet Psychiatry published the PACE trial’s unimpressive long-term follow-up results, assessed on average 2.5 years after participants entered the trial. for the PACE trial. (The initial results were from the 12-month assessments.) This publication was another anti-scientific production from the high-powered triumvirate of lead authors—psychiatrists Michael Sharpe and Peter White, professors at, respectively, Oxford University and Queen Mary University of London, and Trudie Chalder, King’s College London’s factually and mathematically challenged professor of cognitive behavior therapy.
What was wrong with the follow-up study? Plenty. The authors chose not to focus on differences in long-term outcomes between the GET and CBT intervention groups and the comparison groups, since there were no such differences. Instead, they highlighted as their main finding that the intervention groups had maintained the (very modest) improvements claimed in the initial trial publication in The Lancet.
The fact that in the end the GET and CBT treatments provided no apparent advantage was relegated to a side-point—even though the results of interest in any clinical trial, even in follow-up, are the between-group differences, not whether the active intervention groups maintained their gains. In other words, presenting the follow-up findings as if they demonstrated the purported superiority of CBT and GET was a flagrant violation of scientific standards. It also represented a stark failure of the journal’s peer-review practices.
However, because Trial By Error had appeared the week before, some high-profile publications–such as Science (“Criticism mounts of a long-controversial chronic fatigue [syndrome] study”) and The Guardian (“Chronic fatigue [syndrome] patients criticise study that says exercise can help”)–reported on the Lancet Psychiatry paper and my expose in the same article. When these more balanced and nuanced media accounts appeared, it gave me great pleasure to imagine the dismay and shock they must have triggered in the three prominent academics in charge of PACE.
After all, these privileged and self-important investigators were used to glowing coverage of their work. From my perspective, some of this unwarranted praise could only be attributed to the British tradition of deference to authority—in this case, those who had risen to the level of. “professor.” In American English, “professor” is often used generically to designate anyone teaching students above the high school level. At Berkeley, for example, my students would routinely refer to me as their professor, even though I was officially a “lecturer.”
In the UK, it seemed to me, anyone anointed with an official professorship commanded unquestioning respect—whether deserved or not. In the case of the PACE authors and their colleagues, such respect was clearly not justified. Even so, patients challenging the study findings, no matter how cogent and accurate their arguments, were routinely portrayed as twisted and dangerous terrorists bent on tearing down the august domain of Science. In reality, the PACE authors and their ilk were the deluded batch, promoting bogus recommendations that posed enormous potential harm to patients, given the risk of prolonged bouts of PEM.
That an academic from a world-class research institution in the United States would call the trial “a piece of crap” and publicly rip a print-out of the trial to shreds was apparently outside these professors’ range of experiences and expectations. After the initial publication, QMUL declared that my work was triggering “internet abuse” and “reputational damage”—language that I interpreted as legal threats. Of course, I wasn’t sued then and I haven’t been since, even though British libel laws are far more biased toward the plaintiffs than in the U.S.
**********
Over the years, the PACE authors and their colleagues have made fools of themselves in trying to defend the indefensible. I could fill a book with tales of their stupidity and arrogance, but will just recount a couple of examples here.
Not long after the publication of Trial By Error, Professor Sir Simon Wessely, who had a major role in PACE although was not a listed author, immediately sought to support his colleagues with a misguided essay in The Mental Elf, a prominent site covering mental health issues. In the essay, called “The PACE Trial for Chronic Fatigue Syndrome: choppy seas but a prosperous voyage,” Professor Sir Simon compared the study to an ocean liner that sets out from Southampton to New York. After a few mid-course “corrections,” he noted, the “HMS PACE” arrived at last at its intended destination.
(The essay did not mention me or Trial By Error, although the post was clearly an effort to debunk what I had exposed.)
This was an idiotic and ill-advised analogy. Apart from calling to mind the Titanic, it represented a fundamental misunderstanding of the point of clinical trials—this from someone who fancied himself an expert in research methodology. As my friend and colleague Steve Lubet, a law professor at Northwestern University in Chicago (now emeritus), wrote in an open letter to Professor Sir Simon posted as a blog:
“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.…”
Oops. Busted! In his response to Professor Lubet’s blog post, Professor Sir Simon dribbled out some drivel and nonsense, but the damage was done.
For his part, the hapless Professor Sharpe also tried to challenge Trial By Error’s reporting—to little avail. One of my sources, Columbia University’s biostats professor Bruce Levin, had referred to some of the PACE trial’s methodological missteps as “the height of clinical trial amateurism”—a potent phrase that made me laugh. Poor Professor Sharpe apparently took umbrage—and months after Trial By Error appeared, he e-mailed Professor Levin to ask whether he’d actually described the research in this manner.
Professor Levin informed him that, yes, he did indeed say what I’d quoted him as saying, and he shared with Professor Sharpe some of the other sharp criticisms he’d made as well. After Professor Levin informed me of their exchange, I e-mailed Professor Sharpe and offered to provide him with contact information for the other academic experts I had quoted. Perhaps, I suggested, he might want to vet all of their quotes in the story and assure himself that they all genuinely viewed his beloved trial as bullshit. Professor Sharpe declined my offer.
That was all quite a while ago now. To the discredit of The Lancet, PACE has not been retracted. It has, however, been discredited—and good riddance. Since those early years, the PACE authors and their colleagues have exhibited increasing desperation to protect their intellectual and academic turf. They continue to pretend their research has been robust and meaningful, and view all their critics as losers, creeps or charlatans. (I think they place me in the latter category, or perhaps even all three.)
Whatever. These academics are classic examples of what are known, in literature, as “unreliable narrators.” Nothing they say or write can be taken at face value. Everything must be presumed to be geared toward protecting their inflated reputations and their privileged status. However, they have lost control of the narrative. They know that, and they are scared. They continue to bleat in protest, but their three-decade hegemonic reign in this domain is over. The world is moving on—yet they refuse to budge.
.
-
Some Thoughts on Ten Years of Trial By Error
By David Tuller, DrPH
Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging at times, but always fascinating, rewarding and engaging, both intellectually and personally.
