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

My thoughts re the lady who recovered fwiw. I posted similar comments on @dave30th blog.

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 it likely this fundamental mix up gives the BPS crowd their 'evidence' that CBT/GET was 'effective'.

I think this example demonstrates the impact of the dreadful unhelpful CFS label, as it can allow pwME and chronic fatigue due to anything else to be placed in the same group. And it ignores the impact of PEM, flu-like malaise and so forth post modest activity. Then unfortunately results from one get generalised to the pwME / pw ME type symptoms post Covid unhelpfully. Completely misleading.

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.
 
Trial By Error: BBC Takes on Lightning Process and Highlights Perspectives of the So-Called “Anti-Recovery Activists”

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.”

https://virology.ws/2024/05/24/tria...ves-of-the-so-called-anti-recovery-activists/
 
Lou B Lou said:
'Ewan Dale, a spokesperson for the Association, detailed their issues with the process.

“We are aware of the possibilities of illness behaviour and the power of positive thinking, but unfortunately, we continue to see that those who prefer such aspects of approaches to so many of the unknowns and uncertainties in medical practice tend to fail to start addressing investigating the possibilities in a medically balanced and incisive manner,” he said.'
https://glasgowstandard.com/2024/05...at-is-it-and-can-it-help-long-covid-patients/
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If that is accurately quoted by the article's author, it's appalling. What on earth is happening to the MEA?
 
Typo, @dave30th.
The journal, Archives of Disease in Childhood, is in the BMJ staple.
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I assume you mean stable.

A good article, but I wish you hadn't ended with this sentence:
While these accounts of success are hard to explain based on the science, they still deserve a place in the LP narrative.
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The story included is a weak one, as Joan Crawford explains in the responses. And there are other factors that make all such stories of success unreliable even as anecodotes for lots of reasons:
Part of the method is patients are told that the method only works if they consistently deny their symptoms and say they have recovered.
Most recovery stories are collected in the first flush of excitement while adrenaline is giving a false sense of success.
The whole LP structure is a pyramid selling scheme where clients are encouraged to earn from it by becoming trainers, and this of course requires them to continue to say they have recovered.
It probably helps some people who are anxious about getting going again after illness to get on with their lives.
Many people are misdiagnosed with CFS or CF.

For all those reasons, I don't think anecdotes of recovery from ME/CFS or LP with PEM are credible, or should be taken as credible.

I would have liked your article to end with quotes from Altmann, Nord and Kane, not with giving credibililty to LP fans.
 
Lou B Lou said:
Ewan Dale, a spokesperson for the Association, detailed their issues with the process.

“We are aware of the possibilities of illness behaviour and the power of positive thinking, but unfortunately, we continue to see that those who prefer such aspects of approaches to so many of the unknowns and uncertainties in medical practice tend to fail to start addressing investigating the possibilities in a medically balanced and incisive manner,” he said.'
https://glasgowstandard.com/2024/05...at-is-it-and-can-it-help-long-covid-patients/
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Oh my goodness, that's seriously troubling coming from the MEA ... they're 'aware of' "illness behaviour and the power of positive thinking"???

there is no 'power' in positive thinking, at least not when it comes to curing illness. Any illness.
That is a load of Mary Baker Eddy, Amway, 'manifesting'/The Secret, bullshit.

Smile or Die: How Positive Thinking Fooled America and the World by Barbara Ehrenreich | Health, mind and body books | The Guardian


Barbara Ehrenreich - Smile or Die (youtube.com) - the whole video is excellent but if you cant manage it all, for positive thinking re disease select from roughly 20 mins in IIRC


If thats an accurate quote from the new MEA representation then they have either been infiltrated or Dr S has turned to the dark side.

what the heck is going on?!


ETA even better more recent video on the toxic side of 'positive thinking' (1) Barbara Ehrenreich: "Bright Sided: How Positive Thinking Undermines America" - YouTube

ETA: on reflection, i highly doubt /Dr S has changed his views on the LP or has gone over to the 'dark side' as i put it. He has been a champion of PwME for decades.
 
