My son & i are giving the lightning process a go on this week

Kurt wrote:

Kurt, I wonder if you appreciate that LP is marketed not as a "treatment" or a "therapy" delivered by practitioners or therapists but as a "training programme" delivered by "coaches".

There is no professional body to which those delivering LP are accountable.

I have posted this newspaper letter on another LP thread on these forums:

http://www.thisisnorthdevon.co.uk/n...idn-t-work/article-613394-detail/article.html

in which the lady reports:

"[...] I told my instructor that, despite practising the process regularly, my symptoms had remained the same.

"He then said that I had obviously not followed the process properly, otherwise it would have worked.

"There was a dogged refusal to accept that it might be possible for the lightning process not to work even if practised religiously.

"I pointed out that to have an unbiased study you have to accommodate both sides i.e. those it has worked for and those it has not, but he then said that those it had not worked for were usually reluctant to come forward.

"This struck me as odd so I said that I would willingly publicise that it had not worked for me but he told me that if I did that he would simply tell people that I hadn't done what I had been asked to do.

"He concluded by saying that "we're not really interested in those it hasn't worked for anyway".

"Furthermore, he made claims to me that the lightning process was able to cure conditions such as cancer if practised properly..."​

There is no professional regulatory body for LP "coaches" with which this lady can take up her concerns which is one of the reasons why many of us in the UK have such concerns about this "training" process - particularly for children.

The Esther Crawley pilot is said to be using children aged 8 to 18 years old.

Do you think that a sick child of eight, nine or ten is capable of determining whether they are "ready" to undertake the "training" process? A "training" process for which no proper trials have yet been run for adults with ME, let alone involving young children with ME.

Incidently, a few years ago, some UK websites advertising LP programmes were claiming on their sites that LP could "cure ME/CFS".

Absolutely, Kurt, that's what this thread is about (although I think it was son, not daughter, no matter). Also, I think that, given no reliable diagnostic for ME, individuals need to work this out for themselves. On the other hand, I would strongly advise against the LP as a primary treatment for cancer or AIDS. I appreciate that these statements are slightly at odds with one of my earlier posts (go on then, blast me, I deserve it). But, I am confident that the LP will not work on the physiological components of disease.

Agree, it's not scary, and it's not difficult to counter the over-doing it. What is damaging (to progress and understanding) are the anecdotal claims and untruths. It is this that I campaign against. I actually think that the LP can be a source of knowledge. If we can organise some transparent, controlled studies, then we could learn something. I'm not sure that this will be easy to do given Phil Parker's style and interests, although if he could see it this way, he might even come out of it favourably. Not sure.

From what I read of others stories, I think I have mild CFS/ME - I only feel ill all the time, but it doesn't stop me appearing to lead a normal life, except to those very close to me - but I derived no benefit from the LP. I think the statements above about mild ME = major benefit from LP, but severe ME = minor benefit from LP, are another way of saying that if you haven't really got ME, you might get better with LP, but if you've got the real thing, it's unlikely to work.

So, Kurt, do you think it's a good idea, and if so, are you going to do it? I'm sure such a clear endorsement from you would give great strength to Coxy.

I'm very sorry to hear that, Kurt. I had heard of other problems with Neurontin, but nothing this severe. Thank you very much for sharing this information.

There is absolutely no scientific evidence for this. Just want to make that clear for others.

Again, there is no scientific evidence to support the part of your statement I put in bold.
As for the rest of the sentence... One of the problems is that LP is designed not to give you the chance to 'ignore the rest'; as has been quoted in multiple posts, LP practitioners tell their trainees that the Process will not work if they do not follow all of it; not everyone will have the mental discipline and stamina to suspend belief in/ concentration on some aspects of the program while maintaining it steadfastly in others.

From Fingers:

You are aware there is an "Edit" function, right? Try it; I find it invaluable.

Yes, definitely caveat emptor with this therapy. Marketing this as a training program does avoid the need for regulation. But then, no NLP approaches I know of are regulated. My understanding is that LP is simply a hybrid form of NLP, adjusted with Phil Parker's approach to using self-hypnosis to create a success mindset, or something like that. There may be no concrete research proving a causal model for the effect he gets, but some anecdotal reports are very strong, there is something there for us to learn, even if it is massively over-sold and falsely presented.

