BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

RaviHVJ said:
One other small detail I really like about the piece and that quote. When Parker talks about "anti-recovery activists," he's probably referring to patients, and drawing on the long-standing BPS trope of suggesting the ME debate consists of scientists (themselves) and patient-activists who at some level just don't want to get better. However, in the BBC article, the journalist puts the anti-recovery activist quote right after a quote from a Cambridge neuroscientist who says "I'm afraid now we've strayed very, very far from neuroscience." Also more generally, though the the piece opens with a quote from Oonagh, who's a prominent Long Covid advocate, it actually focuses much more on a) Danny Altmann and the Cambridge neuroscientist and b) the BBC's own investigation, including them actually experiencing the lightning process. Which all makes the anti-recovery activist quote look even more like the ramblings of a quack who's deeply out of touch with science and reality.
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My thoughts exactly. It's a very damning piece all-in-all.
 
Tweeted some quotes from the article and radio-program:
https://twitter.com/user/status/1792906971860828360


1) “Being in those kinds of thoughts is what’s maintaining your symptoms.”

The BBC did an investigation into the Lightning Process, a controversial 3-day training program.

This is what that ME/CFS patient community had to deal with for years.

2) Journalist Sarah Schraer:

“Not only did my coach say my thoughts were maintaining my symptoms, she also told me quite explicitly that there was nothing physical wrong with my body, that’s despite having no apparent medical qualification or requesting access to any test results.”

3) “One of the most scientifically shaky claims we found Lightning Process coaches make is that using negative words can trigger symptoms and using positive language teaches the brain to experience positive sensations.”

4) The Lightning process tells patients that thinking and speaking positively, will help cure them of illnesses such as ME/CFS or Long Covid.

They are instructed to tell themselves out loud: ‘You are a powerful genius’

5) Neuroscientist Camilla Nord: “I’m afraid now we’ve strayed very, very far from neuroscience. What I would call neuro-bollocks. It’s a kind of abusive of neuroscientific terms in order to give quite simple psychological techniques a kind of sheen of science about them.”

6) Lightning process practitioners have an aggressive way of promoting themselves.

Oonagh Cousins, an Olympic rower who developed Long Covid, was contacted and offered a free place on the program.

7) Oonagh: “I think they were hoping I would have a positive experience and use my athlete platform to advertise it to this new patient cohort that appearing as a result of the pandemic.”

8) The BBC article also said:

'When we put these specific claims to Dr Parker, he said our questions seemed to be "informed solely by the rumours and misinformation" circulated by what he called "anti-recovery activists".'
 
File on 4 - Long Covid: Mind Over Matter? - BBC Sounds

24:20
There are decades of evidence in ME to show that there is pathological reasons why there is energy limitation, that there is an underlying problem in the energy making factory of the body.
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Oxygen is not getting into cells, some of that might be due to microclotting, inflammation of the blood vessels, some of it might be due to auto-immune processes. This idea that people are just scared of exercise and it's all a fear based response, I would say, is complete nonsense. If you push exercise in a way that is not controlled and very, very carefully managed, you can actually make the underlying condition worse. So it really worries me that someone who is not medically qualified, would be asking patients to exercise just on the idea that they've changed their mindset about it. To me, that sounds quite dangerous.
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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."
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"I'm afraid now we've strayed very, very far from neuroscience," Dr Nord says, calling this an "abuse" of scientific terms.
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Unfortunately this is by far the biggest problem here: it's not. This is now accepted modern neuroscience and health care. It's 100% pseudoscience, but a huge number of neurologists and other MDs, as well as psychiatrists and psychologists, essentially say the same things with the same intent and purpose. Things such as:
Dr Camilla Nord, a neuroscientist at the University of Cambridge, disputed these claims. She said the Lightning Process was "right that the brain can create symptoms of physical ill health" but added: "I think it's a wild claim to say there's nothing wrong with your body."
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There is no basis for this here, but it's mainstream medicine. At best it's a generic claim that has nothing to do with the specifics here, but the way this ideology is built guarantees that this is the outcome. It's essentially the same argument as saying that since the Sun influences all life on Earth, then astrology is real. This is nonsense, it's not how any of this works. But for decades the standard has been that if it's merely possible that a psychological disorder could explain, then it does. You build on nonsense, you get nonsense.

