by David Tuller, DrPH
Aura-reader and Tarot expert Phil Parker, also known as the founder of the Lightning Process, has posted a video on YouTube of an “ME/CFS success story.” Without knowing anything about Amy’s situation or medical history beyond what she shares, I have no reason to disbelieve her testimony of recovery from illness. But I also have no reason to believe her testimony means the Lightning Process can cure people of ME, multiple sclerosis, eating disorders, or any of the other claims that have been made repeatedly by practitioners. Some people might find such videos convincing, but they are meaningless as evidence of anything other than what the protagonist believes.
(I won’t link to the video, but there’s a discussion of it on the Science For ME forum.)
The pediatric study of the Lightning Process, conducted by my BFF at the University of Bristol, purported to document that the intervention was “effective.” In reality, it was a dung-heap of methodological and ethical violations. It has now been slapped with a correction that seems almost as long as War and Peace.
In truth, when I downloaded the correction into a Word doc, it came out to 2,849 words. That was accompanied by a 983-word “editor’s note” that offered tortured logic to explain why this disastrous study only required “clarifications” rather than retraction. Since the study would never have been published in the first place had the investigators been honest about the conduct of the study, it is disturbing that Archives of Disease in Childhood has allowed them to republish their original and obviously biased findings.
As a counter-weight to the propaganda and false information emanating from Bristol, Phil Parker and BMJ, I thought I’d repost an account from my friend Joan McParland, the force of nature behind Hope 4 ME & Fibro Northern Ireland, about her own experience with the Lightning Process. She wrote this statement years ago–long before publication of the Bristol study.
Joan McParland’s Account
I am almost ashamed to say that I tried LP last year. After ten years of this dreadful illness I think my reasoning has become unreliable as I am so desperate to get better and get my life back to normal.
The great publicity given to LP as a cure for M.E. is hard to ignore and as you read the ‘recovery’ stories the thought of good health overcomes any misgivings you might have about this mysterious ‘cure’. The fact that there is NO diagnostic test for neurological M.E. leaves one with the question of exactly who does have M.E. rather than chronic fatigue or depression. This miracle cure claims to cure a disease of which medical research has not yet found the cause (impossible).
The course consisted of three days from 10am until 2pm with a half-hour break for tea and biscuits (no lunch). The cost was Â£880.00 – plus two nights in a nearby hotel (as the coach advises to stay away from home and look on this as a life-changing holiday).
There were four people on the course, so that’s Â£3520.00 for the coach for just over ten hours work. Not bad wages! The coach was very friendly, caring and convincing he could teach us how to recover. He told us he had recovered from M.E. after seven years and been in a wheelchair at one stage. Another lady who was learning to become a coach was taking notes and observing everything. She too told us she had had M.E. but was now recovered by the process.
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. The product he was selling us was positive thinking; nothing more, nothing less.
The Lightning Process is:
Believe the Lightning Process will cure you.
Tell everyone you are cured.
Stand on paper circles with some key words written on them.
Learn to say a rhyme when you feel symptoms, no matter where you are, and as many times as it takes to make the symptoms just go away!
Speak in positive words and think with positive thoughts only.
Shout “Stop!” at every symptom.
You are responsible and choose to have M.E. – you must choose a life you love.
If the process is not working, you are not doing it right.
That’s it, believe it or not. Sounds stupid, I know, but these are highly-trained life coaches and after handing over Â£880.00 we all tried really hard to give it our best shot. Not one of the four sufferers recovered and from talking to them I realised they were extremely sick, desperate people who, like myself, would do anything to get better.
It’s sad that we have to revert to every charlatan who looks you straight in the eye and says they can cure you. Cure you of what? So we are back to the same scenario.
Until there is a diagnostic test for neurological M.E. no one can cure us. You cannot treat a disease until you know the cause.
Many people self diagnose M.E. Many doctors diagnose M.E. but the average GP has no training in the illness. Many people suffer from depression and would probably benefit from LP but I can assure you no one can cure neurological M.E., yet.
