The Lightning Process understandably raises hackles in the ME/CFS community. Phil Parker is viewed as a charlatan by some and an impediment to the hard science needed to understand this disorder by others. The LP’s notoriety, it’s rapid spread to many countries, and the fact that some people with ME/CFS do well with the process, however, makes it impossible to ignore. Now that a major study is underway on the LP, we take a look at it.
The Lightning Process is nothing if not controversial. The very name –suggesting an almost overnight ‘cure’ – seems like a slick advertising ploy. It’s been taken to task for making unvalidated and ‘misleading’ claims by the Advertising Standards Authority in the U.K.
According to Wikipedia, the Lightning Processes promotional materials have stated that people with disorders ranging from chronic fatigue syndrome to autism to multiple sclerosis, cerebral palsy and Parkinson’s disease have experienced ‘significant improvements’ from doing the Process.
The fact that the first major ME/CFS study for some reason involved children (12-18 age range) aroused great trepidation. It’s been called an ‘abracadabra’ approach to ME/CFS, is listed in Wikipedia as ‘pseudoscience’ (along with chiropractic, acupuncture and craniosacral therapy) and the three day course is expensive.
The Lightning Process and its associated websites also provide stirring and sometimes amazing testimonials from people who have reversed years of illness. A woman who’s been bedbound for 10 years returns to health. A decade long illness that disappeared in several months. People who were sick are running marathons and climbing mountains.
I learned about the LP when I was corresponding with person with ME/CFS who was at her wits end. She was about to embark on a costly and possibly damaging treatment from a well-known ME/CFS practitioner when she decided to try the LP. She popped up quite healthy a year later. (Check out her husband, an MD, on the Process. )That was an eye-opener.
Mind Over Matter?
“I designed it for people who were stuck — everything I had tried that worked on everybody else didn’t work for them. I had run out of tools.” Phil Parker
In a video Phil Parker stated the genesis of the Lightning Process began after he recovered from a devastating wrist injury that all the medical experts except for one said would leave him disabled. Believing that his beliefs played a large role in his recovery, he developed an interest in seemingly irremediable illnesses. He states he sees many people with chronic fatigue syndrome, multiple sclerosis, chronic pain and other difficult to treat disorders.
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“It teaches you how the brain works, and to train your brain and body to work together to influence your health,” she says. “We look at how the mind influences the body and how the body influences the mind. A Lightning Process instructor
Phil Parker states his Lightning Process approach is predicated on a physiological breakdown in the sympathetic nervous and adrenal systems that leads to a constant state of arousal that feeds on itself.
According to a Wikipedia article the Lightning Process alters the thought patterns induced by this state of physiological overdrive in order to reduce the output of stress-related hormones. Parker believes the processes producing the stressful thought patterns can be reversed by introducing thought patterns, postures and movements that allow the body to calm down and resume a healthful state.
The Lightning Process website states it uses movement, posture and coaching to help people to learn how to use a step by step process to turn the state of over-excitation off. Just as in the Amygdala Retraining process, participants are asked to use a physical movement to stop negative thoughts that are appearing. The process seems to tie together positive thinking, neurolinguistics, the stress response, and physical techniques.
Studies and Surveys
No rigorous studies have yet been done on the Lightning Process. The LP website reports that preliminary results from a large outcomes study containing people with chronic fatigue syndrome (64%), anxiety (17%), multiple sclerosis and fibromyalgia (3%), found significant increases in all aspects of the SF-36 scale.
The Lightning Process was the most effective treatment (in a limited) ME Association 2008 survey with 45% of responders stating they improved greatly (26%) or improved (19%). Twenty-one percent reported they were worse off. Fifty-four percent reported no improvement or felt worse.
The LP website also reports that a small proof of concept multiple sclerosis trial had favorable results with participants particularly reporting improved scores on role limitations due to emotions and energy/fatigue.
Dr. Leslie Findley clinical neuroscientist running a LP pilot study in ME/CFS reported that most participants derived benefits from it and thirty percent had no change. He emphatically denied that the results mean ME/CFS is a psychosomatic disorder, stating it was a ‘disorder of the brain’. He didn’t think the LP was the cure-all and end-all for ME/CFS that the LP website and some LP practitioners suggest, stating “I just see this as another way of helping patients that haven’t responded to much simpler approaches.”
Even the Lightning Process does not talk in ‘cures’ so much anymore. A large survey found that 75% of people who did the course reported ‘good change’ and improved ‘well being’ afterwards.
The Big Study
Now Esther Crawley’s study is giving the Lightning Process its first big scientific trial. Containing from 80-112 children and young people, this study will add the Lightning Process to the standard CBT criteria the UK practitioners provide. The primary outcome will be the Physical Function subscale of the SF-36 questionnaires which appears to ask how limited one’s activity is by ones physical functioning. Other questionnaires (Chalder Fatigue Scale, etc.) will be included.
According to Esther Crawley here’s much of what the course will entail:
- The course is three sessions on three consecutive days. Each session is three hours and forty-five minutes long. Group sessions will include three to five young people between 12 and 18 years of age who live within the region covered by the CFS/ME service. During the group, children and young people will receive a theory session and a practical session.
- The theory session will include taught elements on the stress response, how the mind-body interacts and how thought processes can be both helpful and negative. The language used by young people will be discussed and in some cases challenged. Young people will be encouraged to think about what they may be able to take responsibility for and change. The taught sessions are followed by a group discussion.
- The practical session is used to put some of the skills learnt into practice. Young people identify a goal they wish to achieve (such as standing for longer) and are then given alternative ways to think about and prepare for this. This involves using different cognitive (thinking) strategies before and during the period in which achieving the goal is attempted. Young people are also asked to identify a goal wherein they can practice the strategies in the afternoon or evening. This goal will usually be short but could be an activity that is up to 30 minutes long.
- The LP practitioner will then arrange two follow-up phone calls with the young person and parents within two weeks of the course and then approximately six to eight weeks later.
Arousal and Chronic Fatigue Syndrome
I definitely have a lot of system ‘arousal’. My experience is that I can use various techniques do away with at least part of it, allowing me walk more and feel better. Exercising vigorously is pipe-dream at this point, however.
It’s not clear how common or important a state of ‘arousal’ is in ME/CFS in general. My guess is that it’s pretty common, but that many people have other issues going on as well. While abnormalities in the HPA axis have been found, my sense is that researchers have found more fruitful areas to explore, and it’s not the major emphasis that it was.
The recovery stories project I’ve taken on has left me with no doubt, though, that the LP and similar techniques (as well as antivirals, immune modulators, alternative medicine, diet, etc.) can have powerful affects when applied to the right patient.
The ME Association survey finding that approximately 25% of LP participants ‘improved greatly’, however,’ left about 75% who did not improve greatly (and 55% who did not improve at all). I don’t think Toni Bernhardt needs the Lightning Process :). I think she needs help for her immune system.
My guess is that this study will show some people will benefit significantly and that a significant number of people will have no, small or only moderate benefits.
‘Next Generation’ Mind/Body Techniques
CBT has been studied to death in ME/CFS and the Lightning Process, the Amygdala Retraining Program and other ‘next-generation’ mind/body techniques have begin showing up in studies. (A small Amygdala Retraining study found significant benefits for some and not for others.) It’s worth noting that all these techniques (Lightning Process, Amygdala Retraining Program, Mickel Therapy, Reverse Therapy, Dynamic Neural Retraining System) propose the main problem in ME/CFS is a stress response system (sympathetic nervous system/hypothalamus/adrenal system) in overdrive.
Hopefully this study is rigorously designed enough to provide real answers. The danger is that the media, particularly in the UK, will over hype the positive effects of any mind/body study. The promise is that some people may be lead to something that helps.
What do you think about this study? Will it be helpful or hurt? If it’s successful would you try the LP or similar techniques? If you’ve tried the LP how did it go?
for me, this is a bunch of crap. If you have true ME, this will not work especially if you have activated viruses. I can control my stress and anxiety on my own. I already have to control my body to live with this disease. So this makes no sense in my case.
OK guys time to shed a bit more light and reasurrance on this as there seems to be a lot of negative views on here over LP. To be honest I was a little sceptical myself at first but with a bit a reassurance from others and researching and reading various success stories I decided to give it a shot. As I’d been ill with ME for over 5 years after trying various treatments and therapies I was game for giving anything a chance as it was ruling my life. And I can honestly say to you all it was the greatest decision I have ever made. Its not an overnight thing and you HAVE to keep implementing it as soon as any symptoms first appear whether they be pain, fatigue,nausea, as long as you consistently implement LP when its needed you will get the results. And the best thing is after after about 3 to 4 weeks not doing and actually reversing the symptoms becomes the norm and is hard wired into your brain. You learn that that the brain is totally connected to your body and once you realise that you can use your brain very easily to control two primary factors that are the cause of ME which if you are familiar with the fight or flight response your body has ME causes your mind to think its in the fight mode response and because of this creates high quantities of adrenanlin and cortisol which in massive amounts go on to cause all the symptoms you are familiar with that come with ME, the pain, fatigue etc.. Now by doing the process you (And this is the amazing bit) regulate these damaging chemicalsto the right levels thus irradiating the cause of all the major physical symptoms before they arrive. A bit like if you have a broken spoke on a bike then you fix it before the rest of them break sndvyour wheel falls off.
I did LP about 5 years now and have never looked back I used to be in bed by 9pm every night and down to working 2 days a week in constant pain. I’m now able and have worked in a full time job the last 5 years played guitar in a gigging rock band, recorded an album and now currently taking a bit of time out in New Zealand where so far I’ve climbed a dormant volcano, worked on a farm and moved 90 yes 90! Bales of hay, been out swimming in the sea, kayaking, socialising, long bush walks the list really does go on and its all because of the lightning process. It honhonestly has given me mt life back. So please before passing judgement on something you haven’t practised and learnt first hand don’t scare others into not giving it a shot and going ahead with it. As you are scaring many sufferers into thinking its all a con when I promise you from the bottom of my heart its not and it truly will give you your old life back and more. I really hope my words have reassured a lot of you out there.
I read your post with great interest as I had a v similar experience to you with the LP. Just wondering, 6 years on, how your health is now please?
I had 5 years of moderate ME with minimal relief from a number of alternative therapies.
Then I eventually did LP after weighing it up for at least two years. It really seemed to cure me for about four or five years. I took up rock climbing, flamenco dancing and did some incredibly strenuous backpacking trips in various exotic locations in the world.i was overjoyed to be well again. I Became a massive fan & advocate of the LP; it truly did seem miraculous (although curiously i started suffering from increasing anxiety, which I wondered may have been a backlash to my emotions having been largely closed down while I was ill.) .
Then, sadly, I had to endure considerable stress for a number of years from 2012 onwards, culminating in a ‘perfect storm’ from various causes for the last 2 years.
Almost all of that stress has now been eradicated due to some radical alterations in my life circumstances but I have relapsed badly.
I now have severe ME symptoms and am pretty much housebound (and currently bedbound approx 30% of the time.)
I truly hope that your journey has continued positive Rob but I wonder whether there may be other people out there who have suffered a relapse (albeit after a considerable length of time).
What a story Gill. It’s amazing it was so effective and yet now is apparently not working. What a strange thing this disease is. I guess it reached a point that LP couldn’t reach. Good luck to you.
I would not even be able to get thru the entire course or even comprehend what they are teaching after 3 hours! I would be in bed for weeks or months.
I am glad some found LP helpful. However it is expesnsive. I can see this process for people who do not handle stress and anxiety.
I feel if you have abnormalities in your immune, cardio, CNS/autonomic system, etc… You need medical science and not psychology to get your life back in order. I highly would not recommend it. Like someone stated, there is no magic bullet. If you have CFS and not ME, maybe this may work. It’s my opinion that in any chronic disease, you need the power of your mind and body to fight. I don’t need to pay someone $2000 that comes natural to me. I hope they separate countries and outcomes for this process when completed. And I hope they look at how sick and with what abnormalities and with comorbidi depression. Anyone heard of placebo effect.
Im sorry you feel that way. I certainly found CFS/ME a huge struggle and I started having it after a bad virus.
I could control my other problems on the whole, and learnt to control my body to a point where i could live with ME, which is what I was expecting to have to do for the foreseeable future. However, I did the LP on recommendation of a friend, and I can honestly say that you have to embrace it to even know it enough to judge it. His introduction to the LP book was really helpful and then over a weekend I was running around London! It meant I was free from having to control everything, it all just went back to normal where I naturally had energy and naturally felt positive and happier.
Obviously you and I are different, and I’ve seen at least five people who had different cases to me use the LP and get their health back. He talks about different cases in his book and in short the mind works the same even if the symptoms are different.
On the surface it doesn’t make sense, but when you look a little deeper and start to discover how it works and why, it makes so much sense I almost felt like saying ‘why hasn’t anyone thought of this before!’
I wish you all the best and hope that you will be free of having to control everything and can enjoy being who you want to be easily
It’s not about controlling your anxiety and stress… it’s about retraining your brain. Many people have chronic ebv and other viruses and healed from chronic fatigue syndrome using these tools. It’s about your beliefs and subconscious mind.
I do think my condition is a result of a “revved” up system…..whether there is a way to reverse this, I’m not sure. I’m seeing a naturopathic Dr. now and he’s working with this idea. I also have a bloated gut…so am wondering if there’s some vagal nerve damange of some sort also.
Let us know how it goes.
After 43 years of ME/CFS – many of them bedbound but working whenever I could – sometimes not for years, having tried everything I ever heard of without success, I did the Lightning Process first week of May 2006. Before then I could not walk more than 30 ft and never uphill and always in pain and brain fogged and just thoroughly exhausted and awful. I did spring forth in that I felt immediate changes in my body and I could just do things I had no chance of doing before. The brain fog was the last thing to go but it did. I then went to train with Phil Parker in London for two years and have been delivering the Lightning Process at Swallows Retreat in Sussex every since. A course every other week. Success rates – I count only those back at school, Uni or work full time and with an active sporting or social life and feeling really good a success – are very high indeed – including myself. I am open to anyone coming here to see my results and to any trial or research – the more the better. Completely transparent – the results here to see. I am full of energy – feel wonderful, work full time, walk my dog on the Downs most days, swim, dance, socialise, entertain, and work full time delivering the Lightning Process courses. View my video testimonials on my website swallowsretreat. Before the LP I was a painful inactive blob – that’s what I felt. Thank you Lightning Process and thank you Phil Parker.