There is basically no difference between LP and CBT:
Lightning Process founder, Dr Phil Parker, who's not a medical doctor but has a PhD in psychology of health, told us his course was "not a mindset or positive thinking approach," but one that uses "the brain to influence physiological changes", backed by peer-reviewed evidence.
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This is basically the gist of the biopsychosocial model of "deconditioning" and "false illness beliefs" that has been promoted to MDs all over the world. It's why CBT is part of the package. Or the switch. Or mindfulness. Or mind-body-this-and-that.

Yes, LP is a scam. A blatant exploitative scam that preys on vulnerable people, as vile as the people who scam old people out of their savings. And so is the entire psychosomatic ideology as it relates to chronic illness. It's the exact same thing. Which all makes it much harder to criticize because all the flaws in the LP model are the exact same flaws as the mindfulness/rehabilitation approach. They even both talk about "calming the nervous system" and other woo nonsense. Might as well as some stuff about cleaning auras while they're at it.

This is what happens when you integrate pseudoscience into a scientific profession: you destroy the credibility of that profession. No one involved can claim they don't understand this, charlatanism has always existed when it comes to health, and now that it has been integrated into professional health care it becomes impossible to shoo the pseudoscience away, it walks and talks exactly like card-carrying MDs.

You made your bed, now undo the hell out of it and take full responsibility for all the harm you did, as real professionals do.

Edit: As I said:
Hutan said:
"In fact, it's currently being piloted by one NHS Health Centre in Scotland. The Centre for Integrative Care in Glasgow offers both conventional and alternative therapies, including homeopathy. NHS Greater Glasgow and Clyde said the Lightning Process was being assessed until this autumn and a report would follow."
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If you push exercise in a way that is not controlled and very, very carefully managed, you can actually make the underlying condition worse. So it really worries me that someone who is not medically qualified, would be asking patients to exercise just on the idea that they've changed their mindset about it.
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What about from people who are medically qualified? Saying the exact same thing? Publishing research saying the exact same thing? Clinically advising the exact same thing? With the same intent and purpose? Officially? With consequences, for insurance and disability? Valid expert opinion in a court of law?

What about then? Because the "carefully managed" bit is complete red herring. There is no such thing, it makes absolutely no difference and may as well say that it's "supervised by Santa Claus". Comments like this actually show how significant the problem is, because they give weight to the same lie using different words. This is exactly what the PACE-type ideologues have been saying for years, with the same intent and purpose. They keep using the No true Scotsman fallacy and almost no one cares, it's an accepted fallacy here.

What's worse is that it's written explicitly in those terms. This "asking patients to exercise just on the idea that they've changed their mindset about it" is exactly the premise of PACE, and PACE is the foundation of the entire treatment model. The problem isn't just LP, it's the profession that has lost its way. Even the worrying about symptoms is core to the official CBT+GET model, and to the generic psychosomatic rehabilitation model.

Actually there is a way to read this that basically means that doing LP is problematic, but doing CBT+GET is fine, even though they're basically the same thing. Which is basically one expert criticizing pseudoscience on some basis, who then promotes the same pseudoscience in the same sentence, even though it features the same problems. This destroys trust in experts. How can anyone trust experts when they hear stuff like this about things they can intuitively know are BS?!
 
rvallee said:
What's worse is that it's written explicitly in those terms. This "asking patients to exercise just on the idea that they've changed their mindset about it" is exactly the premise of PACE, and PACE is the foundation of the entire treatment model. The problem isn't just LP, it's the profession that has lost its way. Even the worrying about symptoms is core to the official CBT+GET model, and to the generic psychosomatic rehabilitation model.
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Indeed some of these CBT/GET true believers, such as Prof Crawley explicitly support LP, and their supposed scientific supporting evidence uses the same flawed experimental design used to justify LP.
 
lol in radio programme - only managed the 1st 30 mins or so....
Prof Nord says

"I'm afraid now we've strayed very very far from neuroscience, <laughs> its what i would call 'neurobollocks' a kind of abuse of neuroscientific terms"

fantastic :rofl:

this has been a good week for funny terms "biopsychosauruses" - (was that you @Barry? & now 'neurobollocks'

Edited: i'd mistakenly said Dr Cambridge when i meant the dr *from* Cambridge, i believe her name was Prof Nord... honestly if you're going to quote someone Jem the least you can do is get there name right! my brain is all over the place, thinking through treacle :D
 
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RaviHVJ said:
I was very impressed by the article. It was stronger than what I'd expect from the BBC. It's quietly damning, which is always good for a journalistic piece.