Couch Turnip says
I watched the video of Amy and wondered how, with a full time job, she could have got time off to go on ‘lots of holidays’ in the 6 months since she recovered.
It’s disgraceful that desperate patients with ME have to try to find their own solutions to their pain and suffering and that they are driven to trying not only dubious therapies but also drugs that have been untested for their condition. How many have been harmed financially by paying out for bogus treatments that don’t work? How many have been harmed physically by treatments that sap any strength they had and/or leave them with awful side-effects or withdrawal effects? Decades have been wasted with funding going into psych research when good biomedical research could have been advancing and coming up with answers and safe treatments. The people responsible for that should hang their heads in shame.
As for BFFs, I hate to tell you this David but I suspect your BFF at the University of Bristol may be BFFs with some other people instead. Perhaps you could bake them a cake?
Alicia Butcher Ehrhardt says
I wish governments would do their job and put charlatans like the ones proposing expensive coaching classes in jail where they belong.
If something that simple really worked, we’d all be sharing it with each other, and everyone would try it and see if it worked for them.
And it wouldn’t cost anything – so millions of people worldwide could be made healthier, if not cured.
Then we’d call them heroes instead of the scum they are, preying on the few ME/CFS people who can afford to try their scam.
Peter Trewhitt says
Of all the various quack treatments and snake oil salesmen attracted to ME, the Lightning Process seems to have the most effective PR machine. Most people with ME receive regular newspaper cuttings or links to the latest miracle cure from well meaning friends. And if my experience is anything to go on by far the most common of these â€˜curesâ€™ pressed onto people with ME is the Lightning Process. For some this well intended promotion must constitute a considerable pressure to waste money that most can ill afford.
Most recently I was recommended it by a friend who is a GP with an additional degree in experimental psychology, who most certainly should know better and who now given the volume of my responding emails and links hopefully regrets doing so.
Lightning Process practitioners certainly seem to have gained access to the medical establishment in a number of countries. Just two years ago, one participated in GP continuing education at a national level in New Zealand, and the misconducted Bristol research discussed above was headed up by a paediatrician, who is also a professor of Child Health. Further, despite the demonstrated faults of conduct in this study, it is still being shielded by the University of Bristol and the BMJ.
Thank you David for continuing to address this unacceptable situation and for sharing Joan McParlandâ€™s account of just how empty the Lightning Process is.
Reading through the handouts and literature provided in New Zealand to GPs by the Lightning Process practitioner involved in the GP continuing education and some of her subsequent correspondence with interested GPs, it struck me it was akin to a fishing exercise with subsequent grooming of susceptible GPs. Further in the Bristol study, involving children and young adults, saw the young participants being instructed by people, seemingly endorsed by senior academics and medical professionals, to lie about their ongoing medical condition and ignore their symptoms. Surely such conduct should ring loud warning bells for anyone with even a rudimentary knowledge of child protection issues.
It seems to me it is not an exaggeration to say that the Lightning Process constitutes an abuse of people with ME, and we are still seeing this abuse receiving official sanction from individuals and organisations who ought to be the very ones protecting its victims.
Couch Turnip says
One other thing:
Joan reported that “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.”
If this is part of the Lightning Process, and I have no reason to doubt Joan’s account, (after all, Amy didn’t disclose what happens with the LP), then it’s bad enough for vulnerable adults to be told this, but if children are told that they mustn’t speak about the process with other people then that would be child abuse, wouldn’t it? So why aren’t paediatricians up and down the land raising concerns/calling this out?
