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

dave30th said:
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.
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I don't understand why a journalist has to give an example of someone who claims to have been cured in this context, or why you say in your article such anecdotes should be part of the story.

Does that mean when you write about GET, explaining the flaws in the research, and saying that there's no evidence it works as a treatment for ME/CFS, and give an example of someone made worse by GET, you feel obliged to include an anecdote of someone who says it cured them? That makes no sense to me.
 
Sean said:
I think it is a bad idea to have heroes, you will always be disappointed.

But if I did have any then Barbara Ehrenreich would easily be one of them.

If there were more people like her in this world it would be a much better place.
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Joan Crawford said:
Her book Smile or Die is excellent.
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You saw my links to her talk & a review of her book upthread right?

Ehrenreich's work was a revelation to me.
 
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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@Firestormer (Russell Fleming) was upon record as saying it doesn't matter if there's no test for ME because there's no treatment. The treatment is consideration, I've become 100% bed bound without it. Again I tried to warn you. Saying testing that can prove we're really seriously ill, doesn't matter, is not competent?
 
Trish said:
I don't understand why a journalist has to give an example of someone who claims to have been cured in this context, or why you say in your article such anecdotes should be part of the story.
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I'm very lucky that mostly I don't have to think about that as much as I used to. I'm writing opinion/commentary from a public health perspective with an audience that knows what I'm talking about. I'm not really doing "journalism" much these days, in the sense that the BBC reporters are. I don't feel a need to give Phil Parker his say or include "positive" anecdotes. The BBC story was very negative on the LP. To me, it was a stronger story for having included the patient who felt improved. It suggested the journalists are trying to be honest brokers. I don't think including that undermined the overall negative assessment of the LP offered by the piece, given all the critical voices.

Maybe my appreciation for such journalistic efforts at "balance" is just the knee-jerk, residual journalist in me. I certainly understand that others might disagree with that assessment.
 
DigitalDrifter said:
@Firestormer (Russell Fleming) was upon record as saying it doesn't matter if there's no test for ME because there's no treatment. The treatment is consideration, I've become 100% bed bound without it. Again I tried to warn you. Saying testing that can prove we're really seriously ill, doesn't matter, is not competent?
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I don't understand what point you are making. What have you tried to warn me about? And why me in particular?
 
Lou B Lou said:
Glasgow Standard Twitter

https://twitter.com/user/status/1793666503558279358



Tweet Content

'Those suffering from Long Covid have few options to get help for their condition. Some, however, have turned to the Lightning Process, created by Dr Phil Parker.
@Ethan_1908 writes about what the process is, who it has helped, and what the critiques are:
https://glasgowstandard.com/2024/05...at-is-it-and-can-it-help-long-covid-patients/

.
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I reached out to Ethan on Twitter yesterday and made some points about the article.

He assured me it was a genuine attempt to be balanced and I absolutely accept that. He was very open to feedback (mine is here, for anyone interested, https://justpaste.it/ckqmc written in a bit of a hurry so there is more I could say). I also made some more comments to him in our private exchange and linked him to Edzard Ernst's blog, mine on the SMILE trial and this thread.

He took what I said on board.

I also pitched him another story about how the failure to research ME properly and the wasted 30+ years of the wrong model for ME had left LC patients without any treatment and opened the way for people like Parker to exploit them. He said he's going to pitch it to his lecturer.

He has a relative with LC, hence his interest.
 
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JohnTheJack said:
I reached out to Ethan on Twitter yesterday and made some points about the article.

He assured me it was a genuine attempt to be balanced and I absolutely accept that. He was very open to feedback (mine is here, for anyone interested, https://justpaste.it/ckqmc written in a bit of a hurry so there is more I could say). I also made some more comments to him in our private exchange and linked him to Edzard Ernst's blog, mine on the SMILE trial and this thread.

He took what I said on board.

I also pitched him another story about how the failure to research ME properly and the wasted 30+ years of the wrong model for ME had left LC patients without any treatment and opened the way for people like Parker to exploit them. He said he's going to pitch it to his lecturer.

He has a relative with LC, hence his interest.
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Excellent. 'the article is structured so as to be weighted in favour of Parker'. Yes.

My great concerns were 1/ that Parker is such a slick operator, and ruthless salesman, that when he is interviewed/quoted in articles it can operate as basically a hard sell advertisement for LP, and unless the critiques of LP are spelled out and robust (which in that article they were not, the MEA response was awful) the article favors Parker whether the journalist intended that or not.

And 2/ that although the Glasgow Standard is not a national, other journalism students would read that article and could well feel encouraged to, now or later, join in the 'writing stories on mind body cures for ME' bandwaggon.
 
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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And this is for the same reason why claims of drinking urine being good for this or that shouldn't be amplified. Or some potent drug. Or thoughts and prayers, spiritual awakenings, psychic séances and anything and everything else.

One of the most frustrating things so far from LC has been how obvious it is that remissions, often temporary, and recoveries are random and spontaneous. Most comments on the LC sub-reddit attribute it to time. A common type of post is to list all the things they did, but most don't attribute improvement on any particular thing, they think time made the difference, meaning a natural biological process. This should have ended everything about any treatment boasting of recoveries.

But instead this has been used as a justification to do nothing, as if millions being ill for months or years is not a problem worth solving. But for sure claims of remissions or recoveries aren't worth a damn on their own, whether it's magical mind-over-matter, exercise or anything else.

Clinical trials being largely useless here, what we need to rely on is data. All trials boasting of recoveries from treatments have far lower odds of recovery than what is found naturally. The data tell us that this needs to be ignored, it's just noise. And even more so with the whole "brain retraining" where they tell people to think and say they're recovered, even by the usual standards it's especially worthless, even suspicious.
 
dave30th said:
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.
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dave30th said:
The BBC story was very negative on the LP. To me, it was a stronger story for having included the patient who felt improved. It suggested the journalists are trying to be honest brokers. I don't think including that undermined the overall negative assessment of the LP offered by the piece, given all the critical voices.
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But Dave, you do understand that the person they used as an example of someone recovering from LC because of the Lightning Process is a member of COFFI? And she was an NLP Life Coach before getting Covid-19? As others have said, there are two compelling reasons why anecdotes of recovery following an LP course are questionable
1. A high rate of natural recovery in the early years, and
2. A treatment that requires people to say that they are better, if they want to have any hope of actually being better

But with the woman the BBC reporter used, she is part of the 'Lightning Process/mind over matter' machinery. Her public statements about recovery in different places don't hang together. So, nothing she says in relation to this treatment can be relied on. That's a compelling third reason why her anecdote is worthless and should not have been included.

I don't understand how anyone can think that that BBC item will not have a net positive effect for Phil Parker. Oonagh's anecdote will be dismissed - 'of course it wouldn't work for her, she obviously went into the treatment with the wrong attitude'. Sure, the percentage of people with Long Covid and their families who would not contemplate the Lightning Process will have had their opinions confirmed. But there will have been hundreds, probably thousands of people, desperate for a cure, who will have heard of the treatment for the first time and will have contacted their local LP practitioner to sign up for a course. Journalists have to be aware of that, they have to dig deeper in order to present the truth fairly. Otherwise, any publicity is good publicity for people like Parker.
 
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