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Experiences of Young People with the Lightning Process (Chalder 2012)

Simon

Senior Member
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Monmouth, UK
Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis – a qualitative study
Silje Endresen Reme1,* Nicola Archer2, Trudie Chalder2

Objectives
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a serious condition characterized by debilitating but unexplained fatigue. Treatment alternatives are few, and especially so for young people. The aetiology of CFS/ME is still unclear and controversial, but rehabilitative interventions seem so far most promising. The Lightning Process is a 3-day training programme that has recently become available, but no outcome studies have yet been published. It is a non-medical training programme that combines concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. The aim of this study was to explore the experiences of young people with CFS/ME after they had undergone the Lightning Process.

Design
Qualitative research study.

Methods
Semi-structured interviews were conducted with an opportunistic sample recruited through open advertisements of nine young people, aged 14–26, who had undergone the treatment, and three of their parents. Inductive thematic analysis was used to evaluate the content of the interviews.

Results
Mostly positive experiences were reported of the Lightning Process. Two reported dissatisfaction and no improvement, while seven were satisfied and were much improved. Particular helpful aspects were the theoretical rationale, practical exercises, and the technique they learned. Less helpful aspects were the intensity and short duration of the treatment with little follow-up, the secrecy surrounding it, and feelings of being blamed if the treatment did not work.

Conclusions
As this is the first report of young people's experiences with the Lightning Process, it will be important to consider the helpful and unhelpful treatment components for future refinement of interventions for CFS/ME.

Statement of contribution
What is already known on this subject? Treatment alternatives for people with CFS/ME are few, especially for young people. The Lightning Process is a popular treatment programme that has recently become available, but no studies involving the treatment have yet been published. Feelings of blame or dismissal in CFS/ME patients lead to withdrawal or disengagement from professionals.

What does this study add? The Lightning Process for young people with CFS/ME encompasses many positive aspects, particularly the practical aspects of the treatment programme. The more extreme position taken by the Lightning Process in denying the limitations of the illness seem to produce divergent results in various young people; some found it liberating and therapeutic, whilst others did not respond well to it and were left feeling guilty and blamed.

Quick comment by me: edit: deleted as I don't think it was accurate.
 

Sparrow

Senior Member
Messages
691
Location
Canada
Makes sense to me. It centres around reducing the stress response, doesn't it?

Stress does seem to be one of the triggers for crashes. So if you avoided more stress, you would have fewer crashes. That part can be true.

But you would still have the illness. And if your case was bad enough that the backslides you suffered due to exercise, or mental activity, or other factors were noticeable and still debilitating, you'd still be profoundly ill.

I also wonder how many of those young people recovered not because of the process, but just because their bodies went into a temporary remission. I know that mine did at that age, without any medical intervention at all. Unfortunately the period after that was a gradual slide back down.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
So what was the sample size? How did they measure improvement? What was their activity level before and after? How much did their PEM improve? How much activity can they now do without worsening pain or fatigue?

Seems like the authors are not interested in asking the right questions.
 

Sasha

Fine, thank you
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UK
Can't see anything on what selection criteria they're using for patients.
 

Simon

Senior Member
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Location
Monmouth, UK
I also wonder how many of those young people recovered not because of the process, but just because their bodies went into a temporary remission. I know that mine did at that age, without any medical intervention at all. Unfortunately the period after that was a gradual slide back down.
Good point that with such a young sample there would be a high level of improvement - and of course there was no control group.
So what was the sample size? How did they measure improvement? What was their activity level before and after? How much did their PEM improve? How much activity can they now do without worsening pain or fatigue?

Seems like the authors are not interested in asking the right questions.
Sample size was n=9. To be fair, it was specifically a qualitative study often done as the first step of testing a therapy to look for ways to improve the therapy, not a quantitative study to look at its overall effectiveness: the study was far too small for that.

Looking at it more carefully, the sample was not random so the proportion of improvers vs unsatisfied isn't meaningful
Semi-structured interviews were conducted with an opportunistic sample recruited through open advertisements of nine young people, aged 14–26, who had undergone the treatment, and three of their parents
Those who had particularly good or bad experiences are more likely to reply than those for who had a moderate experience.