Lady Shambles says
Others have made cogent arguments wrt the lunacy of the LP fraud itself. I would like to briefly add to Joan’s observations about diagnosis. Two particular concerns come to mind:
i) Criteria. Bonkers criteria (Oxford) and ‘not fit for purpose’ criteria (Fukuda) plus outdated-but-good criteria (CCC) are muddying the waters of diagnosis, assuming any doctor providing a diagnosis is using them at all. If the ICC criteria and primer were used properly I think we’d see a steep reduction in misdiagnoses of ME. After all we know from a few studies that cohorts of people intended for research programmes and drawn from ‘ME/CFS’ (whatever that is!) clinics can be misdiagnosed with ME to a ratio not far off 1:2 in some cases. So that implies (if we generalise to the whole ME population) that between one in two or one in three people told that have ME actually don’t have ME at all. That this could be so has given rise to a lobby of patients who take umbrage at the very idea. I find it absurd that people would a) want this disease (most of us would swap it in a heartbeat) and b) refuse to accept the failings of diagnosis that we know exist and have been observed for many years now… but I digress.
This leads me to
ii) Diagnosis. Obviously self diagnosis has inherent problems which anyone of sound mind can conjure.. it requires no explanation. Doctor led diagnosis however is whole different kettle of fish and leaves a great deal to be desired, and yet it, unlike self diagnosis, ought to be rigorous. If I use my own experience over the last 50 years of this disease, then I can report I have been diagnosed with ME (or various synonyms beloved of the UK medical profession) by four different medical doctors one of whom is a Professor and none of whom I’d really respect as being robust enough to properly diagnose ME as a discrete neuro-immune disease. One was definitely more able than the other 3, and it wasn’t the professor.
Why did I reach out for multiple diagnoses? I did so because as the disease progressed and unfolded over time, where new symptoms arrived or distorted etc, I wanted to be sure that the diagnosis I’d been handed was indeed correct. Thus in a haphazard manner (because proper ME care in the UK simply doesn’t exist as far as I can tell .. there are a very few exceptions of physicians do care but have limited access to testing / treatment) I ensured that over time I was ruling out as many alternative diseases as possible.
Ironically, when I was first diagnosed, the consultant ‘with an interest in’ probably made a lucky ‘stab’ and got the diagnosis right. Reading around the diagnosis I discovered it fitted my disease presentation very well… but even now, with all these years under my belt… I do not stop looking for alternative testing that might guide me to a different diagnosis, preferably one with a better outlook and prognosis than the one I’m presently lumbered with.
Why I do I know that my first consultant-led diagnosis was a ‘lucky stab’? Well because he handed out the diagnosis like sweets and I have known people who have been diagnosed as having ME (or synonym) by the very same consultant & who have subsequently had that diagnosis overturned when their real disease/diagnosis came to light because they were able to access a more intelligent medical practitioner. One of them was my own mother in law who had Parkinson’s Disease.
So what I’m saying is that it’s very possible many diagnoses of ‘ME (or synonym) are wrong. That far fewer people have ME than think they do. This is not ‘territorial’ ..this is about ‘fact’.. or as close to ‘fact’ we can be without a bio-marker. Thus in terms of the patients seen via the LP we have no idea how many had ME and how many didn’t. Anecdote is, as David has observed, meaningless.
Robert christ says
There will always be charlatans selling snake oil like the lightning process. And while I think all these types of charlatans should be rounded up and put in a forced labor camp to pay back their debt to society. What I find extremely disturbing is as another commenter put it.
“Further, despite the demonstrated faults of conduct in this study, it is still being shielded by the University of Bristol and the BMJ.”
Or in other words BMJ and Bristol, seem to be defending and promoting it.
Graham McPhee says
Rather than referring it to as LP, I suggest we should rename it as WLP â€“ the wallet lightening process.
Peter Trewhitt wrote: “I was recommended it by a friend who is a GP with an additional degree in experimental psychology”.
I still find it shocking that anyone promoting a miracle cure called “Lightening Process” isn’t laughed out of the room, especially in academia. Perhaps they should ask for a refund of their education expenses.
I recall there have been other periods of history where superstition, dogma, and appeal to authority trumped observation and logic. Seems like they were called “Dark Ages” or something.