I have learned so much, have heard so many heartbreaking stories, and have met–whether in person or online—so many smart, funny, passionate and courageous people. I have also been deeply disturbed by the rampant and flagrant corruption in the editorial and peer-review practices of major medical journals, including those in the Lancet and BMJ stables. Not only have these august publications routinely failed to catch egregious methodological missteps, they have also routinely failed to take appropriate steps to fix problems once they’ve been pointed out. In many instances, their response to legitimate criticism can only be described as a blatant “fuck you.”
Back when, I never aspired to be the “chronic fatigue syndrome reporter” (or the “myalgic encephalomyelitis reporter”). I mean, who would have? But that’s what happened, and I am grateful that it did. Although I didn’t plan on spending an entire decade—basically, my 60s—on this project, it is hard now for me to imagine a more fulfilling or better use of my time.
The Lancet published the initial PACE results in 2011. Four years later, my initial PACE investigation appeared over the course of three days on Virology Blog, a popular science site hosted by my friend and colleague Vincent Racaniello, a microbiology professor at Columbia University. Given the length, the series was likely, for many patients, impossible to read without triggering major bouts of post-exertional malaise (PEM).
(As always, I need to point out that patients were aware of the trial’s fatal flaws long before I got involved; my work piggy-backed on their incisive and spot-on analyses of the research. I obviously owe enormous thanks to Professor Racaniello for supporting my project and allowing me to regularly hijack his site to disseminate my findings. I’m also grateful to Valerie Eliot Smith, a lawyer and longtime patient, and her husband, Robin Callendar; in addition to offering invaluable advice on legal matters, they suggested the name Trial By Error, which has stood the test of time.)
The publication of Trial By Error was very timely. A week later, Lancet Psychiatry published the PACE trial’s unimpressive long-term follow-up results, assessed on average 2.5 years after participants entered the trial. for the PACE trial. (The initial results were from the 12-month assessments.) This publication was another anti-scientific production from the high-powered triumvirate of lead authors—psychiatrists Michael Sharpe and Peter White, professors at, respectively, Oxford University and Queen Mary University of London, and Trudie Chalder, King’s College London’s factually and mathematically challenged professor of cognitive behavior therapy.
What was wrong with the follow-up study? Plenty. The authors chose not to focus on differences in long-term outcomes between the GET and CBT intervention groups and the comparison groups, since there were no such differences. Instead, they highlighted as their main finding that the intervention groups had maintained the (very modest) improvements claimed in the initial trial publication in The Lancet.
The fact that in the end the GET and CBT treatments provided no apparent advantage was relegated to a side-point—even though the results of interest in any clinical trial, even in follow-up, are the between-group differences, not whether the active intervention groups maintained their gains. In other words, presenting the follow-up findings as if they demonstrated the purported superiority of CBT and GET was a flagrant violation of scientific standards. It also represented a stark failure of the journal’s peer-review practices.
However, because Trial By Error had appeared the week before, some high-profile publications–such as Science (“Criticism mounts of a long-controversial chronic fatigue [syndrome] study”) and The Guardian (“Chronic fatigue [syndrome] patients criticise study that says exercise can help”)–reported on the Lancet Psychiatry paper and my expose in the same article. When these more balanced and nuanced media accounts appeared, it gave me great pleasure to imagine the dismay and shock they must have triggered in the three prominent academics in charge of PACE.
After all, these privileged and self-important investigators were used to glowing coverage of their work. From my perspective, some of this unwarranted praise could only be attributed to the British tradition of deference to authority—in this case, those who had risen to the level of. “professor.” In American English, “professor” is often used generically to designate anyone teaching students above the high school level. At Berkeley, for example, my students would routinely refer to me as their professor, even though I was officially a “lecturer.”
In the UK, it seemed to me, anyone anointed with an official professorship commanded unquestioning respect—whether deserved or not. In the case of the PACE authors and their colleagues, such respect was clearly not justified. Even so, patients challenging the study findings, no matter how cogent and accurate their arguments, were routinely portrayed as twisted and dangerous terrorists bent on tearing down the august domain of Science. In reality, the PACE authors and their ilk were the deluded batch, promoting bogus recommendations that posed enormous potential harm to patients, given the risk of prolonged bouts of PEM.
That an academic from a world-class research institution in the United States would call the trial “a piece of crap” and publicly rip a print-out of the trial to shreds was apparently outside these professors’ range of experiences and expectations. After the initial publication, QMUL declared that my work was triggering “internet abuse” and “reputational damage”—language that I interpreted as legal threats. Of course, I wasn’t sued then and I haven’t been since, even though British libel laws are far more biased toward the plaintiffs than in the U.S.
**********
Over the years, the PACE authors and their colleagues have made fools of themselves in trying to defend the indefensible. I could fill a book with tales of their stupidity and arrogance, but will just recount a couple of examples here.
Not long after the publication of Trial By Error, Professor Sir Simon Wessely, who had a major role in PACE although was not a listed author, immediately sought to support his colleagues with a misguided essay in The Mental Elf, a prominent site covering mental health issues. In the essay, called “The PACE Trial for Chronic Fatigue Syndrome: choppy seas but a prosperous voyage,” Professor Sir Simon compared the study to an ocean liner that sets out from Southampton to New York. After a few mid-course “corrections,” he noted, the “HMS PACE” arrived at last at its intended destination.
(The essay did not mention me or Trial By Error, although the post was clearly an effort to debunk what I had exposed.)
This was an idiotic and ill-advised analogy. Apart from calling to mind the Titanic, it represented a fundamental misunderstanding of the point of clinical trials—this from someone who fancied himself an expert in research methodology. As my friend and colleague Steve Lubet, a law professor at Northwestern University in Chicago (now emeritus), wrote in an open letter to Professor Sir Simon posted as a blog:
“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.…”
Oops. Busted! In his response to Professor Lubet’s blog post, Professor Sir Simon dribbled out some drivel and nonsense, but the damage was done.
