#lightningprocess — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #lightningprocess, aggregated by home.social.
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Claims Built on Fraudulent Trials Should Be Ignored
By David Tuller, DrPH When researchers cite fraudulent studies in support of their claims, it is best not to take anything they write at face value. That is certainly the case with a recent paper titled “Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery,” published earlier this month in the Scandinavian Journal of Primary Health Care. (I use “fraudulent” here not in the legal sense but in the sense of “deceptive” or “deceitful.”) As evidence of something or other, the paper’s references include both the fraudulent PACE trial, whose reported findings have been discredited and rejected by leading medical authorities, and a fraudulent pediatric trial of the Lightning Process, in which the investigators violated core methodological principles of scientific research. (The Lightning Process, a woo-woo “brain retraining” program, was created by osteopath and former spiritual healer Phil Parker, who once claimed to be able to diagnose people’s ailments by stepping into their bodies for a look-see.) The Scandinavian Journal of Primary Health Care has emerged as something of a house organ for members of the biopsychosocial ideological brigades, including prominent non-Nordic fellow travelers like Professor Paul Garner and Professor Trudie Chalder. (The former is the corresponding author of this paper; the latter is one of multiple co-authors.) Both were also co-authors of a similarly misguided document published by the same journal In 2023–a manifesto from the self-styled Oslo Chronic Fatigue Consortium called “Chronic fatigue syndromes: real illnesses that people can recover from.” The new paper’s goal is to offer primary care physicians a short summary of “contemporary theories of PPS” along with purported “evidence-informed pathways” for treating patients. The research involved a “narrative literature review and consensus development with experienced practitioners.” In other words, the paper presents the beliefs, opinions and …https://trialbyerror.org/2026/04/01/claims-built-on-fraudulent-trials-should-be-ignored/
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Claims Built on Fraudulent Trials Should Be Ignored
By David Tuller, DrPH When researchers cite fraudulent studies in support of their claims, it is best not to take anything they write at face value. That is certainly the case with a recent paper titled “Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery,” published earlier this month in the Scandinavian Journal of Primary Health Care. (I use “fraudulent” here not in the legal sense but in the sense of “deceptive” or “deceitful.”) As evidence of something or other, the paper’s references include both the fraudulent PACE trial, whose reported findings have been discredited and rejected by leading medical authorities, and a fraudulent pediatric trial of the Lightning Process, in which the investigators violated core methodological principles of scientific research. (The Lightning Process, a woo-woo “brain retraining” program, was created by osteopath and former spiritual healer Phil Parker, who once claimed to be able to diagnose people’s ailments by stepping into their bodies for a look-see.) The Scandinavian Journal of Primary Health Care has emerged as something of a house organ for members of the biopsychosocial ideological brigades, including prominent non-Nordic fellow travelers like Professor Paul Garner and Professor Trudie Chalder. (The former is the corresponding author of this paper; the latter is one of multiple co-authors.) Both were also co-authors of a similarly misguided document published by the same journal In 2023–a manifesto from the self-styled Oslo Chronic Fatigue Consortium called “Chronic fatigue syndromes: real illnesses that people can recover from.” The new paper’s goal is to offer primary care physicians a short summary of “contemporary theories of PPS” along with purported “evidence-informed pathways” for treating patients. The research involved a “narrative literature review and consensus development with experienced practitioners.” In other words, the paper presents the beliefs, opinions and …https://trialbyerror.org/2026/04/01/claims-built-on-fraudulent-trials-should-be-ignored/
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Claims Built on Fraudulent Trials Should Be Ignored
By David Tuller, DrPH When researchers cite fraudulent studies in support of their claims, it is best not to take anything they write at face value. That is certainly the case with a recent paper titled “Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery,” published earlier this month in the Scandinavian Journal of Primary Health Care. (I use “fraudulent” here not in the legal sense but in the sense of “deceptive” or “deceitful.”) As evidence of something or other, the paper’s references include both the fraudulent PACE trial, whose reported findings have been discredited and rejected by leading medical authorities, and a fraudulent pediatric trial of the Lightning Process, in which the investigators violated core methodological principles of scientific research. (The Lightning Process, a woo-woo “brain retraining” program, was created by osteopath and former spiritual healer Phil Parker, who once claimed to be able to diagnose people’s ailments by stepping into their bodies for a look-see.) The Scandinavian Journal of Primary Health Care has emerged as something of a house organ for members of the biopsychosocial ideological brigades, including prominent non-Nordic fellow travelers like Professor Paul Garner and Professor Trudie Chalder. (The former is the corresponding author of this paper; the latter is one of multiple co-authors.) Both were also co-authors of a similarly misguided document published by the same journal In 2023–a manifesto from the self-styled Oslo Chronic Fatigue Consortium called “Chronic fatigue syndromes: real illnesses that people can recover from.” The new paper’s goal is to offer primary care physicians a short summary of “contemporary theories of PPS” along with purported “evidence-informed pathways” for treating patients. The research involved a “narrative literature review and consensus development with experienced practitioners.” In other words, the paper presents the beliefs, opinions and …https://trialbyerror.org/2026/04/01/claims-built-on-fraudulent-trials-should-be-ignored/
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Claims Built on Fraudulent Trials Should Be Ignored
By David Tuller, DrPH When researchers cite fraudulent studies in support of their claims, it is best not to take anything they write at face value. That is certainly the case with a recent paper titled “Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery,” published earlier this month in the Scandinavian Journal of Primary Health Care. (I use “fraudulent” here not in the legal sense but in the sense of “deceptive” or “deceitful.”) As evidence of something or other, the paper’s references include both the fraudulent PACE trial, whose reported findings have been discredited and rejected by leading medical authorities, and a fraudulent pediatric trial of the Lightning Process, in which the investigators violated core methodological principles of scientific research. (The Lightning Process, a woo-woo “brain retraining” program, was created by osteopath and former spiritual healer Phil Parker, who once claimed to be able to diagnose people’s ailments by stepping into their bodies for a look-see.) The Scandinavian Journal of Primary Health Care has emerged as something of a house organ for members of the biopsychosocial ideological brigades, including prominent non-Nordic fellow travelers like Professor Paul Garner and Professor Trudie Chalder. (The former is the corresponding author of this paper; the latter is one of multiple co-authors.) Both were also co-authors of a similarly misguided document published by the same journal In 2023–a manifesto from the self-styled Oslo Chronic Fatigue Consortium called “Chronic fatigue syndromes: real illnesses that people can recover from.” The new paper’s goal is to offer primary care physicians a short summary of “contemporary theories of PPS” along with purported “evidence-informed pathways” for treating patients. The research involved a “narrative literature review and consensus development with experienced practitioners.” In other words, the paper presents the beliefs, opinions and …https://trialbyerror.org/2026/04/01/claims-built-on-fraudulent-trials-should-be-ignored/
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Claims Built on Fraudulent Trials Should Be Ignored
By David Tuller, DrPH When researchers cite fraudulent studies in support of their claims, it is best not to take anything they write at face value. That is certainly the case with a recent paper titled “Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery,” published earlier this month in the Scandinavian Journal of Primary Health Care. (I use “fraudulent” here not in the legal sense but in the sense of “deceptive” or “deceitful.”) As evidence of something or other, the paper’s references include both the fraudulent PACE trial, whose reported findings have been discredited and rejected by leading medical authorities, and a fraudulent pediatric trial of the Lightning Process, in which the investigators violated core methodological principles of scientific research. (The Lightning Process, a woo-woo “brain retraining” program, was created by osteopath and former spiritual healer Phil Parker, who once claimed to be able to diagnose people’s ailments by stepping into their bodies for a look-see.) The Scandinavian Journal of Primary Health Care has emerged as something of a house organ for members of the biopsychosocial ideological brigades, including prominent non-Nordic fellow travelers like Professor Paul Garner and Professor Trudie Chalder. (The former is the corresponding author of this paper; the latter is one of multiple co-authors.) Both were also co-authors of a similarly misguided document published by the same journal In 2023–a manifesto from the self-styled Oslo Chronic Fatigue Consortium called “Chronic fatigue syndromes: real illnesses that people can recover from.” The new paper’s goal is to offer primary care physicians a short summary of “contemporary theories of PPS” along with purported “evidence-informed pathways” for treating patients. The research involved a “narrative literature review and consensus development with experienced practitioners.” In other words, the paper presents the beliefs, opinions and …https://trialbyerror.org/2026/04/01/claims-built-on-fraudulent-trials-should-be-ignored/
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Debattörer i Läkartidningen lutar sig mot anekdoter från en alternativmedicinsk förening med tydliga kommersiella kopplingar. #mecfs #postcovid #lightningprocess #läkare themeinquiryreport.com/2025/12/09/v...
Vetenskap ersätts av anekdoter... -
Debattörer i Läkartidningen lutar sig mot anekdoter från en alternativmedicinsk förening med tydliga kommersiella kopplingar. #mecfs #postcovid #lightningprocess #läkare themeinquiryreport.com/2025/12/09/v...
Vetenskap ersätts av anekdoter... -
Debattörer i Läkartidningen lutar sig mot anekdoter från en alternativmedicinsk förening med tydliga kommersiella kopplingar. #mecfs #postcovid #lightningprocess #läkare themeinquiryreport.com/2025/12/09/v...
Vetenskap ersätts av anekdoter... -
New Zealand GP Group Disavows Lightning Process Endorsement; BBC’s Con or Cure Takes Skeptical Look at LP
By David Tuller, DrPH
“A small step in New Zealand”
Sometimes there is modest good news.
In this case, the good news is all due to the diligent efforts of Nina Steinkopf, who writes the always useful blog MElife (MElivet). Steinkopf, who was diagnosed with ME in 2010, mostly covers goings-on in Norway and across Scandinavia. That means she frequently writes about the Lightning Process (LP), which seems to have some high-profile and media-friendly advocates in the region.
The modest good news relates to a recent LP paper from a New Zealand general practitioner, Bruce Arroll, and colleagues. Published in February in the Journal of Family Medicine and Primary Care, it was called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” (Dr Arroll is known in New Zealand for his advocacy of the LP.)
As I wrote in a post last month, the paper is a load of nonsense, for any number of reasons, including:
“Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic criteria for ME/CFS? Who knows?…The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.”
In a glaring lapse, Dr Arroll and colleagues exempted themselves from ethical review for specious reasons. They interviewed multiple people, and ethical review was absolutely required by any standard. No reputable journal should even have ever considered publishing this paper. (Even before considering that it is of poor quality.)
Steinkopf also had big issues with the paper. Unlike me (!!!), she took action.
As she reported in late February, she wrote to the journal to express concerns. Then, as she explained in her most recent post (“A small step in New Zealand,” April 8th), she came across an article about the Lightning Process that Dr Arroll had co-written for New Zealand Doctor, a website for health professionals.
The article, headlined “Using Lightning Process to break cycle of fatigue in long COVID,” was published under a column heading called “Practice.” Steinkopf noticed that the article carried the following note: “This Practice article has been endorsed by the RNZCGP and has been approved for up to 0.5 credits for continuing professional development purposes.” The RNZCGP is the Royal New Zealand College of General Practitioners.
Steinkopf wrote to the RNZCGP, questioning the organization’s endorsement of the practice article in New Zealand Doctor and alerting them to issues with the journal paper on which it was based. A few hours later she received the following response:
“Kia ora Nina,
Thank you for your patience while we investigated this matter.
Please note that the Journal of Family Medicine and Primary Care 2025 is not affiliated with the Royal New Zealand College of General Practitioners (the College). We have, however, located the article in question on the NZ Doctor platform, which is one of our endorsed education providers.
That said, the Lightning Process is not a topic endorsed by the College, as it does not align with current NICE guidelines. [The UK’s National Institute for Health and Care Excellence recommended against the Lightning Process in its 2021 guidelines for ME/CFS.]
We have contacted NZ Doctor and requested that they remove any reference suggesting College endorsement and clearly state that this article is not endorsed by the College.
Please feel free to reach out if you have any further questions.”
And that was that. New Zealand’s GP association was stating clearly that they follow the 2021 NICE guidelines in this instance and do not endorse the LP. Dr Arroll’s article in New Zealand Doctor now carries the following alert: “The RNZCGP does not endorse this content for continuing professional development purposes.” The Journal of Family Medicine and Primary Care has not dealt with the problems involving Dr Arroll’s LP paper, but that’s another issue.
Even if they’re small, small steps are important and should be celebrated! And often small steps do not happen on their own, without some impetus. Luckily, in this case, the observant Steinkopf was paying attention to the details and prompted a substantive change.
**********
BBC’s Cure or Con takes on the LP
The BBC series of health segments called Dr Xand’s Con or Cure, with the physician and TV presenter Christopher van Tulleken, just took on the Lightning Process. (Apparently van Tulleken’s identical twin is also a physician and TV presenter, and the two sometimes work together. They were not on my radar. Are they well-known in the UK?) The nine-minute segment focused largely on the story of Oonagh Cousins, the former rower forced by Long Covid to give up her Olympic dreams.