Obviously they learned their lesson as they no longer say that, although individual might.

fingers, I totally agree with this. Personally I might have tried LP a few years ago if it were available. But I would be careful to pick out what I thought was valid and throw away the rest, that is something I have experience with, even with traditional medicine. For someone not able to work out what is good and not good in the program, they should be more careful, learn about the program first and have realistic expectations.

As for endorsement, I already gave my careful review, I am only trying to point out that this is yet another 'training' program that might have some real benefit, but one must be careful with it. So would personally advise caution if someone wants to try this, be sure to self-monitor one's energy envelope afterwards.

As for now? I probably would not try LP, but that is because I have learned how to use self-talk, self-hypnosis, NLP, and have learned how much benefit I can expect from that approach, which is about a 10% improvement. And I already know how to get that, so no point in spending money for LP. For now I am exploring other options, such as herpes antivirals, methylation support, things like that. Trying to find the next 10% improvement.

Whenever someone here says 'no scientific evidence' for something I always say mentally, well that must just not be one of their problems.

No doubt there are some ME/CFS patients here who would and some who would not benefit from LP. The lack of studies in a new approach to CFS only says it has not been formally studied yet, that does not mean it does not work at all for anyone and all anecdotal reports are false. Rather, I try to keep an open mind about this. Given that I appear to be one in the group for whom this type of approach gives a small benefit (see my prior post about that), I believe there will eventually be scientific evidence that shows who this works for, and who it does not help. And hopefully, why it works sometimes.

My personal guess about LP would be that : a) some of us have a stress-mediated infection and any clinical-level stress reduction therapy can help immune function; b) some of us have herpes infections that have gone 'neural' and this creates false sensations that lead to looping-type amygdalar/hypothalamic dysfunctions and by changing our conscious focus away from those sensations we can lower the amygdala activity; c) some of us have a completely different cause such as an organic or inherited mitochondria or methylation dysfunction and no amount of LP type therapy will help at all other than improving our coping skills.

As for your final comments, I completely agree, this is very troubling. Nobody with ME/CFS should 'ignore' the signal to rest. Clearly this therapy was not designed by someone who deeply understood CFS. Rather it seems designed for something different that happens to help CFS, sort of analogous to off-label use of a drug. Someone who knows LP and understands its limits, how it can help but also what to be wary of, should write-up a 'warning label.'

Just a few points:

That means they were not recovered. Sorry little bugbear of mine how the word "recovered" gets misused, nothing personal, just useful to point out the misuse to people in the hopes of making people in general more careful of the use of the word.

That means her son didn't apply LP properly (which is just as well in my opinion). With LP you are suppoed to stop "doing ME" and start doing LP, and "living the life you love" instead. You should be better pretty much immediately if you applied the process properly and consistently (if the process worked the way it says it does. I think it is nonsense myself by the way so I am not advocating it!).

It is part of the process to ignore symptoms and go out and do things, and basically not to pace. Pacing is contrary to the ideology of LP. So the people who go out doing things straight away are doing LP properly and the others are not.

Extract from someone's experience to illustrate this point:

Back to this discussion:

I think she is showing some good insight and independence of thought there. I know a lot of young people can be under a lot of pressure from peers etc to do it. And it is difficult not to try just about anything when sick. I have done some crazy stuff myself (though for a fraction of the price of LP, and without the associated risk of ignoring symptoms).

I cannot agree with this. One doesn't have to stick ones hand in the fire in order to know it is a bad idea.

I think that it is important to critically examine any treatment, as much as possible, and to try to get any information about any treaments that we are about to embark on. I think it is especially important to listen to those who something didn't work for, or who were made worse by something, as that helps one to do a cost/benefit and risk/benefit analysis to some extent.

I know from my own experience, and from listening to others, that it is easy to get a bit caught up in sucess stories, or what seem to be success stories, but it is important to try to get the full picture to get a balanced view. Sometimes when one does this one decides against a treatment because it doesn't sound right, is too risky, is too expensive, or too expensive for the possible limited benefits, just seems crazy or whatever. It is not necessary to try every treatment oneself to have a pretty informed view of it.

It is also important to remember that ME/CFS can be relapsing and remitting so that improvement can also be coincidental.

Kurt wrote:

I think it is vitally important to take account of the fact that there are risks with every treatment. But if one does LP properly I think it would be impossible to avoid overactivity (if you have ongoing ME/CFS). They do not recognise that there is such a thing as post-exertional malaise in an organic sense. They think our symptoms are basically down to our negative thinking. To counteract this we are supposed to believe we are ok and just do things "live the life I love" etc.