For his part, the hapless Professor Sharpe also tried to challenge Trial By Error’s reporting—to little avail. One of my sources, Columbia University’s biostats professor Bruce Levin, had referred to some of the PACE trial’s methodological missteps as “the height of clinical trial amateurism”—a potent phrase that made me laugh. Poor Professor Sharpe apparently took umbrage—and months after Trial By Error appeared, he e-mailed Professor Levin to ask whether he’d actually described the research in this manner.
Professor Levin informed him that, yes, he did indeed say what I’d quoted him as saying, and he shared with Professor Sharpe some of the other sharp criticisms he’d made as well. After Professor Levin informed me of their exchange, I e-mailed Professor Sharpe and offered to provide him with contact information for the other academic experts I had quoted. Perhaps, I suggested, he might want to vet all of their quotes in the story and assure himself that they all genuinely viewed his beloved trial as bullshit. Professor Sharpe declined my offer.
That was all quite a while ago now. To the discredit of The Lancet, PACE has not been retracted. It has, however, been discredited—and good riddance. Since those early years, the PACE authors and their colleagues have exhibited increasing desperation to protect their intellectual and academic turf. They continue to pretend their research has been robust and meaningful, and view all their critics as losers, creeps or charlatans. (I think they place me in the latter category, or perhaps even all three.)
Whatever. These academics are classic examples of what are known, in literature, as “unreliable narrators.” Nothing they say or write can be taken at face value. Everything must be presumed to be geared toward protecting their inflated reputations and their privileged status. However, they have lost control of the narrative. They know that, and they are scared. They continue to bleat in protest, but their three-decade hegemonic reign in this domain is over. The world is moving on—yet they refuse to budge.
.
-
Some Thoughts on Ten Years of Trial By Error
By David Tuller, DrPH
Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the misbegotten and fraudulent PACE trial, which purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) could cure what they then called chronic fatigue syndrome. And what an amazing ride it’s been for me—difficult and challenging at times, but always fascinating, rewarding and engaging, both intellectually and personally.
I have learned so much, have heard so many heartbreaking stories, and have met–whether in person or online—so many smart, funny, passionate and courageous people. I have also been deeply disturbed by the rampant and flagrant corruption in the editorial and peer-review practices of major medical journals, including those in the Lancet and BMJ stables. Not only have these august publications routinely failed to catch egregious methodological missteps, they have also routinely failed to take appropriate steps to fix problems once they’ve been pointed out. In many instances, their response to legitimate criticism can only be described as a blatant “fuck you.”
Back when, I never aspired to be the “chronic fatigue syndrome reporter” (or the “myalgic encephalomyelitis reporter”). I mean, who would have? But that’s what happened, and I am grateful that it did. Although I didn’t plan on spending an entire decade—basically, my 60s—on this project, it is hard now for me to imagine a more fulfilling or better use of my time.
The Lancet published the initial PACE results in 2011. Four years later, my initial PACE investigation appeared over the course of three days on Virology Blog, a popular science site hosted by my friend and colleague Vincent Racaniello, a microbiology professor at Columbia University. Given the length, the series was likely, for many patients, impossible to read without triggering major bouts of post-exertional malaise (PEM).
(As always, I need to point out that patients were aware of the trial’s fatal flaws long before I got involved; my work piggy-backed on their incisive and spot-on analyses of the research. I obviously owe enormous thanks to Professor Racaniello for supporting my project and allowing me to regularly hijack his site to disseminate my findings. I’m also grateful to Valerie Eliot Smith, a lawyer and longtime patient, and her husband, Robin Callendar; in addition to offering invaluable advice on legal matters, they suggested the name Trial By Error, which has stood the test of time.)
The publication of Trial By Error was very timely. A week later, Lancet Psychiatry published the PACE trial’s unimpressive long-term follow-up results, assessed on average 2.5 years after participants entered the trial. for the PACE trial. (The initial results were from the 12-month assessments.) This publication was another anti-scientific production from the high-powered triumvirate of lead authors—psychiatrists Michael Sharpe and Peter White, professors at, respectively, Oxford University and Queen Mary University of London, and Trudie Chalder, King’s College London’s factually and mathematically challenged professor of cognitive behavior therapy.
What was wrong with the follow-up study? Plenty. The authors chose not to focus on differences in long-term outcomes between the GET and CBT intervention groups and the comparison groups, since there were no such differences. Instead, they highlighted as their main finding that the intervention groups had maintained the (very modest) improvements claimed in the initial trial publication in The Lancet.
The fact that in the end the GET and CBT treatments provided no apparent advantage was relegated to a side-point—even though the results of interest in any clinical trial, even in follow-up, are the between-group differences, not whether the active intervention groups maintained their gains. In other words, presenting the follow-up findings as if they demonstrated the purported superiority of CBT and GET was a flagrant violation of scientific standards. It also represented a stark failure of the journal’s peer-review practices.
However, because Trial By Error had appeared the week before, some high-profile publications–such as Science (“Criticism mounts of a long-controversial chronic fatigue [syndrome] study”) and The Guardian (“Chronic fatigue [syndrome] patients criticise study that says exercise can help”)–reported on the Lancet Psychiatry paper and my expose in the same article. When these more balanced and nuanced media accounts appeared, it gave me great pleasure to imagine the dismay and shock they must have triggered in the three prominent academics in charge of PACE.
After all, these privileged and self-important investigators were used to glowing coverage of their work. From my perspective, some of this unwarranted praise could only be attributed to the British tradition of deference to authority—in this case, those who had risen to the level of. “professor.” In American English, “professor” is often used generically to designate anyone teaching students above the high school level. At Berkeley, for example, my students would routinely refer to me as their professor, even though I was officially a “lecturer.”
In the UK, it seemed to me, anyone anointed with an official professorship commanded unquestioning respect—whether deserved or not. In the case of the PACE authors and their colleagues, such respect was clearly not justified. Even so, patients challenging the study findings, no matter how cogent and accurate their arguments, were routinely portrayed as twisted and dangerous terrorists bent on tearing down the august domain of Science. In reality, the PACE authors and their ilk were the deluded batch, promoting bogus recommendations that posed enormous potential harm to patients, given the risk of prolonged bouts of PEM.