(I interviewed Cousins last summer. She always comes across as thoughtful and well-spoken. She now works with #ThereForME, an awareness and advocacy campaign.)
In the segment, Cousins recounted how faith healer and LP-founder Phil Parker himself had recruited her to the program. After she appeared in the press talking about her situation, he contacted her and offered her a free course of LP as a way to get rid of her debilitating Long Covid symptoms. Well, it didn’t work—and it led Cousins to begin advising patients to be wary of the claims made by the LP and other self-styled “mind-body” programs. Besides Cousins, the segment included an interview with Dr Melissa Heightman, a respiratory specialist consultant.
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New Zealand GP Group Disavows Lightning Process Endorsement; BBC’s Con or Cure Takes Skeptical Look at LP
By David Tuller, DrPH
“A small step in New Zealand”
Sometimes there is modest good news.
In this case, the good news is all due to the diligent efforts of Nina Steinkopf, who writes the always useful blog MElife (MElivet). Steinkopf, who was diagnosed with ME in 2010, mostly covers goings-on in Norway and across Scandinavia. That means she frequently writes about the Lightning Process (LP), which seems to have some high-profile and media-friendly advocates in the region.
The modest good news relates to a recent LP paper from a New Zealand general practitioner, Bruce Arroll, and colleagues. Published in February in the Journal of Family Medicine and Primary Care, it was called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” (Dr Arroll is known in New Zealand for his advocacy of the LP.)
As I wrote in a post last month, the paper is a load of nonsense, for any number of reasons, including:
“Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic criteria for ME/CFS? Who knows?…The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.”
In a glaring lapse, Dr Arroll and colleagues exempted themselves from ethical review for specious reasons. They interviewed multiple people, and ethical review was absolutely required by any standard. No reputable journal should even have ever considered publishing this paper. (Even before considering that it is of poor quality.)
Steinkopf also had big issues with the paper. Unlike me (!!!), she took action.
As she reported in late February, she wrote to the journal to express concerns. Then, as she explained in her most recent post (“A small step in New Zealand,” April 8th), she came across an article about the Lightning Process that Dr Arroll had co-written for New Zealand Doctor, a website for health professionals.
The article, headlined “Using Lightning Process to break cycle of fatigue in long COVID,” was published under a column heading called “Practice.” Steinkopf noticed that the article carried the following note: “This Practice article has been endorsed by the RNZCGP and has been approved for up to 0.5 credits for continuing professional development purposes.” The RNZCGP is the Royal New Zealand College of General Practitioners.
Steinkopf wrote to the RNZCGP, questioning the organization’s endorsement of the practice article in New Zealand Doctor and alerting them to issues with the journal paper on which it was based. A few hours later she received the following response:
“Kia ora Nina,
Thank you for your patience while we investigated this matter.
Please note that the Journal of Family Medicine and Primary Care 2025 is not affiliated with the Royal New Zealand College of General Practitioners (the College). We have, however, located the article in question on the NZ Doctor platform, which is one of our endorsed education providers.
That said, the Lightning Process is not a topic endorsed by the College, as it does not align with current NICE guidelines. [The UK’s National Institute for Health and Care Excellence recommended against the Lightning Process in its 2021 guidelines for ME/CFS.]
We have contacted NZ Doctor and requested that they remove any reference suggesting College endorsement and clearly state that this article is not endorsed by the College.
Please feel free to reach out if you have any further questions.”
And that was that. New Zealand’s GP association was stating clearly that they follow the 2021 NICE guidelines in this instance and do not endorse the LP. Dr Arroll’s article in New Zealand Doctor now carries the following alert: “The RNZCGP does not endorse this content for continuing professional development purposes.” The Journal of Family Medicine and Primary Care has not dealt with the problems involving Dr Arroll’s LP paper, but that’s another issue.
Even if they’re small, small steps are important and should be celebrated! And often small steps do not happen on their own, without some impetus. Luckily, in this case, the observant Steinkopf was paying attention to the details and prompted a substantive change.
**********
BBC’s Cure or Con takes on the LP
The BBC series of health segments called Dr Xand’s Con or Cure, with the physician and TV presenter Christopher van Tulleken, just took on the Lightning Process. (Apparently van Tulleken’s identical twin is also a physician and TV presenter, and the two sometimes work together. They were not on my radar. Are they well-known in the UK?) The nine-minute segment focused largely on the story of Oonagh Cousins, the former rower forced by Long Covid to give up her Olympic dreams.
(I interviewed Cousins last summer. She always comes across as thoughtful and well-spoken. She now works with #ThereForME, an awareness and advocacy campaign.)
In the segment, Cousins recounted how faith healer and LP-founder Phil Parker himself had recruited her to the program. After she appeared in the press talking about her situation, he contacted her and offered her a free course of LP as a way to get rid of her debilitating Long Covid symptoms. Well, it didn’t work—and it led Cousins to begin advising patients to be wary of the claims made by the LP and other self-styled “mind-body” programs. Besides Cousins, the segment included an interview with Dr Melissa Heightman, a respiratory specialist consultant.
-
New Zealand GP Group Disavows Lightning Process Endorsement; BBC’s Con or Cure Takes Skeptical Look at LP
By David Tuller, DrPH
“A small step in New Zealand”
Sometimes there is modest good news.
In this case, the good news is all due to the diligent efforts of Nina Steinkopf, who writes the always useful blog MElife (MElivet). Steinkopf, who was diagnosed with ME in 2010, mostly covers goings-on in Norway and across Scandinavia. That means she frequently writes about the Lightning Process (LP), which seems to have some high-profile and media-friendly advocates in the region.
The modest good news relates to a recent LP paper from a New Zealand general practitioner, Bruce Arroll, and colleagues. Published in February in the Journal of Family Medicine and Primary Care, it was called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” (Dr Arroll is known in New Zealand for his advocacy of the LP.)
As I wrote in a post last month, the paper is a load of nonsense, for any number of reasons, including:
“Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic criteria for ME/CFS? Who knows?…The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.”
In a glaring lapse, Dr Arroll and colleagues exempted themselves from ethical review for specious reasons. They interviewed multiple people, and ethical review was absolutely required by any standard. No reputable journal should even have ever considered publishing this paper. (Even before considering that it is of poor quality.)
Steinkopf also had big issues with the paper. Unlike me (!!!), she took action.
As she reported in late February, she wrote to the journal to express concerns. Then, as she explained in her most recent post (“A small step in New Zealand,” April 8th), she came across an article about the Lightning Process that Dr Arroll had co-written for New Zealand Doctor, a website for health professionals.
The article, headlined “Using Lightning Process to break cycle of fatigue in long COVID,” was published under a column heading called “Practice.” Steinkopf noticed that the article carried the following note: “This Practice article has been endorsed by the RNZCGP and has been approved for up to 0.5 credits for continuing professional development purposes.” The RNZCGP is the Royal New Zealand College of General Practitioners.
Steinkopf wrote to the RNZCGP, questioning the organization’s endorsement of the practice article in New Zealand Doctor and alerting them to issues with the journal paper on which it was based. A few hours later she received the following response:
“Kia ora Nina,
Thank you for your patience while we investigated this matter.
Please note that the Journal of Family Medicine and Primary Care 2025 is not affiliated with the Royal New Zealand College of General Practitioners (the College). We have, however, located the article in question on the NZ Doctor platform, which is one of our endorsed education providers.
That said, the Lightning Process is not a topic endorsed by the College, as it does not align with current NICE guidelines. [The UK’s National Institute for Health and Care Excellence recommended against the Lightning Process in its 2021 guidelines for ME/CFS.]
We have contacted NZ Doctor and requested that they remove any reference suggesting College endorsement and clearly state that this article is not endorsed by the College.
Please feel free to reach out if you have any further questions.”
And that was that. New Zealand’s GP association was stating clearly that they follow the 2021 NICE guidelines in this instance and do not endorse the LP. Dr Arroll’s article in New Zealand Doctor now carries the following alert: “The RNZCGP does not endorse this content for continuing professional development purposes.” The Journal of Family Medicine and Primary Care has not dealt with the problems involving Dr Arroll’s LP paper, but that’s another issue.
Even if they’re small, small steps are important and should be celebrated! And often small steps do not happen on their own, without some impetus. Luckily, in this case, the observant Steinkopf was paying attention to the details and prompted a substantive change.
**********
BBC’s Cure or Con takes on the LP
The BBC series of health segments called Dr Xand’s Con or Cure, with the physician and TV presenter Christopher van Tulleken, just took on the Lightning Process. (Apparently van Tulleken’s identical twin is also a physician and TV presenter, and the two sometimes work together. They were not on my radar. Are they well-known in the UK?) The nine-minute segment focused largely on the story of Oonagh Cousins, the former rower forced by Long Covid to give up her Olympic dreams.
(I interviewed Cousins last summer. She always comes across as thoughtful and well-spoken. She now works with #ThereForME, an awareness and advocacy campaign.)
In the segment, Cousins recounted how faith healer and LP-founder Phil Parker himself had recruited her to the program. After she appeared in the press talking about her situation, he contacted her and offered her a free course of LP as a way to get rid of her debilitating Long Covid symptoms. Well, it didn’t work—and it led Cousins to begin advising patients to be wary of the claims made by the LP and other self-styled “mind-body” programs. Besides Cousins, the segment included an interview with Dr Melissa Heightman, a respiratory specialist consultant.
-
New Zealand GP Group Disavows Lightning Process Endorsement; BBC’s Con or Cure Takes Skeptical Look at LP
By David Tuller, DrPH
“A small step in New Zealand”
Sometimes there is modest good news.
In this case, the good news is all due to the diligent efforts of Nina Steinkopf, who writes the always useful blog MElife (MElivet). Steinkopf, who was diagnosed with ME in 2010, mostly covers goings-on in Norway and across Scandinavia. That means she frequently writes about the Lightning Process (LP), which seems to have some high-profile and media-friendly advocates in the region.
The modest good news relates to a recent LP paper from a New Zealand general practitioner, Bruce Arroll, and colleagues. Published in February in the Journal of Family Medicine and Primary Care, it was called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” (Dr Arroll is known in New Zealand for his advocacy of the LP.)
As I wrote in a post last month, the paper is a load of nonsense, for any number of reasons, including:
“Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic criteria for ME/CFS? Who knows?…The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.”
In a glaring lapse, Dr Arroll and colleagues exempted themselves from ethical review for specious reasons. They interviewed multiple people, and ethical review was absolutely required by any standard. No reputable journal should even have ever considered publishing this paper. (Even before considering that it is of poor quality.)
Steinkopf also had big issues with the paper. Unlike me (!!!), she took action.
As she reported in late February, she wrote to the journal to express concerns. Then, as she explained in her most recent post (“A small step in New Zealand,” April 8th), she came across an article about the Lightning Process that Dr Arroll had co-written for New Zealand Doctor, a website for health professionals.
The article, headlined “Using Lightning Process to break cycle of fatigue in long COVID,” was published under a column heading called “Practice.” Steinkopf noticed that the article carried the following note: “This Practice article has been endorsed by the RNZCGP and has been approved for up to 0.5 credits for continuing professional development purposes.” The RNZCGP is the Royal New Zealand College of General Practitioners.
Steinkopf wrote to the RNZCGP, questioning the organization’s endorsement of the practice article in New Zealand Doctor and alerting them to issues with the journal paper on which it was based. A few hours later she received the following response:
“Kia ora Nina,
Thank you for your patience while we investigated this matter.
Please note that the Journal of Family Medicine and Primary Care 2025 is not affiliated with the Royal New Zealand College of General Practitioners (the College). We have, however, located the article in question on the NZ Doctor platform, which is one of our endorsed education providers.
That said, the Lightning Process is not a topic endorsed by the College, as it does not align with current NICE guidelines. [The UK’s National Institute for Health and Care Excellence recommended against the Lightning Process in its 2021 guidelines for ME/CFS.]
We have contacted NZ Doctor and requested that they remove any reference suggesting College endorsement and clearly state that this article is not endorsed by the College.
Please feel free to reach out if you have any further questions.”
And that was that. New Zealand’s GP association was stating clearly that they follow the 2021 NICE guidelines in this instance and do not endorse the LP. Dr Arroll’s article in New Zealand Doctor now carries the following alert: “The RNZCGP does not endorse this content for continuing professional development purposes.” The Journal of Family Medicine and Primary Care has not dealt with the problems involving Dr Arroll’s LP paper, but that’s another issue.
Even if they’re small, small steps are important and should be celebrated! And often small steps do not happen on their own, without some impetus. Luckily, in this case, the observant Steinkopf was paying attention to the details and prompted a substantive change.
