Lightning Process: Evidence that participants are taught or expected to misrepresent or lie about their symptoms

forestglip

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I've come across the claim that the Lightning Process (LP) intervention, at least in some cases, includes coaches teaching patients to misrepresent or lie about their symptoms to others.

If this were true, any trials of the LP which rely on subjective outcomes would be completely unreliable as indicators of improvement because patients would be taught to give a false answer for the subjective outcome itself. For the same reason, anecdotes about the benefits of the LP would be virtually useless, even if very large numbers of such positive anecdotes existed.

I never came across a compiled collection of evidence for the above, so here I want to collect all anecdotes or other evidence that participants of the LP are taught or expected to present a misleading account of their symptoms to others. I'll also include other reasons that accounts of improvement due to the LP may be uniquely unreliable, such as feelings of shame or guilt if the participant does not say they have improved.

Let me know if there are other accounts, and I'll add them here.



Published Research

Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis – a qualitative study, Reme et al, 2012
Alternative viewpoints brought up by the young people would not be well received, and a few experienced a normative pressure to be happy all the time and not express any negative feelings, which they found difficult.

News articles

(BBC) Long Covid course is ‘exploiting people’, says ex-GB rower
In secret recordings by the BBC [...] The coach on the course stressed the importance of avoiding negative thoughts and words like "pain" and "fatigue", claiming using them can continue symptoms.

Blogs/Other online accounts

Anecdotes on website "LP Does Not Work For Me"

Person #1:​
There are a lot of positive testimonials on the website. I have not studied them all but a lot of them have been written soon after completing the training, usually within several months. I must admit that I too would have written a glowing testimonial during the five weeks after because I was still 'geed up' by the process. Also, because the process instructs you to only concentrate on the positive, it is a very convenient method of filtering out any negative and adverse comments. For instance, Phil asked us to email him a few weeks after our training with a progress report but he specifically told us to only mention the positive things that had happened to us and not to mention any negative feelings, symptoms or experiences we'd had, obviously with the laudable aim of concentrating our minds on the positive. It also has the convenient benefit of providing purely positive testimonials for the LP.
I was severely disappointed that the Lightning Process hadn't worked for me, and when I realised it had actually harmed my health as well, then I did actually try to forget about it for a while whilst I tried to regain a tolerable level of health again. It has taken a considerable length of time for me to realise that in no way was I to blame for the fact that the LP didn't cure me and in fact made me more ill. I suspect there may be many others like me, who are unable to admit that it didn't work for them, either because they are too ill, too embarrassed or still brainwashed into believing that it's their fault that it didn't work.

Person #2:​
However, the mere fact I had paid so much money meant I was going to do exactly as they told me: it had worked for others and it could work for me. We were told to do The Process thirty times that evening. I went back to my guest house and did as I was told. I spoke to my loved ones but when they asked how it went I was reluctant to talk about it. The tutor said that if we tell people about the process if won't work. That's right, to talk about the process means it can't work for you. She also told us that no matter how she feels she tells everyone she "feels fabulous". I wasn't quite ready to tell people I felt fabulous but equally I didn't tell anyone how much the first day had tired me because that is a negative thought and that must be countered, so I did my thirty processes, went for a walk and then to bed.
Any awkward question for the rest of the session was answered with, "It's a three-day process," or anything even more awkward she says we can ask in the individual sessions we are having the next day.

If anyone says anything she thinks is negative we are interrupted and corrected.

At one point she left the room. It felt very naughty but I whispered to one of the women sitting next to me, "How are you? Is this working for you?" She was reluctant to answer, to say anything but that she was doing well would be to go against the process because that is a negative thought. It was pointless asking, really.

(Podcast, 'Medical Error Interviews'): 'Alice Urbino: scam ‘lightning process’ causes internalized gaslighting - beware of charlatans'
You're not allowed to say the word "tired" or "ME", like you're not allowed to ever say any words relating to it. And if you do, they, like, scold you. So they ask you how you feel, and you say "I'm tired". They go "wrong, you're not allowed to say that." And it's like, so I'm just supposed to lie all the time, I guess. I'm supposed to just pretend I'm not feeling what I'm feeling.