My favourite moments are:

"I'm afraid now we've strayed very, very far from neuroscience," Dr Nord says, calling this an "abuse" of scientific terms.

When we put these specific claims to Dr Parker, he said our questions seemed to be "informed solely by the rumours and misinformation" circulated by what he called "anti-recovery activists".

I love it when journalists get ppl on the defensive and they say ridiculous things - nothing like condemning ppl using their own words.

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.

Prof Danny Altmann, a leading long Covid researcher, says such behavioural approaches disregard the "mass" of underlying damage in patients that can be measured in tests.

This makes them sound like a lifestyle cult
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"This makes them sound like a lifestyle cult"

Ha ha brilliant :thumbup:
 
JemPD said:
lol in radio programme - only managed the 1st 30 mins or so....
Dr Cambridge says

"I'm afraid now we've strayed very very far from neuroscience, <laughs> its what i would call 'neurobollocks' a kind of abuse of neuroscientific terms"

fantastic :rofl:

this has been a good week for funny terms "biopsychosauruses" - (was that you @Barry? & now 'neurobollocks'
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Fabulous :thumbup:
 
Deanne NZ said:
I would like to think this is a decent first crack from the MSM into LP
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I would like to think that too, and I have no doubt that the journalist did what she could. I've read the other comments here, but I'm still pretty sure that the piece will have people with Long Covid lining up to try LP, and/or their friends and family suggesting that they should do it.

The quote about 'straying very far from neuroscience' from Dr Nord, was actually only about one aspect of LP. Much of the rest of what she had to say was much less condemnatory and in fact is likely to be taken by many as supportive.

For those of you who haven't listened to the audio - here is a transcript of part of the audio from 29 minutes which has the interview with Rachel Whitfield.

Journalist: Lightning Process founder Dr Phil Parker said 'it was always disappointing when people didn't find benefit in a treatment, but, that this was a possibility with all treatments'. I put a series of questions to him about my findings. In an email, he told me he was too busy lecturing to speak to me, but he did send a written response saying that blame, ignoring symptoms and not seeking medical help were at odds with the central concept of the Lightning Process.

He also told me he believes Long Covid is physical and that the Lightning Process is not about changing mindset. Instead, he said it is about using the brain to influence positive physiological changes in the body. I also asked him about specific claims made to me by Lightning Process coaches but in his email he told me our questions were informed solely by rumours and mis-information circulated by what he called 'anti-recovery activists'. He referred us to what he described as 'peer-reviewed evidence' which supported the efficacy of the process.

Rachel Whitfield**: I knew that I was essentially well within the first two hours of doing the Lightning Process.

Journalist: Wow, that's quite extraordinary.
Rachel Whitfield is one of those people who says the Lightning Process worked for her. After a seemingly fairly mild Covid infection she tried to get back to her usually busy life as a self-employed single parent, but she found herself developing strange symptoms, brain fog, exhaustion and purple toes. She tried to find more information from support groups online.

Rachel Whitfield: The first thing I posted was 'does anyone recover?', and I remember this really clearly, I got no response, nothing.

Journalist: This frightened her.

Rachael Whitfield: I got told that if you have Long Covid then you are exercise intolerant. And I think every time I then tried to exercise, even it was just sitting on a bike, [laughs] I would get symptoms and so I think I formed a conditioned response basically, like Pavlov's dog.

Journalist: After six months, she tried the Lightning Process.

Rachael Whitfield: When I then sat down and I did the Lightning Process of course, very early on, I said of course I've got to pace, I've got to manage my energy, I've got to build up really slowly, and she said 'Rachel, it's up to you what you do, but you have as much energy as anyone else'. They call it 'The Pit' where you are so full of fear and expectation about this thing that you think might make you worse, that it actually starts to become reality. And something in that just clicked, and I realised that there were some things that didn't add up. Like I could walk in my house but not outside. And I just suddenly realised that my beliefs, my fear, my anxiety had just been keeping me stuck.

Journalist: She felt better almost immediately.