That an academic from a world-class research institution in the United States would call the trial “a piece of crap” and publicly rip a print-out of the trial to shreds was apparently outside these professors’ range of experiences and expectations. After the initial publication, QMUL declared that my work was triggering “internet abuse” and “reputational damage”—language that I interpreted as legal threats. Of course, I wasn’t sued then and I haven’t been since, even though British libel laws are far more biased toward the plaintiffs than in the U.S.
**********
Over the years, the PACE authors and their colleagues have made fools of themselves in trying to defend the indefensible. I could fill a book with tales of their stupidity and arrogance, but will just recount a couple of examples here.
Not long after the publication of Trial By Error, Professor Sir Simon Wessely, who had a major role in PACE although was not a listed author, immediately sought to support his colleagues with a misguided essay in The Mental Elf, a prominent site covering mental health issues. In the essay, called “The PACE Trial for Chronic Fatigue Syndrome: choppy seas but a prosperous voyage,” Professor Sir Simon compared the study to an ocean liner that sets out from Southampton to New York. After a few mid-course “corrections,” he noted, the “HMS PACE” arrived at last at its intended destination.
(The essay did not mention me or Trial By Error, although the post was clearly an effort to debunk what I had exposed.)
This was an idiotic and ill-advised analogy. Apart from calling to mind the Titanic, it represented a fundamental misunderstanding of the point of clinical trials—this from someone who fancied himself an expert in research methodology. As my friend and colleague Steve Lubet, a law professor at Northwestern University in Chicago (now emeritus), wrote in an open letter to Professor Sir Simon posted as a blog:
“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.…”
Oops. Busted! In his response to Professor Lubet’s blog post, Professor Sir Simon dribbled out some drivel and nonsense, but the damage was done.
For his part, the hapless Professor Sharpe also tried to challenge Trial By Error’s reporting—to little avail. One of my sources, Columbia University’s biostats professor Bruce Levin, had referred to some of the PACE trial’s methodological missteps as “the height of clinical trial amateurism”—a potent phrase that made me laugh. Poor Professor Sharpe apparently took umbrage—and months after Trial By Error appeared, he e-mailed Professor Levin to ask whether he’d actually described the research in this manner.
Professor Levin informed him that, yes, he did indeed say what I’d quoted him as saying, and he shared with Professor Sharpe some of the other sharp criticisms he’d made as well. After Professor Levin informed me of their exchange, I e-mailed Professor Sharpe and offered to provide him with contact information for the other academic experts I had quoted. Perhaps, I suggested, he might want to vet all of their quotes in the story and assure himself that they all genuinely viewed his beloved trial as bullshit. Professor Sharpe declined my offer.
That was all quite a while ago now. To the discredit of The Lancet, PACE has not been retracted. It has, however, been discredited—and good riddance. Since those early years, the PACE authors and their colleagues have exhibited increasing desperation to protect their intellectual and academic turf. They continue to pretend their research has been robust and meaningful, and view all their critics as losers, creeps or charlatans. (I think they place me in the latter category, or perhaps even all three.)
Whatever. These academics are classic examples of what are known, in literature, as “unreliable narrators.” Nothing they say or write can be taken at face value. Everything must be presumed to be geared toward protecting their inflated reputations and their privileged status. However, they have lost control of the narrative. They know that, and they are scared. They continue to bleat in protest, but their three-decade hegemonic reign in this domain is over. The world is moving on—yet they refuse to budge.
.
-
“Mass Psychogenic Illness” at Heathrow Airport–NOT!
By David Tuller, DrPH
On Monday afternoon, a bunch of people in Terminal 4 at Heathrow, London’s biggest airport, reported feeling ill. The reports led to concerns about a possible toxic exposure, which triggered an evacuation and major flight delays. An initial search for dangerous substances found nothing.
On Tuesday, The Guardian ran an article under the following headline:
“‘Mass psychogenic illness’ plausible cause of toxic substance alert at Heathrow, says scientist”
And here’s the headline on the Guardian article that appeared hours later:
“Man arrested on suspicion of bringing teargas to Heathrow airport”
Ok, then. Let’s parse this.
“Mass psychogenic illness,” or sometimes “mass sociogenic illness,” is the term that has mostly replaced what was formerly called “mass hysteria.” (The diagnosis and concept of “hysteria” has fallen into disfavor as stigmatizing and misogynistic.) This incident is a classic example of how quickly those with authority will turn to psychiatric or psycho-sociological assumptions to explain unusual medical phenomena–assumptions that are often asserted as definitive rather than speculative.
Long COVID has certainly been framed in such terms, perhaps most infamously and offensively by a resident in psychiatry at Canada’s McMaster University in Canada in a 2021 opinion piece in The Wall Street Journal. (I wrote about it here and here.)
Here’s the opening of the first Guardian article:
“Police were called to Heathrow late on Monday afternoon when 21 people fell ill in Terminal 4. Initial reports suggested a hazardous material could be involved and part of the airport was evacuated. But when the emergency services conducted a thorough search, no trace of any adverse substance was found.
“A source within the Metropolitan police subsequently suggested the event could be something quite different – a case of mass hysteria. And some experts agree.
“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based,’ said Dr Robert Bartholomew, a University of Auckland sociologist who is an expert on the subject.”
**********
Professor Sir Simon Wessely weighs in
Of course, the UK’s most renowned psychiatrist, Professor Sir Simon Wessely, was also asked to weigh in. In fact, he and Dr Bartholomew co-wrote a 2018 article on this issue for the British Journal of General Psychiatry. The article was called “The protean nature of mass sociogenic illness: From possessed nuns to chemical and biological terrorism fears.” Even so, Sir Simon was more cautious in his comments to The Guardian than his colleague, although he fully endorsed the possibility.
From the Guardian article:
“Prof Sir Simon Wessely of King’s College London…said it was ‘a bit early’ to come to judgments about the Heathrow event and it was unclear whether there was an unusual odour or what investigations were done to eliminate other causes. But he added: ‘If all these come to nothing, then yes, this may be an episode of what we now call mass sociogenic illness.’