Thanks for relating your experience Linda and congratulations on your success.
Linda you’re a true inspiration, thank you for everything
I am delighted your health has improved. What do you say to the many who tried LP with no success? Many thanks
If anyone who has learnt LP tells me they are not getting the changes they are seeking, I refer them back to their practitioner, or indeed, any LP practitioner, to see how best to use LP to respond to the situation. I discovered the LP after a breakdown during my international business career and subsequent diagnosis of CFS. I spent a lot of money on various interventions which made little or no difference. I was on beta-blockers and anti-depressants. I learned LP from Phil Parker in 2006 and started to make real progress on day 1 of the 3 day course. Like many people, I had no idea how I would be able to do a 3 day course because I was mostly housebound and exhausted. Day 1 gave me the skills I needed for days 2 and 3, and the whole course was a delightful revelation and excellent value for money. Not only could I seem to rearchitect my brain to stop the fatigue, brain fog and fibromyalgia pain, but I could also use the skills to do new and interesting things, like starting a new business, and *enjoying* a swim in Arctic waters! I am also completely off any pharmaceuticals. I now teach LP and am looking at doing some research into its efficacy for post-traumatic conditions. As a practitioner, I applaud any and all research into LP as I trust that it will encourage people to learn LP and use it to improve their lives
Thanks, Cort. I’m one of those that doesn’t dismiss a more holistic approach than Westerm medicine offers. I’m not sure that there’s a magic bullet at the molecular level for this.
In my review of recovery stories it’s often several things in combination that help people recover; sometimes there is a ‘magic bullet’ but I also wonder if sometimes on the mend reach a point where the next thing does it.
The molecular answer is probably not going to come soon, altho there is that intriguing Pridgen study around the corner…
Hi Cort – Im very glad to hear you are reviewing the recovery stories. I have been doing the same and I think they are a very useful source of information. Of course they dont stand up to scientific standards however given the medical definitions and explanations are still in such a state of dissarray it seems that this level of anecdotal evidence might be worth paying serious attention to – and it also keeps one positive!
I have seen first hand many people who have benefitted from these types of therapies mentioned and know quite a few recovered personally. They really can help the right cases – and I need to make a strong statement to those who claim these people dont have ‘real ME’. What ‘real ME’ actually is – is not entirely clear – but I do not think it is right to denigrate the illness of other people who have often suffered for years – lives ruined – with physical symptoms. If those lucky people can recover – that does not make their illness any less real.
I have to explain that Reverse / Mickel Therapy are actually very different to The Lightening Process and Amygdala Process. The LP is a process to calm the HPA overstimulation. Reverse/Mickel Therapy is a novel symptom focussed therapy which can work on any number of symptoms – I have a lot of experience of both of these therapies and have found them both useful in their own ways…
People have recovered from both of these methods often alongside nutritional assistance – and these cases should be welcomed – not denigrated as ‘not real ME’…
I think the reality that will become clear in the next 10 years is that there are subgroups of CFS and ME cases – with different emphasis on different systems in the body. Treatments will need to be specific to each case.
I know there is something to the role that stress plays in our illness but if we have real organic roots in our illness, I don’t see how this helps. I went through the Gupta program and thoroughly embraced it. It did nothing for me and some of the principles are similar. I hope this won’t be more fuel to the fire so to speak for us to end up with a psych diagnosis.
I think if standing on our heads every day would make us better, many of us would try it. Desperate for help!
I also embraced the Gupta Program – also to no avail. I know there are many people who got satisfaction, I am just not one of them.
And yes, I would stand on my head and turn myself inside out to be well
I also did the Amygdala program and enjoyed it. But it did not help my health status.
I would not imagine this program would work for you. So far as I can tell, having done Gupta but not LP, the processes are quite similar.
I got my own life back in just 2 weeks after an 11 year battle with CFS that meant I was on an Invalids Benefit and could barely get up 1 flight of stairs.
I know of 3 people who didn’t succeed with Gupta but did succeed with LP. The concepts may be similar but having a coach guide you through something and help you see your blindspots is far more useful than reading a book on your own. Plus being in a group allows you to build off each other’s successes and gain more faith about what is possible.
The people I know who have done both said that Gupta method was quite forceful and rigid on yourself whereas the LP technique was kinder and more flexible – I personally don’t know Gupta so do not have my own opinion.
I also noticed your comment about the low success results of the ME association trial – they surveyed their own members – it is therefore a totally biassed study. Most people cancel their membership as soon as they get well – partly because they no longer need it and partly cos they are annoyed that the society that was supposedly there to help them had actively told them not to pursue LP, despite the results from Phil Parker’s study of 1300 people showing a higher than 80% success rate. Therefore, I am confident that the ME Association success figures are vastly lower than actual figures because their sample was collected from a very biassed group. At least LP still came out as the most successful treatment but the figures have got to be crap.
I definitely agree that there need to be some independent university trials into LP to get figures that can be believed by the medical profession and societies. However, research takes a long time and in the meantime, shouldn’t ME societies be jumping up and down with excitement about this fantastic technique that has got thousands of people across the world better????
There seems to be a lot of confirmation bias going on. The reason many ME organisations are not advocating LP is for the few who are helped many are not and some are made worse. I hope you acknowledge this
As I noted my guess is that some people will do very well with it and many will have moderate and lower results. There is always the danger that any positive result will get too much credence.
I just heard of a diet study; all the diets studied had similar results regarding weight loss- even diametrically opposing ones and none were particularly impressive. If they looked inside the results, however, they always found a relatively small subset of people who did fantastic on the diets! It appears that that particular diet matched their physiology to a T.
I imagine the same is true with most treatment studies; a portion, often a small portion often have great results, while the rest have moderate or no results.
It would be interesting to run statistical correlations, considering things like the genetic factors (methylation block, etc.), viral infections, major identified illness s.a. diabetes, autoimmune disorders like celiac, RA, severe allergies, etc. Knowing who the process seems to work for and who is not helped by it would be really useful. There is of course a possibility that we wouldn’t be able to establish guidelines this way – and that too is information.
3 hours & 45 minutes, on 3 consecutive days! I wonder how many ME sufferers would be able to manage that? & how long would it take them to recover?
I’m just about recovered from having people to stay for Christmas…
BINGO–‘3 consecutive days–for 3 hours & 45 minutes’–just who could manage to be there and be present for the three days?? Sometimes ‘alternative therapies’ can be helpful in ‘management’–we need a BIOMEDICAL FIX!!!!!
Agreed Jan. My first thought was there is no way my ME/CFS husband could attend the course. Thus, I must assume they will only be dealing with mild to moderate cases. And wonder how they will determine who qualifies as an ME/CFS patient? Again, a study that is likely mixing lots of different groups together and some will do well, as Cort suggests, and everyone else will be painted with the ‘you could cure yourself if you tried’ brush.
I truly believe that until we have clear bio-markers for subsets all research into what works or doesn’t work is mostly a waste of time and money. They are very few seriously ill patients who have the energy or money to try every treatment under the sun until they get lucky and hit on one that works for them.
Oh, how I wish the money would all go to that work first.
This illness needs a ton more money and when it gets it the subsets will show up. Looking at the 100 plus recovery stories that I have, I can tell you that the breadth of treatments that works are kind of amazing. The three main broad kinds of treatments I’ve found are ‘alternative treatments (lots of different kinds), mind/body work and diet.
If it’s designed for ME/CFS needs, I would imagine that they built in guided relaxations into those 3 hours & 45 minutes.
At my worst, I was moderately affected by ME/CFS (housebound but not bedbound) and, with the right resting breaks, 3 hours & 45min would have been very doable for me.
Getting to the first session of the lightning process is the hardest part. You learn enough in the first day that you see improvements that will tide you over to the second day, where you learn more and improve more. I did LP in Feb 2013 for migraines and IBS (I’m up to about 95% improved, and am constantly getting more and more healthy). Most of my group of 8 were there for CFS/ME, and after the first day most of them managed to go for a walk or even a run.
The biggest hurdle to LP working is telling yourself it won’t – of course if you don’t expect it to work it won’t!!
I think the results are horrible. Please lets stick to SCIENCE!
I tried the LP after my first horror year of bedbound ME. I am a psychologist and recognised many aspects of the training as a combination of a number of helpful approaches used to treat psychological problems. I thought it was a well put together program and the information was presented very effectively by a fantastic LP teacher and made sense to me. The fact that it was conducted over three days meant that you absorbed the material better than if the material was spread out over a number of sessions. The cost isn’t over exuberant for a three day therapy. I’ve paid far more for testing and other treatments which amounted to nothing or made me much worse.
Initially, the LP seemed to work for me. I did more, set myself challenges which I achieved, and, on the surface, looked like I was one of the successful ones, especially at the early follow ups (up to 6 weeks from memory). They follow up each participant for a year which is quite rigorous compared to any therapy I’ve come across. But I didn’t know the illness very well then. Looking back, I was blocking or ignoring many of my warning symptoms. I wasn’t sleeping and was in a lot of pain and my POTS was worsening, though I felt like I had a lot of energy, though it felt like “false” energy if that makes any sense. I now know that is me in a hyperadrenergic state that, if persists, can lead to big setbacks for me. This state worsened over several months and then had a big setback that involved new neurological symptoms and took 7 bedbound months to improve from.
Even so, I am glad I did the LP. I enjoyed the process of examining and sharing my experience of ME and meeting others with ME. I made a good friend out of it who is still a great support. Some of the material did help me to manage my emotional response to symptoms. But it did not improve my physical state. The underlying mechanism that means my body does not cope with managing simple exertion has not improved. I still oscillate between 5 and 30% of what I could do pre-illness. Rest and trying to live within my body’s capacities are the only thing that have helped me gain better quality of life. The LP confused me for a long time because I took responsibility every time I crashed…if I’d just worked harder on the LP it wouldn’t have happened. And like many I think, I followed up with the instructor for the first few months, but dropped off when I had the big setback. I was just too ill and confused and disappointed. I expect I am still a memory of a success story in the instructors’ mind and stats.
I now know my illness better and what pushing beyond my current functioning does. I’m not scared about pushing beyond my limits as I do it all the time and bear the consequences. I’m not afraid of the ME, nor its consequences. I’m still glad I did the LP, but, like with other treatments and doctors, it’s been a long process of sorting through the bits that work for me and I find useful and the parts that don’t. What it did do is help me be more sure about what I know about myself and the illness. I know my psyche interplays with the illness as it does with everything, but I know also that my feelings do not drive the ME. They happen quite independently of the illness, and sometimes in response to it. But there is something else broken or damaged (likely autoimmune I think) which is driving everything. Now if the LP had healed that…
Thanks for giving us your experience and in such a thoughtful manner 🙂
I really enjoyed reading your response – thank you. I wholeheartedly agree with everything you have said and can relate personally to much of it.
I have had ME for 2.5 years and have tried various alternative therapies over time. I’ve been doing the Gupta Programme for 1.5 years with no substantial results. I’ve finally come to the conclusion that some bits seem to work for me (meditations mainly) but other bits do not. The worst bit is feeling – well if I have the power to get better ‘simply’ through re-training my mind, then I need to do absolutely everything I possibly can to make this happen, and then feeling very disappointed and guilty with myself when I had dips, as it felt like it was something I should be able to prevent and control…
However, I am not discounting the benefits of amygdala retraining – I have certainly come to a better place of acceptance of my condition and do not get as worked up, depressed or angry as I used to when I get flare-ups and bad dips, so in that sense I feel as if I’ve made an improvement.
Through practising mindfulness (and gupta programme therapies) I feel as if I understand my emotions much better and time has taught me to heed my body’s warning signals better and accept my limitations, yet still continue to experience horrible dips which render me bed-bound for weeks and suffer collapses and seizures up to 3 times a day which is exhausting – and there appears to be no apparent ‘trigger’ and definitely do not always seem to be linked to my emotional/psychological state, but always seem to be as a result of over-physical exertion (which incidentally is next to nothing compared to what I used to do…)
It certainly is a bewildering illness but I now try to get on with things as best I can rather than analysing what ‘went wrong’ and instead focusing on staying positive and trusting that with time I will get better…we can but hope!
Good luck Ami!
Thank you for your thoughtful report, Anna.
It also took me a long time to sort through the bits and pieces when I tried a similar program (Amygdala Retraining). Nowadays, the Gupta program has an active online forum, which would have likely helped me to make the ‘sorting through’ bit faster for me.
As a Gupta practitioner/trainer, what do you mean by sorting through?
There are frequent breaks and there is always a bed if you need a sleep.
Anna, GREAT RESPONSE!!!!! For 10 years after my mom died, I had a re-occurring nightmare. I finally went to a tapping therapist.. She used a long slider light machine and made me work on this memory. I have to say that when the therapy was done for a few visits, the nightmare came one more time and then NEVER came again… So I do not some things do work…
I also had been on a cocktail mix for ME/CFS from Dr. Klimas for 2 years… it too worked. but then I was made to get off due to a pending surgery. I stayed off the drugs one year until I relapsed horribly where I am now… I am reloading the drugs…
Even though I am sure many good things can come from therapy as I am the therapy queen in the past, and I am sure that people can “appear cured”, I really wondered how long it would be before the highs of the pet talk made someone crash again. Also in their medical finding reports, i saw some huge research creditability FLAWS… They invited the people surveyed. The people could be self diagnosed with ME/CFS. The surveys were all subjective psych testing forms. The participants were not bed or house bound. There was no time frame consistent of how many years they had the illness. I saw one person was 53 years old and she wrote she had the illness for 53 years. How could that be? A nut case maybe…
Only to say, did they even screen to see these people have a low natural killer cell test function, reactivated viruses, tilt table tests, Spect brain scans…
So Anna, I respect what you have written and it seems very logical to me… Francesca
I cannot take this seriously. It all sounds like snake oil to me. But, like you mention, it probably will work for some. My hope is that it works for those young people participating. Would I try it? Would you? I would have to weigh the possible benefit vs. the pain of another failed attempt, I think. You do an amazing job bringing this information to us. What a gift. I would love to know what you’re doing for your me/CFS currently. 🙂
Thanks… Diet and stress reduction – that’s it….