See quote above that illustrates this point, and this also from another person who did it (who thought it was good):

They are teaching people that they have an exaggerated view of the problem, and that they don't have an ongoing organic illness, and that symptoms are the result of negative thinking etc. Once someone starts thinking like this they are bound to stop pacing and overdo it.

There is a lot of information on LP here, and I have posted descriptions of what it involves http://www.forums.aboutmecfs.org/content.php?71-Lightning-Strikes-a-CFS-Patient#new_comment

I hope not Kurt, because that would be a very unscientific assumption on your part!

After all, at least SOME of the time someone here says there is 'no scientific evidence' for something, they might actually be being objective. :Retro wink:

When I say there is no scientific evidence, I mean there is no scientific evidence that has been presented in the accepted manner in which scientific evidence is always presented, so that people may know that it is, in fact, scientific evidence! Since there have been no valid scientific studies on LP, there is no scientific evidence to support any of its claims or hypothetical models of its hypothetical action, such as the one you put forward.

Absolutely correct. Did I say otherwise?? I don't think so. I merely made extra-clear that a speculation of yours, which might have been misinterpreted by some as having some grounding in research findings, is only a speculation at this point. I feel that this is an important time to stress the state of knowledge and prevent any confusion about it, given the immediacy and importance of the issue of the proposed UK LP study on children.

Hey, I'm pretty open-minded too, by the way. And not just in the ways everybody thinks I am.

Ok - to sum up - The Lightening Process - tells you you are 'doing' your life wrong, ME/CFS is not organic. You are required to have a quasi-religious belief in the therapy. It costs a lot of money. You have to keep its process secret, and, in a massive display of circular reasoning, if you don't get better, it's your own fault for doing it wrong.

The only 'evidence' for its efficacy has been promotional articles in newspapers and other places. which the same sort of narrative scenario has been repeated ad nauseum: the person was initially sceptical, but now they're so much better, so much so they are becoming an LP coach themselves (or thinking about it).

LP has some similarities with a CBT/GET ethos, so obviously proponents of a psychiatric paradigm aren't going to raise objections to it, even though it's sort of stepping on their turf, and now funding has been given to practice this belief system on children.

Meanwhile, at least some people given 'CFS' diagnosis are finding, through testing, they've got cardiac insufficiency, mitochondrial damage etc. Scientific research is finding similar.

So the next logical step is to use LP on people with all cardiac failure problems? After all, they're 'doing' heart attacks and congestive cardiac failure, left ventricular failure, primary pulmonary hypertension (especially those little kids who usually get heart and lung transplants), hole in the hearts. I mean, they won't suffer any physical or psychological risk at all, will they?

Oh wait- perhaps they will? Well we can't have that. But the ME/CFSers? Well, they're 'special'. And by that I mean there's some special pleading going on with regard to them. LP is finding support because deep down, many people do believe that it is a psychogenic 'illness', because of its uncertain aetiology (a fallacy of reasoning if there ever was one), and the research that suggests otherwise is being downplayed or ignored. It means people are being put at serious risk of both physical and psychological harm, especially those with symptoms (and signs), which normally should be ascertained as cardio-vascular-related by an intelligent medical student, but which have been sometimes wilfully ignored by medics due to psychogenic dismissal.

And you know what? When the cracks in LP reasoning does eventually become too big to push under the carpet, and the 'skepticists' out there are forced to denounce it, it will be the ME/CFS community themselves that will be characterised as overly-credulous and willing to swallow any crap, even though there has been loads of objections raised by people. It's the apparent nature of how the community is to be treated.

Then the Linbury trust will fund trials for - well what? Primal screaming for CFS? Cocaine? transcendental sex? firewalking?

Angela wrote:

In October 2008, I gave Parker's PR a choice. Either I edited the comments she had already left on my site to include a declaration that she was Parker's PR and that any future comments would also need to contain a declaration of interest, or I take her comments down.

She elected to have her comments taken down from my site.

At around 650 for the four to five hours a day, three day course, I wonder if anyone has worked out the hourly rate that "coaches" are making when LP is delivered in group sessions?

Another concern is how many of those who have undergone the "training" themselves then go on to train as "coaches".