“Bartholomew stressed the illness was not a mental disorder and victims were not psychologically disturbed.
“’It is best described as a collective stress reaction that is based on a belief. We all have beliefs, therefore we are all potential victims,’ he said. ‘It is not ‘all in their heads’ in the sense that they are experiencing real symptoms.’
“Wessely added: ‘Study after study has never found anything different about those who are affected from those who aren’t. All of us can experience anxiety in certain symptoms, and all of us can mistake these physiological symptoms, which can be easily explained by basic physiology for evidence of something else – such as a chemical, toxin etc. And we know these can spread very quickly in crowded environments, usually by rumour and also line of sight.’
“Wessely said there was nothing unusual about the events at terminal 4 on Monday: ‘It happens all over the world every day, particularly in crowded spaces like schools, concerts, crowds, factory floors etc. The only reason this made the news was because of the fact it was at Heathrow and led to major flight disruptions.’
**********
After the police investigated further, The Guardian updated its coverage. Here’s an excerpt from the later Guardian article:
“Police have arrested a man on suspicion of bringing teargas into Heathrow airport, which caused Terminal 4’s check-in area to briefly shut down.
“The check-in area at the UK’s main international airport was evacuated for around three hours on Monday evening as emergency services probed a ‘potential hazardous materials incident’.
“A Metropolitan police spokesperson said a 57-year-old man had been arrested after urgent inquiries on suspicion of possession of a firearm (CS spray) and ‘causing a public nuisance’.
“After searching the area, Met officers located a canister of ‘what is believed to be CS spray’, which was ‘thought to have caused a reaction to those within the airport,’ the police said…
“A source in the Met Police initially suspected that the incident could have been a case of ‘mass hysteria’ before the canister was located, after officers scoured the area and were unable to find the source of the hazardous substance passengers had reported.”
Oops! Never mind!
-
“Mass Psychogenic Illness” at Heathrow Airport–NOT!
By David Tuller, DrPH
On Monday afternoon, a bunch of people in Terminal 4 at Heathrow, London’s biggest airport, reported feeling ill. The reports led to concerns about a possible toxic exposure, which triggered an evacuation and major flight delays. An initial search for dangerous substances found nothing.
On Tuesday, The Guardian ran an article under the following headline:
“‘Mass psychogenic illness’ plausible cause of toxic substance alert at Heathrow, says scientist”
And here’s the headline on the Guardian article that appeared hours later:
“Man arrested on suspicion of bringing teargas to Heathrow airport”
Ok, then. Let’s parse this.
“Mass psychogenic illness,” or sometimes “mass sociogenic illness,” is the term that has mostly replaced what was formerly called “mass hysteria.” (The diagnosis and concept of “hysteria” has fallen into disfavor as stigmatizing and misogynistic.) This incident is a classic example of how quickly those with authority will turn to psychiatric or psycho-sociological assumptions to explain unusual medical phenomena–assumptions that are often asserted as definitive rather than speculative.
Long COVID has certainly been framed in such terms, perhaps most infamously and offensively by a resident in psychiatry at Canada’s McMaster University in Canada in a 2021 opinion piece in The Wall Street Journal. (I wrote about it here and here.)
Here’s the opening of the first Guardian article:
“Police were called to Heathrow late on Monday afternoon when 21 people fell ill in Terminal 4. Initial reports suggested a hazardous material could be involved and part of the airport was evacuated. But when the emergency services conducted a thorough search, no trace of any adverse substance was found.
“A source within the Metropolitan police subsequently suggested the event could be something quite different – a case of mass hysteria. And some experts agree.
“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based,’ said Dr Robert Bartholomew, a University of Auckland sociologist who is an expert on the subject.”
**********
Professor Sir Simon Wessely weighs in
Of course, the UK’s most renowned psychiatrist, Professor Sir Simon Wessely, was also asked to weigh in. In fact, he and Dr Bartholomew co-wrote a 2018 article on this issue for the British Journal of General Psychiatry. The article was called “The protean nature of mass sociogenic illness: From possessed nuns to chemical and biological terrorism fears.” Even so, Sir Simon was more cautious in his comments to The Guardian than his colleague, although he fully endorsed the possibility.
From the Guardian article:
“Prof Sir Simon Wessely of King’s College London…said it was ‘a bit early’ to come to judgments about the Heathrow event and it was unclear whether there was an unusual odour or what investigations were done to eliminate other causes. But he added: ‘If all these come to nothing, then yes, this may be an episode of what we now call mass sociogenic illness.’
“Bartholomew stressed the illness was not a mental disorder and victims were not psychologically disturbed.
“’It is best described as a collective stress reaction that is based on a belief. We all have beliefs, therefore we are all potential victims,’ he said. ‘It is not ‘all in their heads’ in the sense that they are experiencing real symptoms.’
“Wessely added: ‘Study after study has never found anything different about those who are affected from those who aren’t. All of us can experience anxiety in certain symptoms, and all of us can mistake these physiological symptoms, which can be easily explained by basic physiology for evidence of something else – such as a chemical, toxin etc. And we know these can spread very quickly in crowded environments, usually by rumour and also line of sight.’
“Wessely said there was nothing unusual about the events at terminal 4 on Monday: ‘It happens all over the world every day, particularly in crowded spaces like schools, concerts, crowds, factory floors etc. The only reason this made the news was because of the fact it was at Heathrow and led to major flight disruptions.’
**********
After the police investigated further, The Guardian updated its coverage. Here’s an excerpt from the later Guardian article:
“Police have arrested a man on suspicion of bringing teargas into Heathrow airport, which caused Terminal 4’s check-in area to briefly shut down.
“The check-in area at the UK’s main international airport was evacuated for around three hours on Monday evening as emergency services probed a ‘potential hazardous materials incident’.
“A Metropolitan police spokesperson said a 57-year-old man had been arrested after urgent inquiries on suspicion of possession of a firearm (CS spray) and ‘causing a public nuisance’.