Seems to me a fair enough start, but it really is just dipping a toe into the water. The very good/very bad experiences reported to tally with anecdotes, but bigger and systematic stuides would be needed to measure effectiveness. I'd rather the Lightning Process was studied in research than ignored, leaving proponents to make whatever claim they want about LP.
Can't see anything on what selection criteria they're using for patients.
Don't know, but my guess is "whatever".
 

Bob

Senior Member
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16,455
Location
England (south coast)
I'd rather the Lightning Process was studied in research than ignored, leaving proponents to make whatever claim they want about LP.

Usually I'd agree with that, but I don't agree with testing the Lightning Process on children, especially children with ME, because of the potential long-term physical and psychological damage it could cause.

There could be physical damage, because, as we all know, ignoring our symptoms can result in serious damage.

And there could be psychological damage, because LP trains people to ignore their physical sensations, symptoms and illness. This could have a number of potential detrimental psychological effects. Firstly it trains children to dissociate themselves from their bodies, and physical sensations. This could potentially result in all sorts of unexpected psychological issues arising later in life. Secondly, it trains children to ignore feelings of exhaustion and pain. This could have all sorts of consequences, as pain and fatigue are evolutionary protective mechanisms for the body. Thirdly, by teaching children that their illness and symptoms are not of any real consequence, and that there is nothing really wrong with them, it undermines and invalidates their personal experiences, thus teaching them that they don't experience reality in the way that other people do, and that their personal experiences do not have the same worth or credibility as other people's experiences. It seems very undermining.

Also, if a child reports that they feel better, is this really the case, or are they just saying what they think everybody wants them to say? Children naturally try to fall in line with what they are taught, so if they are taught that it is preferable to say that they feel positive, then that's what they are likely to say. They will say what pleases the adults who are training them.


The validity of the results of an LP trial also depends on whether they are using subjective or objective assessments.
From what I understand of it, the Lightning Process is little more than a positive thinking training course.
Participants are taught to train themselves to ignore their symptoms, and to have a positive attitude, or to feel positive.
So if the main measures of success in the trial are all subjective, as they were with the PACE Trial, and a participant reports that they feel better, have they really improved or have they just learned to ignore their symptoms and to say that they feel better despite their pain etc?
So I think that a trial using subjective measures is deeply unhelpful and could be very misleading.

If the results come back positive, and they only used subjective measures, then ME patients, including very vulnerable children, are going to be continuously told the LP is a good thing, and persuaded and coerced to undertake a course, and then blamed if they don't complete the course, or don't cooperate, or don't get well.

But for ME, positive thinking is not going to be any more helpful at improving the disease than it would be for AIDS or MS, for example. We know that already, and we don't need a trial to inform us, just as we didn't need the PACE Trial.


My most immediate concern is for the safety of the children being subjected to such a psychological training course.

I think it is negligent to expose children with ME to LP. I think it lacks compassion and empathy, and is ill-informed, stupid or arrogant. It is potentially dangerous. I understand why desperate and under-informed parents might want their children to attend such a course, but members of the medical profession should know better, and should be protecting parents and children from potentially dangerous practises.
 

SOC

Senior Member
Messages
7,849
Actually, I think it is corrupt and negligent to expose children with ME to LP. I think it lacks compassion or empathy. I think it's potentially dangerous. And it is stupid and arrogant. I understand why desperate parents might want their children to attend such a course, but members of the medical profession should know better, and should be protecting parents and children from such potentially dangerous practises.

I agree. As far as I can see, there's no reason to use children in this research rather than adults except that children can be more easily bullied and manipulated by adults.
 

Sean

Senior Member
Messages
7,378
It is a non-medical training programme that combines concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy.
I'd rather the Lightning Process was studied in research than ignored, leaving proponents to make whatever claim they want about LP.
Words cannot express how angry I feel that a single penny of precious research or clinical funds, or a single jot of patients' already very limited time and energy and hope, was wasted on attempting to legitimise this blatantly fraudulent, abusive pseudo-scientific drivel.

It is one of the greatest hypocrisies and scams I have ever seen from so called mainstream medicine.
 

biophile

Places I'd rather be.
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8,977
A rapid enough recovery so that you could manage the rest of the 3 day course?