Here is a sample application form:

http://www.healingpowerofnature.co.uk/hpnform.pdf

I thought this was interesting:

"6. Analytical
Are you analytical? We know it is valid in some situations to analyse and question, but what we have found during the Lightning Process training, is that those who spend time analysing what they are learning INSTEAD of applying the Process, hinder their own progress..."

Well said Angela.

I have LP graduates telephone me from time to time. Some with considerable evangelical zeal urge me to contact all those I know who are 'doing' ME to persuade them to sign away 600 and suspend their critical faculties for three days. Others tell me that that they either weren't helped at all or have relapsed more severely as a result. One of the latter group told me that at the completion of the course she and the many others who attended the residential weekend were brought into one room. The leader (?Parker) asked all those who were cured (not sure of the exact phrasing) to raise their hands. Some did. The person who phoned me was one of the group who didn't. The leader repeated the question and told the group that the course couldn't work for them if they did not raise their hands. After further coercion, just about everyone obliged. Then came the photographic evidence on the lawn of a large group of happy, jolly cured-in-three-days-by-LP people who were no longer doing ME. Very useful for the advertising campaigns. This is the evidence that Parker used to maintain his 97% success rate.......it is based on coercion.The person who phoned me was embarrassed that she had allowed herself to be coerced into raising her hand and her 'recovery' is used as part of LP's success story. There has been no long-term follow up.

There is no doubt that it does help some to various degrees. I personally know someone who was ill for nearly 20 years and wheelchair-bound who was 'cured' and then became a trainer. Someone else I know who has been ill and housebound for a similar length of time, after doing LP passed on the message that he was cured, but refused to speak to those of us who were still 'doing' ME. One year later, it turns out that his cure has enabled him to leave the house on a buggy. He is now walking up to a mile, which, although an improvement, hardly constitutes a 'cure' for a man in his 30s.

Coxy, I wish you every success. I sincerely hope that the course will work for you as it does for some. Apart from 'lightning' your purse, it should do harm if you are aware that you must not exceed your physical boundaries to such a degree that you relapse.

When does the course begin, Coxy? We look forward to hearing from you, although you will probably be told that you are not allowed to speak about it.

SW Endland quality control

CG meant to say "....should do NO harm....."

Hey, CG, could you do some of that techie editing stuff for me as kindly suggested by Dr.Yes to try to recover my crumbling credibility? Or maybe you can't access my stuff? Oh, way too tech.

back to the plot.......and more fun......

I posted elsewhere a while back about a powerpoint on Phil Parker's website which was about the XMRV findings and ME (might still be there, although my phone call to him may have tipped him off to take it down or change it fast). He sure is on the ball, was probably crapping himself until he got the UK labs to quash it (sic).

In the ppt he had a slide which said about people with ME doing the LP: "It will be interesting to see if they still have the virus" :tear::tear::tear::tear: (that's crying with laughter). Of course, his plan is to test people only after and not before :tear::tear::tear::tear:

So, are there any confirmed XMRV +ves + ME out there willing to undergo the LP training? I am in contact with the Ashden trust, so maybe we can get funding. I can't promise any transcendental sex though, I think that was only an optional extra on the course I did.

=

OOh! Ooops! Well done, fingers! Freudian slip, perhaps

Is this a hint of sarcasm I detect? It is not kind to tease the technologically challenged, especially when it involves a fellow Endlander. It is also not wise to provoke a Celt!

Actually, I'm quite sure that a bright cookie like you can manage to click on edit! :Retro smile:

Ask Joy.


What is the Ashden Trust?

C.G. South-East Endland

maybe when we get the results of the WPI/UK study we can get all the +ve's over to Phil's place for a trancendental orgy whilst we're waiting for treatments to develop.

Ashden trust (Sainsbury family) is funding the Esther Crawley/children/ME/LP study together with the Linbury trust (also SF). The former publish a contact phone number, which is why I've contacted them not the latter.

Now, CG, I'm confused. You've moved to SE Endland (did I upset you that much?!). We need to get over to Tintagel again and discuss feudal definitions, otherwise we'll have a revolt on our hands.

Tintagel it is! We Celts are, after all, a revolting bunch.....any excuse will do!

If you are in the north of the county, that makes me south east of you. I live very close to one of our major battle sites, where we were butchered by the English. It was that time when we became a tad uppity about being forced to use the Prayer Book in English...remember?

Thanks for explaining about the Ashden Trust...I knew about Linbury (they funded some of the psycho- nonsense research of a few years ago).

