#ninasteinkopf — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #ninasteinkopf, aggregated by home.social.
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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.
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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.
**********
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.
-
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.)