"Trust me with your $1000 and your health", said the spider to the fly.
 

Bob

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England (south coast)
I see your point, but at least in this case the research was on people who had already done LP of their own choosing.

Yes, this study was not putting children at immediate risk, but Esther Crawley is coordinating the SMILE trial, which is a proper trial of LP for children.
It wouldn't be quite so bad if they were investigating adults.

Maybe from an ethical perspective the way forward is a systematic follow-up of people who have also already done LP by choice. I do think getting hard data on the LP would be very valuable.

Yes, it would be valuable to be able to demonstrate that LP isn't a medical treatment, just so we don't have to hear about it any more. But should we really be investing money in this sort of thing? Do we really need a medical trial to find out if positive thinking improves a neurological disease? It's almost as if the enlightenment didn't happen, and we didn't learn any science over the past couple of centuries. This is non-science. It's little different to faith healing or 'curing' gay people with aversion therapy. Can AIDS be cured by positive thinking? Can Parkinson's disease be cured by positive thinking? etc.

Sorry, I'm ranting a bit now. But it is a ridiculous situation.

I personally am a huge sceptic about the LP and have numerous people try to foist it on me. By chance, there was an LP course in the small town where I live and out of curiousity I phoned up the LP practitioner to ask if they could accomodate me. It was a 5 hour a day course for 3 days, way more than I could manage. Basically he told me that after a couple of hours of the course I'd find that, in fact, I would be able to manage the course. 'Trust me' he said, knowing almost nothing of my condition. So I thought it was reasonable to ask if he would refund the fee if I had a relapse by trying to take the course (pretty generous of me, I thought, given how much a relapse would cost in human terms). Tellingly, despite his apparent complete confidence in his claims, he wasn't willing to agree.

Yes, if they offered a dissatisfaction refund to all customers, then I wouldn't have quite such a problem with adults attending the course.
If a practitioner sees 10 patients a week, at £800 each, then that's £8000 fees a week in total.
That's £416,000 a year per practitioner. Not a bad little earner, for someone who has never done any medical training.
 
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taniaaust1

Senior Member
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13,054
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Sth Australia
If a practitioner sees 10 patients a week, at £800 each, then that's £8000 fees a week in total.
That's £416,000 a year per practitioner. Not a bad little earner, for someone who has never done any medical training.

I wonder if Trudie Chandler wants to this to be a good money earner to add to her therapies she does.
 
Messages
13,774
This from Chalder is a good reminder of how close her approach is to the quackery of the Lightning Process.

Recovery defined in terms of concrete
behaviour, not necessarily symptom free or
returning to previous lifestyle
http://www.newsavoypartnership.org/2011presentations/prof_andre_tylee_and_prof_trudie_chalder.pdf

If someone were selling me a treatment for 'recovery', I would expect it to allow me to be able to return to my previous lifestyle and be free of the symptoms of the illness. We've seen how psychosocial researchers are now trying to re-define 'recovery' in ever more absurd ways as they come to realise how poor their treatments are at leading to real improvements - these sorts of manipulative word games are exactly the sort of 'positivity' Phil Parker and his ilk make their money from.

Edit: I've saved a copy of this, if it goes offline, 'prof_andre_tylee...' - if it goes offline, feel free to PM me.
 
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biophile

Places I'd rather be.
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8,977
Good point Esther12. Chalder's statement is odd because usually they have ignored behavioural definitions of recovery and focused on self-reported symptoms only, arising in the ridiculous situation where people can be disabled and recovered at the same time. Now it is the other way around where as long as people reach normal pre-defined normal behaviour it is possible to be recovered despite major symptoms? Although part of her definition is probably trying to account that not everyone who recovers from CFS is going to have perfect health, just as many otherwise "healthy" people in the general population are not free from occasional symptoms.
 
Messages
13,774
Good point Esther12. Chalder's statement is odd because usually they have ignored behavioural definitions of recovery and focused on self-reported symptoms only, arising in the ridiculous situation where people can be disabled and recovered at the same time.

I expect she's thinking of 'behaviour of not thinking one is sick', 'behaviour of not bothering ones doctor', 'behaviour of not believing one is deserving of assistance', etc.