Rachel Whitfield: I went out and I rode my bike for 10 miles and then I, the next day, did a 5k run, from scratch, having not done more than walk to the end of my street for seven months. Not everyone does that. [laughs] Some people do... I'd done quite a lot of work before that in terms of thinking about how the mind-body are actually one system. I understood fundamentally the mind and the body and the impact of stress, I'd already worked out that that was a huge factor for me.

Journalist: But the idea that anxiety about exercising is at the root of most people's post-viral symptoms is an extremely controversial one, not least because of the large and growing body of evidence of physical damage in many people with Long Covid. Part of the problem is Long Covid is an umbrella term which might cover several different conditions. That's why Long Covid specialists say people need a thorough assessment and access to a range of different treatment options from psychological support to medication.

Dr Rachael Evans: So here on the left we've just come to our out-patient clinic. People will have blood tests, [fades out]
Journalist: This Long Covid clinic in Leicester offers exactly that. Dr Rachael Evans is a breathing doctor and a researcher who helps to run it. It is seen as one of the most comprehensive treatment programmes in the UK.

Dr Rachael Evans: Some people that are recovering but still have ongoing symptoms, they might need more of a light touch approach. Other people have really severe symptoms and a very difficult time and we have a much more complex approach. We've got a range of diagnostics, all types of imaging and physiology and blood tests that are all available.

Journalist: The Leicester clinic can prescribe a range of treatments from drugs to target symptoms to breathing rehabilitation, but it's not representative of the whole country.
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** See Rvallee's post above - Rachel Whitfield is presented in this piece as a busy single mother who made a miraculous recovery, there is no mention of her connections with nlp and the Lightning Process. Or that she is a member of COFFI - which is of course the club for psychobehaviouralists who believe that CFS is a functional disorder that can be corrected by better thinking and exercise.
 
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I think you're right, @Hutan, basically people will take from that program what they want to hear. People with Long Covid desperate to get better will latch onto that story of getting instantly better and think it must be worth a try. When I listened to her I heard someone who had only been sick for a few months - not clear how sick - and was very anxious she wouldn't get better. LP in that situation, by lifting anxiety, can probably enable someone who doesn't have PEM and is feeling sick with anxiety to get on with their lives.

Whereas we listen out and are pleased to hear the parts of the program that confirm what we know to be the case - that for pwME and pwLC with PEM, LC is a dangerous scam.
 
Below, Rachel Whitfield in Long Covid Cures

In May I went on a 3 day training course called the Lightning Process. It was a game changer. On this course I learnt lots of theories about the condition, what had caused it and what was keeping me stuck. I got lots of tools to recognise where I had control and where and how I could make different choices that would ultimately allow my body to heal. I worked on my beliefs about the condition and above all else I learnt self-compassion.

What I realised had been happening was that I had primed my brain so strongly that I should pace that every time I over did it (like a 10 minute walk when I only meant to walk 9 minutes) I would get anxious, and this would exacerbate symptoms which included a burning back and a tight throat (like being strangled) My brain would then interpret these, get more anxious, generate more symptoms, and enter a vicious cycle and then I would crash. My brain was driving the crashes due to fear of what many experts had told me and my memories of earlier crashes and what I believed (I must add again that I didn’t have anything that doctors could see wrong with, I had already done a lot of resting and was on a path to recovery, my relapses were less often and less severe and I had gone back to work but I still felt stuck in the illness)

After the course, I decided I had to have enough confidence in the theory to test it out. I got on my bike. I cycled for 20 minutes and got my Heart rate up to 150 (I had been told to stay below 100) and 24 hours later, I had anxiety which generated symptoms which led to more anxiety, but I was able to talk myself down as I now knew what it was. It was a hard leap of faith after so long believing something else.

Since then, I’ve cycled most days, and am running three times a week. I set myself the goal of running 10 miles in July and a half marathon in August. I’ve now achieved this. I’m also cycling longer distances, doing some strength training, weights and HIIT and continue to do yoga.
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There are significant differences between that account and what she told the BBC reporter. She says above that she cycled for 20 minutes after the course. But, she tells the BBC reporter that she cycled 10 miles after the course. I don't believe that she did 10 miles in 20 minutes. One article I found suggested that on average it would take someone 50 minutes to bike 10 miles.
The 10-mile time trial, a staple of the British racing scene, is now with a new record for the road bike discipline after George Fox set a blistering time of 18:41 on Sunday.
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It looks like only the fastest men are biking 10 miles on-road in under 20 minutes.