**********
BBC’s Cure or Con takes on the LP
The BBC series of health segments called Dr Xand’s Con or Cure, with the physician and TV presenter Christopher van Tulleken, just took on the Lightning Process. (Apparently van Tulleken’s identical twin is also a physician and TV presenter, and the two sometimes work together. They were not on my radar. Are they well-known in the UK?) The nine-minute segment focused largely on the story of Oonagh Cousins, the former rower forced by Long Covid to give up her Olympic dreams.
(I interviewed Cousins last summer. She always comes across as thoughtful and well-spoken. She now works with #ThereForME, an awareness and advocacy campaign.)
In the segment, Cousins recounted how faith healer and LP-founder Phil Parker himself had recruited her to the program. After she appeared in the press talking about her situation, he contacted her and offered her a free course of LP as a way to get rid of her debilitating Long Covid symptoms. Well, it didn’t work—and it led Cousins to begin advising patients to be wary of the claims made by the LP and other self-styled “mind-body” programs. Besides Cousins, the segment included an interview with Dr Melissa Heightman, a respiratory specialist consultant.
-
New Zealand GP Group Disavows Lightning Process Endorsement; BBC’s Con or Cure Takes Skeptical Look at LP
By David Tuller, DrPH
“A small step in New Zealand”
Sometimes there is modest good news.
In this case, the good news is all due to the diligent efforts of Nina Steinkopf, who writes the always useful blog MElife (MElivet). Steinkopf, who was diagnosed with ME in 2010, mostly covers goings-on in Norway and across Scandinavia. That means she frequently writes about the Lightning Process (LP), which seems to have some high-profile and media-friendly advocates in the region.
The modest good news relates to a recent LP paper from a New Zealand general practitioner, Bruce Arroll, and colleagues. Published in February in the Journal of Family Medicine and Primary Care, it was called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” (Dr Arroll is known in New Zealand for his advocacy of the LP.)
As I wrote in a post last month, the paper is a load of nonsense, for any number of reasons, including:
“Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic criteria for ME/CFS? Who knows?…The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.”
In a glaring lapse, Dr Arroll and colleagues exempted themselves from ethical review for specious reasons. They interviewed multiple people, and ethical review was absolutely required by any standard. No reputable journal should even have ever considered publishing this paper. (Even before considering that it is of poor quality.)
Steinkopf also had big issues with the paper. Unlike me (!!!), she took action.
As she reported in late February, she wrote to the journal to express concerns. Then, as she explained in her most recent post (“A small step in New Zealand,” April 8th), she came across an article about the Lightning Process that Dr Arroll had co-written for New Zealand Doctor, a website for health professionals.
The article, headlined “Using Lightning Process to break cycle of fatigue in long COVID,” was published under a column heading called “Practice.” Steinkopf noticed that the article carried the following note: “This Practice article has been endorsed by the RNZCGP and has been approved for up to 0.5 credits for continuing professional development purposes.” The RNZCGP is the Royal New Zealand College of General Practitioners.
Steinkopf wrote to the RNZCGP, questioning the organization’s endorsement of the practice article in New Zealand Doctor and alerting them to issues with the journal paper on which it was based. A few hours later she received the following response:
“Kia ora Nina,
Thank you for your patience while we investigated this matter.
Please note that the Journal of Family Medicine and Primary Care 2025 is not affiliated with the Royal New Zealand College of General Practitioners (the College). We have, however, located the article in question on the NZ Doctor platform, which is one of our endorsed education providers.
That said, the Lightning Process is not a topic endorsed by the College, as it does not align with current NICE guidelines. [The UK’s National Institute for Health and Care Excellence recommended against the Lightning Process in its 2021 guidelines for ME/CFS.]
We have contacted NZ Doctor and requested that they remove any reference suggesting College endorsement and clearly state that this article is not endorsed by the College.
Please feel free to reach out if you have any further questions.”
And that was that. New Zealand’s GP association was stating clearly that they follow the 2021 NICE guidelines in this instance and do not endorse the LP. Dr Arroll’s article in New Zealand Doctor now carries the following alert: “The RNZCGP does not endorse this content for continuing professional development purposes.” The Journal of Family Medicine and Primary Care has not dealt with the problems involving Dr Arroll’s LP paper, but that’s another issue.
Even if they’re small, small steps are important and should be celebrated! And often small steps do not happen on their own, without some impetus. Luckily, in this case, the observant Steinkopf was paying attention to the details and prompted a substantive change.
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BBC’s Cure or Con takes on the LP
The BBC series of health segments called Dr Xand’s Con or Cure, with the physician and TV presenter Christopher van Tulleken, just took on the Lightning Process. (Apparently van Tulleken’s identical twin is also a physician and TV presenter, and the two sometimes work together. They were not on my radar. Are they well-known in the UK?) The nine-minute segment focused largely on the story of Oonagh Cousins, the former rower forced by Long Covid to give up her Olympic dreams.
(I interviewed Cousins last summer. She always comes across as thoughtful and well-spoken. She now works with #ThereForME, an awareness and advocacy campaign.)
In the segment, Cousins recounted how faith healer and LP-founder Phil Parker himself had recruited her to the program. After she appeared in the press talking about her situation, he contacted her and offered her a free course of LP as a way to get rid of her debilitating Long Covid symptoms. Well, it didn’t work—and it led Cousins to begin advising patients to be wary of the claims made by the LP and other self-styled “mind-body” programs. Besides Cousins, the segment included an interview with Dr Melissa Heightman, a respiratory specialist consultant.
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New Hyped-Up Lightning Process Study from New Zealand
By David Tuller, DrPH
In January, the Journal of Family Medicine and Primary Care published a paper from New Zealand called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” It reads like a Lightning Process marketing effort cosplaying as an academic study.
As a reminder, the LP is a mish-mash of, among other approaches, neurolinguistic programming, positive affirmations, relaxation and meditative strategies, and osteopathy, delivered over the course of three days. It was created by British osteopath and spiritual healer Phil Parker, who had previously reported that he had “developed this ability to step into other people’s bodies… to assist them in their healing with amazing results.” Parker also co-led a spiritual healing course that included modules on Tarot reading, diagnosis by aura, and related psychic-therapeutic modalities.
In the LP, participants are dissuaded from acknowledging ongoing pain and suffering. The intervention trains them to make only optimistic and uplifting statements about how they feel; that is the essence of the LP. Doing the opposite essentially means you’ve failed the program. Given such a strategy, it is challenging to assess subjective statements about success from LP participants.
(I wrote about the LP for Codastory.com in 2021, and in multiple blog posts over the years. I also exposed Professor Esther Crawley’s 2018 pediatric trial of the LP as an example of research misconduct.)
The lead author of this new paper is Professor Bruce Arroll, a general practitioner and Lightning Process devotee at the University of Auckland, in New Zealand. In a 2023 treatment guide for ME/CFS, Professor Arroll recommended the LP, along with CBT and GET. He is one of several co-signers of a statement posted on the LP site and titled “Support for the Evidence-Based Research on the Lightning Process: A Letter from Academics and Medical Professionals.”
The new paper involved retrospective interviews with 12 participants who underwent the LP for Long Covid with a woman said to be New Zealand’s sole full-time practitioner. Here’s what the abstract claims: “The study suggests that the lightning process is a promising and safe intervention for symptoms of long COVID. Primary care clinicians can refer patients for treatment with a high chance of benefit without fear of harm.”
In response to the study, the ME Association alerted readers on its Facebook page that the 2021 ME/CFS guidelines from the National Institute for Health and Care Excellence warn against the LP. The problems with the paper have also been discussed on a thread at the Science for ME forum and in cogent comments posted on PubPeer.
Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic critera for ME/CFS? Who knows? It is impossible to tell.
The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.
Another point: Although the paper is confusing in parts, it appears that 20 Long Covid patients had completed the LP with the practitioner, but only 12 of them “were contactable.” What does that mean, exactly? It’s not clear from the paper’s explanation of its methodology. Presumably, most or all of the eight who were classed as not contactable didn’t want to be contacted or participate in the study. So one could argue that the baseline number of LP participants with Long Covid is really not 12, but 20—with eight of them “lost-to-follow-up,” as this status is called in epidemiology.
Why would former LP clients choose not to participate in such a study? Some logical possibilities: they didn’t like the LP, they deteriorated after the LP, they thought the LP was a waste of money. The paper includes no discussion of this 40% drop-out rate, so we really have no idea what happened to them. But that big unknown undermines any sunny assertion that the study findings show the LP to be “safe and effective.”
**********
Bogus reasons for exempting study from ethical review
One striking aspect is that the Professor Arroll and his colleagues exempted the study from ethical review on the grounds that it was an “audit of clinical practice” rather than research. That’s nonsense. You don’t get to interview participants in person and make broad-based conclusions that an intervention is “safe and effective” in an audit. Professor Arroll should know that, given that he has previously written about his own experience of being accused of publishing “research” under the guise of a “clinical audit.”
New Zealand, like other countries, has official guidelines on the differences between “clinical audit,” which does not require ethical review, and “research,” which does. It is indisputable that this purported “audit” is research and required ethical review. That the authors unilaterally exempted it from such review is obviously unacceptable. Any competent peer review should have picked that up and rejected the paper on those grounds.
(Nina Steinkopf, a patient advocate in Norway, has tackled this issue in her most recent post on her blog, MElife. She has written to the journal editor to inform him that the paper constitutes research, not an audit.)
Here are some other issues with this paper.
In the introduction, the authors declare that the LP has “a developing evidence base for efficacy, particularly for CFS/ME.” It is worth noting that the reference for this claim is an article published in something called the Journal of Experiential Psychotherapy. The lead author of the article was spiritual healer Parker himself. The journal is sponsored by the Romanian Society of Experiential Psychology in cooperation with the Faculty of Psychology and Educational Sciences at the University of Bucharest. Professor Arroll and LP fans are of course free to consider this journal a top-notch and reputable venue. I do not share that opinion.
Here is how the Journal of Experiential Psychotherapy describes itself: “The journal valorizes and releases studies, original research, Romanian and international scientific contributions in the field of personal development, experiential counseling and psychotherapy, therapy of unification (T.U.) – a Romanian humanistic-experiential method of standard and experiential psychodiagnosis, applied in the assistance offered to adults, children, couples, families, transgenerational relationships, organizations and communities.” Perhaps Romania is ripe for more LP practitioners!
Moving on, the article refers to “a high‑quality RCT [randomized controlled trial] from the Bristol Clinical Trial Unit showing benefit in adolescents with chronic fatigue.” This reference is to the trial from Professor Crawley, Bristol University’s now-retired methodologically and ethically challenged pediatrician and former grant queen. The trial in question was fraudulent and should have been retracted; instead, it carries a 3,000-word correction/clarification, and a 1,000-word editorial statement that explains the tortured logic used to decide not to retract it.
Strikingly, Professor Arroll and his co-authors contradict themselves in the paper’s two last paragraphs, In the final paragraph of the discussion, they note that “it is impossible to generalize our study findings to a broader group of patients because of the small sample size and restricted demographic variation.” That disclaimer notwithstanding, here’s what they write in the next paragraph, which constitutes the paper’s conclusion: “Primary care clinicians can be assured that this is likely to be a safe and effective intervention.”
In other words, they have generalized their inflated and biased findings to all patients with Long Covid that a primary care clinician might encounter—despite their own admonishment against doing so. The whole thing would be laughable if it weren’t so pathetic.
-
New Hyped-Up Lightning Process Study from New Zealand
By David Tuller, DrPH
In January, the Journal of Family Medicine and Primary Care published a paper from New Zealand called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” It reads like a Lightning Process marketing effort cosplaying as an academic study.
As a reminder, the LP is a mish-mash of, among other approaches, neurolinguistic programming, positive affirmations, relaxation and meditative strategies, and osteopathy, delivered over the course of three days. It was created by British osteopath and spiritual healer Phil Parker, who had previously reported that he had “developed this ability to step into other people’s bodies… to assist them in their healing with amazing results.” Parker also co-led a spiritual healing course that included modules on Tarot reading, diagnosis by aura, and related psychic-therapeutic modalities.
In the LP, participants are dissuaded from acknowledging ongoing pain and suffering. The intervention trains them to make only optimistic and uplifting statements about how they feel; that is the essence of the LP. Doing the opposite essentially means you’ve failed the program. Given such a strategy, it is challenging to assess subjective statements about success from LP participants.
(I wrote about the LP for Codastory.com in 2021, and in multiple blog posts over the years. I also exposed Professor Esther Crawley’s 2018 pediatric trial of the LP as an example of research misconduct.)
The lead author of this new paper is Professor Bruce Arroll, a general practitioner and Lightning Process devotee at the University of Auckland, in New Zealand. In a 2023 treatment guide for ME/CFS, Professor Arroll recommended the LP, along with CBT and GET. He is one of several co-signers of a statement posted on the LP site and titled “Support for the Evidence-Based Research on the Lightning Process: A Letter from Academics and Medical Professionals.”
