By David Tuller, DrPH
*This is a crowdfunding month for Trial By Error. Donations (tax-deductible to US tax-payers) go to the University of Calinfornia, Berkeley, to support the project. The link to the crowdfunding campaign is here: https://crowdfund.berkeley.edu/project/42302
UPDATE: At the end of this post, I mentioned the patient in the BBC report who said she recovered from the Lightning Process. One commenter offered a comment on this aspect that I thought was worthwhile highlighting:
“The patient reporting recovery from their post Covid symptoms via LP stated in the programme that they only had symptoms when they left their house. ME type symptoms after Covid are present 24 hours a day 365 days a year. And across all domains of a person’s life. The diagnosing clinician either didn’t know that or the patient was probably given a chronic fatigue label, which she and LP people thought was the same.
“I think this example demonstrates the impact of the unhelpful CFS label, as it can allow pwME and chronic fatigue due to anything else to be placed in the same group. And then results from one get generalised to the pwME / pw ME type symptoms post Covid unhelpfully.
“The patient describes approaching going out and building up her confidence to do things outside the house. This is one way in which someone with worry after they had lost their confidence after upset/traumatic experience would work, along with other things, to overcome difficulties and move on well. I would expect a good outcome in this type of case. It works. This could have been achieved with a couple of sessions with rehabilitation physio or OT in a Long Covid service, with ease. It tells us nothing about the difficulties pw ME type symptoms post Covid face.”
**********
For years, I have criticized the research purporting to prove that the Lightning Process, a three-day mind-body workshop, was effective in curing ME/CFS and a host of other chronic illnesses. The largest study of the LP, conducted by the methodologically and ethically challenged Esther Crawley, a professor and pediatrician at the University of Bristol, claimed success but was, in fact, a fraudulent mess.
The trial should never have passed peer review; having been published, it should have been retracted.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 anecdotal 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 worse.
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.
Lightening Process = “Neuro Bollocks” .
“While these accounts of success are hard to explain based on the science, they still deserve a place in the LP narrative.”
The patient reporting recovery from their post Covid symptoms via LP stated in the programme that they only had symptoms when they left their house. ME type symptoms after Covid are present 24 hours a day 365 days a year. And across all domains of a person’s life. The diagnosing clinician either didn’t know that or the patient was probably given a chronic fatigue label, which she and LP people thought was the same.
I think this example demonstrates the impact of the unhelpful CFS label, as it can allow pwME and chronic fatigue due to anything else to be placed in the same group. And then results from one get generalised to the pwME / pw ME type symptoms post Covid unhelpfully.
The patient describes approaching going out and building up her confidence to do things outside the house. This is one way in which someone with worry after they had lost their confidence after upset/traumatic experience would work, along with other things, to overcome difficulties and move on well. I would expect a good outcome in this type of case. It works. This could have been achieved with a couple of sessions with rehabilitation physio or OT in a Long Covid service, with ease. It tells us nothing about the difficulties pw ME type symptoms post Covid face.
David wrote “it should have been retracted”.
Shouldn’t medical journals’ first responsibility always be to protect vulnerable patients? What was that journal thinking? What is it still thinking? It could always retract the paper now – it’s never too late to try to put things right.
Talking more generally, I suspect that we may have a widespread problem in business (and public services too) of public image and reputation being routinely prioritized over doing the right thing. How bad does it have to get before managers consider that they might have lost their moral compass along the way? When did risk management lose sight of what the real risks are? I’d suggest that prioritizing the avoidance of possible reputational damage over tackling the real risks could well lead to worse reputational damage in the long run. I imagine that by now there will be many good examples of this that could be employed in management training to warn would-be managers of how badly things can go wrong if they allow their priorities to become skewed.
“While these accounts of success are hard to explain based on the science, they still deserve a place in the LP narrative.”
David, please don’t give Lightning cures stories credibility. Lightning Process ‘success’ stories have been all over the UK media for 2 decades. The UK press is saturated by ‘ME recovery by mind body courses’ stories while ME patients critiques of mind body therapies are relegated to the Comments sections of national press, and even then we are censored. Phil Parker and his LP trainers hold all the power. Please don’t hand them even more power.
Lightning Process ‘recovery’ stories cannot be given credibility because Lightning Process trains people to lie about their health. Lightning students are trained to not speak about their symptoms and how sick they are, they are trained to tell themselves, and everyone else, that they are recovered and well. The Lightning students are also told by the trainers that If they don’t tell themselves and others they are well/recovered then *Lightning won’t work*. They are trained to lie.