“After searching the area, Met officers located a canister of ‘what is believed to be CS spray’, which was ‘thought to have caused a reaction to those within the airport,’ the police said…
“A source in the Met Police initially suspected that the incident could have been a case of ‘mass hysteria’ before the canister was located, after officers scoured the area and were unable to find the source of the hazardous substance passengers had reported.”
Oops! Never mind!
-
“Mass Psychogenic Illness” at Heathrow Airport–NOT!
By David Tuller, DrPH
On Monday afternoon, a bunch of people in Terminal 4 at Heathrow, London’s biggest airport, reported feeling ill. The reports led to concerns about a possible toxic exposure, which triggered an evacuation and major flight delays. An initial search for dangerous substances found nothing.
On Tuesday, The Guardian ran an article under the following headline:
“‘Mass psychogenic illness’ plausible cause of toxic substance alert at Heathrow, says scientist”
And here’s the headline on the Guardian article that appeared hours later:
“Man arrested on suspicion of bringing teargas to Heathrow airport”
Ok, then. Let’s parse this.
“Mass psychogenic illness,” or sometimes “mass sociogenic illness,” is the term that has mostly replaced what was formerly called “mass hysteria.” (The diagnosis and concept of “hysteria” has fallen into disfavor as stigmatizing and misogynistic.) This incident is a classic example of how quickly those with authority will turn to psychiatric or psycho-sociological assumptions to explain unusual medical phenomena–assumptions that are often asserted as definitive rather than speculative.
Long COVID has certainly been framed in such terms, perhaps most infamously and offensively by a resident in psychiatry at Canada’s McMaster University in Canada in a 2021 opinion piece in The Wall Street Journal. (I wrote about it here and here.)
Here’s the opening of the first Guardian article:
“Police were called to Heathrow late on Monday afternoon when 21 people fell ill in Terminal 4. Initial reports suggested a hazardous material could be involved and part of the airport was evacuated. But when the emergency services conducted a thorough search, no trace of any adverse substance was found.
“A source within the Metropolitan police subsequently suggested the event could be something quite different – a case of mass hysteria. And some experts agree.
“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based,’ said Dr Robert Bartholomew, a University of Auckland sociologist who is an expert on the subject.”
**********
Professor Sir Simon Wessely weighs in
Of course, the UK’s most renowned psychiatrist, Professor Sir Simon Wessely, was also asked to weigh in. In fact, he and Dr Bartholomew co-wrote a 2018 article on this issue for the British Journal of General Psychiatry. The article was called “The protean nature of mass sociogenic illness: From possessed nuns to chemical and biological terrorism fears.” Even so, Sir Simon was more cautious in his comments to The Guardian than his colleague, although he fully endorsed the possibility.
From the Guardian article:
“Prof Sir Simon Wessely of King’s College London…said it was ‘a bit early’ to come to judgments about the Heathrow event and it was unclear whether there was an unusual odour or what investigations were done to eliminate other causes. But he added: ‘If all these come to nothing, then yes, this may be an episode of what we now call mass sociogenic illness.’
“Bartholomew stressed the illness was not a mental disorder and victims were not psychologically disturbed.
“’It is best described as a collective stress reaction that is based on a belief. We all have beliefs, therefore we are all potential victims,’ he said. ‘It is not ‘all in their heads’ in the sense that they are experiencing real symptoms.’
“Wessely added: ‘Study after study has never found anything different about those who are affected from those who aren’t. All of us can experience anxiety in certain symptoms, and all of us can mistake these physiological symptoms, which can be easily explained by basic physiology for evidence of something else – such as a chemical, toxin etc. And we know these can spread very quickly in crowded environments, usually by rumour and also line of sight.’
“Wessely said there was nothing unusual about the events at terminal 4 on Monday: ‘It happens all over the world every day, particularly in crowded spaces like schools, concerts, crowds, factory floors etc. The only reason this made the news was because of the fact it was at Heathrow and led to major flight disruptions.’
**********
After the police investigated further, The Guardian updated its coverage. Here’s an excerpt from the later Guardian article:
“Police have arrested a man on suspicion of bringing teargas into Heathrow airport, which caused Terminal 4’s check-in area to briefly shut down.
“The check-in area at the UK’s main international airport was evacuated for around three hours on Monday evening as emergency services probed a ‘potential hazardous materials incident’.
“A Metropolitan police spokesperson said a 57-year-old man had been arrested after urgent inquiries on suspicion of possession of a firearm (CS spray) and ‘causing a public nuisance’.
“After searching the area, Met officers located a canister of ‘what is believed to be CS spray’, which was ‘thought to have caused a reaction to those within the airport,’ the police said…
“A source in the Met Police initially suspected that the incident could have been a case of ‘mass hysteria’ before the canister was located, after officers scoured the area and were unable to find the source of the hazardous substance passengers had reported.”
Oops! Never mind!
-
“Mass Psychogenic Illness” at Heathrow Airport–NOT!
By David Tuller, DrPH
On Monday afternoon, a bunch of people in Terminal 4 at Heathrow, London’s biggest airport, reported feeling ill. The reports led to concerns about a possible toxic exposure, which triggered an evacuation and major flight delays. An initial search for dangerous substances found nothing.
On Tuesday, The Guardian ran an article under the following headline:
“‘Mass psychogenic illness’ plausible cause of toxic substance alert at Heathrow, says scientist”
And here’s the headline on the Guardian article that appeared hours later:
“Man arrested on suspicion of bringing teargas to Heathrow airport”
Ok, then. Let’s parse this.
“Mass psychogenic illness,” or sometimes “mass sociogenic illness,” is the term that has mostly replaced what was formerly called “mass hysteria.” (The diagnosis and concept of “hysteria” has fallen into disfavor as stigmatizing and misogynistic.) This incident is a classic example of how quickly those with authority will turn to psychiatric or psycho-sociological assumptions to explain unusual medical phenomena–assumptions that are often asserted as definitive rather than speculative.
Long COVID has certainly been framed in such terms, perhaps most infamously and offensively by a resident in psychiatry at Canada’s McMaster University in Canada in a 2021 opinion piece in The Wall Street Journal. (I wrote about it here and here.)