The new paper involved retrospective interviews with 12 participants who underwent the LP for Long Covid with a woman said to be New Zealand’s sole full-time practitioner. Here’s what the abstract claims: “The study suggests that the lightning process is a promising and safe intervention for symptoms of long COVID. Primary care clinicians can refer patients for treatment with a high chance of benefit without fear of harm.”
In response to the study, the ME Association alerted readers on its Facebook page that the 2021 ME/CFS guidelines from the National Institute for Health and Care Excellence warn against the LP. The problems with the paper have also been discussed on a thread at the Science for ME forum and in cogent comments posted on PubPeer.
Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic critera for ME/CFS? Who knows? It is impossible to tell.
The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.
Another point: Although the paper is confusing in parts, it appears that 20 Long Covid patients had completed the LP with the practitioner, but only 12 of them “were contactable.” What does that mean, exactly? It’s not clear from the paper’s explanation of its methodology. Presumably, most or all of the eight who were classed as not contactable didn’t want to be contacted or participate in the study. So one could argue that the baseline number of LP participants with Long Covid is really not 12, but 20—with eight of them “lost-to-follow-up,” as this status is called in epidemiology.
Why would former LP clients choose not to participate in such a study? Some logical possibilities: they didn’t like the LP, they deteriorated after the LP, they thought the LP was a waste of money. The paper includes no discussion of this 40% drop-out rate, so we really have no idea what happened to them. But that big unknown undermines any sunny assertion that the study findings show the LP to be “safe and effective.”
**********
Bogus reasons for exempting study from ethical review
One striking aspect is that the Professor Arroll and his colleagues exempted the study from ethical review on the grounds that it was an “audit of clinical practice” rather than research. That’s nonsense. You don’t get to interview participants in person and make broad-based conclusions that an intervention is “safe and effective” in an audit. Professor Arroll should know that, given that he has previously written about his own experience of being accused of publishing “research” under the guise of a “clinical audit.”
New Zealand, like other countries, has official guidelines on the differences between “clinical audit,” which does not require ethical review, and “research,” which does. It is indisputable that this purported “audit” is research and required ethical review. That the authors unilaterally exempted it from such review is obviously unacceptable. Any competent peer review should have picked that up and rejected the paper on those grounds.
(Nina Steinkopf, a patient advocate in Norway, has tackled this issue in her most recent post on her blog, MElife. She has written to the journal editor to inform him that the paper constitutes research, not an audit.)
Here are some other issues with this paper.
In the introduction, the authors declare that the LP has “a developing evidence base for efficacy, particularly for CFS/ME.” It is worth noting that the reference for this claim is an article published in something called the Journal of Experiential Psychotherapy. The lead author of the article was spiritual healer Parker himself. The journal is sponsored by the Romanian Society of Experiential Psychology in cooperation with the Faculty of Psychology and Educational Sciences at the University of Bucharest. Professor Arroll and LP fans are of course free to consider this journal a top-notch and reputable venue. I do not share that opinion.
Here is how the Journal of Experiential Psychotherapy describes itself: “The journal valorizes and releases studies, original research, Romanian and international scientific contributions in the field of personal development, experiential counseling and psychotherapy, therapy of unification (T.U.) – a Romanian humanistic-experiential method of standard and experiential psychodiagnosis, applied in the assistance offered to adults, children, couples, families, transgenerational relationships, organizations and communities.” Perhaps Romania is ripe for more LP practitioners!
Moving on, the article refers to “a high‑quality RCT [randomized controlled trial] from the Bristol Clinical Trial Unit showing benefit in adolescents with chronic fatigue.” This reference is to the trial from Professor Crawley, Bristol University’s now-retired methodologically and ethically challenged pediatrician and former grant queen. The trial in question was fraudulent and should have been retracted; instead, it carries a 3,000-word correction/clarification, and a 1,000-word editorial statement that explains the tortured logic used to decide not to retract it.
Strikingly, Professor Arroll and his co-authors contradict themselves in the paper’s two last paragraphs, In the final paragraph of the discussion, they note that “it is impossible to generalize our study findings to a broader group of patients because of the small sample size and restricted demographic variation.” That disclaimer notwithstanding, here’s what they write in the next paragraph, which constitutes the paper’s conclusion: “Primary care clinicians can be assured that this is likely to be a safe and effective intervention.”
In other words, they have generalized their inflated and biased findings to all patients with Long Covid that a primary care clinician might encounter—despite their own admonishment against doing so. The whole thing would be laughable if it weren’t so pathetic.
-
New Hyped-Up Lightning Process Study from New Zealand
By David Tuller, DrPH
In January, the Journal of Family Medicine and Primary Care published a paper from New Zealand called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” It reads like a Lightning Process marketing effort cosplaying as an academic study.
As a reminder, the LP is a mish-mash of, among other approaches, neurolinguistic programming, positive affirmations, relaxation and meditative strategies, and osteopathy, delivered over the course of three days. It was created by British osteopath and spiritual healer Phil Parker, who had previously reported that he had “developed this ability to step into other people’s bodies… to assist them in their healing with amazing results.” Parker also co-led a spiritual healing course that included modules on Tarot reading, diagnosis by aura, and related psychic-therapeutic modalities.
In the LP, participants are dissuaded from acknowledging ongoing pain and suffering. The intervention trains them to make only optimistic and uplifting statements about how they feel; that is the essence of the LP. Doing the opposite essentially means you’ve failed the program. Given such a strategy, it is challenging to assess subjective statements about success from LP participants.
(I wrote about the LP for Codastory.com in 2021, and in multiple blog posts over the years. I also exposed Professor Esther Crawley’s 2018 pediatric trial of the LP as an example of research misconduct.)
The lead author of this new paper is Professor Bruce Arroll, a general practitioner and Lightning Process devotee at the University of Auckland, in New Zealand. In a 2023 treatment guide for ME/CFS, Professor Arroll recommended the LP, along with CBT and GET. He is one of several co-signers of a statement posted on the LP site and titled “Support for the Evidence-Based Research on the Lightning Process: A Letter from Academics and Medical Professionals.”
The new paper involved retrospective interviews with 12 participants who underwent the LP for Long Covid with a woman said to be New Zealand’s sole full-time practitioner. Here’s what the abstract claims: “The study suggests that the lightning process is a promising and safe intervention for symptoms of long COVID. Primary care clinicians can refer patients for treatment with a high chance of benefit without fear of harm.”
In response to the study, the ME Association alerted readers on its Facebook page that the 2021 ME/CFS guidelines from the National Institute for Health and Care Excellence warn against the LP. The problems with the paper have also been discussed on a thread at the Science for ME forum and in cogent comments posted on PubPeer.
Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic critera for ME/CFS? Who knows? It is impossible to tell.
The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.
Another point: Although the paper is confusing in parts, it appears that 20 Long Covid patients had completed the LP with the practitioner, but only 12 of them “were contactable.” What does that mean, exactly? It’s not clear from the paper’s explanation of its methodology. Presumably, most or all of the eight who were classed as not contactable didn’t want to be contacted or participate in the study. So one could argue that the baseline number of LP participants with Long Covid is really not 12, but 20—with eight of them “lost-to-follow-up,” as this status is called in epidemiology.
Why would former LP clients choose not to participate in such a study? Some logical possibilities: they didn’t like the LP, they deteriorated after the LP, they thought the LP was a waste of money. The paper includes no discussion of this 40% drop-out rate, so we really have no idea what happened to them. But that big unknown undermines any sunny assertion that the study findings show the LP to be “safe and effective.”
**********
Bogus reasons for exempting study from ethical review
One striking aspect is that the Professor Arroll and his colleagues exempted the study from ethical review on the grounds that it was an “audit of clinical practice” rather than research. That’s nonsense. You don’t get to interview participants in person and make broad-based conclusions that an intervention is “safe and effective” in an audit. Professor Arroll should know that, given that he has previously written about his own experience of being accused of publishing “research” under the guise of a “clinical audit.”
New Zealand, like other countries, has official guidelines on the differences between “clinical audit,” which does not require ethical review, and “research,” which does. It is indisputable that this purported “audit” is research and required ethical review. That the authors unilaterally exempted it from such review is obviously unacceptable. Any competent peer review should have picked that up and rejected the paper on those grounds.
(Nina Steinkopf, a patient advocate in Norway, has tackled this issue in her most recent post on her blog, MElife. She has written to the journal editor to inform him that the paper constitutes research, not an audit.)
Here are some other issues with this paper.
In the introduction, the authors declare that the LP has “a developing evidence base for efficacy, particularly for CFS/ME.” It is worth noting that the reference for this claim is an article published in something called the Journal of Experiential Psychotherapy. The lead author of the article was spiritual healer Parker himself. The journal is sponsored by the Romanian Society of Experiential Psychology in cooperation with the Faculty of Psychology and Educational Sciences at the University of Bucharest. Professor Arroll and LP fans are of course free to consider this journal a top-notch and reputable venue. I do not share that opinion.
Here is how the Journal of Experiential Psychotherapy describes itself: “The journal valorizes and releases studies, original research, Romanian and international scientific contributions in the field of personal development, experiential counseling and psychotherapy, therapy of unification (T.U.) – a Romanian humanistic-experiential method of standard and experiential psychodiagnosis, applied in the assistance offered to adults, children, couples, families, transgenerational relationships, organizations and communities.” Perhaps Romania is ripe for more LP practitioners!
Moving on, the article refers to “a high‑quality RCT [randomized controlled trial] from the Bristol Clinical Trial Unit showing benefit in adolescents with chronic fatigue.” This reference is to the trial from Professor Crawley, Bristol University’s now-retired methodologically and ethically challenged pediatrician and former grant queen. The trial in question was fraudulent and should have been retracted; instead, it carries a 3,000-word correction/clarification, and a 1,000-word editorial statement that explains the tortured logic used to decide not to retract it.
Strikingly, Professor Arroll and his co-authors contradict themselves in the paper’s two last paragraphs, In the final paragraph of the discussion, they note that “it is impossible to generalize our study findings to a broader group of patients because of the small sample size and restricted demographic variation.” That disclaimer notwithstanding, here’s what they write in the next paragraph, which constitutes the paper’s conclusion: “Primary care clinicians can be assured that this is likely to be a safe and effective intervention.”
In other words, they have generalized their inflated and biased findings to all patients with Long Covid that a primary care clinician might encounter—despite their own admonishment against doing so. The whole thing would be laughable if it weren’t so pathetic.
-
By David Tuller, DrPH
Oonagh Cousins, a world-class rower who once dreamed of representing Great Britain in the Olympics, got sick early in the pandemic and has been suffering from Long Covid ever since. Her story was first covered by the BBC in November, 2020. A BBC article last year covered how her condition had “crushed her Olympic dream.” Earlier this year, a BBC investigation of the woo-woo intervention called the Lightning Process also featured Cousins, who had tried it and believed it was “exploiting people,” as she told the reporters. I wanted to hear a bit more about Cousins’ experiences as well as what she’s up to now. We spoke earlier this week.
https://trialbyerror.org/2024/06/21/athlete-oonagh-cousins-on-the-lightning-process/
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By David Tuller, DrPH
Oonagh Cousins, a world-class rower who once dreamed of representing Great Britain in the Olympics, got sick early in the pandemic and has been suffering from Long Covid ever since. Her story was first covered by the BBC in November, 2020. A BBC article last year covered how her condition had “crushed her Olympic dream.” Earlier this year, a BBC investigation of the woo-woo intervention called the Lightning Process also featured Cousins, who had tried it and believed it was “exploiting people,” as she told the reporters. I wanted to hear a bit more about Cousins’ experiences as well as what she’s up to now. We spoke earlier this week.
https://trialbyerror.org/2024/06/21/athlete-oonagh-cousins-on-the-lightning-process/
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By David Tuller, DrPH
Oonagh Cousins, a world-class rower who once dreamed of representing Great Britain in the Olympics, got sick early in the pandemic and has been suffering from Long Covid ever since. Her story was first covered by the BBC in November, 2020. A BBC article last year covered how her condition had “crushed her Olympic dream.” Earlier this year, a BBC investigation of the woo-woo intervention called the Lightning Process also featured Cousins, who had tried it and believed it was “exploiting people,” as she told the reporters. I wanted to hear a bit more about Cousins’ experiences as well as what she’s up to now. We spoke earlier this week.
https://trialbyerror.org/2024/06/21/athlete-oonagh-cousins-on-the-lightning-process/
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By David Tuller, DrPH
Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and long-time grant magnet, gave up her right to practice medicine last September, according to her current entry at the UK’s General Medical Council, which oversees the registration of physicians. The entry does not offer an explanation for why Professor Crawley decided to relinquish her registration and stop treating patients at a much younger age than is standard for retirement.
Professor Crawley qualified as a physician at Oxford University in 1991. She is apparently in her 50s, likely her mid-50s.