I’m camping out right now – which puts me into nature – which relieves stress and that is helpful in calming me down. One of the things I do is ask “what am I listening for?” and if the answer is something stressful sometimes it just drops away and I feel relaxed. I’m also creating satisfaction out of nothing – simply taking a stand for ‘satisfaction’. The creating it out of nothing is very important because otherwise I have little physically to be satisfied about! I have to create it out of nothing 🙂
I’m going to work on my gut next. I haven’t really tried anything else seriously in years. Money issues are one reason.
I tried the Amygdala Retraining and got moderate benefits from it and eventually dropped it.
My 28 year old daughter has ME, she has been bed bound for just over 3 years. She had been bedbound for a few weeks when she undertook LP in the UK. Myself and her elder sister accompanied her so we paid x3 which worked out very expensive. She was made to feel completely that her pain was her own fault – that she was ‘do-ing pain’, we were in a room with others and they provided a bed for her so that was OK. to be honest it was the worse thing we could have done at that time, maybe earlier on in the illness when she was not as severe but at this point it only worsened her fatigue with all the exercises and concentrating. I regret to this day that we encouraged her to go and take part. you are encouraged to ‘do’ something different after each session so we got her to walk for 10 minutes, looking back it was so wrong, she could barely stand up straight. But you were made to feel that if you didn’t then you were somehow to blame . I was even told that food allergies could be overcome through this by controlling your thoughts.!!! My advice- save your money
Ouch. I hope the other young people in the trial have a better experience. In my experience feeling blame is VERY stressful; it’s one of the things that I try to avoid because I’ve learned what a number it can do on my body.
Thanks for passing on your experience. So far we’ve had two people experience it with no successes yet and some negative effects.
i m just think maybe maybe , thanks
Lightning Process is an exploitative and dangerous scam. I know, I’ve done it and was trained by Phil Parker himself. He is nothing more than a snake oil salesman. Not only did it not cure me, but it caused a severe relapse which lasted at least a year and a half. All he gets you to do is pretend you’re not ill and act as if you’re healthy and normal. It can never be a cure or even treatment for a physical illness. If it doesn’t work, he says that it is your fault for not doing it properly.
I’m not usually outspoken about any treatment options that may help others but this really is crap. I’ve tried lots of alternatives with practitioners who genuinely wanted to help but which didn’t work for me; however I wouldn’t like to put anyone else off from trying them if there was a possibility they would get help from them. But please, steer clear of this crap – it’s psychobabble masquerading as science.
I’m happy to provide more information for anyone that wants it.
I also did the Lightning Process. I also didnt get results BUT there were people in the group who did, so I don’t necessarily think it isn’t useful for some.
What I do agree with is the fact that I was made to feel as if it was MY fault I didnt succeed. That was very painful!! Adding Insult to Injury, for sure. Firstly, I was out my money and feeling oh so badly that it wasn’t a success, as money is very hard to come by for me. Then, I was told that I must be doing something wrong. Hmmm. I must be doing something wrong, I said? I paid you to help me to do it right, so……….show me what I am doing wrong. They just repeated the part about not allowing thoughts of unwellness creep in.
I gave it my best shot as I did see it working for others there, but…….went home discouraged once again.
I know it was useful for some, so once again, as usual, I say to others “Your Mileage May Vary”.
I feel angry on your behalf. I am aware of the effect of my thoughts and emotions on my body. I also know that my adrenalin and cortisol are part of a complex problem. I work consistently at balance and pacing.
But telling me I didn’t do it right and I am allowing ‘unwell thinking’ to sneak in makes me anxious and I start tensing up to ‘try harder’. It is more than unkind to tell people it is their fault if your system isn’t helping them it escalates the process you are supposedly trying to calm.
I really, really dislike the idea that anyone has THE answer to ME/CFS. I regard any one answer for this disorder ludicrous given its vague definition and how many different types of people have it.
When the mind/body work I did was successful it always lead to a kind of opening for activity; that is, I would feel more relaxed and energetic and it became obvious that I could do more. The kind of ignore your symptoms approach obviously doesn’t work – it just strengthens the already messed stress response, in my opinion.
That three tries so far, two really negative experiences and one with some positives and some negatives but definitely no cures.
Thanks for your very balanced and thoughtful responses, Cort.
Also thanks for your ongoing contribution to this community !
Exactly: patients with M.E. on the severe end of the scale would never last thru 3 consecutive days of anything. That being said: the ones who do participate who truly want it to work will have a wonderful placebo effect and think that they are somehow better for it. Are they really…??? Who and what is to determine improvement? I just love these crazy studies that ask patients to walk away from their current situations and life to be involved in a study and then ask those same patients: How do you feel? Do you feel better?? Do you feel worse? Or do you feel the same? This can easily be explained away as for some people who are not as ill go away for three days and for them it is like a mini-vacation. So they may actually wind up “thinking” they feel better because they were taken out of the environment and they may have actually did less on those days.No cooking or cleaning or trying to pay bills or less of any activities of daily living. Where is the science in any of these studies??? This reminds me of all the Face cream advertisements on television where you hear the running commentary saying 100% of women “felt” the saw an improvement in their skin’s appearance. Well duh…all these women could also be delusion…I am sorry if I offend anyone but this is not science. If the sun is shining and I get to go outside for a few minutes and enjoy it, I “feel” like it was a wonderful day. It does not mean I am magically cured. Studies like this make everything worse belittle and put us back 20 years. It is so unfortunate it is done right out in the open under the guise of research: which it is not.
The science will come with the results of the study. Can anyone say how rigorous it is? That’s obviously an important question.
I think it’s a load of rubbish! If it was so successful the NHS would have rolled out the system for free instead of people paying hundreds of pounds to be told if it doesn’t work its your fault. CFS/ME/FM is not a figment of my imagination. After arguing for 6 weeks (and not sleeping) with a doctor showing him all manner of physical symptoms and numerous tubes of blood taken that he told me I was depressed. I point blank refused anti depressants as I am not depressed if I had been I’m sure my family and friends would have noticed. I have an amazing, understanding doctor who sorted out Physio, altered pain medication and put me in touch with a lovely health trainer. I was given information on a local NHS programme called the Expert Patient Programme, which is a 6 week course to show you what help you can get locally (support groups), ways to explain about symptoms and medications to clinical staff, and ways you can help yourself in managing your long term condition and lots more. It was nice to be in a room of people that you can discuss experiences with and not be judged. It is no way a cure but helpful and it’s free!
Believe me, the NHS as bad as it is, is not going to role out anything without it going through a study first. (That’s why this study is occurring and why it’s so big, I’m sure. I imagine that it is very expensive. This is their post PACE disappointment shot.) It sounds like a nice support group, though 🙂
Desperate people look for desperate cures. Every generation has a few Big Lie Quackers….Werner Erhard’s EST was in my day…don’t use the bathroom for a day to learn self control while you listen to him blather on (not me, a relative did it).
I can’t speak to ME but my take on fibro as a patient and clinical psychologist is that it is a disease caused by truama…physical or emotional. Some forms of verbal/conceptual retraining seem to help with trauma and actually change parts of your brain so there’s a chance they could help with fibro.
My take, JMHO, is that any pharmacological “cure” will be similar to cures of other major problems…more like a shotgun than a rifle. Coping with really bad pain with nondrug means…well, no one said life would be easy. I would welcome a really effective sleep med, though
Thanks Steve, I loved the EST training by the way 🙂 It was a definite highlight and it did help with my CFS (and other aspects of my life) – just didn’t take it away, unfortunately. That was over 30 years ago.
In my own experience, FMS and mystery nerve, immune, skin, balance, memory, mood etc. symptoms turned out to be a toxicity reaction to mercury dental amalgam. I had immediate improvement and great relief of symptoms when a biologic dentist who replaced exposed amalgams with renamel, more inert and not a neurotoxin, and doing nutrional supports. I had further relief when he found and treated some hidden dental infections, including persistent lyme, with one week of non-generic Rx and various supplements. Additional relief when diagnosed and treated for mold toxicity following a visit to parents condo after a flood. I am now 30 years clinically younger, and recovered the health, strength and resilience of my youth. Have learned a ton about genetic susceptibilities from articles posted at IAOMT, and from 23andMe and that helped put the pieces into place.
Removing mercury and targeted nutritional supports reboots your cells, nerves and electrical pathways. It is conceivable that the Lightness Process does the same, and biomagnetic therapies I have heard about. I know accupuncture helps me. I prefer to remove the sources of toxic exposure, so it doesn’t come back to bite me again.
Laura you are the proof of how heterogeneous this disorder is. Other people (including myself) have gotten rid of amalgams with no or little change. For some that and dental infections are huge. Some people get alot better by taking care of hidden sinus infections…
You are the detox/dental/mold subset of ME/CFS….How healthy are you now?
This is why you can never say one thing is it! There is no one thing…which makes treatment trials a bit of a problem.
I’m very uncomfortable with this experiment being done on minor children. It seems to me that their brains are still developing and they may not have the maturity to deal with the disappointments of not benefitting from this treatment while others may and/or losing any gains made, or ending up being worse off. All in all, I guess I think the experiment should be done on adults who are capable of understanding the risks of what they are volunteering for.
I couldn’t agree with you more on these comments, Susan. USING a vulnerable YOUNG age population–really ?? This to me is ‘bullying’, abusive and attempting to brainwash physical sickness away–and at the same time casting blame on the young person (and others) for not ‘magically’ becoming well–because ‘this treatment’ says so.
I want to say, I too agree.
What is the purpose of using children?
I sense subterfuge, along the lines of children are more pliable and will yield better results.
Using children should not have been considered appropriate for this study.
Hi Susan…and I was a mum with a 12 yr old daughter unable to get out and about with ME, the GP was unhelpful saying that maybe she wasn’t happy at school, nothing obvious with blood tests and best to do less activity….we found an NHS dr who was a specialist in ME/CFS suggested LP had helped many of his younger patients and if we were open to other less conventional approaches it could work or at least be worth a go…we did ,my daughter never looked back, she still uses LP if she feels she needs a boost to where she really wants to be…I am so pleased we gave it a go…genius! We are so much more than we think but we will never know unless we try, it’s not about blame or guilt at all.
I agree with Susan above, this treatment should not be experimented on children who may then spend many years ‘blaming themselves’ for not getting better and feeling failures.
Personally having known an NLP practitioner who went the PP route and having known this person previously and then met them again years later after the NLP, the way they thought and believed was totally bonkers. I also knew someone whose ex husband did the same and became basically bi polar.
Basically I wouldn’t let them anywhere near my thoughts or anyone I cared about.
I think if such trials don’t use objective measures, they’re a waste of time.
With the therapy, one is trained (with 3 days of hypnosis-like training) to stop thoughts that one is ill. Also, telling other people about restrictions caused by M.E. is “doing M.E.” which one isn’t supposed to do so you can’t trust what participants say. An example I heard: a person goes for a short walk but has to take lots of stops (that somebody who didn’t have M.E. wouldn’t need to do): a person who had been LPed wouldn’t tell other people about having to stop lots of times so you don’t get the full picture.
It’s a great way to promote a therapy of course: get people to be walking ads for your therapy.
So, as I see, such trials need objective measures. Asking people how they are means little (parents/caregivers can also sit in on therapy and be LPed also, and they also will want to go along with it, so aren’t necessarily reliable either).
““I designed it for people who were stuck — everything I had tried that worked on everybody else didn’t work for them. I had run out of tools.” Phil Parker”
This statement says it all. Anybody can get mentally stuck and there are many legitimate ways to get going again. It has nothing to do with curing or treating the actual illness. Telling a CFS/ME sufferer to behave as if they are healthy and well the way they were pre-illness is criminal and dangerous. Teaching a CFS/ME sufferer how to understand their illness, their body, their symptoms and how to manage the symptoms so that they can get the most out of each day, and how to change their habits so that they become healthier is key.
I have also learned via experience to be skeptical of such treatments that cost so much money. This alone is a red flag.
The brain is a marvelous thing. And certain people have the ability via their energy and speech to activate the part of your brain that enjoys things like sugar and heroin. The effect wears off, however.
The LP worked for me. After years of fatigue and pain I am now fully recovered and I give thanks for this process every day. I have been well now for about 9 years and I’ve achieved many of my dreams. This can be a good solution.
Thanks Claire for this – it is good to hear the success stories! Could you say how it worked? Did you feel immediate results and did you continue doing the process every day – are you still doing it? Can you say why you think it works for some people and not for others? It worked for my son for a while but then because he was 11 yrs old and felt better he couldn’t be bothered to do the process any more so he regressed and then felt very guilty and a failure because it had not worked for him. That is damaging. I hope the children in this trial who are not helped don’t feel this sense of failure. However I believe that the Lightning Process and these other similar therapies can work extremely well for people….I just want to understand how!
I applied the tools daily very intensely whenever I needed them. I did feel significantly improved after the first few days though, but I knew I needed to keep going to get stable results. So I did continue to use the process every day. Once the results leveled (about 2 months) and I was feeling consistently healthy, I then started to use the process more on my confidence and courage levels rather then health which had been my primary goal. I wasn’t very confident from years of illness and I wanted to change that so that was my next step. That went well and I did an online course in typing and computer skills and did some volunteering. Then I hit a massive challenge which could have sent me spiraling backwards. Because I had been ill for so long being well was a bit of shock to my system! I couldn’t remember who I was without the illness and I became depressed. I truly believe this is when I could have gone backwards. I felt so weak and started to experience and fatigue and pain again. Finally I started to use the process again and step by step got stronger and stronger and then got back on track and tackled some demons. Then things got much, much easier and life took off! I still use the process as and when I need it. Not for the original health stuff. I know I’m well so that’s okay. Just day to day stress/problems if necessary. I think for me the key was to keep going and use the process even when I didn’t want to. Another key thing was I had a wonderful practitioner who I knew really cared, but I also knew they couldn’t do the work for me. I had regular follow ups and I had the support of my mother and friends who kept me going during the challenging times. I hope this helps.
I’m delighted your health has improved. Do you take on board for the few are helped, many aren’t?