What struck me about Amy’s video was how tired she still looked. Her eyes were dead and her face lacked normal expression and vigour.
It reminded me of a family member who feel prey to a similar program. She was also encouraged to tell people she was well and recovered and exercising.
However, her mother said that she could still not clean her home and was asleep or in bed exactly the same as previous albeit with increased exercise outside the home until she crashed.
Obviously I don’t know Amy and am only sharing my limited experience of one person who attended a similar program.
Maybe Amy always had the bags under her eyes, sounds very tired and was never very animated. It’s enough to make me wonder what is going on with her and worried she will have a major crash as seems to be the case with other LP survivors.
I’d post a comment to the Facebook page but it appears anything questioning is being removed.
Nancy Blake says
The Lightning Process is appalling abuse of anyone undertaking it.
NLP is often described as nonsense, but in fact it has very powerful and effective motivational strategies, as Joan’s account points out. This means that patients made enthusiastic about doing what they are told…get rid of aids, act as if you are well, ignore symptoms…can be lured into activities absolutely guaranteed to make them very much worse. The power of NLP to generate this makes it particularly dangerous to people with ME when used in this way.
(If it’s used to help people who have ME to reframe exercise as toxic and rest as treatment, and to maintain their self-respect despite their inability to do most of the things that they feel define them as valuable human beings, it can be very helpful…a tool is good or bad, depending how it is used.)
No one loves the IOM report, but it states clearly that in this disease ‘exertion of any kind….may adversely affect many organ systems’ and we know this all too well. See the recent MEAction Survey on the harms resulting from GET, and especially CBT plus GET.
The children in the Bristol research were put into an absolutely classical Bateson ‘schizophrenogenic double bind’: Told by the course to lie about their health, and to keep secret everything about the course, they were then persecuted by repeated phone calls to parents asking for answers to a questionnnaire about how the course had worked for them.
The ‘double bind’ consists of three features: Being told to do two opposite things at the same time. You cannot comment on the situation, and you cannot escape from the situation.
Children were being asked for answers on which they knew the treatment would be evaluated…normally honest answers would be expected in such a situation. But they’ve been told to lie, and to keep secret the fact that they’ve been told to lie.
This adds extreme psychological abuse to the physical damage incurred by the treatment.
On diagnosis: I have great respect for all the work done by the doctors and researchers who developed both the Canadian and the ICC diagnostic criteria.
But most people do not have either the resources or the medical system that would give them access to the diagnostic procedures described.
And what these criteria also ignore is that the most important thing, as far as the patient is concerned, is to have the immediate, complete rest which Ramsay recommended. If the first few months of the disease involve constant visits to a doctor or a hospital for a wide range of diagnostic tests, the patient may be guaranteed an accurate diagnosis but have permanently lost the possibility of significant improvement, or even the recovery reported by some patients who have been put to bed for six months right from the start.
This seems to me to be a blind spot in people who insist on diagnosis of Ramsay ME, but overlook the importance of his treatment recommendation. Which would be more important to you, as a PWME?
ME/CFS is a multisystem disease, about which I think we could agree with the IOM, and everyone else who writes about it, including the psychiatrists…exertion makes it worse. (Then, paradoxically, they pretend that exercise will make it better.)
If the central feature of your illness is that muscles fail when you try to do anything, and you also have a multisystem range of accompanying symptoms…headaches, digestive disorders, urinary problems, getting mixed up about words/remembering things/following plots of TV programmes, major drop in blood pressure on standing, sleep pattern reversal, sore throat…and these symptoms vary day to day…there aren’t a lot of diseases that have this kind of physiological range (and therefore inevitably regarded as a particularly virulent form of hypochondria!). As for logical causation…you over-exert one day, and the next day you get a sore throat..how does that work? (A potential answer is that if exertion stimulates some pathogen, the sore throat is an indication of the immune system trying to fight back.)