Not 'behaviour of going out drinking and dancing all night', which is what I'm after.
 

Tito

Senior Member
Messages
300
Does this study mention WHEN patients reported their positive experience?

I ask because I read a while ago the story of a guy who had the 3-day treatment and who felt wonderful afterwards... Until a massive crash hit him pretty badly two or three months later. He explained during the course you do things and they make you believe that you are capable of doing them any time. You then become euphoric because you suddenly feels your life is back. That euphoria drives you to maintain that new level of activity... Until you crash. That guy even explained that he posted on their website a positive report just a month after the treatment. He later regretted it.
 

peggy-sue

Senior Member
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Scotland
Quite apart from all the usual issues, I take great exception to this statement from the paper.

"Treatment alternativesare few, and especially so for young people." (bolding mine)

Not, they're not "especially few" for children or young people.

There are especially few treatments for anybody and none of them worthwhile.
 

Bob

Senior Member
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16,455
Location
England (south coast)
I've just read through this paper. There seems to be some balance in it, in terms of the positive and negative experiences that the patients reported, but it's impossible to know how much balance, and what details were omitted.

Also, of course, the paper does not include a comprehensive critique of the Lightning Process. It mainly only explores subjective issues that were discussed by the participants.

Some of the issues that we are aware of, and have discussed at length, in relation to the Lightning Process, were raised by the patients. (I've highlighted many below.)

Eight of the nine participants were diagnosed as having Oxford CFS before treatment. (I can't see diagnostic details for the remaining one.)

Two of the nine participants reported no improvements from the treatment, and seven reported positive effects.

Overall, the paper places the Lightning Process in a positive light, and the nature of the training course would probably not seem unreasonable to the casual reader.

I've selected some interesting extracts, below, but perhaps it's an unbalanced selection of text, because of my own biases and opinions:

Reme et al. said:
‘It was really, really taxing the first day because it started at 10 and didn’t finish until about seven in the evening, and there were also about seven other people there which is like…considering I had been like housebound for years I hadn’t really got…like, saw anyone, it was like quite a massive thing. And by the end of the first day I was absolutely shattered’

‘One thing I found was that…being under a specialist and doing the Lightning Process…sometimes their
advices conflicted’ [...] When other specialists and therapists would advise their patients to be careful with too much activity and be sure to pace themselves, the Lightning Process would tell them that they could do anything they wanted without letting the illness limit them.

The general impression of the treatments’ effectiveness split the young persons into roughly three categories, as seen in Table 2; those who experienced an instant healing, those who experienced a more gradual improvement that continued after the treatment ended, and those who did not find the treatment helpful.

'[...]The physiology stuff at the beginning I didn’t find helpful because I don’t think it was fully explained, cause to be honest I don’t think they fully understand it themselves’


Case History: A Negative Experience (extract):
Her experience was that the Lightning Process programme placed the full responsibility for recovery on her; if she didn’t do what she was taught at the seminar, it was her own fault that she didn’t experience any improvements. This was her first real treatment she had ever undergone for her ME, and her expectations for recovery were very high. When she didn’t experience any recovery, and in addition felt blamed for the lack of recovery, she ended up experiencing a double burden in which she felt both angry and hurt about. She felt deceived to believe the programme had a 100% success rate, and she felt it was unfair to blame her for the lack of effect.


Case History: A Positive Experience (extract) (This patient, who had had CFS for two years, experienced the most benefit, out of all participants, and returned to full time work after treatment):
She was there being made aware of the specific thought processes that she had to work on and change, which could be quite different from patient to patient. She realized how the illness had infiltrated almost every aspect of her life, and how every little thought and behaviour had been affected by it. She learned how thinking about the illness could make the illness worse, while the opposite could promote recovery. And for YP7, it did lead to recovery. After
finishing the Lightning Process, she was soon able to resume full-time work.

When reflecting on the differences between Lightning Process and CBT, she noted some important differences. Although similar in its focus on changing patterns of thoughts and behaviour, her experience was that Lightning Process had a more radical approach. While CBT was more about accepting the illness and coping with its restrictions, Lightning
Process was more about refusing to let the illness have any control or influence at all. The methods of gradual increase of activity and behaviour were quite similar, but the beliefs and motivation underlying the behaviour were slightly different. And for YP7, the Lightning Process approach seemed to work best.