This is my issue. LP can encourage people to do more than their individual limits and for the many people who LP does not work this can cause long term relapses. Also for this reason it is very unfair to do a study on children when there are risks
Thank you. Yes, I do take on board that not everyone gets the same results that I did. It’s a training program rather than a therapy or a treatment so it’s not for everyone. I think it’s brilliant though and without it I’d still be ill so I’m very positive about it.
Also, you are making money from it. You probably should have mentioned that earlier.
There is no good evidence that LP helped you in any way other than getting you money from desperate patients.
Esther12, You answered my question: Why would anyone who became well after suffering from ME be spending time on websites related to their former illness. I don’t know about anyone else, but I would be LIVING LIFE to the fullest and would never look back.
Yes I fully recovered and retrained so that I could help others too. I came on this site to give a point of view from someone who has recovered using this approach.
Interested to see this debate, however all I would say is that despite how things may sound you cannot argue with someone’s personal story. I was debilitated by fybromyalgia for 3 years. They were the darkest days of my life, I was on so much medication and yet nothing could ease the chronic pain that I had to endure every day. I battled to get out of bed. I cried with such deep frustration that my body could not do what I wanted it to do. I couldn’t sleep, I was constantly exhausted. It hurt to lift a mug or hold a book. I had pain in all my joints. I struggled to walk. I couldn’t care for my children.. It was horrific. Since doing the lightning process in 2009 I have come off all my medication. I have lost 4 stone and I am running 7k on a regular basis. I am pain free, I have loads of energy and I am living life to the full.
I never ever dreamt that this would be possible for me but this is my story. No one is paying me to tell it and believe me I would never be so cruel to give someone suffering false hope.
For me it was the most courageous thing I ever did and not a day has gone by since where I haven’t been deeply thankful that I took that step.
The lightening process is so worth it..after being bed ridden for 3years on and of I now feel amazing living life, working hitting gym 5days a week. its helped me in every area of my life a amazing tool to have 🙂 I love the lp
It took the doctors years to diagnose me and when they did I saw 2 specialists straight away. One was useless and the other actually recommended it. I went on the LP course and no it was not too much for three days, it is not too much, its not too intense and you can have a sleep if you need one. One girl I was on the course with was like a foetal when she came in yet she carried on the course everyday by laying down and by day two she was walking again. Yes, I know people it hasnt worked for but the reason it hasnt worked is because the person is narrow-minded and not stuck to it. I’m a minor and I dont think its wrong at all. The LP enabled me to go back to school and it was the best thing I ever did.
Those who didn’t work for are ‘narrow minded’? Lay on the guilt, why don’t you. Maybe you should consider that the underlying pathology is not the same for all and so while it is great your health issues have improved, bear in mind others might not be so lucky and it is nothing to do with being narrow minded
i am not ‘laying on the guilt’ i understand everyone is different. I am just fed up with wrongly informed people and people who are knocking it before they try it.
Congrats Sophie! It’s brilliant that you got your health back. I too fully recovered using LP. I’m so pleased to hear you were able to get back to school!
Thank you Claire, congratulations to you too!!
LP and CBT are not working for ME/CFS even when the stressresponse and our system is in overdrive -what i believe- it is due to something that is broken or damaged. If you want to ‘stop’ this reaction there is one thing you can do: breathingtherapy. This will activated the parasymphatic system -which is broken!- , you can not heal this but it can make you feel a little better. CBT and LP are blaming the victim therapies or in other words: GASLIGHTING!
I also did the Lightning Process and benefited from it. My M.E. arrived through a very stressful job in South Africa and I had to come back to the UK. Except at the beginning of the illness I have never been bed bound, just very limited in what I could achieve before my energy ran out. The course spread over 3 days was not too intensive and there was plenty of time to rest inbetween sessions. When I had completed the course I felt much better, had more energy. I was never made to feel that if it didnt work I had failed. I think it depends greatly on the Instructor. There was a little girl (about 6 yrs old) on the course with her Mother and I heard afterwards that she was again able to ride her pony and was back to normal. Unfortunately about 2 years later my Mother became very ill and died and the stress brought M.E. back with a bang. If I had put into practise what I had learned I think I would have come thru better but my mind was too occupied with the every day situation. Being reminded of it, maybe I’ll get the course papers out and try again.
I am in the uk and I’m now 38 I had ME for 13 years and in 2009 I did LP and it changed my life for the better and I now work and do the things I love to do. If you do the course be open minded and also keep seeing your doctor to rules out virus and suchlike but please do not dismiss this method as a way of taking control of your own life best thing I ever did.
Am delighted your health has improved so much. Do you take on board many try LP with no success? Many thanks
do YOU take on board that many try LP with loads of success?
This study is done with only mildly affected children as we can read in the study protocol:
Children will be included if they have CFS/ME and are between 12 and 18 years old inclusive. Children will be excluded if: they are too severely affected to attend hospital appointments (defined as children and young people that do not regularly leave their house);”
Furthermore these children are given a diagnosis of “CFS/ME” according to NICE guidelines. So Crawley works with something like the Oxford Criterias: This means children with depression but not with ME might be included, maybe much more children with depression than with ME.
This study will prove nothing more than that LP might be effective for children with fatigue (probably many of them depressive). Though Crawley et al. pretend to study the effectiveness of LP for ME/CFS they mainly study the effectiveness for depressive patients with fatigue. Any study with lack of diagnostic criteria like CCC or ICC and without cardinal criteria of PEM is waste.
And please have a look at this document concerning LP:
Thank you for sharing the criteria involved in the study. I fear, as I am sure so many of us do, should there be some successes they won’t focus on the very broad criteria used. As you said with such criteria and no severely affected children, children with a predominantly depressive illness could easily be swept up in the cohort. And then they extrapolate that to people with Neuro immune illness, unhelpful
Thank you for providing this pdf. I think it is important for those claiming harm or no change to be heard. This can happen to patients who try so many treatments which can leave them worse off, but they do not have the ability or place to voice their experiences. A benefit:risk assessment has to be done for any treatment for ME/CFS. Many of us in North America have been harmed from almost any kind of treatment you can find due to the lack of understanding about the illness and its pathology. Years of that can be harmful and I think a very thoughtful assessment must be done…especially for children. It really scares me to think that these young people may be negatively affected or be left with beliefs about themselves that could carry on for years. I hoped we were beyond the blame-the-victim stage for this illness.And what if their parents believe in the Lightening process despite the child not improving and then also blame the child. Even if that happens to one, that is too many.
Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome
Madlen Loebel equal contributor *, Kristin Strohschein equal contributor, Carolin Giannini, Uwe Koelsch, Sandra Bauer, Cornelia Doebis, Sybill Thomas, Nadine Unterwalder, Volker von Baehr, Petra Reinke, Michael Knops, Leif G. Hanitsch, Christian Meisel, Hans-Dieter Volk, Carmen Scheibenbogen
Published: January 15, 2014
Full Text Article:
I’m all for the lightning process. so what about the name??? it works isn’t that the main thing???
Got rid of M.E years ago using the lightning process..yes GOT RID. not significantly improved, but completely got rid of it. it was the only bloody thing that helped me after a journey of hell because the doctors didnt know what to do with me…had no bloody proper help from doctors and suffered badly…thank god i found this otherwise god knows where i’d be…
bit annoying seeing all the negative comments but hey ho i’m well and the results will speak for themselves.
Currently having treatment for a leg burn, its got all infected and causing me hell…had 3 different opinions from 3 doctors all trying saying it should be treated in their way….because of this inconsistency in opinion from ‘proper medics’ my leg is a mess!!!!! so who knows what to believe?????? they are meant to be trained to deal with burns? errrrr no. so i couldnt give a damn about whats tried and tested and trialled- doesn’t always work!!!!!!!!!!!!!!!!!!!!!! you’ve got to think outside the box sometimes, for god’s sake. So now, just like with M.E i;m having to go online and find a cure because the medical profession can’t deal with it!!!!!!
Thanks for relating your experience MJ. On a scale of 1-20 what was your level of functionality before you got well?
Glad you are better. Hope you take on board for many LP does not help
Asking somebody with modetate M.E to condentrate for more than e hrs on cons ercutive days just shows a complete lack of understanding of the condition and how srs it is. I hope these ppl ate to account when when some hard evidenve is exvepted, bc it is out there. My guess is the ppl tjat are helped habe been labled with M.E when they had a different issue all along. In short the thing is a scam. You know your own body. Dont let idipts tell you what to think!
I do agree that difficulty concentrating is a key, key problem in ME/CFS. It’s a huge roadblock for therapies like this. One study showed that people who were more severely ill simply did not benefit from coping mechanisms the way people who were less severely ill did.
I think you’re probably quite right that people who benefit from LP, Amygdala, Mickel or whatever may have a different type of ME/CFS than those who don’t.
Cort, you wrote
“Neither the adrenal glands nor the HPA axis, however, have been identified as a major player in chronic fatigue syndrome.”
I disagree. This study shows clearly that the activation of the sympathetic nervous system response, which is connected to the HPA axis, correlates with levels of cognitive disfunction in ME/CFS.
What do I think about the study?
My hope is that the study will be conducted in a less “cultish” way than what some people describe the lightning process as. I am quite confident that this will be the case, as Phil Parker other than Phil Parker were included in the design of the study. I also like that only moderate and mildly affected PWCs will be included in the study. This way the risk of possible harm will be kept at bay, while the chance that people will improve seems pretty good (better than most other treatments for ME/CFS, according to that ME Association survey Cort quoted).
Thanks Johannes, I grant there is a link there. Alot of studies have been done on cortisol and the HPA axis; at one time it was the top research topic in ME/CFS, but the findings were mostly mild and its not being explored much anymore. That’s why I think other systems, such as the autonomic nervous system are probably more important.
I have had ME/CFS for 26 years now and as a research scientist I watch what happens to me, looking for patterns, cause and effect, changes over time and try to understand what on earth is going on. My current theory is that for some reason my body doesn’t produce energy properly. If I stay within my energy production limits (currently 1 hour moderate activity 3 time a day) I am OK if I exceed those limits my body releases adrenaline to produce energy. It does this so well now I notice it any more. With the adrenaline release comes a feeling of well being which, if you don’t realise what is going on, encourages you to do more; when if fact you should STOP. If you look at the action of prolonged release of adrenaline on the body you see all sorts of things that are similar to ME symptoms, gut problems, cold hands and feet, anxiety, lowered immune system being just a few. My big worry with LP is that they are encouraging people to push beyond their limits, which in turn trains their body to release adrenaline. Adrenaline release in the short term is great, you feel good and have energy to do anything you want but unfortunately there seem to be long term effects, in other words a price to pay in the end. I think getting rid of negative thoughts is great because they are a huge energy waste, pushing sometimes is OK but I am not convinced that LP is a cure.
I agree with you, I went for 25 years before being diagnosed, as a working mum I pushed and pushed my body trying to be like ‘normal people’, even while ‘moderately ill’ I used to go dancing several times a week, it felt so good all that adrenaline rush, I thought I was being good to my body by exercising. But as time went on I could do less and less, I eventually got diagnosed a few years back when I couldn’t get ‘well enough’ to return to my part time job. I have spent the last 3 and half years trying to ‘get better’, I can now brush my hair once a day and clean my teeth most days twice, now working up to bathing once a week every week. My illness had nothing to do with my ‘mind’ my body decided it would make less and less energy, trying to be ‘normal’ damaged my body more and more.
I avoid adrenaline release for the same reasons: I think my body can’t get rid of it afterward. I don’t allow too much anger, joy, and all the other emotions. Otherwise, I pay for it for days after.
What you say makes me think that you might look into the B1 connection – I think it works for me because it helps my cells make a bit more energy (we’re talking 20% improvement here, not cure).
I’ve done my own research because megadoses of B1 are the first and only thing that has worked a bit in 24 years, so I was unhappy when it got mixed up with an allergic reaction (still not pinned dosn except that it is probably NOT the B1), I went off B1 for a while, lost the extra energy, and didn’t get it back until I ramped back up to a LOT of B1.
I’d like to do a lot better though, so I keep reading. Check out the blog posts that turn up when you type ‘B1′ into the search box on my blog; I’m planning on updating when I get some extra energy (grin), but at least I’m getting either regular writing time every day, or the possibility of handling crises without total crashes. Cort, and Karen Richards’ post at ProHealth, were my sources for what little B1 information is out there.
I had an email from a nice nigerian man the other day that wanted to send me $830000 and all I had to do was give him all of my personal details.
The lightning process is just a big of scam as that email. Infact its worse because they prey on the weak and vulnerable in particular. Im disappointed you even mention it on here to be honest.
Gupta does at least offer a money back guarantee so even if it doesn’t help he isn’t scamming you out of hundreds of pounds.
It’s very similar to Gupta and I wouldn’t miscall Gupta – it’s much cheaper, can be done at home within your own limits and there’s the money back guarantee (which I took advantage of once I discovered it was LP by another name 😉 ) Another thing about these programmes is the great mystery before you buy, they won’t tell you honestly what you’re buying before you sign up to them.
LP smacks of cultism. Please note that you’re not allowed to discuss it with anyone (that would be in case anyone told you that it’s rubbish and you’re being brainwashed and taken for a ride). And you’re not allowed to think or say anything negative, so all the reports of people doing well on it are “selective reporting”. So if I’d had a good day and spent the day out at the shops, I could report what a good day I’d had. But I wasn’t to mention the rest of the week I spent in bed feeling ill because I’d overdone it on my one good day – that would be me “being negative”.
I must give some credit to Parker for that trick – it’s a brilliant means of acquiring only positive testimonials.
I’m commenting here on LP and other courses for ME/CFS.
I wouldn’t equate Ashok Gupta’s amygdala retraining to Phil Parker’s LP.
Someone I personally knew who did LP stated that it was “NLP with boxes” . It initially worked for her but as she was prepared to do too much the fatigue etc.problem appeared again. The purely nutritional approach didn’t work for her either. I suspect she wasn’t prepared to pace herself safely as per some of her blog statements
I do personally know of at least one young person who appears to have been cured for the last 2 or 3 years. She is back to riding her horse and has a responsible job in banking. I’m so thrilled for her recovery
If LP is better supporting those that it hasn’t worked for I am pleased to hear it. That once wasn’t the case.