Her departure from clinical practice is great news for families with kids suffering from ME/CFS–and now Long Covid. Professor Crawley has been the most influential pediatrician in the field of what she long called “chronic fatigue syndrome,” or more recently “CFS/ME.” She was a gusher of misinformation, publishing seriously flawed and sometimes fraudulent research at a prolific rate. She called PACE a “great, great” trial.
Both publicly and behind the scenes, she wielded her significant power to aggressively push the notion that children with ME/CFS needed graded exercise therapy (GET) and/or cognitive behavior therapy. She failed to change her views even in the face of widespread protests from parents that forcing their kids to do more made them worse. As news of her retirement sinks in, I hope that those who once whispered her name with fear will feel able to openly discuss the clinical reign of terror she appeared to impose on vulnerable families and children.
Is she still at the University of Bristol? That’s not clear. It appears that she might have retired from there as well. She does not appear in the current staff directory at the university’s Centre for Academic Child Health, with which she had a longtime affiliation. On the centre’s site for the MAGENTA study, a major trial of GET compared to activity management in kids with “CFS/ME,” Professor Crawley is still listed as the “chief investigator.” But clicking the link on her name yields a screen with this advisory: “Page not found.”
The MAGENTA results were published in March and were a disaster for Professor Crawley’s longtime assertion that GET was an effective treatment. She was listed as the second-to-last author, not the senior and corresponding author—an apparent indication of the change in her status. Here is the blunt conclusion from the abstract: “There was no evidence that GET was more effective or cost-effective than AM [activity management] in this setting, with very limited improvement in either study group evident by the 6-month or 12-month assessment points.” Oops!!!
The MAGENTA paper was submitted to the European Journal of Pediatrics on October 5, 2023, which was shortly after Professor Crawley relinquished her right to practice medicine. She presumably had known for a while of these humiliating findings. Whether or not these events are conneted, the MAGENTA conclusions pretty much upend much of what Professor Crawley has claimed for years.
Another recently published paper from investigators at Bristol’s Centre for Academic Child Health, a protocol for a study of children with rare genetic disorders, included the following statement in its acknowledgments section: “The…study was originally conceptualised with significant mentorship and guidance from Professor Esther Crawley who has now retired. We thank her for her significant contribution to the concept of the GenROC study.”
That certainly sounds like it is referring to retirement from the university, not retirement from medical practice. It has been noted in the last year or so that Professor Crawley has been unusually quiet and absent from the public debate. Now it seems that she’s…gone. Really. Just gone. Perhaps at some point we will find out why.
Professor Crawley’s scholarly record carries some big black marks. I pride myself on those, since they were the result of my investigations into her work. (These were themselves prompted by insights from an observant source.)
Professor Crawley’s clinical trial of the woo-woo mind-body intervention known as the Lightning Process was clearly fraudulent. Archives of Disease in Childhood, a BMJ journal, should never have published it. And once I presented the journal with the facts, the study should have been retracted. Professor Crawley’s paper described the research as fully prospective when, as it turned out, 56% of the participants were recruited before trial registration, and primary and secondary outcome measures were swapped mid-way through. The article now carries a 3,000-word correction, along with a 1,000-word editor’s note defending the journal’s indefensible decision to republish the original findings.
My complaints to the UK’s Health Research Authority, a branch of the National Health Service, about a set of Professor Crawley’s studies led to an investigation of her work conducted jointly by the agency and Bristol University. Professor Crawley had unilaterally exempted all these studies from ethical review based on a letter from a research ethics committee that had nothing to do with any of them. Every experienced researcher knows–or should know–that this is not allowed. As a result of the investigation, Professor Crawley was ordered to make corrections in the ethics statements of 11 papers. Although the report–absurdly in my view–held her blameless for these errors, it was nonetheless an embarassing public rebuke of her approach to research.
Then there was Professor Crawley’s public claim that I had written “libellous blogs” and Bristol University’s multiple complaints to UC Berkeley’s chancellor about my “behaviour.” My “behaviour” basically consisted of writing harsh (and sometimes flamboyantly harsh) comments about Professor Crawley’s sub-standard and ultimately harmful work. The UC Berkeley chancellor’s office could not really understand the complaints or figure out what Bristol expected them to do.
But more on that later. It’s enough for now to appreciate the moment. I hope and assume many people will have a lot to say about Professor Crawley and her impact on their lives now that she seems to be out of the picture.
#Bristol #Crawley #HealthResearchAuthority #LightningProcess
-
By David Tuller, DrPH
Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and long-time grant magnet, gave up her right to practice medicine last September, according to her current entry at the UK’s General Medical Council, which oversees the registration of physicians. The entry does not offer an explanation for why Professor Crawley decided to relinquish her registration and stop treating patients at a much younger age than is standard for retirement.
Professor Crawley qualified as a physician at Oxford University in 1991. She is apparently in her 50s, likely her mid-50s.
Her departure from clinical practice is great news for families with kids suffering from ME/CFS–and now Long Covid. Professor Crawley has been the most influential pediatrician in the field of what she long called “chronic fatigue syndrome,” or more recently “CFS/ME.” She was a gusher of misinformation, publishing seriously flawed and sometimes fraudulent research at a prolific rate. She called PACE a “great, great” trial.
Both publicly and behind the scenes, she wielded her significant power to aggressively push the notion that children with ME/CFS needed graded exercise therapy (GET) and/or cognitive behavior therapy. She failed to change her views even in the face of widespread protests from parents that forcing their kids to do more made them worse. As news of her retirement sinks in, I hope that those who once whispered her name with fear will feel able to openly discuss the clinical reign of terror she appeared to impose on vulnerable families and children.
Is she still at the University of Bristol? That’s not clear. It appears that she might have retired from there as well. She does not appear in the current staff directory at the university’s Centre for Academic Child Health, with which she had a longtime affiliation. On the centre’s site for the MAGENTA study, a major trial of GET compared to activity management in kids with “CFS/ME,” Professor Crawley is still listed as the “chief investigator.” But clicking the link on her name yields a screen with this advisory: “Page not found.”
The MAGENTA results were published in March and were a disaster for Professor Crawley’s longtime assertion that GET was an effective treatment. She was listed as the second-to-last author, not the senior and corresponding author—an apparent indication of the change in her status. Here is the blunt conclusion from the abstract: “There was no evidence that GET was more effective or cost-effective than AM [activity management] in this setting, with very limited improvement in either study group evident by the 6-month or 12-month assessment points.” Oops!!!
The MAGENTA paper was submitted to the European Journal of Pediatrics on October 5, 2023, which was shortly after Professor Crawley relinquished her right to practice medicine. She presumably had known for a while of these humiliating findings. Whether or not these events are conneted, the MAGENTA conclusions pretty much upend much of what Professor Crawley has claimed for years.
Another recently published paper from investigators at Bristol’s Centre for Academic Child Health, a protocol for a study of children with rare genetic disorders, included the following statement in its acknowledgments section: “The…study was originally conceptualised with significant mentorship and guidance from Professor Esther Crawley who has now retired. We thank her for her significant contribution to the concept of the GenROC study.”
That certainly sounds like it is referring to retirement from the university, not retirement from medical practice. It has been noted in the last year or so that Professor Crawley has been unusually quiet and absent from the public debate. Now it seems that she’s…gone. Really. Just gone. Perhaps at some point we will find out why.
Professor Crawley’s scholarly record carries some big black marks. I pride myself on those, since they were the result of my investigations into her work. (These were themselves prompted by insights from an observant source.)
Professor Crawley’s clinical trial of the woo-woo mind-body intervention known as the Lightning Process was clearly fraudulent. Archives of Disease in Childhood, a BMJ journal, should never have published it. And once I presented the journal with the facts, the study should have been retracted. Professor Crawley’s paper described the research as fully prospective when, as it turned out, 56% of the participants were recruited before trial registration, and primary and secondary outcome measures were swapped mid-way through. The article now carries a 3,000-word correction, along with a 1,000-word editor’s note defending the journal’s indefensible decision to republish the original findings.
My complaints to the UK’s Health Research Authority, a branch of the National Health Service, about a set of Professor Crawley’s studies led to an investigation of her work conducted jointly by the agency and Bristol University. Professor Crawley had unilaterally exempted all these studies from ethical review based on a letter from a research ethics committee that had nothing to do with any of them. Every experienced researcher knows–or should know–that this is not allowed. As a result of the investigation, Professor Crawley was ordered to make corrections in the ethics statements of 11 papers. Although the report–absurdly in my view–held her blameless for these errors, it was nonetheless an embarassing public rebuke of her approach to research.
Then there was Professor Crawley’s public claim that I had written “libellous blogs” and Bristol University’s multiple complaints to UC Berkeley’s chancellor about my “behaviour.” My “behaviour” basically consisted of writing harsh (and sometimes flamboyantly harsh) comments about Professor Crawley’s sub-standard and ultimately harmful work. The UC Berkeley chancellor’s office could not really understand the complaints or figure out what Bristol expected them to do.
But more on that later. It’s enough for now to appreciate the moment. I hope and assume many people will have a lot to say about Professor Crawley and her impact on their lives now that she seems to be out of the picture.
#Bristol #Crawley #HealthResearchAuthority #LightningProcess
-
By David Tuller, DrPH
Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and long-time grant magnet, gave up her right to practice medicine last September, according to her current entry at the UK’s General Medical Council, which oversees the registration of physicians. The entry does not offer an explanation for why Professor Crawley decided to relinquish her registration and stop treating patients at a much younger age than is standard for retirement.
Professor Crawley qualified as a physician at Oxford University in 1991. She is apparently in her 50s, likely her mid-50s.
Her departure from clinical practice is great news for families with kids suffering from ME/CFS–and now Long Covid. Professor Crawley has been the most influential pediatrician in the field of what she long called “chronic fatigue syndrome,” or more recently “CFS/ME.” She was a gusher of misinformation, publishing seriously flawed and sometimes fraudulent research at a prolific rate. She called PACE a “great, great” trial.
Both publicly and behind the scenes, she wielded her significant power to aggressively push the notion that children with ME/CFS needed graded exercise therapy (GET) and/or cognitive behavior therapy. She failed to change her views even in the face of widespread protests from parents that forcing their kids to do more made them worse. As news of her retirement sinks in, I hope that those who once whispered her name with fear will feel able to openly discuss the clinical reign of terror she appeared to impose on vulnerable families and children.
Is she still at the University of Bristol? That’s not clear. It appears that she might have retired from there as well. She does not appear in the current staff directory at the university’s Centre for Academic Child Health, with which she had a longtime affiliation. On the centre’s site for the MAGENTA study, a major trial of GET compared to activity management in kids with “CFS/ME,” Professor Crawley is still listed as the “chief investigator.” But clicking the link on her name yields a screen with this advisory: “Page not found.”
The MAGENTA results were published in March and were a disaster for Professor Crawley’s longtime assertion that GET was an effective treatment. She was listed as the second-to-last author, not the senior and corresponding author—an apparent indication of the change in her status. Here is the blunt conclusion from the abstract: “There was no evidence that GET was more effective or cost-effective than AM [activity management] in this setting, with very limited improvement in either study group evident by the 6-month or 12-month assessment points.” Oops!!!
The MAGENTA paper was submitted to the European Journal of Pediatrics on October 5, 2023, which was shortly after Professor Crawley relinquished her right to practice medicine. She presumably had known for a while of these humiliating findings. Whether or not these events are conneted, the MAGENTA conclusions pretty much upend much of what Professor Crawley has claimed for years.
Another recently published paper from investigators at Bristol’s Centre for Academic Child Health, a protocol for a study of children with rare genetic disorders, included the following statement in its acknowledgments section: “The…study was originally conceptualised with significant mentorship and guidance from Professor Esther Crawley who has now retired. We thank her for her significant contribution to the concept of the GenROC study.”
That certainly sounds like it is referring to retirement from the university, not retirement from medical practice. It has been noted in the last year or so that Professor Crawley has been unusually quiet and absent from the public debate. Now it seems that she’s…gone. Really. Just gone. Perhaps at some point we will find out why.
Professor Crawley’s scholarly record carries some big black marks. I pride myself on those, since they were the result of my investigations into her work. (These were themselves prompted by insights from an observant source.)
Professor Crawley’s clinical trial of the woo-woo mind-body intervention known as the Lightning Process was clearly fraudulent. Archives of Disease in Childhood, a BMJ journal, should never have published it. And once I presented the journal with the facts, the study should have been retracted. Professor Crawley’s paper described the research as fully prospective when, as it turned out, 56% of the participants were recruited before trial registration, and primary and secondary outcome measures were swapped mid-way through. The article now carries a 3,000-word correction, along with a 1,000-word editor’s note defending the journal’s indefensible decision to republish the original findings.
My complaints to the UK’s Health Research Authority, a branch of the National Health Service, about a set of Professor Crawley’s studies led to an investigation of her work conducted jointly by the agency and Bristol University. Professor Crawley had unilaterally exempted all these studies from ethical review based on a letter from a research ethics committee that had nothing to do with any of them. Every experienced researcher knows–or should know–that this is not allowed. As a result of the investigation, Professor Crawley was ordered to make corrections in the ethics statements of 11 papers. Although the report–absurdly in my view–held her blameless for these errors, it was nonetheless an embarassing public rebuke of her approach to research.