This whole constellation of symptoms is immediately recognisable by anyone who has ME, and if doctors wanted to, they could also recognise it and send their patients to bed. Of course they should look for other treatable diseases, but not at the expense of sending an ME patient into more severe and permanent levels of the disease. (One doctor during the final discussion at an Invest in ME conference remarked: ‘We take our patients into hospital for further testing. And our patients get better.’)
Finally, the nonsense about ME getting mixed up with depression. Really? I think that anyone reading this could find out in five minutes whether your friend who is sick is desperate to do things, tries, muscles mysteriously stop working, and they get really upset about it; or, is so discouraged and apathetic that they really don’t want to be bothered to do anything…but once they get active, they start feel a bit less hopeless. How hard was that ‘differential diagnosis’?
If LP is supposed to treat or cure ME, isn’t that practicing medicine without a license? How is it that regulators don’t seem to notice? Did somebody important suggest they should look the other way?
It doesn’t matter what labels the LP people give themselves or their “treatment”. What matters is that they are giving advice that is considered to be medical advice by the patients. We know from Ms McParland’s own words that she considered LP to be medical advice and treatment:
“The great publicity given to LP as a cure for M.E. is hard to ignore”
Joan McParland says
Thank you for sharing my LP story David, I hope it helps others make a better informed decision. It bothers me terribly, that children could be subjected to this… whatever itâ€™s called, brain-retraining, brain-washing, NLP, self-hypnoses or joining the LP cult!
I believe I wrote a follow up to this first account of my LP experience but I canâ€™t find it, here is the actual affirmation we had to learn, whilst stepping on the appropriate paper circles of â€˜stopâ€™ â€˜choiceâ€™ â€˜the pitâ€™ â€˜the life you love.â€™
So here we go……you are your own coach now.
Stand on â€˜STOPâ€™ paper circle, whilst making a crossed arm gesture (seemingly thatâ€™s the osteopathy comes in?) and shout â€˜STOPâ€™ when you have a negative thought or symptom.
Move to the â€˜CHOICEâ€™ paper circle, talk to yourself again, â€˜you have a choice.â€™
Move to the â€˜the life I loveâ€™ paper circle as few will want to go back to â€˜the pitâ€™ where you are now â€˜stuckâ€™ â€˜doingâ€™ ME.
With all the enthusiasm you can muster say loudly, â€˜I chose the life I loveâ€™
Tell yourself loudly â€˜well done Joan, you are a fantastic genius and Iâ€™m with you every step of the way.â€™
I forget the exact wording for the next question (to yourself) but remember the reply (to yourself) it was something like â€˜how are you going to achieve the life you love.â€™
Reply………â€˜By stopping every negative thought, every negative symptom and doing the Lightning Processâ€™
This affirmation was repeated and repeated until we were all able to go through the process unprompted by the LP coach.
We were also told, as it would be a bit strange to be talking loudly to oneself whilst in company, we should discreetly slap one hip, the minute a negative thought or symptom appeared and silently go through the affirmation and repeat up to 30 or 40 times daily until you stopped â€˜doingâ€™ ME and were living the life you loved.
Do not, underestimate the power of NLP as even I, became almost evangelical about LP for a few weeks until the euphoria started to wear off and any adrenal fuelled energy abruptly ended. The disappointment was horrendous and during the resulting relapse from all that â€˜living the life I lovedâ€™ Iâ€™d done, I felt like a fraud and a liar and for the first time during that first decade since ME onset, I felt depressed and even more hopeless. I felt guilty for wasting the large amount of money too.
Without the support of my family, I honestly donâ€™t know how I would gotten through the months of the whole crazy LP experience.
Anyway, after I had chastised myself enough for being so stupid I became very determined to speak out about this disease, so in a way, I can thank LP for being the very shove I needed and one of the main reasons I started the charity.
Perhaps I overthink things but I do wonder, where would an innocent child go with all these conflicting thoughts and mind games because as an adult, I found it extremely difficult.