A great deal of money can be spent on LP with no guarantee of success. I can’t bring myself to pay it. The one UK LP provider I spoke to said after 45 minutes that I wasn’t ready for the LP course as I was using careful pacing to have a productive although easily fatigued life.
Ashok Gupta uses NLP techniques but backs his approach up with many other healthful techniques such as videos, discussion list, seminars and support for returners. Using visualization of a time I was well and very happy I was able to improve and feel better in myself virtually immediately. I still use thattechnique today.
My opinion is that both NLP and CBT can give us the skills to love and support ourselves, thus reducing anxiety, and the horrid and long-term effect that that can have on our bodies. I also feel that most of us need specific knowledge on how to live productively with this illness, and how to acquire the skills and knowledge to do so.
I feel that some of us have done some pretty long term or permanent damage to our bodies, leaving us with nutritional deficiencies that can be improved upon. I think this covers gut problems as well that for me have responded to probiotics such as those home made yoghurt and Keffir. Dr. Sarah Myhill in the UK does blood tests for such nutritional deficiencies and then proscribes and supplies minerals etc.
However, until we find our own personal and unique understanding about what our own illness is like and what we need to do to keep from unintentional self-sabotaging, it is far too easy to push-crash.
I am grateful to the understanding that I got and am still getting from the nearly free ($30 with textbook ) Bruce Campbell course CFIDSSelfhelp.org. Learning and working with an on line class of about 15-20 people is very supportive and increases my ability to learn and understand both the illness and the many techniques and tools I can and have used to improve.
The Bruce Campbell protocol and techniques, drawn up with ME/CFS specialist Dr. Charles Lapp are free on-line at http://treatcfsfm.org/
Users do not have the course discussions and are on their own. I think the $30 to upgrade to the more detailed course with support from fellow class mates and Bruce Campbell himself is a drop in the ocean. Coffee money for a week or two.
I am not cured or completely recovered but am symptom-free except for having to be careful with limited physical energy and the tendency to find social and cognitive situations very energy draining.
I have the knowledge and skills to do some teaching, go back part-time to college and head up a committee for a group of very skilled textile artists, which provides talks activities, and workshops. I need to be careful to safely pace my life but feel that at 68 I have got a very satisfactory life back.
I also wanted to thank you for presenting such a “hot” topic so sensibly, Cort. Well done.
Maybe a better word for “hot” is contentious. (couldn’t edit my comment)
I’m a medical psychologist with many personal years of fibromyalgia, injury & arthritis. A variety of things have helped me including chiropractic, sublingual desensitization for food allergies, Rolfing, Reiki, EFT & Donna Eden Energy Medicine & biofeedback. The most powerful for me now at age 74 has been a medically supervised detoxification program with a variety of tests & steps to deal with my individual biology. I also had genetic testing with 23andME & MTHFRsupport. I’m still in process, but the improvement is huge. I don’t have enough info on this approach yet, but am looking into it. I can see some value in it, but need to see if it is comprehensive enough.
Glad to hear about the progress doing detoxification procedures. I’ve always want to check that out.
There’s not much more I can add to what has already been said but ..
I’m reasonably convinced that stress may play a part in a ‘multi-hit’ scenario in the onset of ME/CFS in some people and that stress may also play a part in the exacerbation of symptoms, again in some people.
That being the case I can see that practices that may help reduce stress such as mindfulness meditation may bring some relief of symptoms. It would be hypocritical to then suggest that ‘therapies’ such as CBT of the Lightning Process that purport to work on a similar principle have nothing to offer.
So if anyone has the money and the inclination to try LP then I’d say go for it, as long as you are willing to accept personal responsibility for any harm you may do yourself in not heeding your symptoms or ‘not doing pain’ etc. Consenting adults and all that.
Therein lies the problem. These are children and not consenting adults. As long as we still don’t know exactly what is going on in ME/CFS it strikes me as incredibly irresponsible to encourage children to ignore or work through their symptoms. Regardless of ME/CFS is this a sensible way of thinking to teach children? There are many serious childhood illnesses where early detection following reporting of symptoms may make the difference between life and death. Not to be too sensationalist – but childhood leukemia, diabetes etc?
As for science, using SF36 -subjective self reporting of symptoms as an outcome measure of a therapy which aims to change how subjects interpret and report symptoms? – come on Esther – that’s not science.
Sorry to rant. As I said I’d have few problems with this if it was directed at adults but children is another matter altogether. I really do hope no taxpayer funding or taxpayer funded resources are going into this.
LP is mental abuse or gaslighting. It is ridiculous.
There are so many things wrong with this, but the first thing is how damaging it will be to vulnerable children.
Secondly why is the funding not going to serious biomedical research instead?
Thirdly the children selected are not selected under a decent enough selection criteria (think PACE)
And lastly reading the interim report it looks like many children have trouble engaging and finishing the programme. I hope they fall flat on their faces and this stupid process disappears into obscurity and is replaced by sensible, meaningful research.
My sister did the LP for severe depression and got really great results – not a complete ‘cure’ – but more helpful than ANYTHING else (and there was a LOT that she tried, and a LOT of cost) in over a decade. She did not feel it was expensive, given the length of the course and the before care and after care via phone.
I have since met numerous people who credit the LP with their recovery from M.E. It has been very moving to hear their stories, and how they are finally able to do the things they want to. I have met these people in person and many of them did the LP years ago and have not relapsed at all since, or have had minor dips but got back on track really quickly.
I appreciate that there are plenty of people who did not feel it helped them, and that that experience must have been very dissappointing and difficult, building up their hopes, and then not getting results.
However, I am glad this study is being done, as I believe there is SOMETHING to it – and it’s important for anything that is getting results to be looked at closely, so that any chance of helping M.E. sufferers is seized.
Donna was unable to get her comment in due to technical issues. She wanted to state that
“I think LP is a “feel good”scam, designed to have people invest big money and time searching for a cure. Not many CFS people could deal with over 3 hours for 3 days straight. I feel sorry for those young people he tries to prove his point with. Desperate people get taken by con men like this all the time.”
In Norway a 13-year-old boy attempted suicide after doing the Lightning Process course because “He could not get well, and felt it was his own fault.”
The Lightning Process is a British invention. In Great Britain they slap the label ME on any fatiguing illness that the doctors can’t be bothered to properly investigate. Is it such a miracle that it would work for some? No, of course not. Because they didn’t have ME! You know, the neuroimmune illness?
I’m very disappointed that you would publish such a blog. The very fact that you mention Esther Crawley and the word “scientific” in the same sentence shows to me how little you know about her involvement in ME/CFS. She is one of the Wessely school, that enough should set alarm bells ringing. And to use children for such a ‘study’ is unconscionable. LP is a form of brain washing and I’m afraid some of the children will be irrevocably harmed by this.
The thing is: ME is a symptom or group of symptoms triggered by an immune response whether it be a toxin, a virus or a stress trigger. The cure will probably come from different avenues to resolve each symptom and get the immune response to settle down. Toxic triggers need to be detoxed, viral triggers will need anti virals and stress triggers will need stress management which is where LP comes in and probably gets it’s best results. It may have it uses for some but not the majority of cases which are caused by toxin/virus/diet issues.
How does someone with ME cope with a three and a half hour session? I have to rest after half an hour of exertion. If I did this session, I would have payback fatigue for days.
Esther Crawley has already wasted £5 million on research into psychological/behavioural therapies. some young people were made extremely ill from the exercise and the statistics of her results don’t seem to reflect the outcomes correctly.
I was angered to see she was given further funding, into therapy treatment and especially the LP process, which has already been investigated and found guilty of false claims.
Watch ‘Voices from the Shadows’ film and Dr Nigel Speight’s new films, which show the horrors of exercise and this type of therapy programme on some ME Sufferers.
Mortified, but ME/CFS is a label often given to many people i.e. 40-50% who do not actually have ME/CFS. They are found to have other, sometimes serious diseases. Professor Julia Newton has said this.
We need further more in depth tests to see what we’ve really got first. This is what we a sadly lacking
LP is mental abuse. I don’t believe this therapy works. It is the same nonsense as CBT. I am sorry but patiënts who said this works for them – i am happy for them- but they certainly don’t have the same disease as i do… i know that for sure…. sorry i don’t want offend anyone but if LP/CBT is a cure for you; you don’t have ME.
Gijs you know nothing about me or the illness and hell I went through for thirteen years. How dare you belittle the illness nd suffering I had. The LP changed my life for the better permanently that is a fact. It is Also a fact I had ME. Just because something hasn’t got 100/ proof doesn’t make it true.
I wrote:”sorry i don’t want offend anyone” and i did not mentioned your name. But still i don’t believe in LP or CBT for ME. It proves just the opposite, if it helps it means that mental problems and issues have a major impact on someones symptoms. I also don’t believe people to have ME who can run and bicycle 10 till 100 miles… sorry… ME is very heterogeneous. But it does not mean that i don’t believe that these people are not sick. It depends on definition till we have an objective way to measure it. Maybe i don’t have ME 🙂 LP and CBT are no science.
I tried LP in desperation a few years back. Didn’t work for me. Of course positive thinking can help to a certain extent with anything, but certainly won’t provide a cure for an illness that is not psycological in nature. Although ME often causes psychological problems- who wouldn’t get stressed and depressed living with debilitating fatigue- it is not in itself caused by a psychological problem. In my case it followed on from a virus infection. I personally think the founders of LP are exploitative individuals. Looking to make as much money as possible out of the vulnerable and desperate. Just look at their extortionate course costs! If any decent individual had really found something that could provide relief to so many desperate people, surely they would want to make it as accessible as possible. Don’t be misled. Phil Parker is nothing more than a canny business man
Cort, Thanks for this post, as well as all the others you’ve posted in the last year. I’m very interested in Steve’s take on the condition, that toxic triggers need to be detoxed, viral triggers will need anti-virals and stress triggers will need stress management. I can see how it would be wrong to try to use treatment for one of these for any and all subsets. (Although the LP process may work for some, I can’t support any process that encourages the ill person to blame themselves.) But back to Steve’s original point, I have a question.
Steve, how would you classify it if the trigger had possibly been a vaccination?
Lynne, I don’t see how stress can be implicated as a trigger from vaccines..they may cause stress from a toxic reaction, a Herx reaction. Vaccines have long been known to have added toxic metals to them, so if your body is already drained from overwork and a bad diet particularly the western diet then adding a vaccine ..moreso a live one is very likely to trigger ME type symptoms from primarily the metal toxins and possible reaction to a live virus when the body is too overstressed to cope. The flu vaccine is one controversial vaccine full of toxins that I would not take. So vaccinations are a toxic trigger.
Stress is a pretty wide term. A vaccination can ‘stress’ your immune system by prompting it to produce, I guess, antibodies against whatever pathogen the vaccine is guarding against.
The LP does not promote a blame culture or encourage cult like behaviour, but is clearly emotive for the critics. Its success is based on understanding, a level of self awareness, belief and the science principles applied. Therein lies a reason it may not work for everyone. I cannot comment on ME but have found it extremely successful for stress, depression, anxiety and IBS. Perhaps phils latest book has fuelled the critics, but is a great reminder for past participants on how to apply the process. The best money I’ve ever spent for positive change.
They do completely blame you if it doesn’t work. When I complained to Parker, he answered all my complaints with “that wasn’t what the training was about” and I’d “misunderstood the training”. Supposing I had, that would imply his training wasn’t very good then 😉
O yes, they really do completely blame you if it doesn’t work it is the sam with CBT!!! It is blame the victim and mental abuse.
well, I think mind/body and relaxation techniques can achieve benefits, but usually no more than minor.
In my own experience they can help, but its really just management and symptomatic rather than any fundamental treatment of underlying condition.
I am constantly annoyed by people who say ‘I tried rest and I can’t do it and it didn’t help.’
Just because techniques don’t CURE CFS, doesn’t mean they shouldn’t be used to ameliorate those problems that are part of it and CAN be improved.
Then our remaining energy can be used to the things that are NOT caused by stress, lack of pacing, etc.
This disease – and anything with a chronic component – has two parts: physical and mental. Some parts we can improve for ourselves, others we can’t. But don’t knock the improvement some techniques can provide – every little bit helps when you’re dealing with something so complex.
Maybe those who really do get well by the techniques had more of the manageable mental component than others who didn’t benefit.
Of course, if they removed the physical component, my mental problems wouldn’t amount to a hill of beans: I used to nap 3-5 times a day, just to be barely functional. Now, with B1 megadoses, I take 1 nap after writing in the morning, 2 on very stressful days. NOT a cure, but better. It may be that way with a lot of the treatments. They work PARTIALLY for those people who have that particular component.
How dare anyone suggest I didn’t have ME because LP work for me I was exhausted for 13 years and it was pure hell. It is not advertise as a guaranteed cure and there are stringent assessments to be allowed on the course if the practitioner doesn’t feel you will benefits you won’t go. I am aware that some do not benefit from the course but I truly feel that if wholeheartedly follow the process you have a good chance of making great improvement. The skills you learn I still use 4 years on in all seas of life. The course itself does not exhaust you its doesn’t require intense concentration and you can rest if you need to And if necessary the course can be done 1:1 if someone is bed ridden
After 13 years of illness and having cleared for other causes of illness I was pretty much at my wits end and I did the course with attitude that this was the final option so it will succeed and it did. There is science behind the mind body connection you do just have to take a leap of faith. The cost of the course for what is is reasonable and some practitioners will reduce fee for some if they think they will change for the better.
Phil Parker is not a charlatan he genuinely wants to help as many people as he can.
LP is not a magic cure it is an opportunity to take control of your life instead of life controlling you.
I know many patients who gets a lot better just by natural course after 3,5,10, 11 15 18 years. LP is just the same as a placebo effect. Even hard medicine doesn’t work as people think. Why? But if it helps for people i am happy for them i wish it helped me.
The natural course idea doesn’t make sense for me when someone tries 20 different treatments and then suddenly gets better when they try the next one. That suggests to me that they actually found the thing they needed.
Someone who’s using a bunch of treatments and slowly gets better could be described as ‘natural course’. However, if they noticed small improvements that were associated with one treatment and then the other. I wonder if natural course would apply.
In the recovery stories I have some recovery stories are clearly are the result of natural course. They generally involve pacing, perhaps some supplements and mind/body stuff but it seems like it’s more time and the body healing that is the key.