Then there was Professor Crawley’s public claim that I had written “libellous blogs” and Bristol University’s multiple complaints to UC Berkeley’s chancellor about my “behaviour.” My “behaviour” basically consisted of writing harsh (and sometimes flamboyantly harsh) comments about Professor Crawley’s sub-standard and ultimately harmful work. The UC Berkeley chancellor’s office could not really understand the complaints or figure out what Bristol expected them to do.
But more on that later. It’s enough for now to appreciate the moment. I hope and assume many people will have a lot to say about Professor Crawley and her impact on their lives now that she seems to be out of the picture.
#Bristol #Crawley #HealthResearchAuthority #LightningProcess
-
By David Tuller, DrPH
Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and long-time grant magnet, gave up her right to practice medicine last September, according to her current entry at the UK’s General Medical Council, which oversees the registration of physicians. The entry does not offer an explanation for why Professor Crawley decided to relinquish her registration and stop treating patients at a much younger age than is standard for retirement.
Professor Crawley qualified as a physician at Oxford University in 1991. She is apparently in her 50s, likely her mid-50s.
Her departure from clinical practice is great news for families with kids suffering from ME/CFS–and now Long Covid. Professor Crawley has been the most influential pediatrician in the field of what she long called “chronic fatigue syndrome,” or more recently “CFS/ME.” She was a gusher of misinformation, publishing seriously flawed and sometimes fraudulent research at a prolific rate. She called PACE a “great, great” trial.
Both publicly and behind the scenes, she wielded her significant power to aggressively push the notion that children with ME/CFS needed graded exercise therapy (GET) and/or cognitive behavior therapy. She failed to change her views even in the face of widespread protests from parents that forcing their kids to do more made them worse. As news of her retirement sinks in, I hope that those who once whispered her name with fear will feel able to openly discuss the clinical reign of terror she appeared to impose on vulnerable families and children.
Is she still at the University of Bristol? That’s not clear. It appears that she might have retired from there as well. She does not appear in the current staff directory at the university’s Centre for Academic Child Health, with which she had a longtime affiliation. On the centre’s site for the MAGENTA study, a major trial of GET compared to activity management in kids with “CFS/ME,” Professor Crawley is still listed as the “chief investigator.” But clicking the link on her name yields a screen with this advisory: “Page not found.”
The MAGENTA results were published in March and were a disaster for Professor Crawley’s longtime assertion that GET was an effective treatment. She was listed as the second-to-last author, not the senior and corresponding author—an apparent indication of the change in her status. Here is the blunt conclusion from the abstract: “There was no evidence that GET was more effective or cost-effective than AM [activity management] in this setting, with very limited improvement in either study group evident by the 6-month or 12-month assessment points.” Oops!!!
The MAGENTA paper was submitted to the European Journal of Pediatrics on October 5, 2023, which was shortly after Professor Crawley relinquished her right to practice medicine. She presumably had known for a while of these humiliating findings. Whether or not these events are conneted, the MAGENTA conclusions pretty much upend much of what Professor Crawley has claimed for years.
Another recently published paper from investigators at Bristol’s Centre for Academic Child Health, a protocol for a study of children with rare genetic disorders, included the following statement in its acknowledgments section: “The…study was originally conceptualised with significant mentorship and guidance from Professor Esther Crawley who has now retired. We thank her for her significant contribution to the concept of the GenROC study.”
That certainly sounds like it is referring to retirement from the university, not retirement from medical practice. It has been noted in the last year or so that Professor Crawley has been unusually quiet and absent from the public debate. Now it seems that she’s…gone. Really. Just gone. Perhaps at some point we will find out why.
Professor Crawley’s scholarly record carries some big black marks. I pride myself on those, since they were the result of my investigations into her work. (These were themselves prompted by insights from an observant source.)
Professor Crawley’s clinical trial of the woo-woo mind-body intervention known as the Lightning Process was clearly fraudulent. Archives of Disease in Childhood, a BMJ journal, should never have published it. And once I presented the journal with the facts, the study should have been retracted. Professor Crawley’s paper described the research as fully prospective when, as it turned out, 56% of the participants were recruited before trial registration, and primary and secondary outcome measures were swapped mid-way through. The article now carries a 3,000-word correction, along with a 1,000-word editor’s note defending the journal’s indefensible decision to republish the original findings.
My complaints to the UK’s Health Research Authority, a branch of the National Health Service, about a set of Professor Crawley’s studies led to an investigation of her work conducted jointly by the agency and Bristol University. Professor Crawley had unilaterally exempted all these studies from ethical review based on a letter from a research ethics committee that had nothing to do with any of them. Every experienced researcher knows–or should know–that this is not allowed. As a result of the investigation, Professor Crawley was ordered to make corrections in the ethics statements of 11 papers. Although the report–absurdly in my view–held her blameless for these errors, it was nonetheless an embarassing public rebuke of her approach to research.
Then there was Professor Crawley’s public claim that I had written “libellous blogs” and Bristol University’s multiple complaints to UC Berkeley’s chancellor about my “behaviour.” My “behaviour” basically consisted of writing harsh (and sometimes flamboyantly harsh) comments about Professor Crawley’s sub-standard and ultimately harmful work. The UC Berkeley chancellor’s office could not really understand the complaints or figure out what Bristol expected them to do.
But more on that later. It’s enough for now to appreciate the moment. I hope and assume many people will have a lot to say about Professor Crawley and her impact on their lives now that she seems to be out of the picture.
#Bristol #Crawley #HealthResearchAuthority #LightningProcess
-
By David Tuller, DrPH
Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and long-time grant magnet, gave up her right to practice medicine last September, according to her current entry at the UK’s General Medical Council, which oversees the registration of physicians. The entry does not offer an explanation for why Professor Crawley decided to relinquish her registration and stop treating patients at a much younger age than is standard for retirement.
Professor Crawley qualified as a physician at Oxford University in 1991. She is apparently in her 50s, likely her mid-50s.
Her departure from clinical practice is great news for families with kids suffering from ME/CFS–and now Long Covid. Professor Crawley has been the most influential pediatrician in the field of what she long called “chronic fatigue syndrome,” or more recently “CFS/ME.” She was a gusher of misinformation, publishing seriously flawed and sometimes fraudulent research at a prolific rate. She called PACE a “great, great” trial.
Both publicly and behind the scenes, she wielded her significant power to aggressively push the notion that children with ME/CFS needed graded exercise therapy (GET) and/or cognitive behavior therapy. She failed to change her views even in the face of widespread protests from parents that forcing their kids to do more made them worse. As news of her retirement sinks in, I hope that those who once whispered her name with fear will feel able to openly discuss the clinical reign of terror she appeared to impose on vulnerable families and children.
Is she still at the University of Bristol? That’s not clear. It appears that she might have retired from there as well. She does not appear in the current staff directory at the university’s Centre for Academic Child Health, with which she had a longtime affiliation. On the centre’s site for the MAGENTA study, a major trial of GET compared to activity management in kids with “CFS/ME,” Professor Crawley is still listed as the “chief investigator.” But clicking the link on her name yields a screen with this advisory: “Page not found.”
The MAGENTA results were published in March and were a disaster for Professor Crawley’s longtime assertion that GET was an effective treatment. She was listed as the second-to-last author, not the senior and corresponding author—an apparent indication of the change in her status. Here is the blunt conclusion from the abstract: “There was no evidence that GET was more effective or cost-effective than AM [activity management] in this setting, with very limited improvement in either study group evident by the 6-month or 12-month assessment points.” Oops!!!
The MAGENTA paper was submitted to the European Journal of Pediatrics on October 5, 2023, which was shortly after Professor Crawley relinquished her right to practice medicine. She presumably had known for a while of these humiliating findings. Whether or not these events are conneted, the MAGENTA conclusions pretty much upend much of what Professor Crawley has claimed for years.
Another recently published paper from investigators at Bristol’s Centre for Academic Child Health, a protocol for a study of children with rare genetic disorders, included the following statement in its acknowledgments section: “The…study was originally conceptualised with significant mentorship and guidance from Professor Esther Crawley who has now retired. We thank her for her significant contribution to the concept of the GenROC study.”
That certainly sounds like it is referring to retirement from the university, not retirement from medical practice. It has been noted in the last year or so that Professor Crawley has been unusually quiet and absent from the public debate. Now it seems that she’s…gone. Really. Just gone. Perhaps at some point we will find out why.
Professor Crawley’s scholarly record carries some big black marks. I pride myself on those, since they were the result of my investigations into her work. (These were themselves prompted by insights from an observant source.)
Professor Crawley’s clinical trial of the woo-woo mind-body intervention known as the Lightning Process was clearly fraudulent. Archives of Disease in Childhood, a BMJ journal, should never have published it. And once I presented the journal with the facts, the study should have been retracted. Professor Crawley’s paper described the research as fully prospective when, as it turned out, 56% of the participants were recruited before trial registration, and primary and secondary outcome measures were swapped mid-way through. The article now carries a 3,000-word correction, along with a 1,000-word editor’s note defending the journal’s indefensible decision to republish the original findings.
My complaints to the UK’s Health Research Authority, a branch of the National Health Service, about a set of Professor Crawley’s studies led to an investigation of her work conducted jointly by the agency and Bristol University. Professor Crawley had unilaterally exempted all these studies from ethical review based on a letter from a research ethics committee that had nothing to do with any of them. Every experienced researcher knows–or should know–that this is not allowed. As a result of the investigation, Professor Crawley was ordered to make corrections in the ethics statements of 11 papers. Although the report–absurdly in my view–held her blameless for these errors, it was nonetheless an embarassing public rebuke of her approach to research.
Then there was Professor Crawley’s public claim that I had written “libellous blogs” and Bristol University’s multiple complaints to UC Berkeley’s chancellor about my “behaviour.” My “behaviour” basically consisted of writing harsh (and sometimes flamboyantly harsh) comments about Professor Crawley’s sub-standard and ultimately harmful work. The UC Berkeley chancellor’s office could not really understand the complaints or figure out what Bristol expected them to do.
But more on that later. It’s enough for now to appreciate the moment. I hope and assume many people will have a lot to say about Professor Crawley and her impact on their lives now that she seems to be out of the picture.
#Bristol #Crawley #HealthResearchAuthority #LightningProcess
-
By David Tuller, DrPH
For years, I have criticized the research purporting to prove that the Lightning Process, a three-day mind-body workshop that has claimed to be effective in curing ME/CFS and a host of other chronic illnesses. The largest study of the LP, conducted by the methodologically and ethical challenged Esther Crawley, a professor and pediatrician at the University of Bristol, claimed success but was, in fact, a fraudulent mess.
The trail should never have passed peer review; having been published, it should have been retracted. Because of my complaints, the study now carries a 3,000-word correction/clarification and a 1,000-word editor’s note explaining with tortured logic why it was republished rather than pulled down completely. The journal, Archives of Disease in Childhood, is in the BMJ staple. Its handling of this paper was a disgrace.
With the advent of Long Covid, LP practitioners began to claim that they could cure this emerging condition as well. Just like the claims about ME/CFS, this one is not supported by any serious evidence in the scientific literature. Nonetheless, there are multiple personal anecdotat accounts of patients who say they experienced dramatic recovery. Notably, the range of anecdotal accounts also includes stories from others who did not get any better or who got much wore.
On May 21st, the BBC released a 38-minute radio documentary and a text article about the Lightning Process and its claims regarding Long covid. The radio piece was part of the current affairs documentary series File on 4. The headline of the text article on the BBC’s page: “Long Covid course is ‘exploiting people’, says ex-GB rower.”
Here’s the written introduction to the radio piece:
“There are some two million people with long Covid in the UK – and most of them – around one and a half million – have symptoms that interfere with day to day activities. Fatigue, breathlessness, heart palpitations and severe dizziness are just some of the conditions people experience.
“Currently there’s no test for long covid and it could be years before we know for sure how best to treat the condition. This struggle to get help is leaving some very unwell people desperate – and willing to try anything to get better. There are treatments to wash your blood, high pressure oxygen chambers normally used by deep sea divers. A rainbow of supplements. All with varying degrees of evidence. And perhaps most strongly dividing opinion – programmes that claim to retrain long Covid patients’ brains to stop their symptoms. They say they can help people recover from illness by rewiring the brain using techniques to influence physical changes in the body. Rachel Schraer – the BBC’s health and disinformation correspondent – hears from people with long Covid who say the programmes didn’t work and in some cases made them feel worse. Others say they fully recovered.”
The BBC account describes the story of Oonagh Cousins, a world-class rower. Cousins had made the British Olympic rowing team for the cancelled 2020 Summer Olympics. By the time the event took place the following year, she had become debilitated by Long Covid. According to her account, she was offered free entry to participate in the Lightning Process, which usually costs around £1,000.