Joan McParland says
Edit. â€˜By stopping every negative, every emotional symptom by doing the Lightning Processâ€™
Been there, done that. Have the very same experiences as described here. What LP meant in the real practical world, was a severe setback short term, and LP also contributed significantly ruining long term prognosis.
Itâ€™s chilling to read testimonies. The feeling of a cult, the language and the direct orders of how to interpret things, being told that you actually are doing ME and so on.
Going at it demanded efforts beyond, but as others, you get desperate and you have the heavy marketing and the miracle stories. Given the circumstances, it is not at all strange that in principle just about anyone can attend such course. Also remembering this day two of the course as particularly insane, first attending the course day one, then instructed to go out and â€œenjoyâ€ 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. But it didnâ€™t stop there, when coming home and then continuing to lie to yourself and friends. Yepp, Iâ€™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 to the ditch. What this brainwashing manner resulted in, was actually raising my percentage at work. I had sacrificed absolutely everything of health, really just floating on stamina and endurance and dealing with PEM to cling to my work, though only a small percentage. Now, newly brainwashed I raised the percentage 10%. It was madness. And then, after some months, stretching it far beyond healthy and reasonable, before that long beyond limits, it came to a hault. A full STOP! Work was reduced back to 0%, out of work for a long time. So from the course to full STOP it took about 6-7 months of continuous brainwashing, lies and putting health at serious risk and with devastating consequences. LP gave a substantial push in the wrong direction. I knew then and know now that LP was the total opposite of what I needed as a ME-patient. It was very dangerous. LP is nasty, sort of a mistrust in mankind. The method presupposes that man canâ€™t deal with disease in a positive and good way. Well, I think that is completely wrong for most people. That is missing the point completely.
In general I would say that as an ME-patient, most patients are more than capable of dealing with the consequences on a every day basis. They are adapting positively and LP is completely missing the target and potentially very dangerous for ME patients.
Jean Smyth says
It would sicken me to think that some very high profile people have endorsed the lightening process for financial gain. Then again some people would do anything if they were well enough paid.
Charlotte Pawle says
I just want to give a differing opinion and an honest summary of my experience with the lightning process. I’m not quite sure why Dr Tuller has called Phil Parker an aura and tarot reader. Maybe it’s supposed to be funny but it kind of discredits the article. I don’t know when Joan did the lightning process but it sounds like she had a very irresponsible coach and should try and get her money back. My coach absolutely did not pressure me to do activities I couldn’t manage and just pretend I was well. In fact I started feeling better very quickly and talked to her about getting a job and she said I was getting ahead of myself and it was too early to think about that. The idea was you did more active things once you felt well enough to do them. There was also self coaching and visualisation in the process that I learnt, it wasn’t just saying ‘stop’ and thinking positively. There was more to it than that. The course cost me Â£650 which is a lot but I did get a couple of follow up coaching sessions included after the course.
I have chronic fatigue syndrome. Before I did the lightning process I was constantly in pain, with bad brain fog and fatigue along with plenty of other symptoms. All my symptoms would increase if I did anything for too long. I could sometimes see friends for 1-2 hours once a week but it would increase my symptoms. Even crocheting for half and hour would increase my symptoms and I was diagnosed by my GP as well as a chronic fatigue clinic (who’s pacing and cbt did not make me any better).
I did the lightning process 3.8 years ago. It worked for me at the time and I was feeling mostly 80-95% better for around 5 months with some off days. At the time it was completely life changing. I was never consistent with it though, found parts of it hard to do (like the visualisation) and I got ill again but I’ve never been as bad as I was before I did it although I am getting close to being that ill again now. I don’t find the process easy to do anymore and can’t seem to immerse myself in it the way you need to so have stopped trying to do it and am going to try other things. Phil Parker wrote a book you can buy for around a tenner, which fully goes through all aspects of it so you can see that there is more to it than some people claim and that you don’t have to pay the full price to get all the content.