Here’s the opening of the first Guardian article:
“Police were called to Heathrow late on Monday afternoon when 21 people fell ill in Terminal 4. Initial reports suggested a hazardous material could be involved and part of the airport was evacuated. But when the emergency services conducted a thorough search, no trace of any adverse substance was found.
“A source within the Metropolitan police subsequently suggested the event could be something quite different – a case of mass hysteria. And some experts agree.
“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based,’ said Dr Robert Bartholomew, a University of Auckland sociologist who is an expert on the subject.”
**********
Professor Sir Simon Wessely weighs in
Of course, the UK’s most renowned psychiatrist, Professor Sir Simon Wessely, was also asked to weigh in. In fact, he and Dr Bartholomew co-wrote a 2018 article on this issue for the British Journal of General Psychiatry. The article was called “The protean nature of mass sociogenic illness: From possessed nuns to chemical and biological terrorism fears.” Even so, Sir Simon was more cautious in his comments to The Guardian than his colleague, although he fully endorsed the possibility.
From the Guardian article:
“Prof Sir Simon Wessely of King’s College London…said it was ‘a bit early’ to come to judgments about the Heathrow event and it was unclear whether there was an unusual odour or what investigations were done to eliminate other causes. But he added: ‘If all these come to nothing, then yes, this may be an episode of what we now call mass sociogenic illness.’
“Bartholomew stressed the illness was not a mental disorder and victims were not psychologically disturbed.
“’It is best described as a collective stress reaction that is based on a belief. We all have beliefs, therefore we are all potential victims,’ he said. ‘It is not ‘all in their heads’ in the sense that they are experiencing real symptoms.’
“Wessely added: ‘Study after study has never found anything different about those who are affected from those who aren’t. All of us can experience anxiety in certain symptoms, and all of us can mistake these physiological symptoms, which can be easily explained by basic physiology for evidence of something else – such as a chemical, toxin etc. And we know these can spread very quickly in crowded environments, usually by rumour and also line of sight.’
“Wessely said there was nothing unusual about the events at terminal 4 on Monday: ‘It happens all over the world every day, particularly in crowded spaces like schools, concerts, crowds, factory floors etc. The only reason this made the news was because of the fact it was at Heathrow and led to major flight disruptions.’
**********
After the police investigated further, The Guardian updated its coverage. Here’s an excerpt from the later Guardian article:
“Police have arrested a man on suspicion of bringing teargas into Heathrow airport, which caused Terminal 4’s check-in area to briefly shut down.
“The check-in area at the UK’s main international airport was evacuated for around three hours on Monday evening as emergency services probed a ‘potential hazardous materials incident’.
“A Metropolitan police spokesperson said a 57-year-old man had been arrested after urgent inquiries on suspicion of possession of a firearm (CS spray) and ‘causing a public nuisance’.
“After searching the area, Met officers located a canister of ‘what is believed to be CS spray’, which was ‘thought to have caused a reaction to those within the airport,’ the police said…
“A source in the Met Police initially suspected that the incident could have been a case of ‘mass hysteria’ before the canister was located, after officers scoured the area and were unable to find the source of the hazardous substance passengers had reported.”
Oops! Never mind!
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By David Tuller, DrPH
In a blistering take-down published on Tuesday, Guardian columnist George Monbiot indicted Professor Sir Simon Wessely, Professor Michael Sharpe and the rest of the GET/CBT ideological brigades for their decades-long promotion of discredited theories about and bogus research into the cluster of illnesses now being called ME/CFS. Those theories and research strategies reached their apotheosis, of course, in the fraudulent PACE trial.
And “fraudulent” is the right word for a study in which—unknown to readers–13% of participants had met the threshold for “recovery” on a key measure at baseline. Moreover, anyone who seriously argues that this bizarre anomaly is not fraudulent—as in deliberately deceptive–is a charlatan. (That’s not to say that PACE meets legal definitions of “fraud.” I’m not a lawyer so can’t speak to that. The trial certainly meets current definitions of research misconduct.) As I’ve said repeatedly, it’s a piece of crap.
The first sentence of Monbiot’s column calls the treatment of ME/CFS patients “the biggest medical scandal of the 21st century,” echoed the words of Carol Monaghan, a member of Parliament, about the PACE trial itself. But whether we’re talking about the trial or the overall treatment of patients, here my question about that “21st century” thing: Is it too early to call this biggest medical scandal of the millennium? Similarly, when Battlefield Earth, John Travolta’s cinematic rendition of the sci-fi novel penned by Scientology founder L Ron Hubbard, was released in May, 2000, one review wondered whether it was too early to call this galactic-scale disaster “the worst movie of the millennium.” So is PACE the Battlefield Earth of clinical trials?
Monbiot collided into Professor Sharpe in a roundabout way. In 2021, Monbiot wrote a column about the wave of people experiencing prolonged symptoms after an acute bout of Covid-19. The following month, Professor Sharpe highlighted Monbiot’s column in a presentation at an insurance industry conference, suggesting that such public discussion of Long Covid was a key factor in generating similar reports from patients and perpetuating this world-wide phenomenon. In other words, Professor Sharpe was casting Monbiot as something of a Long Covid super-spreader while suggesting that Long Covid itself was essentially a form of global mass hysteria or pandemic-related anxiety, depression and PTSD.
That incident triggered Monbiot’s further interest in this cabal of “experts” and their claims about ME/CFS as well as Long Covid. And this much is clear to any neutral observer who reviews the facts: Like cult members and Trumpists, these GET/CBT fanatics are wedded to dogma. They cannot be reasoned with. They reject proper science. They practice “eminence-based medicine,” as my friend and colleague Brian Hughes, a psychology professor at the University of Galway, has written.