That’s what Lightning Process is.
Lightning is a very crude coaching course, an obedience training. That’s why trainers screen out skeptical ME patients and ban realistic questions and statements, calling them “negativity” telling the skeptical patients they are “not ready to do Lightning Process”. In fact ‘Are you ready to do Lightning’ was one of Phil Parker’s early advertising slogans. That also fosters an ‘In Group/Out Group dynamic, the kind that cults use.
Joan Crawford makes a good point that we don’t know what exactly the patient who said they recovered after the LP was suffering from. This is always an issue with these kinds of anecdotal accounts. It is simply impossible to know. I still think in writing about the LP, it is important to point out that, along with all those saying they got worse and that it’s bullshit or gaslighting, some report benefits.
Great article both by you David & the BBC!
About time LP was outed!
So from one “the anti-recovery activists” to another, I salute you! 😂
David Tuller commented:
“I still think in writing about the LP, it is important to point out that, along with all those saying they got worse and that it’s bullshit or gaslighting, some report benefits.”
I agree, if anecdotal accounts of non-recovery are to be reported then so too should accounts from individuals claiming that they were helped. I’m not keen on the use of the word “success” though because that could be interpreted as the treatment having been successful, that it works, rather than there potentially being some other explanation for recovery.
You’re just promoting irish me cfs spin. They do not represent all in Ireland with me cfs. There are people who say they were helped by LP but you ignore that and say if it helps it was not me. Always right with their own spin. Can’t work but can be on Facebook Twitter Instagram Pinterest all the time
“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.”
Long Covid is known to persist for varying durations, from months to years (so far). A certain number of people recover spontaneously at various times, whether treated or not. The fact that someone improved following the Lightning Process is meaningless, as people are improving without LP every day. To claim otherwise is the post hoc ergo propter hoc fallacy. Coincidence is not causation, especially when n=1.
Steven Lubet Commented:
“The fact that someone improved following the Lightning Process is meaningless,…”
I’d agree with that. I think David was trying to say that personal reports shouldn’t be discounted and that a good journalist won’t bias one person’s personal account over another’s, but that doesn’t make them reliable or true. To be able to say that a treatment is successful we need good scientific evidence and personal anecdote will not provide that. I hope the BBC follows up by taking a closer look at the scientific evidence; to my mind it has a tendency these days to give undue attention to personal testimony in its reporting. Individual’s stories may help to pull an audience in but, especially when health and lives are at stake, the public needs better information and I think health correspondents really need to scrutinize the science themselves and incorporate that into their reporting rather than trusting scientists or medics to do that for them. Otherwise, there’s a risk that the audience will be misinformed/misled. It seems to me that the existence of the UK’s Science Media Centre has allowed people who have little understanding of/training in science and medicine and therefore a limited ability to scrutinize it, to inform the public about it. I’m not saying that that’s the case here, and there’ll always be a place for personal stories and looking into what’s going on in practice (which perhaps doesn’t require that level of scientific scrutiny), but I’d say we need much more than that from trusted media like the BBC when treatments suggested or employed for medical conditions are being debated. It’s then that we absolutely need scrutiny of the science, when we cannot be without it.
You call the BBC person a disinformation expert because their information is not what you want to hear. If they sang your spin they would be great. Some people are helped by LP. But they are not counted or are classed anecdotal
ANA, you should note that it was not David who called the BBC person a disinformation expert. It’s the BBC themselves who term her their ‘health and disinformation correspondent’.
ANA … also see this article on the website of ‘The Royal Society of Medicine’ about earlier work done by Rachel Schraer (and Jack Goodman), where – again – she is described as “BBC News, Health Disinformation Reporter”.
https://www.rsm.ac.uk/media-releases/2022/bbc-journalists-win-award-for-exposing-false-science-behind-covid-miracle-drug/
This article is hilarious. And so misleading. You clearly do not understand about any of it. We know scientifically how physical illnesses and the Brain are all connected and wired together! Using the brain pathways to influence the body is something well known about by most intelligent people. ( go research NLP) it is not saying all illnesses are in the mind.. it’s simple using the brain to influence the body. Go research the brain people! My Doctor has been recommending the Lp for years because she said it works!