A possible sick role has been suggested as a contributory maintaining factor for CFS in some people as illustrated in the case history of YP7, and indeed secondary gains from CFS have been shown to reduce the likelihood of improvement following psychological therapy (Bentall et al., 2002).

This bears a high resemblance to CBT with only slight differences in terminology; where CBT would talk about challenging and changing unhelpful thoughts and beliefs, the Lightning Process would say something more like the following: ‘…whenever you get a negative thought, emotional symptom, you are supposed to turn to one side and with your arm movements in a kind of stop motion, just say STOP like very firmly and that is supposed to cut-off the adrenaline response’ (YP2). Some were unsure whether the theory was scientifically valid, but they still found it logical and believable.

Some found the teaching confusing and incomplete and not well organized. There were different opinions regarding the therapists; some had only good experiences, while others found their therapist too controlling and not open for critical questions. 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. There was, however, consistency in the interviews regarding positive and negative characterizations of the
different therapists, indicating that a possible therapist effect could be important for treatment engagement and recovery.

The secrecy surrounding the Lightning Process was also criticized and was thought to result in unnecessary sceptical and prejudiced attitudes from people. Unlike other treatments where you can openly share your treatment experiences with other people, participants undergoing the Lightning Process are specifically encouraged not to talk to anyone about it. One of the participants describes it like this: ‘…and also because you are not really supposed to talk about it with other people, is what he said, because it only confuses you and them. You don’t have anyone to talk to about it with so you feel kind of alone’ (YP2). Several of the participants highlighted the secrecy aspect as unhelpful and difficult, resulting in prejudice and lack of understanding from people around them.

Another key criticism was the impression the staff communicated about the Lightning Process always involving a quick recovery. ‘I think that the general impression that is being given is that once you have been doing the Lightning Process, the lightning is quick, you will feel better and can do whatever, whereas I don’t think that is the right impression. I think that stamina and strength is something that has to be built up gradually. And I think that could have been covered better’ (YP6).

More serious are still the reactions and experiences of those not recovering from the treatment. They felt that they were blamed for the lack of treatment success, and consequentially struggled with feelings of guilt and anger. ‘I think the worse bit for me was actually after I had done the process and I found it hadn’t been working and I spoke to
(therapist’s name) about it, you get a couple of follow-up phone calls, and I said to him that it wasn’t working and I didn’t know why, he basically told me it was my fault and that if it wasn’t working it must be because I wasn’t doing it properly’ (YP4). They also reported of hearing about similar experiences from other young people who did not find the treatment helpful, and were told that if they were not getting better it was their own fault. The last negative aspect that was mentioned was the dishonesty the staff showed when they claimed the treatment had a 100% success rate. ‘I think the people that run it say they have 100% success rate, but obviously that is not true, and I just think that the way they go about it is awful, blaming people that if it doesn’t work then, you know, it’s your own fault. I think that is absolutely awful’ (YP1).

Participants also felt that there was some dishonesty in claims that the Lightning Process has a 100% success rate. However, we should note that Phil Parker’s website now states that ‘81.3% of clients report that they no longer have the issues they came with by day 3 of the LP course’ (Parker, 2011).

The current finding that some participants reported an unhelpful aspect of the Lightning Process as a sense of being blamed if the process was unsuccessful, was in line with previous qualitative research in CFS patients showing that feeling blamed or dismissed led to withdrawal or disengagement from professionals (Larun & Malterud, 2007). Perhaps the difference between the Lightning Process and CBT highlighted in the second case story (YP7) could help shed some light on this. The more extreme position taken by the Lightning Process in denying the limitations of the illness could produce divergent results in various people. Some may find this approach liberating and therapeutic, whilst others may not respond to this approach but rather be left feeling guilty and blamed. This could be pursued further in future studies to investigate if different patients benefit from different approaches. If they do, matching the right patient with the right treatment could help improve treatment outcomes.

Furthermore, participants of the Lightning Process are usually highly selected on criteria involving ‘readiness for recovery’, which not only select those with the best prognosis for recovery but also somewhat limit the generalizability of the current results.
 
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