Joan McParland

We went outside, which we were told, when you go out, do not talk about anything that has happened in the room that day. Don't discuss it.
You were told, do never talk in anything, only positive words, positive terms. So Paula and I used to have these stupid conversations on the phone. "What did you do today, Paula?" Or "what are you going to do?". "Well, I'm going to get washed and showered and dressed, and I'm going to go shopping." That's what you were told to do. So you were that scared and you were that, probably, annoyed about spending 880 quid. You were going to do that. You were going "I'm going to speak in positive terms and try and do all these things". And as the time went on, our health was going down and down and down, and then we had to admit to each other, "this is a load of crap". It's mind games.
And then he told you, ring anybody you have at home. That was my husband. And remember to speak positive terms only. Do not be negative. So I rang my husband and told him I was cured.

We were not allowed to discuss the process with other sufferers but just to do it and recover. We were told to cut off all contact with other M.E. sufferers and when asked about LP to say we were cured. We were told to ignore symptoms and keep saying we were cured regardless. I know this sounds crazy but the coach was excellent at his job of VERY high-pitched sales and the people he was selling to were very desperate to get better.

Posts from S4ME members

User #1
When I did the LP, one of the things we learned was to exaggerate the way we talk about our health in a positive way.
Then on day two we did an exercise were we had to get up in front of the group and talk about how much we had been able to do after the first day of LP, and how wonderful we had felt.
We were told to use big, strong body language, and use words like "incredible, amazing, wonderful" - only strong positive words, about how great we felt and how much we had done. The rest of the group should judge if we had exaggerated strongly enough, and if they thought we didn't, we had to do it over again.

User #2
Also remembering this day two of the course as particularly insane, first attending the course day one, then instructed to go out and “enjoy” no matter what. Then on day two to put on a smile and lie to yourself and all others about what you had done and how wonderfully fine you felt, though awful and PEM. Then on day two to put on a smile and lie to yourself and all others about what you had done and how wonderfully fine you felt, though awful and PEM. But it didn’t stop there, when coming home and then continuing to lie to yourself and friends. Yepp, I’m not ill anymore. Totally brainwashed. Fascinating in hindsight. But it was like this; I have to try, have to lie and go on, see where this goes, even when experiencing that you were heading in a totally wrong direction and straight into the ditch.
 
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I thought that was a large part the point of the Lightning process, you lie to yourself that you aren't suffering symptoms and to other people and then your body "manifests" the recovery by fixing the errant brain linkage its claiming is the cause. Given that none of its results can ever be trusted and neither can testimonies on it.
 
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Within the framework of the LP, it's not lying or misrepresenting and it's the core part of the whole thing. You're "doing" ME, you don't "have" ME. So by saying "STOP, I want the life I love!" or whatever and putting up your hand, you're no longer "doing" ME. And that means you're cured, within that framework, if you're performing the LP correctly.

And yes, it renders studies invalid, although they were already invalid anyway given the reliance on subjective outcomes in unblinded studies. But that argument about the specific nature of the LP making it hard to get legitimate answers hasn't worked with journals and peer-review committees.
 
However, the mere fact I had paid so much money meant I was going to do exactly as they told me: it had worked for others and it could work for me. We were told to do The Process thirty times that evening. I went back to my guest house and did as I was told. I spoke to my loved ones but when they asked how it went I was reluctant to talk about it. The tutor said that if we tell people about the process if won't work. That's right, to talk about the process means it can't work for you. She also told us that no matter how she feels she tells everyone she "feels fabulous". I wasn't quite ready to tell people I felt fabulous but equally I didn't tell anyone how much the first day had tired me because that is a negative thought and that must be countered, so I did my thirty processes, went for a walk and then to bed.
We were not allowed to discuss the process with other sufferers but just to do it and recover. We were told to cut off all contact with other M.E. sufferers and when asked about LP to say we were cured. We were told to ignore symptoms and keep saying we were cured regardless.

These strike me as the sort of descriptions you'd only use about a destructive cult.
 
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