It is hard to disentangle it all.
Whether or not LP is the same as a placebo effect is irrelevant if it makes you better. The placebo effect is not well understood, but basically the result is if you think you’re going to get better, then you often will get better. LP both acknowledges, and makes use of this fact.
As someone who had a migraine constantly for 3 years before doing LP, it doesn’t matter to me exactly how it works, I’m just enjoying a life that’s predominantly pain-free.
Oh and the whole thing about being blamed for being ill or he LP not working , you are told from the outset the technique must practised regularly especially straight after the course. If there are practitioner used the word blame they are clearly wrong but if you don’t take responsibility for yourself then who will. LP also teaches self compassion which contradicts all the claims that you are blamed if it doesn’t work. I walked into my class a sufferer and left 3 days later without ME and it changed my life forever.
Mob that is your personal opinion not fact. At no point did I feel blamed for anything I just believed this was my last chance and it worked 100./.
If that comment is directed at me, then you and I are both expressing personal opinions.
But it is fact that I did the LP training, trained by Phil Parker, and I gave it my all. I fully subscribed to it, the £600 plus travel and accommodation expenses was a large amount of money I could ill afford and at the time I also believed it was my only chance of recovery. The fact is it didn’t cure me, it didn’t improve my health in any way and the fact is it caused a relapse and made my health much worse for nearly two years. That’s fact.
Jane. You have missed the point of LP completely it’s not positive thinking stops you being it. It’s a technique which taps in to the powerful influence your mind over your body. I say again as we’ll to ensure that all checks are done to make sure there isn’t a treatable underlying illness. Most practitioNrs have been ill and recovered using LP so to say that all practitioners pray on the weak, whilst you have a right to your opinion, this is an unfair generalistion
I’m not sure how testing for underlying problems work. As doctors won’t do many tests that could show problems, such as spect scans, immune markers, cpet testing, it is very hard for someone with ME to get testing to show what is up. Sure, there can be tests for conditions over and above the ME but that is as far as it goes.
You describe your 13 years of being ill as exhausted. It’s now how I would describe my experience of 14 years with ME. I am too weak to be out of bed, I have terrible noise sensitivity, 24/7 chronic head pain. Massive increase in symptoms by the smallest amounts of physical and mental exertion.
For those of you who have found LP helpful that is great, but I really wish you would acknowledge more forcefully – as opposed to saying I think if someone really put a lot of effort into it they would be helped, suggesting those who aren’t haven’t put enough effort into it. There are many who don’t improve using LP however much effort and time they put into it – and most worryingly have pushed too far and been made worse from LP long term. Until it can be established which small subset could benefit trying LP is risky. To do this on young adults with the risks involved is unsafe
Annie, it doesn’t look like you will have acknowledgement from those who were helped by LP that it is not for everyone,that some people are made worse or that for some it is not useful at all or just temporarily -It looks as though by the protocol that that would go against the protocol itself to do so,but I agree that that would be honest to admit.
LOL, what a pathetic study! On kids, good lord. Eventually all of these scams will be history once the cause is found. I feel Sorry for anyone who has wasted their money on this garbage.
The lightening process is an amazing tool for helpong find health again. I was bed ridden unable to move and I was up walkin on the third day of the lp. I would let anyone who doubts what I had to read my medical notes. You can’t ignore evidence and the overwhelming evidence is that this works.
It is indeed hard to understand how this could happen. I assume that you didn’t just burst into full health? (Or did you?). How long did the process take?
LP worked for me. I had severe M.E. and was really hopeless about my life and chances of recovery until I spoke to an LP practitioner. After doing the course I got completely well – so much so I am even training for a half marathon now which is incredible cos I couldn’t have walked further than from one room to another when I took the course. I work full time and socialise too. I am completely free of any symptom. I know I’m not going to persuade everyone to try it becase there is a lot of negativity out there but I do want to share what happened to me because I want others to know there is hope. The course is based on neuroscience – the study of the brain. there is nothing weird or new age about it and as a born again christian it did not conflict with my beliefs in any way. I am a qualified nurse also and I found the rationale for and the basis of LP completely sound. It is a real shame so much negativity is out there about it because it has completely changed my life. I also know 5 others in person who have successfuly recovered from M.E. through LP plus countless others I’ve met on line. I’d encourage people to look in to and find out if it is for them rather than just dismiss it. My practitoner gave me so much time preparing me for the course and in follow up afterwards – she went way beyond and above what I would have expected. Her daughter had M.E. and is now completely well and living abroad. So her motivation was extrememly genuine to help otehrs recover from this very cruel and debilitaing illness. If anyone has questions and would like to know more I have my own fb page to share my recovery story and you find it at http://www.facebook.com/overcomingME and message me via that. If I can help even one person find their way to recovery then I will be delighted.
Apprecite you are a reputable researcher interested in balance but even you fell into describing LP in rather negative terms. IE.. ‘controversial to some’ and ‘an impediment to reserach to others’
What about ‘ an extraordinary life changing process’.
I was largely bedbound with ME/CFS for 22 years after being diagnoesd in 1989.
I heard of the lightning process four years ago but put off doing it until 2012 due to all the negative comment by people who hadn’t even tried it. It’s an uncomfortable feeling reading similar posts from peolple from similar perspectives knowing that many will put off doing the process just as I did.
I was up and out of bed within a couple of days . I’ve been working full time for 15 months now. I paid £550.00 to get my life back. Extraordinarly good value.
Could contributors perhaps state whether they have done LP so we can get a sense of where they have developed their opinions.
For those with fatigue. Allow yourselves to understand that the anger you read is being vented by a small number of people often without any real insight. For those it hasn’t worked for. Ofcourse it’s devastating to read contributions such as mine. Might you consider talking to your practitioner again? Two of my friends had success the second time around.
Writing from heart with no vested interest. Nicholas.
Actually I’m just a writer. I try to cover the bases and Phil, as the comments have shown, is viewed that way by some and obviously not by others who’ve benefited from the course.
Thanks for relating your experience.
Having done the LP training with Parker himself, I think that I can be said to have real insight and that my anger is justified. I did talk to Parker later about my concerns and was fobbed off by him. He wasn’t remotely interested that it wasn’t working for me. I certainly wasn’t offered my money back, as any reputable professional might have done if he was so convinced of the efficacy of his treatment.
First of all ‘Thank you’ for asking for opinions on this matter from patients.
I have to start by declaring myself to be a huge sceptic about anything being undertaken by the psychiatric faction in the UK. Esther Crawley though not a psychiatrist herself has undertaken to support that line of thought in her outlook and management of ME. It’s plain to see on her website that she views ME and or CFS as a behavioural problem rather than a disease.
I have had ME for 25 years and 3 of my children were struck down around the same time as me. I have closely followed the politics of ME ever since, and so far nothing good has ever come of any intervention by the psychiatric faction; on the contrary they have had nothing but a very negative impact on ME/CFS in this country and abroad. They are currently in charge of all the NHS ME/CFS clinics in Britain and we find ourselves in the clutches of an iron grip from which we cannot escape, with research stifled and all biomedical treatments that could possibly help banned from use. The incidence of children with severe ME being forcibly removed from their parents care is rising (Speight Jan 2014). It’s against this background that Esther Crawley is undertaking to research the Lightening Process on children!
The first question has to be, why choose to do this on children? They are the most suggestible, easily manipulated and least knowledgeable about ME/CFS and this is especially so because the Clinics they are attending are treating ME/CFS as a behavioural disorder. Taken from the clinics the patients will only meet criteria for CFS and in common with other researchers in the psychiatric faction Esther only uses mildly affected patients. Their results are then applied to the severely ill with disastrous results. If she finds in favour of The Lightning Process it could become standard practice to use it in the UK.
A few years ago my son tried the lightning process and there were certain things about it that made it seem very unethical and unsuitable for use in a research setting. A few examples are: The course was shrouded in secrecy and my son had to agree not to talk about it to anyone while on it. Before he started he had to sign a form stating that he was well enough to undertake the three day course. At the end of the course he had to state he was cured and it was suggested he write a letter to the founder stating he was cured no matter how ill he felt. We discovered these letters were then used to promote the business.
David Bells paper about children (Link below) is very illuminating on the difficulties of ascertaining recovery from ME/CFS and is well worth reading.
25 Year Follow-up in Chronic Fatigue Syndrome: Rising Incapacity
I think this Lightning Process research is utterly simplistic and a monstrous waste of money. Nothing but a distraction from real science that should be going on into the Biomedical field of ME and ultimately it will most likely be another trivialising and damaging exercise for patients.
It worked for me.
I was diagnosed with CFS and made some improvement particularly to the brain fog using vitamin B12 injections. I also tried meditation (as mandated by my doctor) with no noticeable improvement.
However, I was completely stuck at a level where I was unable to work. On a good day I could go out for a half hour walk, on a bad day I was sofa-bound. Every time I tried to gently increase my activity levels I suffered a relapse. I resigned myself to the life of an old woman at only 50 and decided to make the best of it.
After about four years of this, I found out about the Lightning Process and decided to give it a go. I made immediate improvements in my activity levels which did not cause setbacks and which were maintained. I felt so much happier!
Nearly three years on from then, I am working part-time in an after-school club which involves a lot of physical activity and I cycle the four miles to work every day. At Christmas I went skiing with my husband and had a wonderful time. I recently went round an art gallery with a friend and it was her that needed a sit-down half way through! I would say I’m around 90% – 95% well now and that is good enough for me. I’m having a disco party for my 60th birthday soon and I plan to dance the night away!
Comparing the cost to say two years CBT, the Lightning Process works out cheaper and I found that my trainer was very generous in interpreting the amount of follow-up telephone support she offered. I really got the impression that she cared about me and wanted me well – and I really am!
I had been suffering with ME on & off for around 20 years. None of my adult life was free from the symptoms and each flareup was worse than the last. My most recent started in 2009 by April 2013 I was bedbound most of the time, I couldn’t even hold a glass to drink from on some days, my Drs were discussing nursing care, I hadn’t worked for years, my vision, breathing, movement, thinking were deteriorating rapidly and I was for the first time fearful if my life had any future.
Then I tried the LP. I do not think that I overstate my situation to say that I felt it saved my life. On the first day my husband practically carried me in from the car. I left on day three almost skipping down the path, for the first time in a long long time I wasn’t using a stick to walk I didn’t fear that each step would add up to a crash later. I wasn’t back to ‘normal’ but I wasn’t dying. Just over a month later I became pregnant (planned) I have never in my whole adult life felt so well. As others have said it wasn’t all overnight, yes there was an initial big improvement, the rest took slightly longer. The brain fog was slow to lift but it did eventually lift. I’m still learning, still progressing, it’s not a cure, if you stop practicing and stop considering the lessons you learn from it then I do think you will slip back to ME but I don’t spend my life being devoured by this wretched illness. I have hope. I have a future. I’ve been back to work until pregnancy became too advanced. I am now looking forward to being a Mum knowing I can do that role, enjoy that role and actually live a life again.
One thing I feel about ME and Fibromyalgia (I also was diagnosed with) is that they are such varied conditions, symptoms change, sometimes rapidly always individually to each person. I don’t think there is a cure-all but I do honestly think the LP is an amazing tool that deserves more attention and for many, including myself, can transform lives and restore hope. I personally could not be more grateful and at last excited about life again.
The failure of the Lightning Process lead directly to my suicide attempt. It is a very basic NLP exercise. In the UK it fell out of fashion several years ago. I know a good dozen people with M.E from local groups who have tried it. One or two have some slight improvement. It’s success (was) due simply to the fact that CFS is a wastebasket diagnosis.
While everyone is absolutely welcome to have their opinion on this, I would like to share my story.
I had ‘proper’ ME for 5 years diagnosed through a ME specialist. I was housebound, exhausted and in pain with all the classic neurological hallmarks of ME as well as multiple sensitivities, constant sore throat, IBS and all the rest. I did the LP and I got well. For me it wasn’t an instant cure but something I worked on and was always improving. The most drastic improvement was within the first week where I was able to walk again for longer periods of time and within 2 weeks had started swimming and doing other exercise. I also worried about the 3 days but by applying the techniques I learned on day 1 I was already feeling better than I had when I had arrived. After exerting myself to attend! How could that be? It was because the LP was working. And that then allowed me to attend the course the following days without payback fatigue. For me the pain and the IBS took longer to go but I was able to keep in touch with my practitioner who gave me lots of support on the phone for over a year and never charged me anything additional. I truly got my life back by using the LP and am completely grateful every day for it. Not only did I get healthy but I’m so happy because I’m living my life again.
Part 2…comment was too long….
It’s absolutely fine to be sceptical, I know I was, but I’m sad to say I put off doing the LP for over a year when I had heard of it because I looked on the Internet and saw all the controversy. Please, make your own choices, but don’t discard the stories of those of us from whom the LP really made a difference. I really hope you get well, by whatever method. We are all linked by this absolutely horrific illness and I think we should stick together and support each other rather than criticise and try and say some of us didn’t have ‘real’ ME. I hope my story has given some hope because I never, ever thought I could be well again and I am.
My daughter took the Lightning Process training 5 years ago at the age of 18. She was diagnosed with M.E and Fibromyalgia. Her condition slowly deteriorated between the age of 16 – 18.
Like many, she was concerned that she would struggle to take it all in, that fatigue and brain fog would be an issue.This was not the case at all.
At the end of the 3 day training we got our daughter back. She has remained healthy and happy and has the tools of the LP training to use for the rest of her life.
The LP literally transformed her life.
Nobody knows if ME/CFS is a discrete illness as there is no single symptom or set of symptoms that define it or a diagnostic test. I am involved with an ME group and people have similar symptoms but when causes are found they vary. I would concur with Professor Julia Newton that misdiagnosis is a big factor,much larger than usually quoted. Stress,whether it is of physical,emotional,or psychological origin or some combination promotes the same biochemical reactions in your body. So you can see that programmes that helps you examine the way you deal with what life throws at you may for some reduce some of the stress and will help them.