Have you had a reply, fingers? I think it is very worrying that children are to be used in such a potentially unethical research programme. Have you informed them of the concerns expressed on these forums as that would be a very valuable thing to do. In fact, if we had the energy to do so, we could campaign against this. I'm sure there is sufficient evidence to make a good case. Now, there is something to keep you off the streets fingers..............

Thanks for invite to Phil's place. Whenever it is I already have a pressing appointment.

If we prove to be XMRV+ I suggest we Endlanders, mermaid, thee, me, flybro, min (I think) and the umpteen i've sent through to Judy from my neck of the woods have a grand bash at some mid- Devon hotel. In fact I know just the place. So much more sophisticated - and a lot cheaper and safer- than Phil's place. I look forward to it!

http://www.healingpowerofnature.co.uk/lightning-process.php

"The Lightning Process™ is a remarkable training program during which you will learn a unique set of skills to achieve the changes you want in your life. It is a powerful combination of techniques drawn from:

•NLP (Neuro-Linguistic-Programming)
•Osteopathy
•Life Coaching
•Self-Hypnotherapy"

---------------------

I understand that Parker originally trained in osteopathy.

Many of those who are now delivering LP "coaching" are former LP "trainees", themselves, with no previous background in life coaching, NLP, therapies or treatments of any kind.

I have yet to see anyone who has undergone LP or who is an LP coach set out the "osteopathy" component in the "process".

If the sessions involve no osteopathy techniques and those delivering LP are not trained in or licensed to practice osteopathy, why is osteopathy being listed as one of the fields on which LP techniques draw?

Good Luck to you both Coxy!,

No doubt your aware that there's a huge variety of mind, body techniques and some of them are free? On the basis that the right technique for a particular individual improves quality of life irrespective of whether someone is ill or not, I'm a big fan.

Like Orla I'm going to be a little picky. (No offence intende Orla )You said about the Tymes Trust advisor

Would someone who was deconditioned say through many months in bed with a broken back or years in a chair with Rheumatoid Arthritis develop ME if they did too much too soon? Knowing people who have been laid up and deconditioned over long perods I think it's extremely unlikely. Which suggests the underlying condition of the ME relapsers remained.

Hope you get at least the 10% improvement you'd be happy with.

No problem Willow!

I had meant to post this last night but forgot.

From the main LP website:

Another point about being deconditioned:

surely you can see someone who is deconditioned its objective isn't it - as long as you are not blind. How is it that the average morbidly obese person can be more physically active than us if we just need a bit of graded exercise therapy or LP or CBT. How can you go from being active to being deconditioned literally overnight. When this happened to me I was healthy and fit and built like a brick shit house. Exactly how and when did this speed deconditioning happen without me realising. Why do old ladies have more energy than me, why do people twice my weight have the ability to walk in a straight line and not have an awkward gait etc etc. I can't walk heel to toe, I can't walk on my tip toes - if i was stopped by the cops they would say I was drunk. Deconditioned or morbidly obese people don't have any of these difficulties. If I showed all these clear neurological signs to a Dutch or any European XMRV study I wouldn't be included, yet if I showed them at an LP course they would still snap my hand of for the 600 quid. No doubt a CBT practitioner would include me in her course to keep the billing numbers up to charge the NHS or any other pay master. Would any of these people pull me aside and say "I think you need further medical investigation". I doubt it!!

I have never been to a doctor who has said " oh my god i can see objective signs of decondioning" ie muscle wastage or extreme obesity. This is not about achieving the body beautiful and some mind set of "non achievers". We, with two legs, two arms and previously normal health find ourselves not being able to perform simple physical tasks literally overnight. At least in less time than it would take if you were deliberately trying to get to this functioning level by deliberately becoming deconditioned.

I therefore see very little logic to the LP or any such similar treatment. If any of this carried any weight you would have to believe that fat people could think themselves thin without altering their diet or taking exercise simply by not "doing fat".

lol @ "doing fat" .
however, i read that lp is basically repeating self-affirmations. if that is true than its a scam. this phil parker is basically exploiting the desperate in my opinion...

"
We are often asked if once you have recovered using the process is it possible to relapse (which of course is huge fear of many M.E sufferers as it happens with so many other approaches). The simple answer that people report is NO, not if you continue to use the process as you have been taught it."

The only person I know with neurological M.E. who has done LP had a huge relapse a few weeks afterwards and no long term benefits from it at all.