Lightning Process - discussion thread

I'm not saying we shouldn't call out the problems with LP. But if someone is saying that they think that LP helped them recover, and someone else just says 'LP is pseudoscientific quackery' then is there much value in that discussion?

I suspect that many independent viewers of such a discussion would come away with a negative view of the LP critic and no real reason to be sceptical of LP.

edit:

There's SMILE. The problems with that need to be carefully explained if it's going to be challenged as currently people who just read the abstract will see that as clinical trial evidence supporting it.

 

(Leaving aside that the author is an unreliable narrator by virtue of LP training her to lie to both herself and others)

OK, so the intervention didn't cure you but you got substantially better quite some time after it. But it was definitely that intervention and not:

As well as:

(Crikey, I can only imagine the industrial load-bearing requirements. Must have concreted up the living room below. Perhaps took the roof off to crane it in.)

 

I’ve not read the article, so apologies if I’m mistaken, but these excerpts sound to me like she has had a very normal experience of post-viral illness. We know that most people recover within 2 years – and that many attribute their improvement to whatever therapy they happen have been trying when they started to improve.

One thing that seems strange to me is that she seems to be promoting LP when she hasn’t fully recovered. Would Parker not consider her to still be doing LC? Aren’t LP patients supposed to tell everyone that they’re 100% better regardless of how they feel, or has the secret protocol changed?

I have sympathy with all victims of LP – including those who are brainwashed into believing and/or telling everyone it has cured/helped them – but it is very disappointing to see this pseudoscience promoted in The Times, which has been been so helpful people with ME in recent years.

The hardest thing for me is knowing that people who know me will read this and that it may affect some of their attitudes towards me.

I’m not feeling up to it at the moment but I hope someone knowledgeable will send a letter to the editor in response. (Email: letters@thetimes.co.uk NB Keep it under 250 words, include full address and tel no, and send ASAP)

@dave30th I wonder if you might consider contacting Sean O’Neill to see if he could recommend someone at the Times that you could pitch a counter LP article to?

 

The £15,000 she spent on a1ternative treatments prior to the 1ightning course are bare1y mentioned (I'd 1ike to see a breakdown of them and individua1 costings) yet presumab1y none of these 'cured' her. Sure1y if her approach to trying different 'treatments' was ongoing (as seems the case) then chance a1one wou1d mean one of them wou1d fina11y 'work' (from her perspective) if she was fo11owing the natura1 path of improvement that the majority of post vira1 patients do in the first two years.

Does she have to brush her financia1 1osses under the carpet to 'stay positive'? The cynic in me is wondering whether she p1ans to train as some kind of 'mind-body' coach herse1f, or at 1east use the idea of it to produce more 'free1ance' artic1es, for which she is no doubt paid.

 

er -what?

There is no science of 'mind-body treatment' as far as I know.

 

But even with Phil Parker and LP, within that there are claims that are based on science.

It's not as if they're just talking about magic fair dust. They've realised that's not a good strategy. Instead, they have a narrative and where there is science that can be slotted into it, it is. To say very broadly that it's all nonsense will seem unfair and ideologically driven to a lot of people who may think that there are reasons for concern about LP, but also think that bits of it make sense, and that it may help some.

Doesn't this reflect a rather patronising and disempowering view of patients? Maybe some people are helped by LP, and it's not just 'brainwashing' that makes them think so? I'm not convinced anyone has really been helped my LP, and there are a lot of thing about it that trouble me, but it also seems possible that some people are genuinely helped. Claims about 'brainwashing' don't have a great history of being based on rigorous evidence, and very often they seem a way of dismissing/excusing the inconvenient beliefs of others.

There are lots of reports that LP does encourage an approach to thoughts about symptoms that would encourage more 'positive' reporting. I think that this justifies some greater scepticism of positive reports about LP, but the use of a term like 'brainwashing' is not likely to be useful or accurate.

I also agree that her pattern of illness doesn't sound that unusual for natural progression with a post-viral illness. It seems likely that there are going to be a lot of stories of recovery from treatments that may be completely useless, given the high rate of natural recovery we'd see from most 'post-viral fatigue'. I remember back when covid started I was concerned that it would lead to a lot more problems for us if LC and ME/CFS were quickly seen as the same thing.

edit:

Here I was, May 20th 2020:

With ME/CFS, it always pays to be as cynical as possible.

 

No, but I do think that LP and its practitioners are patronising and disempowering.

I’ve not seen any evidence to convince me that anybody is helped by LP and there is good evidence to suggest that it is harmful pseudoscience. I think it is a commercial scam and that everybody who pays for it is a victim, regardless of whether they say or believe it has helped them.

Wikipedia describes brainwashing as “the concept that the human mind can be altered or controlled by certain psychological techniques. Brainwashing is said to reduce its subjects' ability to think critically or independently, to allow the introduction of new, unwanted thoughts and ideas into their minds, as well as to change their attitudes, values and beliefs.” That is a fairly accurate description of my understanding of LP.

 

It also says: "The concept of brainwashing is not generally accepted as a scientific term.[7][8]"

I feel as if that makes it a less than ideal term to use when criticising the pseudoscience of others.

I guess it depends on how 'harmful' is defined, but what are you classing as good evidence that LP is harmful?