I find LP suspect because participators are instructed not to talk about it. If you have developed a programme which really helps would you not want those who had experienced it to tell others ? You would surely get more takers. It is clearly not suitable for very sick people,your body is screaming at you to stop. We need to learn to listen to what our body is telling us. Those I know of who have done LP have had varying success, no one claimed they were cured. If I were a parent of a child asked to take part in the LP study I would want to sit through a proposed session before I decided. Parents are in the best position to judge whether participating would make their child worse.Doctors tend to be highly functional fit people and most don’t grasp debilitating illness in my experience.
I have seen people helped by Reverse Therapy. This does help you examine how you deal with life, you learn something about yourself and if you can take it on board maybe you can reduce you stress and make some progress.
I am new to this forum so I don’t know if you have considered candida as an underlying cause of the constellation of symptoms labelled ME/CFS. For anyone who hasn’t a must read is the work of Dr Orian Truss this can be found on orthomolecular.org search for ‘Truss acetaldehyde theory.’ He wrote a book The Missing Diagnosis and updated it recently just before he died, for UK readers I found the 2nd book on amazon.com but not the UK site My son has been ill for 20 years and as I read Truss’s acetaldehyde theory it explained all his symptoms. We did have a Nutritional doctor diagnose this early on but I now realise his knowledge of it was lacking as are more recent books and websites,they minimise how serious and far reaching candida can be. If you recognise yourself the most effective treatment we have found is Thorne Lab SF722 this is undecyclenic acid, read reviews on Amazon. If you have a psychiatric label you may find acetaldehyde the cause it deranges brain chemistry. If you have candida LP will not cure you.!
I would like to raise several points on the LP:
The science being quoted by the LP:
they refer to an overabundance of stress hormones, and a system in overdrive and the cure lies in the ablility of the brain to calm the HPA in the brain down. Well, science actually shows cortisol to be low in ME in the majority of cases, it is found to be high in depression however, the exact opposite. Phil Parker refers to ME in the same sentence as anxiety and depression so he must see them as similar in his mind.
I have severe ME and I produce zero cortisol for example and I’m dependent on taking cortisone acetate and fludrocorisone replacement. Am I any better for having er….rather low stress hormones? no.
As for adrenaline the other stress hormone which is very short term, If you have ME and you have severe cognitive problems, or problems standing or sitting upright POTS for example, then the system, to help maintain equilibrium, will pour out heaps of adrenaline to compensate, and thank god too, without this you would be in alot worse a mess. This does not mean that the excess adrenaline you produce at times is the same thing as a “system stuck in overdrive” which may be more akin to anxiety, stress hypochodriasis, or that the excess short term adrenaline is the cause of the illnesss.. The HPA system has been studied in ME and there are some abnormal findings but not the stuck in overdrive pouring out of hormones finding on what little science has been done. How Phil Parker gets away with quoting this high adrenaline as the only bit of hard science on the wikipedia article I will never know. He is very good at PR that is for sure, all ME charities take note.(we don’t have a good article on wikipedia for ME)
The ME association’s statistics on LP showed showed 25.7% greatly improved, 18.8% improved, 34.7% no change,7.9% slightly worse, 12.9% much worse.(so approx 45% “improved” whatever that means exactly I’m not sure and 55% no change or worse). The article above mentions these stats in the first bit and then later on it says 25% greatly improved and the other 75% improved moderately at best, which is making it sound alittle more positive overall than it really is I find.
And finally, the 3 sessions of 3 and 3/4hours. Personally I can only take in information for between 20 and 45 mins max, after which I’m not taking in anything anymore, (despite pouring out of adrenaline to help compensate) and even then I pay for it later. I emailed a local LP practioner about this and her reply was something to the effect that well most people improve so much in the first hour, that you will be able to do the 3 sessions no problem….UNBELIEVABLE.
I guess it helps some people but that is what you get with a far too wide and loose diagnostic criteria. I wonder how the diagnostic criteria used in this study compares with the CCC used in Norway on the Rituximab study, I am guessing it is as loose and as wide as you like and will not contain many severeley affected, if any. Then the result will probably”painted” on the somewhat positive side (I do not trust this study) and then it will be touted about alot, this is Phil Parker, he is good at PR.This will be another thing that will get in the way of more good biomedical research being done. Phil Parker doen’t care he’s just in it fore the money, and quite a lot of money too.
I wish I hadn’t read this article, it has “aroused” me far too much and wasted what little energy I have for the week on having to write this and let out my frustrations, lets hope it was worth it.
I guess what really winds me up though about this LP is that I am SO unbelivably desperate that even I can be seduced by it to some degree. If I was able to try it , which I can’t, and it was free maybe even I would…and then when it didn’t work I would kick myself for being such a sucker as to have been taken in by it.
Right that’s it I’ve had my say, I don’t want to hear anymore about LP in the future.
I fixed that confusing sentence. Thanks.
I have a feeling that the comment section of this article is being HEAVILY spammed by stakeholders and practitioners of mind/body programs like mickle, lighting amygdala ect…….. Don’t trust everything you read people. There is a lot of money to be made and sleazy people will resort to all types of tactics to promote their false claims and to get in your purse.
I’ve never liked the false testimony idea; call me naive but I tend to take people at their word; however, it is another good reason to have a study that is hopefully rigorously done….
There will surely be limitations to this study and hopefully they will be made clear. The very severely ill will surely not be included and there may be other biases.
ME/CFS, however, is a big disorder and I imagine it will be representative of a subsection of it.
I am not a stakeholder (?) or practitioner of anything that I know of but I did get well using the Lightning Process – to my own intense surprise.
I’m glad that controlled trials are being done because at the moment I’m seeing a lot of accusations that those of us who got well with it didn’t have “real ME”, or are lying, or have some sort of vested interest. I’m trying not to take this personally but I do find it frustrating.
I appreciate you find it frustrating but it cuts both ways I find many of those who are helped don’t recognise many are not helped by LP and even more concerning are made worse. It’s the fact that LP can make people worse that makes me believe it should be approached with great caution
It’s been an interesting progression. My guess is that the regular readers of this blog have generally not had positive experiences with LP or have not done it or been interested in it; hence the almost wholly negative reviews. Then word got out and people who have had success with it, but are probably not regular readers (no surprise there – if they’re well) jumped in.
This kind of very negative/very positive black/white response to the Lightning Process is one reason why a study will help smooth out our understanding of LP; my guess is that it won’t be as helpful for everyone as the advocates suggest and it won’t be the complete scam that some others believe it is. It will provide help for some and not for others. It’ll be interesting 🙂
I think as Katherine explained above that the study is not including the severely affected and using the very broad Oxford criteria it is not true that the results of the study will smooth out our understanding of LP. How can it when the criteria are broad? My fear is that with such broad criteria the results will possibly show more benefit than would happen if a stricter cohort was used.
I don’t think they’re using Oxford, but they are using the Nice guidelines criteria which is less restrictive than Fukuda/CDC.
That is a problem. We recently saw that the Aussies found a good deal more immune dysfunction in ME/CFS who met the Canadian Criteria than those who meet the Fukuda criteria. Given that the NHS guidelines are more relaxed than Fukuda, you’ll probably get less immune dysfunction in this group.
If Crawley wanted to make a big difference she would simply classify the participants by the different criteria and compare how they did. That wouldn’t be hard at all.
Crawley could separate the participants by the different criteria but she hasn’t
> so I stand by my assertion that I am surprised you think this study will make it clearer if it can help some people. With such broad criteria we don’t know who it can help and this could lead to the study making the blanket conclusion LP can help when it cannot help many patients and never will – and in fact make them worse!
Typo, meant to write above ‘make the blanket conclusion that LP can help all people with ME when it cannot help many patients…’
A good study of LP of any scientific value needs a good design. But only kids, short term in a qualitative study? Hmm. No.
Many of the practitioners of the method has for ever so long, in a very unethical way, advertised LP as a miracle-cure and treated ME patients as homogenous. Thats an extreme form of pseudo-science.
After the first caothic period with no help whatsoever from my GP (who I not blame much since this is a fundamental failure from deep within the healt care system), I was trying and failing, finaly stabilizing a bit. Then I did the LP. Hard, but sort of manageable. Worst case was loosing my money, which after all seemed like a minor downside. LP didnt help me. Fine. I could live with that, if that was it. The problem was LP harmed when going at it in a sort of “brainwashed” manner, ignoring absolutely all symptoms for a period. In the end (after a few months) I crashed big time, relapsed and had a severe setback.
If LP can help some, thats great. But this is for obvious reasons absolutely no miracle-cure. Helping some and hurting others is not very suprising, considering this very hetrogenous group of patients.
Knowing what I know today, I would not recomend LP to anyone, especially not the ones with immune dysfunctions. The only people I would recommend LP to is healthy people dealing with stress and thoughts.
I would welcome a study to stop the practitioners psycho-babble, but such study would have to be designed in a very different way.
Thanks for relating your experience. Hopefully, some day we’ll have tests that indicate who should go into which treatment slot.
For people for whom LP didn’t work we’re getting several reports of relapses from people who ignored their symptoms and pushed ahead. I would think that’s something for LP practitioners to consider as they do lead the course.
I think you’ve pinpointed a crucial issue there – relapses from people who ignored their symptoms and pushed ahead. One of the things my LP practitioner stressed is not to ignore the symptoms, but to deal with them using LP. If you’re just ignoring the symptoms, then it’s understandable that the problem will get worse.
I fully acknowledge that for some people, LP is not the answer. That doesn’t invalidate my own success with it.
It may be that some practitioners need to stress that more. All the mind/body stuff I’ve done works when it opens up a sense of relaxation and energy that allows me to move forward, even if it’s in small amounts. I’ve learned that gritting my teeth and pushing forward doesn’t work. It actually does work – it allows you to get stuff done at times- but there’s a cost. I’m much more attune to the cost now and how I want my body to feel.
I’m glad Sarah you acknowledge that LP is not the answer for many. One question though as it is acknowledged LP does not help many sufferers how does one use LP to deal with the symptoms? As LP doesn’t work for many you can’t use it to deal with the symptoms!
Thanks for a great article Cort. I am so looking forward to the results of this study.
I had ME and the Lightning Process works for me.
Works? Yes, present tense – I use it. For me it is an amazing life tool I use regularly to improve my health and happiness. It has changed my life.
I have a very simple view on ME treatments (as I do on anything new)
I don’t dismiss anything out of hand without trying it myself first. Otherwise how could I know? How can I be informed to give an opinion on it?
Here’s looking forward to some non-biased clinical research on the Lightning Process. Let’s see what the results are!
PS – I wonder Cort – would you try the Lightning Process?
I probably would. I think I’m getting at stresses that send my system kablooey on my own, but I would probably try it. I got the book about a year ago intending to read it, but haven’t yet. Congratulations on getting better.
There is a book???
I learned CBT from a book – it helps.
I completely control back pain – from a book – it helps a LOT.
I’ve learned sleep hygiene – from a book. I practice it quite well, and get a fair amount of help from doing the techniques when I can’t sleep.
I teach myself a lot of things from books – keep the good, ignore the rest.
I thought there was only ‘shrouded in secrecy’ stuff for LP – if there is a book, and I can be helped, I will get the book and teach myself, thank you very much.
Please provide link to the book (or do you have to do the course – expensive, ridiculous, cultish). If there is something to be picked up, I can teach it to myself.
All very good saying you won’t make a decision on a treatment until you have tried it, but as there are many people who have tried LP and been made worse, then I think it is reasonable if people decide to not try it as they don’t want to take the risk of getting worse
I think it is pertinent that many of the positive comments from people who claim that the “Lightning Process” helped them also include references to negative aspects of their lives – periods of severe stress, depression, low self esteem etc. I have spent many hours reading accounts of people who have undergone this “therapy” and have come to the firm conclusion that this is of absolutely no benefit to anyone genuinely suffering from M.E.
In my recovery stories using mind/body techniques which includes a few LP stories as well as Reverse therapy, etc. I do see some people that suffered from anxiety and depression before ME/CFS. However, lots of people don’t. Sudden infectious onset is common. Some people were operating at a very high level before they mysteriously became ill. I haven’t done an analysis, but my impression putting them together is that they pretty much looked like the other groups. I’ll know more later.
Cort, I find you good-natured in your interpretation of those 130+ comments (even the IOM controversy did not trigger so many reactions here!)
My sense is that because the #1 offense ME sufferers have painfully experienced with doctors and family and friends has to be the psychological view of our illness, most of us have understandably developed an allergy-like reaction to anything that appears to potentially carry this fundamental offense. No false-testimony there! More like a visceral self-defense mechanism!
But as for the others who make a plea in favor of LP, I have to admit that, if it were me, if I myself had benefited from a given treatment, I don’t see why I would feel the need to make a vigorous plea to defend it (emphasis on “vigorous”). I’m not suspicious of all of the above positive comments, but some really seem to border on proselytism.
Full disclosure – I’m a successful LP student. I agree that some of the positive comments above are a bit intense. Part of it I think comes from the fact that when you do LP you learn to focus on the positive – when you look the positive, then you’ll see more of it, much like if you always expect bad things, then you won’t notice the good as much. So people who have done LP tend to be a chirpy bunch (it’s actually a really awesome vibe to be around).
I also think that the super positive comments are in response to the super negative comments. So much of this feed is people telling us that LP is bullshit and it’s unthinkable that it would work. I think that it is understandable that some people have responded just as vigorously with their success stories.
Thanks for support, Annie! This study will not clarify anything because it is done with patients diagnosed under umbrella definition. Probably Crawley (member of Wessely School) will prove benefits for ME patients though only a few patients suffering from a mild form of ME will be represented in this study. This study will do harm to all other ME patients especially to our severely affected children. It is a calamity!
An organic disease will not be cured by a whip!
I hope the study will be very clear regarding the functionality of the patients in the study. Here are the NICE guidelines for diagnosing ME/CFS.
NICE guidelines for diagnosing CFS
Guidelines released in 2007 from the National Institute for Health and Care Excellence (NICE) state that doctors should consider diagnosing CFS if a person has fatigue and all of the following apply:
it is new or had a clear starting point (it has not been a lifelong problem)
it is persistent and/or recurrent
it is unexplained by other conditions
it substantially reduces the amount of activity someone can do
it feels worse after physical activity
The person should also have one or more of these symptoms:
difficulty sleeping, or insomnia
muscle or joint pain without inflammation
painful lymph nodes that are not enlarged
poor mental function, such as difficulty thinking
symptoms getting worse after physical or mental exertion
feeling unwell or having flu-like symptoms
dizziness or nausea
heart palpitations, without heart disease
This diagnosis should be confirmed by a clinician after other conditions have been ruled out, and the above symptoms have persisted for at least four months in an adult and three months in a child or young person.