Also, in her earlier account, she says that she had symptoms after the bike ride. Whereas in the BBC account, she makes it seem that it was an immediate recovery, with the 5 km run the next day.

This information took ten seconds of googling to find, and I'm sure there is much more to be said about Rachel Whitfield. She has a major conflict of interest, and should not have been presented as just an average single mother who recovered as a result of an LP course.

It underscores again how we need to publicise the fact that lots of people, most people, including Garner, recover from Long Covid in the first year. It is not a miracle.
 
I haven't yet listened to the whole thing - I used my day's quota of energy reading the MEA post - but my concern is that for such a mendacious huckster as Parker, any publicity is good publicity. I had hoped someone would dig into his background as a tarot-card-reading faith healer: there's probably another news story in there.

What really galls me, however, is the way that organisations and institutions that should seek to serve, not harm, the public have wilfully supported and enabled him. Not just Crawley and the Scottish NHS trust mentioned, but the London Met - admittedly a third-rate institution - who allowed him to inflict his bilge on a group of drug addicts and gave him a PhD for it, and the Government, who could quite easily crack down on the proliferation of such obviously detrimental pseudoscience but choose to allow it to flourish.

(He's not the only grifter with a PhD, either; Perrin got one from another third-rate institution - the University of Salford - for his "lymphatic drainage" gibberish. The commercialisation and diminution of standards in academia and the proliferation of universities that began in the 1990s has led to some very strange outcomes.)
 
Claiming to be able to do do 30 mph in a bike for 20 minutes with a peak heart rate of 150 is complete BS.

Apparently the lightning process instantly turned her into an elite cyclist with superhuman physiology. Why bother training years :rolleyes:.
 
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@Hutan that is intriguing about Rachel Whitfield being the LP recovered person.

I was not aware of her previously but on listening to her in the interview my immediate thought was that she was not credible at all. She came across as someone who is highly suggestible and that she probably did not really have LC, but did have health anxiety. Likewise, her LP recovery story was so over the top that it did not ring true.
At the time I thought Rachel Schraer must have selected the loopiest person to include so that most listeners would question their credibility.

I admit to being of an overly optimistic disposition - but I can’t see this story being of any benefit to LP. It very clearly pitches it as a dubious scam.
 
Karen from Physios for ME on X



A new term used in defense of this process is "anti-recovery activists" which is the most bizarre interpretation of "people trying to educate so health professionals don't harm their patients".

It's about time this exploitative program is called out
 
Hutan said:
I would like to think that too, and I have no doubt that the journalist did what she could. I've read the other comments here, but I'm still pretty sure that the piece will have people with Long Covid lining up to try LP, and/or their friends and family suggesting that they should do it.

The quote about 'straying very far from neuroscience' from Dr Nord, was actually only about one aspect of LP. Much of the rest of what she had to say was much less condemnatory and in fact is likely to be taken by many as supportive.

For those of you who haven't listened to the audio - here is a transcript of part of the audio from 29 minutes which has the interview with Rachel Whitfield.




** See Rvallee's post above - Rachel Whitfield is presented in this piece as a busy single mother who made a miraculous recovery, there is no mention of her connections with nlp and the Lightning Process. Or that she is a member of COFFI - which is of course the club for psychobehaviouralists who believe that CFS is a functional disorder that can be corrected by better thinking and exercise.
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The next day she did a 5 km run. Something that normally takes a few weeks when starting from scratch. Not walking 5 km, a 5 km run. She probably was scuba diving the week before that.

But yeah that journalist comes off as very gullible and has done a poor job given the stakes.

I don't usually go there, but the description she gives sounds forced. It's very unusual to speak of this anxiety about symptoms from exertion that isn't the result of having experienced it before, which she doesn't describe.

I do occasionally see descriptions like this, but they are rare. It misunderstands pacing and I almost never see people talk about anxiety about exertion, in fact the overwhelming majority explicitly talk about the anxiety is strictly "body" anxiety, it has no corresponding thoughts. Not all, just the vast majority.

So, this looks to me a lot like Garner's story where details don't add up and appears to be cobbled together from misinterpreting what other patients are saying about it.

I'm not saying I think it's all fake, but it's a very unusual story, with details I almost never see organically in the LC community. It also just happens to exactly fit the stereotypes of the CBT/GET/LP model, almost like it comes straight from the corporate brochure, ready to sing the company anthem.
 
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