Monbiot’s column is a welcome rebuttal to decades of bad journalism as well as bad science. Journalists, like others, have been bamboozled by Sir Simon, Professor Sharpe and their sycophants at the Science Media Centre, a London propaganda mill for industry and other interests that poses as a neutral arbiter of debate. (Maybe on some issues they are a neutral arbiter; my experience with them is based on their handling of this matter.) The SMC relentlessly promoted the self-deluded pooh-bahs behind the GET/CBT approach and orchestrated a smear campaign against patients objecting to the science. As a result, multiple news stories in prominent outlets portrayed these desperately ill people as a howling pack of demented, dangerous, and science-denying crazies. (In a memoir, longtime SMC head Fiona Fox actually compared patients who challenged this awful science to Nazis.)
In his piece, Monbiot links to a prime example of this journalism malfeasance: a laughable “special report” from Kate Kelland, a former Reuters correspondent in London. In the article, Kelland hagiographed Professor Sharpe as a scientific martyr hounded out of the ME field by mean tweets, but she provided no substantive discussion of the PACE trial’s unacceptable methodological flaws. She portrayed me as a sort of Pied Piper for deluded ME/CFS patients, scooping up their cash as I lead them merrily away from the therapies that could cure them. It should be noted that Kelland was a bestie of the SMC. In 2012, she wrote a glowing testimonial for the center’s tenth anniversary booklet.
In the essay, Kelland indicated that she trusted experts selected by the SMC more than she would trust experts she herself had identified and found. In other words, Kelland essentially outsourced to the SMC much or all of the thinking process she should have devoted to assessing whether sources were or were not credible. In the case of ME/CFS, she made a spectacularly stupid and incompetent choice.
Kelland’s piece has had an impact—it has been cited a number of times in the medical literature as “evidence” of the purported harassment of scientists. In other words, the very existence of the article somehow retroactively proves the harassment claims. It is refreshing to see Monbiot cite this piece as an example of where journalism has gone wrong in this field. Luckily for me personally, however, the article appeared right before a Berkeley crowdfunding month. Kelland’s decision to lavish so much attention on me in her attempt to discredit my work was really an enormous compliment–a testament to the impact I’d already had in damaging the reputations of Professor Sharpe and his colleagues. It certainly boosted Berkeley’s crowdfunding prospects in the subsequent campaign. (Thanks again, Kate!)
It is, as Monbiot notes, a huge scandal that the entire UK academic and medical establishment accepted the anti-scientific crap purveyed by the likes of Professor Sharpe and Sir Simon. The entire UK academic and medical establishment accepted the fraudulent PACE trial as a terrific piece of research. How could this have happened? How could deference to authority be so extreme as to lead seemingly smart people to defend research in which participants could be “recovered” on key measures at baseline? It’s an insane state of affairs, and has been for a very long time.
But Monbiot’s Guardian column marks a significant milestone in this extended saga. He deserves enormous thanks for taking this on; let’s hope there’s more to come. This seemingly interminable ‘reign of error,’ which has brought so much misery to millions of patients, needs to come to an end.
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Fand sie immer schon ganz entzückend, deshalb lasse ich einfach mal dieses Künsterinnen-Gespräch mit Maresa Hörbiger hier. Sie spricht über den Monolog "Ich, Olga Schnitzler", die Sehnsucht nach Nähe zum Publikum, ihre Eltern, den Verlust ihrer Schwester, ihre Mentorin Susi Nicoletti, ihre zweite Heimat Venedig,...:
https://sound.orf.at/radio/oe1/sendung/175290/maresa-hoerbiger-uber-schnitzler
#Theater #Hörbiger #Wessely #Schnitzler #Publikum #Grinzing #Wien #Venedig #Radio #Schauspielerin #Künstlerin
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Fand sie immer schon ganz entzückend, deshalb lasse ich einfach mal dieses Künsterinnen-Gespräch mit Maresa Hörbiger hier. Sie spricht über den Monolog "Ich, Olga Schnitzler", die Sehnsucht nach Nähe zum Publikum, ihre Eltern, den Verlust ihrer Schwester, ihre Mentorin Susi Nicoletti, ihre zweite Heimat Venedig,...:
https://sound.orf.at/radio/oe1/sendung/175290/maresa-hoerbiger-uber-schnitzler
#Theater #Hörbiger #Wessely #Schnitzler #Publikum #Grinzing #Wien #Venedig #Radio #Schauspielerin #Künstlerin
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Fand sie immer schon ganz entzückend, deshalb lasse ich einfach mal dieses Künsterinnen-Gespräch mit Maresa Hörbiger hier. Sie spricht über den Monolog "Ich, Olga Schnitzler", die Sehnsucht nach Nähe zum Publikum, ihre Eltern, den Verlust ihrer Schwester, ihre Mentorin Susi Nicoletti, ihre zweite Heimat Venedig,...:
https://sound.orf.at/radio/oe1/sendung/175290/maresa-hoerbiger-uber-schnitzler
#Theater #Hörbiger #Wessely #Schnitzler #Publikum #Grinzing #Wien #Venedig #Radio #Schauspielerin #Künstlerin
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Große Empfehlung für den #jelinek Film „Elfriede Jelinek - Die Sprache von der Leine lassen“ von Claudia Müller.
Macht Werk und Schriftstellerin sehr zugänglich. Auch großartig die österreichische Zeitgeschichte.
#ramsau #fremdenverkehr #sinowatz #wessely #haider #waldheim #rechnitz #romamorde #peymann #schleef #nobelpreis #nestbeschmutzerin -
Große Empfehlung für den #jelinek Film „Elfriede Jelinek - Die Sprache von der Leine lassen“ von Claudia Müller.
Macht Werk und Schriftstellerin sehr zugänglich. Auch großartig die österreichische Zeitgeschichte.
#ramsau #fremdenverkehr #sinowatz #wessely #haider #waldheim #rechnitz #romamorde #peymann #schleef #nobelpreis #nestbeschmutzerin -
Große Empfehlung für den #jelinek Film „Elfriede Jelinek - Die Sprache von der Leine lassen“ von Claudia Müller.
Macht Werk und Schriftstellerin sehr zugänglich. Auch großartig die österreichische Zeitgeschichte.
#ramsau #fremdenverkehr #sinowatz #wessely #haider #waldheim #rechnitz #romamorde #peymann #schleef #nobelpreis #nestbeschmutzerin