It's very difficult for an individual to be certain of what improved of worsened their health, especially with a fluctuating condition, but when people say LP has helped or harmed them, I don't think that there's sufficient evidence either way to dismiss that as a sign of irrational thinking, or 'brainwashing'. I also don't think we should be confident that they are right. There's always uncertainty in how to interpret personal testimony like that.

 

So, ME is back to the Lifestyle section of a national paper.

 

I think it's possible to try too hard to accomodate people who are not interested in reality.

In a sense we all want the same thing, but the LP promoters aren't interested in dealing with reality (and that's also why they'll never be able to find a solution). They're more interested in telling positive, empowering stories that give hope. Even when that's an illusion.

 

Not as far as I am aware?
'Psychology' is by and large not science, as Popper said when he defined science.

 

Please tell us where this comes from, @Esther12.
It IS just fairy dust.
There is nothing unfair about saying it is all nonsense.
In fact, as far as I can see, it quite specifically avoids any invocation of psychological dogma like transference or secondary gain and makes use of popular folk psychology.

People are miraculously cured by all sorts of things. There is nothing to indicate that LP has any specific ingredient that works. And so the claim that there is is fraud.

However much one wants to respect patients' testimonies, irrational beliefs are everywhere. People believe they have illnesses because of so and so or have been cured of an illness because of so and so. Nearly half my relatives, despite being in medical professional families, have these beliefs. Finding people who believe they have been cured by LP is going to be only too easy. This is the stock on trade of quackery.

The extraordinary thing is that the psychiatric professionals who have been pretending their work is more thorough and scientific have leapt to the cause of LP. So they were just the same after all. The mask has slipped.

 

I've only skimmed a few comments here.

If you have an individual saying that the LP helped them then I think it's entirely reasonable to highlight that NICE reviewed the evidence and found that it did not. While an individual is entirely free to use something they consider beneficial that is not the case for a public body spending my tax --- I agree with NICE; therefore, it should not be funded and I welcome NICEs clear public statement that there is no evidence that it works --- caveat emptor --

SMILE - again NICE pointed out it was low/very low quality i.e. unsuitable to base decisions, to fund ---, on. Caveat emptor --

I think we should bear in mind that we are not seeking to control the behaviour of any individual(s) we are saying that public money/my tax should be spent in a rational and coherent way.

I do a little lobbying in Europe and we were issued a stern warning early on ---- if there are disagreements, if this is contentious then the Commission will walk away. I think that has an upside --- surely a politician (who wishes to be elected/re-elected) is open to persuasion that this (LP) is divisive and if they support it then their prospects of being trusted with public office/deciding how to spend my TAX, will be lower. A particular focus on women [predominantly affects women], mothers [disease occurs in women around puberty and late 30s/early 40s] might be useful.
@SNT Gatchaman @Hutan think there's a particular problem in New Zealand but perhaps focusing on the waste of public money/my TAX on LP might help.

 

[/QUOTE]

When making claims of brainwashing, whose testimonies are to be trusted?

edited to clarify that the following is intended as an example of how this sort of accusation can be turned back on members of S4ME, hopefully to illustrate how we would not be impressed by this sort of argument:

"Of course, not everyone will be helped by LP. But one of the sad things about approaches to ME/CFS that many patients report having helped, is that if they are seen as 'psychological' then we will see a very active online campaign to discredit them and the patients who report improving with them. That's why Recovery Norway is such an important resource. For some of those with ME/CFS it seems that the illness has become an important part of their identity, and that when they become a part of certain on-line communities there can be an almost cult-like desire to fit in with this false narrative of evil therapists preventing 'biological' breakthroughs by promoting psychological treatments that some patients dare say has helped them recover. I would not say that these online communities 'brainwash' patients, but I fear that they are often unhelpful and there is clear evidence of subcultures around ME/CFS that encourage the promotion of the most negative possible portrayal of treatments like LP."

As a group, we're pretty marginalized. And we're trying to challenge people who are really well connected to powerful groups. Turning this into a contest over who gets the most traction with accusations of 'brainwashing' seems like a high risk approach.

Don't make me trawl through their stream of largely useless references! I can't see the page now, but for at least a while there was an LP website posting links to all sorts of research on neuroplasticity, various biological associations with emotional strain, etc. None of this validates the LP as a treatment, or shows that Parker was right, but it does show the LP tactic of trying to latch on to legitimate areas of science. Given Parker's history, I think it's fair to question the extent to which this is a cynical PR tactic, but if it is, it's a sensible cynical PR tactic and one that is more complicated to challenge persuasively than if Parker was just talking about magic fairy dust.

I agree. And I think that the problems with SMILE are much more serious than just those recognised by NICE. Pointing out all these sorts of issues seems entirely fair.

I think it's valuable in a discussion to try to explain those issues in a way that will be understood by people who start thinking "a report of recovery from LP - that sounds good. I've heard some patients are offended by psychological therapies but I'm not, and would happily try anything that might help."

Making strong and dismissive claims without explaining them seems like a common thing on twitter, but I don't think it's particularly useful for helping other people make more informed judgements. Instead, I think it's very often something that backfires.

 

I think this is a also a good one to inform people about the LP
https://fraudlisting.com/index.php/the-lightning-process/

 

I'm suggesting that this slur will seem similar to you to how accusations of 'brainwashing' will seem to those who think that the LP has been/may be helpful.

I'm certainly not defending it!