Presumably, the organizers of the Lightning Process course hoped that Cousins would appreciate the workshop, find that she had improved dramatically, and tout her experience publicly. That’s not how things worked out. In the documentary and the text article, Cousins blasts the Lightning Process. In a key section, she describes her experience:
“They were trying to suggest that I could think my way out of the symptoms, basically. And I disputed that entirely… I had a very clearly physical illness. And I felt that they were blaming my negative thought processes for why I was ill…They tried to point out that I had depression or anxiety. And I said ‘I’m not, I’m just very sick.’”
Shraer herself participated in an LP training and taped the goings-on, as the article describes;
“In secret recordings by the BBC, coaches can be heard telling patients that almost anyone can recover from long Covid by changing their thoughts, language and actions.
“Over three days on Zoom, the course taught the ritual that forms the basis of the programme. Every time you experience a symptom or negative thought, you say the word ‘stop.’ make a choice to avoid these symptoms and then do a positive visualisation of a time you felt well.
“You do this while walking around a piece of paper printed with symbols – a ritual the BBC was told to do as many as 50 times a day…
“The coach on the course we attended said ‘thoughts about your symptoms, your worry about whether it’s ever going to go – that’s what keeps the neurology going.’
“‘Being in those kind of thoughts is what’s maintaining your symptoms,’ the coach said. ‘They’re not caused by a physical thing any more.’”
Ok! Good to know that the LP therapist determined that there is no “physical thing” happening anymore! It’s all your thoughts!
In an interesting turn of phrase, Phil Parker, the osteopath and faith healer who created the Lightning Process, accused the BBC reporters of paying too much attention to “the anti-recovery activists.” I didn’t realize, of course, that pointing out the scientific flaws in expansive claims about a curative treatment was considered equivalent to membership in an “anti-recovery activism” movement—but there it is, straight from Phil Parker.
In considering anything that Parker says, I think it’s important to keep in mind that he had previously claimed he could step into people’s bodies in order to diagnose their medical ailments. If trashing the LP’s scientific claims makes me an “anti-recovery activist,” I guess I should own that insult proudly.
For the project, Shraer also interviewed Danny Altmann, an immunologist at Imperial College London; Camilla Nord, a neuroscientist at the University of Cambridge; and Binita Kane, a respiratory physician at University of Manchester. Also included, as a necessary component to ensure balance, was a fan of the LP—a patient who reported full recovery after taking the program. While these accounts of success are hard to explain based on the science, they still deserve a place in the LP narrative.
This was a well-done project. Kudos to Shraer and Paul Grant, her producer.
-
By David Tuller, DrPH
For years, I have criticized the research purporting to prove that the Lightning Process, a three-day mind-body workshop that has claimed to be effective in curing ME/CFS and a host of other chronic illnesses. The largest study of the LP, conducted by the methodologically and ethical challenged Esther Crawley, a professor and pediatrician at the University of Bristol, claimed success but was, in fact, a fraudulent mess.
The trail should never have passed peer review; having been published, it should have been retracted. Because of my complaints, the study now carries a 3,000-word correction/clarification and a 1,000-word editor’s note explaining with tortured logic why it was republished rather than pulled down completely. The journal, Archives of Disease in Childhood, is in the BMJ staple. Its handling of this paper was a disgrace.
With the advent of Long Covid, LP practitioners began to claim that they could cure this emerging condition as well. Just like the claims about ME/CFS, this one is not supported by any serious evidence in the scientific literature. Nonetheless, there are multiple personal anecdotat accounts of patients who say they experienced dramatic recovery. Notably, the range of anecdotal accounts also includes stories from others who did not get any better or who got much wore.
On May 21st, the BBC released a 38-minute radio documentary and a text article about the Lightning Process and its claims regarding Long covid. The radio piece was part of the current affairs documentary series File on 4. The headline of the text article on the BBC’s page: “Long Covid course is ‘exploiting people’, says ex-GB rower.”
Here’s the written introduction to the radio piece:
“There are some two million people with long Covid in the UK – and most of them – around one and a half million – have symptoms that interfere with day to day activities. Fatigue, breathlessness, heart palpitations and severe dizziness are just some of the conditions people experience.
“Currently there’s no test for long covid and it could be years before we know for sure how best to treat the condition. This struggle to get help is leaving some very unwell people desperate – and willing to try anything to get better. There are treatments to wash your blood, high pressure oxygen chambers normally used by deep sea divers. A rainbow of supplements. All with varying degrees of evidence. And perhaps most strongly dividing opinion – programmes that claim to retrain long Covid patients’ brains to stop their symptoms. They say they can help people recover from illness by rewiring the brain using techniques to influence physical changes in the body. Rachel Schraer – the BBC’s health and disinformation correspondent – hears from people with long Covid who say the programmes didn’t work and in some cases made them feel worse. Others say they fully recovered.”
The BBC account describes the story of Oonagh Cousins, a world-class rower. Cousins had made the British Olympic rowing team for the cancelled 2020 Summer Olympics. By the time the event took place the following year, she had become debilitated by Long Covid. According to her account, she was offered free entry to participate in the Lightning Process, which usually costs around £1,000.
Presumably, the organizers of the Lightning Process course hoped that Cousins would appreciate the workshop, find that she had improved dramatically, and tout her experience publicly. That’s not how things worked out. In the documentary and the text article, Cousins blasts the Lightning Process. In a key section, she describes her experience:
“They were trying to suggest that I could think my way out of the symptoms, basically. And I disputed that entirely… I had a very clearly physical illness. And I felt that they were blaming my negative thought processes for why I was ill…They tried to point out that I had depression or anxiety. And I said ‘I’m not, I’m just very sick.’”
Shraer herself participated in an LP training and taped the goings-on, as the article describes;
“In secret recordings by the BBC, coaches can be heard telling patients that almost anyone can recover from long Covid by changing their thoughts, language and actions.
“Over three days on Zoom, the course taught the ritual that forms the basis of the programme. Every time you experience a symptom or negative thought, you say the word ‘stop.’ make a choice to avoid these symptoms and then do a positive visualisation of a time you felt well.
“You do this while walking around a piece of paper printed with symbols – a ritual the BBC was told to do as many as 50 times a day…
“The coach on the course we attended said ‘thoughts about your symptoms, your worry about whether it’s ever going to go – that’s what keeps the neurology going.’
“‘Being in those kind of thoughts is what’s maintaining your symptoms,’ the coach said. ‘They’re not caused by a physical thing any more.’”
Ok! Good to know that the LP therapist determined that there is no “physical thing” happening anymore! It’s all your thoughts!
In an interesting turn of phrase, Phil Parker, the osteopath and faith healer who created the Lightning Process, accused the BBC reporters of paying too much attention to “the anti-recovery activists.” I didn’t realize, of course, that pointing out the scientific flaws in expansive claims about a curative treatment was considered equivalent to membership in an “anti-recovery activism” movement—but there it is, straight from Phil Parker.
In considering anything that Parker says, I think it’s important to keep in mind that he had previously claimed he could step into people’s bodies in order to diagnose their medical ailments. If trashing the LP’s scientific claims makes me an “anti-recovery activist,” I guess I should own that insult proudly.
For the project, Shraer also interviewed Danny Altmann, an immunologist at Imperial College London; Camilla Nord, a neuroscientist at the University of Cambridge; and Binita Kane, a respiratory physician at University of Manchester. Also included, as a necessary component to ensure balance, was a fan of the LP—a patient who reported full recovery after taking the program. While these accounts of success are hard to explain based on the science, they still deserve a place in the LP narrative.
This was a well-done project. Kudos to Shraer and Paul Grant, her producer.
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By David Tuller, DrPH
For years, I have criticized the research purporting to prove that the Lightning Process, a three-day mind-body workshop that has claimed to be effective in curing ME/CFS and a host of other chronic illnesses. The largest study of the LP, conducted by the methodologically and ethical challenged Esther Crawley, a professor and pediatrician at the University of Bristol, claimed success but was, in fact, a fraudulent mess.
The trail should never have passed peer review; having been published, it should have been retracted. Because of my complaints, the study now carries a 3,000-word correction/clarification and a 1,000-word editor’s note explaining with tortured logic why it was republished rather than pulled down completely. The journal, Archives of Disease in Childhood, is in the BMJ staple. Its handling of this paper was a disgrace.
With the advent of Long Covid, LP practitioners began to claim that they could cure this emerging condition as well. Just like the claims about ME/CFS, this one is not supported by any serious evidence in the scientific literature. Nonetheless, there are multiple personal anecdotat accounts of patients who say they experienced dramatic recovery. Notably, the range of anecdotal accounts also includes stories from others who did not get any better or who got much wore.
On May 21st, the BBC released a 38-minute radio documentary and a text article about the Lightning Process and its claims regarding Long covid. The radio piece was part of the current affairs documentary series File on 4. The headline of the text article on the BBC’s page: “Long Covid course is ‘exploiting people’, says ex-GB rower.”
Here’s the written introduction to the radio piece:
“There are some two million people with long Covid in the UK – and most of them – around one and a half million – have symptoms that interfere with day to day activities. Fatigue, breathlessness, heart palpitations and severe dizziness are just some of the conditions people experience.
“Currently there’s no test for long covid and it could be years before we know for sure how best to treat the condition. This struggle to get help is leaving some very unwell people desperate – and willing to try anything to get better. There are treatments to wash your blood, high pressure oxygen chambers normally used by deep sea divers. A rainbow of supplements. All with varying degrees of evidence. And perhaps most strongly dividing opinion – programmes that claim to retrain long Covid patients’ brains to stop their symptoms. They say they can help people recover from illness by rewiring the brain using techniques to influence physical changes in the body. Rachel Schraer – the BBC’s health and disinformation correspondent – hears from people with long Covid who say the programmes didn’t work and in some cases made them feel worse. Others say they fully recovered.”
The BBC account describes the story of Oonagh Cousins, a world-class rower. Cousins had made the British Olympic rowing team for the cancelled 2020 Summer Olympics. By the time the event took place the following year, she had become debilitated by Long Covid. According to her account, she was offered free entry to participate in the Lightning Process, which usually costs around £1,000.
Presumably, the organizers of the Lightning Process course hoped that Cousins would appreciate the workshop, find that she had improved dramatically, and tout her experience publicly. That’s not how things worked out. In the documentary and the text article, Cousins blasts the Lightning Process. In a key section, she describes her experience:
“They were trying to suggest that I could think my way out of the symptoms, basically. And I disputed that entirely… I had a very clearly physical illness. And I felt that they were blaming my negative thought processes for why I was ill…They tried to point out that I had depression or anxiety. And I said ‘I’m not, I’m just very sick.’”
Shraer herself participated in an LP training and taped the goings-on, as the article describes;
“In secret recordings by the BBC, coaches can be heard telling patients that almost anyone can recover from long Covid by changing their thoughts, language and actions.
“Over three days on Zoom, the course taught the ritual that forms the basis of the programme. Every time you experience a symptom or negative thought, you say the word ‘stop.’ make a choice to avoid these symptoms and then do a positive visualisation of a time you felt well.
“You do this while walking around a piece of paper printed with symbols – a ritual the BBC was told to do as many as 50 times a day…
“The coach on the course we attended said ‘thoughts about your symptoms, your worry about whether it’s ever going to go – that’s what keeps the neurology going.’
“‘Being in those kind of thoughts is what’s maintaining your symptoms,’ the coach said. ‘They’re not caused by a physical thing any more.’”
Ok! Good to know that the LP therapist determined that there is no “physical thing” happening anymore! It’s all your thoughts!
In an interesting turn of phrase, Phil Parker, the osteopath and faith healer who created the Lightning Process, accused the BBC reporters of paying too much attention to “the anti-recovery activists.” I didn’t realize, of course, that pointing out the scientific flaws in expansive claims about a curative treatment was considered equivalent to membership in an “anti-recovery activism” movement—but there it is, straight from Phil Parker.
In considering anything that Parker says, I think it’s important to keep in mind that he had previously claimed he could step into people’s bodies in order to diagnose their medical ailments. If trashing the LP’s scientific claims makes me an “anti-recovery activist,” I guess I should own that insult proudly.
For the project, Shraer also interviewed Danny Altmann, an immunologist at Imperial College London; Camilla Nord, a neuroscientist at the University of Cambridge; and Binita Kane, a respiratory physician at University of Manchester. Also included, as a necessary component to ensure balance, was a fan of the LP—a patient who reported full recovery after taking the program. While these accounts of success are hard to explain based on the science, they still deserve a place in the LP narrative.
This was a well-done project. Kudos to Shraer and Paul Grant, her producer.