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Trish said:
If that is accurately quoted by the article's author, it's appalling. What upon earth is happening to the MEA?
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I tried to warn you: https://www.s4me.info/threads/poll-...sychosomatic-illness.34205/page-3#post-484876
DigitalDrifter said:
My point was also that he doesn't take the opportunity to be critical of it, he should have mentioned the lack of evidence for the concept as well as the double standard of evidence required for medical professionals to accept such a concept.
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Trish said:
I would have liked your article to end with quotes from Altmann, Nord and Kane, not with giving credibililty to LP fans.
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I understand these concerns, and it is a real conundrum in covering things like the LP. I have struggled with this when I have written about it. Joan offered a good explanation for one case, but as Rachel said in the piece, they spoke with others who also reported benefits. When I wrote about the LP, I spoke to quite a few of these cases--people who reported having been bed-bound for years, etc. And they said LP immediately helped them. I included one of these cases in a generally very negative story about the LP. We can say, Hey, they didn't really have ME, they had something else, etc. But we don't know that--it's an assumption. The fact is, there are claims of "recovery" that we simply can't explain. As a journalist, you can't pretend they don't exist. You can say, that's not based on the science. But the stories still exist.

ADDED: I have updated the post by moving Joan's comment/explanation to the top. That seemed like a reasonable way to address the issue.
 
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dave30th said:
As a journalist, you can't pretend they don't exist. You can say, that's not based on the science. But the stories still exist.
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The way I make sense of it is that humans always seem to have to find a reason for why they got better from a disease. People have claimed praying to deity cured them, or that taking a placebo drug did. If you go on any of the long covid communities who contain a lot of new people, the majority of posts and comments are people claiming they recovered from the most random things, from carnivore diets to hypnosis.

Personally when I was suffering from health problems (before they were diagnosed as ME) I had a period of two months where my symptoms nearly went away. I was personally convinced my symptoms went away because I stopped thinking about them and tracking them, which I know realise is absurd.

Anyways, a couple hundred stories of people recovering from a sham course that promises “recovery” done by tens of thousands, is hardly suprising at all. I really don’t doubt that some of these people genuinely had ME and recovered. Just that a large dose of confirmation bias made them “blame” their recovery on the LP. Then there is the “sunk cost fallacy” that people will be more likely to say something helped them given they paid 1000£ to do it.
 
dave30th said:
The fact is, there are claims of "recovery" that we simply can't explain. As a journalist, you can't pretend they don't exist. You can say, that's not based on the science. But the stories still exist.
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The whole point is you do not base health policy and treatment for everyone based on a handful of anecdotes. It may be that for some people LP triggers almost instantaneous recovery, even though that is profoundly unlikely. It is more likely that there are other explanations such as @Joan Crawford ’s.

If these ‘miracle cures’ could withstand the scrutiny of a ‘devil’s advocate’, then it might be worth asking why these few benefit and research what makes them different, but it remains the probability that most won’t be helped, with some being harmed over and above being £1,000 out of pocket.
 
Peter Trewhitt said:
The whole point is you do not base health policy and treatment for everyone based on a handful of anecdotes. It may be that for some people LP triggers almost instantaneous recovery, even though that is profoundly unlikely. It is more likely that there are other explanations such as @Joan Crawford ’s.

If these ‘miracle cures’ could withstand the scrutiny of a ‘devil’s advocate’, then it might be worth asking why these few benefit and research what makes them different, but it remains the probability that most won’t be helped, with some being harmed over and above being £1,000 out of pocket.
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This
.
 
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.

.
 
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Trish said:
I don't think it's fair to blame Charles Shepherd for what others in the MEA do or say. He's one person, and does a huge amount of good work for the MEA and for pwME. The MEA seems, sadly, to have some less competent people acting on their behalf.
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agreed

Am feeling very low at moment and feared he may have been taken in, but on reflection that was a bit daft, he's been amazing for PwME over the years.
 
Lou B Lou said:
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.
.
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These are very important points. I generally agree with the concerns that everyone has raised here. But that's a different question than whether journalists--not scientific researchers--covering the issue should include an example of these stories while overall making clear that there's little science behind the claims being made by the LP folks. I think the BBC reporters would have opened themselves up to serious criticism if they had not included the example they did of the "recovered" patient.
 
Trish said:
Part of the method is patients are told that the method only works if they consistently deny their symptoms and say they have recovered.
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Lou B Lou said:
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.
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This. The LP protocol is the essence of biased methodology and unfalsifiability. It is at its core fundamentally anti-science.

That said, I sadly have to agree with @dave30th that he needs to acknowledge reports from patients who claim to have recovered.
 
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