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By David Tuller, DrPH
It is extremely dispiriting to have to respond to yet another wail of desperation from psychologizing dead-enders who have lost control of the narrative over the nature and treatment of ME/CFS and long Covid. This most recent screed, published last month in the Scandinavian Journal of Primary Health Care, has been written by a group calling itself the Oslo Chronic Fatigue Consortium—a collection of dozens of self-styled “experts” that includes Norway’s Lightning Process queen, Live Landmark. In other words, in this article, these folks have all linked themselves to a woo-woo “mind-body” intervention developed by British osteopath and spiritualist Phil Parker, who has claimed he can “step into other people’s bodies…to assist them in their healing with amazing results.” He also once co-led a course on the use of auras, Tarot cards and related approaches to achieve better health. (I’ve often wondered why, if these modalities were as helpful as claimed, why he bothered to with create the Lightning Process in the first place.)
In essence, Landmark’s presence as a co-signatory suggests that the Lightning Process is more or less equivalent to standard approaches like cognitive behavior therapy and graded exercise therapy. Whatever! (Do they all understand that the recent decision to remove a patient from Norway’s ongoing LP study because she dared to express concerns about the approach on social media is an admission that you have to commit to believing the process will work in order for it to actually work? Is that science?)
In paradigm shifts, those on the wrong end of the equation typically struggle to maintain their professional footing. This ultimately unsuccessful flailing for relevance, as I noted with my colleagues Brian Hughes and Steven Lubet in a recent essay for the health policy journal Health Affairs, often involves efforts to deflect attention away from the emerging science through the constant repetition of already debunked claims. By hitching their fates to a faith healer like Phil Parker, this group of losers has further doomed itself to obsolescence. It is rather astonishing to witness a group of well-regarded (by some) pooh-bahs engaging in this sort of intellectual self-immolation.
The article from the Oslo consortium is a hodge-podge of debunked arguments and evidence-free pronouncements. First, in an insult to patients and the scientific community, they refer to CFS/ME rather than ME/CFS and suggest that all forms of extended “fatigue”—including what they call “burnout”–are more or less the same condition. They dismiss the reality of post-exertional malaise (PEM) as a specific symptom for ME/CFS and long Covid, claiming that it “also occurs in patients with other diagnoses.” Strangely, the reference for this claim is the 2015 report from the US Institute of Medicine (now the National Academy of Medicine). In reality, this report rechristened PEM as “exertion intolerance” and reframed ME/CFS as “systemic exertion intolerance disease.” In other words, per the IOM report, PEM, or exertion intolerance, is a core characteristic of ME/CFS and is required for a diagnosis. It is hard to fathom why these people cite the IOM report to make the exact opposite point. Are they stupid, or just dishonest?
The Oslo consortium article also suggests that the prevailing “narrative” it seeks to refute presents “CFS/ME” as “incomprehensible and incurable.” This is a straw-person argument. No reasonable person, as far as I know, has claimed that ME/CFS—and by extension long Covid–is inherently “incomprehensible and incurable.” The argument made by patients and responsible scientists and clinicians is that these illnesses are not “curable” with current interventions based on unproven hypotheses attributing them to dysfunctional illness beliefs and unreasonable fears of activity. Certainly the scientists who recently published their significant findings of long Covid pathophysiological dysfunctions in the prestigious journal Nature do not remotely believe that this post-acute viral disease is “incomprehensible.” In fact, they have provided evidence that multiple etiological pathways are possibly or likely implicated in the devastating symptoms being reported by millions of people around the world.
And then there is this statement: “Patients do recover and get back to work, and patients can get help that improves their chances of recovery.” This is more nonsense that is contradicted by the data. I recently co-authored a paper that tracked the occupational outcomes from multiple CBT and GET studies of ME/CFs and found that claims of people getting back to work are bogus—completely untrue. And the data from the discredited and arguably fraudulent PACE trial, when re-analyzed according to the outcomes described in the protocol, documented that there were no differences in “recovery” rates between the CBT and GET groups and the non-intervention arms. “Recovery” rates for all groups were in the single digits. (Disclosure: I was a co-author of this reanalysis.)
Perhaps the most ridiculous point made by the Oslo consortium is that their proposed approach somehow represents a “new perspective.” Anyone who has followed this debate knows that this statement is preposterous. The CBT/GET approach has dominated the field and scooped up the lion’s share of research funding for more than three decades—a fact that these authors would prefer to ignore. In other words, they have had their chance to make their case, but they have failed miserably. The patient community and legitimate investigators have flatly rejected their claims; after all, in revising its ME/CFS guidelines, the UK’s National Institute for Health and Care Excellence dismissed the quality of the evidence in favor of CBT and GET as either “very low” or just “low.”
The members of the Oslo Fatigue Consortium can cry and rant and stamp their little feet as much as they want, but it won’t change the facts. Like Tennessee William’s fading Southern belle Blanche duBois, these deluded but self-important investigators passed their sell-by date long ago.
(Originally posted on Virology Blog.)
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By David Tuller, DrPH
The administrators of a controversial study of the Lightning Process currently being conducted in Norway have ejected a participant who expressed critical views about the biopsychosocial approach to ME, according to MELivet [MELife], Nina Steinkopf’s invaluable blog. This decision appears to be an acknowledgement that the intervention only works if you believe it will work.
I have written extensively about the Lightning Process. The major pediatric clinical trial that claimed to prove this “mind-body” intervention was effective for ME/CFS was actually an egregious case of research misconduct and arguably fraudulent, in my view. The lead author of the trial was Bristol University’s methodologically and factually challenged grant magnet, Professor Esther Crawley, who has a habit of blatantly disseminating untruths in public presentations. So the fact that the trial was an ethical train wreck is not at all surprising.
As it turns out, Professor Crawley and her colleagues recruited more than half the study subjects before they actually registered the trial. They also swapped primary and secondary outcomes at that time and failed to mention any of this in the paper, which described the trial as if it were 100% prospective. This was, of course, false. These deceptive maneuvers violated core principles of scientific investigation and should have prevented the paper from being published by any legitimate medical journal. When I pointed out these issues to Archives of Disease in Childhood, a major BMJ title, the journal waited more than a year before finally slapping a 3,000-word correction on the paper and adding a 1,000-word editor’s note explaining with tortured logic why the study was not being retracted.
And yet the Norwegians have cited this disaster in promoting their own trial, with Professor Crawley serving as an advisor. And now the study administrators have demonstrated that they are prepared to act in a similarly unethical fashion by ejecting a participant for having some independent thoughts about the effort.
Dumping participants who investigators believe might not benefit from an intervention is an effective way to skew study results toward the positive. If the trial produces purportedly positive findings, will the indication for the intervention include the requirement that you have to believe in advance that it will work? Unless this participant violated some specific and reasonable provision of the study guidelines, the decision to exclude them is highly problematic. Have any others expressed doubts about the Lightning Process, whether publicly or privately, and also been discharged?
Here’s how the letter explained the decision to remove the participant from the study:
“You were recently included in the study. According to information from some people involved in the study, you have over time […] been active in social media with criticism of a biopsychosocial understanding of ME and of professionals who have such an understanding. You have also been critical of the study in social media. This is of course completely legitimate and it is healthy to have professional discussions.
“On the other hand, motivation and a hope that the treatment will work is necessary for a psychoeducational method such as the one used in the study to be effective. Inclusion of people who have no motivation to participate in the study can create a situation that challenges the quality of the PhD work and the PhD candidate’s study environment, and can affect the other participants. The consequence of this could be that the study is affected in a negative direction, and as the person responsible for research, you understand that I cannot allow that.
“On the basis of possible adverse research-related consequences, I conclude as the research manager that you cannot otherwise participate in the study.”
Here’s part of Nina’s blog:
“The study participant who was excluded, Lena Kjempengren-Vold, says that she has always been open about her approach to the study. Despite her skepticism, she was genuinely motivated to participate and was open to following all instructions on the course in the hope that the method might be of help.
“Kjempengren-Vold has been ill since February 2022 and was diagnosed with ME one year ago. She had been through the first income interview and was approved by neurologist Jone Furlund Owe at Haukeland, who verified the diagnosis. The first round of the questionnaires used in the study had been completed.
“Kjempengren-Vold did not want to disrupt either the study or to influence other participants. Since it suited the travel route better and she had also discussed the study with the PhD candidate on Twitter, she asked if she could apply for admission with another instructor. According to the study protocol, several instructors must hold courses. She never got an answer to this. Instead, she received the letter with information that she is excluded from the study.
She writes: “Having worked in a research institution for 30 years, I am aware of the importance of inclusion and exclusion criteria being met. I also understand that when cognitive methods are used, the patient himself must “own the process” for any effect to be achieved, so yes; I was determined to practice what I learned on the course as well as possible based on my assumptions.”
You can read the rest of Nina’s post here.
(Originally posted on Virology Blog.)
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By David Tuller, DrPH
*April is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Public Health to support the Trial By Error project: https://crowdfund.berkeley.edu/project/37217As I wrote earlier this week, a new study of adolescents and young adults from Norway, published by JAMA Network Open, purports to show that “persistent symptoms in this age group are related to factors other than SARS-CoV-2 infection.” It didn’t actually show that, of course. What it showed is that if you use an expansive case definition that identifies everyone with any single unexplained symptom as having what the World Health Organization has called post-Covid-19 condition (PCC), you will come up with pretty useless data—that is, if you want to understand anything about patients reporting actual disabling conditions.
I also pointed out something that seemed odd to me. As a current template for what they call post-infective fatigue syndrome, the authors were trying to resuscitate a zombie case definition for chronic fatigue syndrome—the abandoned 1994 Fukuda criteria. Since Fukuda has largely been dropped for research and clinical care and has been superseded by other criteria, the attempt to promote it without mentioning its acknowledged drawbacks and lack of present relevance is perplexing.
Not surprisingly, the study drew online criticism as soon as it was published. Beyond the fact that you could drive a tractor-trailer through the porous WHO criteria for PCC, it was noted that adolescents and young adults are less impacted overall from coronavirus infection and that extrapolating the findings to older populations would be unwarranted—even if the study were robust and well-designed, which it isn’t.
But it was also touted by some of those you’d expect to tout it. In his newsletter, Vinay Prasad, a hematologist-oncologist at the University of California, San Francisco, who has invoked the Third Reich in relation to US pandemic-related policies, called the findings a “bombshell” and “a damning revelation.” The study, he wrote, “takes a sledgehammer to the media narrative of the condition.” He added: “The reason people inaccurately covered long COVID is that they needed to have it— they needed it to be scary— to justify continued restrictions in young populations.” Prasad’s post is an amazingly wrong-headed interpretation of the findings.
Undisclosed in the paper was that it was developed in partnership with a group called Recovery Norway, which identifies its members as “people who have experienced recovery from ME/CFS or similar illnesses.” (I learned about this connection on twitter; here’s a particularly blunt riposte to Prasad’s assertions.) Recovery Norway has been closely associated with the Lightning Process—a three-day “mind-body” program founded by Phil Parker, a British osteopath and spiritual teacher who once boasted of how he could “step into other people’s bodies…to assist them in their healing with amazing results.”
Norway’s most prominent Lightning Process practitioner was one of the co-founders of Recovery Norway. Of the 126 individual testimonials of recovery presented on the site, 75 involve the Lightning Process. Overall, 93 of the narratives involve ME/CFS and eight involve “post-covid syndrome.”
The JAMA Network Open paper indicates that the research was funded by the Dam Foundation in Norway, which supports health research in Norway. The page for the project on the Dam Foundation’s site identifies Recovery Norway as the “user organization” for the project. An accompanying Q-and-A with Professor Vergard Wyller of the University of Oslo, the study’s senior author, included further information. According to Professor Wyller:
“The project has been developed in collaboration with Recovery Norway, which organizes people who have experience of long-term symptoms after infections, including both kissing disease [glandular fever or mononucleosis] and COVID-19. Recovery Norway is also an applicant organization for Dam.”
Professor Wyller also said this: “In addition, we regularly receive input from an international user group linked to the COFFI consortium.”
As I have previously written, members of COFFI [Collaborative on Fatigue Following Infection] last year published a “research agenda for long Covid.” Like the JAMA Network Open paper, this article also sought to revive a zombie case definition for CFS—the 1991 Oxford criteria, which required only fatigue for a diagnosis. Like the 1994 definition, this 1991 version has been discredited—except among the likes of the COFFI crowd, apparently.
Here’s another interesting statement from Professor Wyller: “We want to find out whether SARS-CoV-2 differs from other infectious diseases when it comes to late effects after infection in young people.” If this was in fact a question of interest, why did they enroll as controls people who seemed to be suffering from viral infections just because they tested negative for coronavirus? Including such controls would obviously limit the possibility of determining whether the long-term effects of SARS-CoV-2 differed from the long-term impacts of other infectious diseases. The study is not designed to answer Professor Wyller’s question.
In any event, given Recovery Norway’s role in the study, the failure to mention the organization’s involvement, even in the paper’s acknowledgements, is surprising—especially since the information is highlighted on Dam’s site. What’s up with that?
(Originally posted on Virology Blog.)