It may be that people who recover from ME/CFS using primarily mind/body techniques have a milder case of it (or it may not be – my guess is that it’s true) and there may be more depressed people in that group, but there are also people with really severe cases in my Recovery stories project who found their way out using these therapies.
Here’s one – Viral meningitis triggers, becomes bed-bound 24 hours a day, experienced pain, sleep disturbances, was unable to walk, digestive problems, etc.
NICE guidelines (p 13/14):
“126.96.36.199 Healthcare professionals should consider the possibility of CFS/ME if a person has:
fatigue with all of the following features:
characterised by post-exertional malaise AND/OR fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days) …”
Fatigue is NOT post exertional malaise (PEM) respectively post exertional neuroimmune exhaustion (PENE)!
Katharina, I agree. The NICE guidelines are very broad and it is reasonable to assume they will catch up in their net some with ME but also those solely with idopathic fatigue – which is not as you say post exertional Neuro immune exhaustion, the hallmark feature of ME – and depressive disorders as fatigue can be part of major depression.
I am at a loss why Cort believes that this study will give us answers as to whether LP can help pwme when the criteria being used will include a very heterogenous cohort
This money going towards funding this study could be used so much better elsewhere. There are too many people very sick with ME who need research that will help. LP helps some very small subset (and I strongly suspect bio markers will show that they have something different), as ever pwme are not getting the research they need.
IF the technique works, why the secrecy?
The Australian researcher who discovered H. pilori made that information public – it was eventually proved to cause up to 80% of ulcers.
The techniques for learning how to relieve muscle spasms – and thus help most back pain without surgery – are public knowledge. I worked my way through them – and still use them every day if the pain pops up.
Anything that depends on secrecy is suspect by default.
This is not only disgusting, its frightening that in 2014 this can still be allowed to happen. yet again M.E sufferers and children at that are being abused by the very system that should be giving them the correct help and support. Why not do a trial on cancer sufferers and the terminally ill while their at it?
The fact the sessions are going to be lasting over 3hrs just goes to show there isn’t an ounce of a clue about the nature of M.E.
The LP’S criteria means they get to pick and choose who are the easiest to brainwash with their claptrap and therefore allows them to blow trumpets about their success rate. Its an extremely damaging….i wouldn’t even use the term therapy, so fill the blank with whatever you choose to call it.
The fact there is no diagnostic test for M.E yet also means that many people who dont have M.E that have been lazily shoved under the same umbrella, go on an LP course and then boast how they were able to abandon their wheelchair to the side and do double backflips out the building before heading out for a night on the tiles, hallelujah its a miracle i’m cured stylee, and then of course they pay phil parker even more dosh to become an Evangelistic preacher & teacher of the LP school. I’ve yet to meet one person thats departed the school that hasn’t come across like they belong on the stepford wives.
I can guarantee you now the trial will be published as a success, M.E sufferers continue to be framed and let down by our government in attempt at a cover up. The goverment have long known more than they are letting on and their determination to continue down a psychiatric route when its evidently a physical illness only highlights their guilt. There are many many others like myself who will continue to fight to put an end to this abuse.
I`m totally in agreement with Mama Chill. Most people with ME could not cope with a session lasting over three hours and there would be an inevitable payback.
While I`m pleased that it has helped some people, I`m inclined to believe they don`t have ME.
But how can we be sure without a diagnostic test?
I also think that it`s unfair and unacceptable that it targets young people and those who are desperately looking for help or a cure.
Many people with ME are no longer able to work and so live in poverty and can`t even afford to eat let alone pay for treatment like this! I certainly couldn`t.
I stand alongside Mama Chill and many others to fight against this abuse.
My illness is not my fault and I would find it insulting to be told so!!!!!!!!
It strikes me more work needs to be done on the diagnosis of the various manefestations of chronic fatigue. Chronic fatigue caused by stress has the best chance of a successful recovery using these techniques but if the patient has ME/CFS caused by a virus they may not have the same chance of recovery. We need more differentiation!
Those who are bed/housebound are not included in trials as they are unable to attend or sustain energy for the time required for the re-conditioning and therefore the trials are only measuring the effectiveness of those who are minimally to moderately affected.
Also we need to see long term recovery %ages with relapse and remission factored in to results. Glandular fever suffers get better on their own over time, in some cases.
We need to assess why some people become very much worse and join the severely affected. What steps can be taken (if any) to prevent this? Do those severely affected have a common cause or similarities that can be studied and understood?
How do we minimise muscle wasting from the hours spent in bed or on the sofa?
If lightening technique is shown to work then it should be offered on the NHS. These ‘cures’ are too expensive for most people to try.
This is terrible . The world health organisation recognises it is a physical and biogical illness not just psychical . These people that push this process have never suffered themselves and have no idea of how it affects every bodily system . If it was psychological we would all be cured by now from the docs pushing antidepressants . Poor children and adts are suffering being made to try this process which has been proven not to work ! Who is pushing this treatment psychologists ! Why are you even promoting it on this site?
Also recovery should mean full, sustained recovery to pre-illness functioning. My son wants his life back.The trial results need to be clear on the degree of recovery they are measuring
Agreed. I think alot of us old-time people with ME/CFS people would be very, very happy with a 75% return of functioning, but too many studies have fiddled with that ‘recovery’ stat haven’t they? And your son should expect and deserve 100% recovery.
We’ve definitely set a record for the number of comments on a blog on this website. It’s a subject a lot of people are concerned with or have an interest in or just want to have their say. 🙂
Tell you what. I’ll do the lightning process with one of you, and if it works for me I’ll pay you when I’m back at work?
Once again Cort you had the courage and open mindedness to bring yet another interesting concept into our awareness. We should all be thankful to you for turning over every ‘stone’ in the search for answers.
I just want to comment that I am finding some of the positive reports on LP in this thread rather odd. So many people have seemingly come out of the woodwork in a mere 24 hours since you wrote this piece to claim that LP cured them of CFS and they have made a full or near full recovery. What I don’t understand is, if these people have made such a dramatic recovery what on earth are they even doing here on your site? With all the talk from them that they are back to work full time, dancing with their hubbies, skiing Diamond trails and wrestling alligators on their weekend get away’s why would they be taking the time to jump on this thread to comment on their LP experience, and how were they aware so ‘quickly’ that you had written such a post? Many of us who are sick would become aware of your post immediately because this is what we do, we research, day in and day out, and follow our favorite writers, bloggers, websites. Were I to return to full health I don’t think I would be following the literature nearly as closely, though I might if I make the decision (which I might) were I to heal from this illness to try to help others heal from CFS. But this is the other odd thing about these positive responses. Where have these people been as far as supporting the CFS community since their recovery? Its as if, these recoverers have just showed up in this thread, to take a moment of time out from their now busy again lives to say, “hey folks I recovered!………….and well, I just wanted to tell you that and now goodbye again(!)……Ive got to run off to my now fabulous new life!”. I just find it very strange. If you’ve recovered, and so many of you are now wanting to comment in this thread about your recovery, well, where have you been ‘before’ making this comment here and now in this thread? It feels as if we have never heard from any of you…..until now……and then you will disappear quickly into your new lives. Why did you come to comment? How did you become aware of this piece by Cort? Where have you been up until this moment seeing as I seem to have heard so little/known so little from or about you before these comments? If you take the time to comment on your recovery why not take the time to help in other ways? These are dramatic recovery stories and there are nearly a dozen of them in this one thread alone in less than 24 hours. I find it remarkable and, well, very odd, that in one fell swoop, in one thread I can hear so many in such a short matter of time, when I feel like we havent heard from many of you before this. Im not saying I don’t believe your stories. I just find it rather odd that so many people would share so many success stories, just like that and it begs the question? Where have you been, where are you going, why comment, and now that you have, what are you going to do next?
I assume somebody gave the LP community the word that this blog was up and asked them to comment. I can’t think of any other reason unless they’ve been hiding out all this time :).
It’s true that while I was participating in the PR forums I never heard of a LP success story (except for the one I posted about 4 years ago :)).
As this blog has shown, though, LP is a very controversial subject and I don’t blame people for staying under the radar. Some rather typical negative reactions are, and they are understandable, is that it’s a scam (you’re a scammer), you didn’t have ME/CFS or ME, you were just depressed, you have a mild case of something (not what I have) and would you please just go away :)).
These reactions make sense; it doesn’t, on the face of it, make sense that someone who is very ill can do this three day program and then get so much better. It’s too fast, it’s too simple; it sounds like snake oil. It sounds like it might fit a small percentage of the ME/CFS population, but not a lot of them.
I personally don’t think it’s snake oil. I think some people who were ill, sometimes very ill,do very well with it. Obviously others don’t.
I think it sits at the weird mind/body stress response interface that we don’t know much about. The very idea of it raises so many red flags, and goes so against our ordinary everyday understanding of things that it’s going to get a heated response.
For some reason some people with LP success stories decided to come out of the closet on this blog. I imagine they will go right back in afterwards 🙂
You know Cort, I think this is very interesting. Maybe what needs to happen is, if so many people are recovering by using these techniques, I think there needs to be a watershed moment where the LP ‘training’ community really opens up on their methods for the CFS community to see. Lay them bare and make a communal decision to ‘help’ us recover if you really care to see others recover their lives. LP seems to be steeped in secrecy and mystery, atleast to some degree, and part of it has to do with the fact that LP trainers are all now trying to make a ‘career’ of it which to some degree I don’t begrudge. But one of the reasons that so many have a ‘snakeoil’ reaction to the concept, and are thus turned off, is atleast partly due to the feeling of secrecy and mystery, and inaccessibility surrounding it. And this in my opinion is the fault of the LP community and in the end hinders greater recovery for more people. If the LP community truly wants to help others they must make the methodology and treatment more transparent and more accessible. Maybe this study will help though I do feel as many others do that to do the study on children/adolescents smacks of yet more manipulation and creation of suspicion.
Anyways, another great post by you. Thanks for it.
My main problem with LP definitely isn’t the secrecy but the fact that it can make many people worse and so many of the LP adherents ignore this. How can a treatment be recommended for all people with ME when subsets are not yet well identified and it’s a lottery if you will be the person who is helped or made worse.
Read the book. Nothing is hidden
Well said, Mark. I had to laugh as I read your comment because it’s an excellent point.
How does anyone hear about any blogs. From the internet, we are all connected so lots of people connect to other people and therefore people who have go their lives back by doing the LP training do get to hear of these debates and want to share their positive stories.
I put a notice in Interaction’s noticeboard asking for feedback from people who had completed the LP course. About equal numbers said they had benefited/been harmed by it/ had no result either way. Since one third said it had made them worse, I decided not to take the chance. Other reasons for not taking it up were that it is expensive and therefore looks like a money-making scheme, and also that the application form required a promise not to divulge the method. I wasn’t happy with that as I don’t believe in making promises ‘cos one never knows they might be broken, and if the method is successful the teachers of it would want the world to know. My friend who did the course actually showed me the method and it seemed unconvincing to me. I can accept that making some small apparently meaningless change in your life can trigger a bigger change, but wonder if changing something else might work just as well. I would agree that controlling the stress response would help the ME. I would like to see long-term follow up studies to see how people who were helped fared in the long-term, and also if the participants were also trying other methods at the same time. Overall I am sceptical but am put off trying it because some people get more ill with it, and even if there was no change good or bad, it’s still a lot of money and energy to take that chance. I believe the best way to find out if this method works or not is for Phil Parker to now open it to the world and let it be taught for free. That way many more people would try it, and results would be more significant. I would like some explanation from Phil too why some people are made worse by it.
This therapy reminds me of when, years ago (in my first go-round with CFS) I tried going to a healer. Laying-on of hands.
And it was interesting, she was indeed not — NOT — a fraud. But by the second session, her treatments were making me worse, not better.
And that was because something was, shall we say, jammed up — in my body, way down at the cellular level. She was able to increase the amount of energy coming from (or going through) my body. But it had an effect opposite to someone with a different condition would have.
It was like exercise; feeling worse instead of better. Contradictory.
Then, too, in that same period of a couple of years, I tried Chinese herbal medicine. Same experience. NOT a fraud, actually worked. Well, worked the first time or two — then the same story, got worse instead of better.
I think there will be quite a number of people who will have that experience with this “Big Lightning Process.” Maybe it is not a fraud, and maybe it does work well for some people.
My suspicion is that it will not work well for people who get worse, instead of better, if they exercise. Or exercise much, anyway.
There are several things I can think of which would “jam up” a person’s functions down at the cellular level.
(1) Ciguatera toxin. And nota bene, it is cumulative. Each time it happens, the experience can be worse and the person can take another step or slide downhill. And of course, there are people who die at the first experience.
(2) Vaccines. Different reason(s) for different vaccines.
(3) Virus(es). Way too big a topic for this small space.
(4) Antibiotics. These can have a slow and nearly-unrecognizable negative effect on someone’s health. Again, way too big a topic.
(5) Anesthetics. Although it’s likely that some nutritional deficiencies, or other unusual demands on the body, may be involved before the anesthetic comes onto the scene.
(6) Extreme stress. Either an unusual amount, or else stress over a long period of time. Physical or verbal abuse, extra-demanding workplace, just plain being poor and stuck in a really bad circumstance; or being a caregiver for a disabled child, or parent, or spouse. Actually this list could be about a mile long.
(7) Smoking cigarettes. Sorry folks — I do understand how extremely difficult it is to give up smoking. But that doesn’t change the negatives, which extend well beyond the “toxic substances” list that is usually the only thing cited as causing harm.
(8) Exposures to chemicals. From work circumstances, or forest fires, or volcano ash, or pesticides, or from the exhaust chimney of that nearby factory that makes nickel-cadmium batteries.
So . . . what condition or disease do the 25% have? The 25% who are helped by the Big Lightning Process? And how much have they missed out on, from the list above?
– – – – –
“Anon, good nurse, anon! Sweet Montague, be true. Stay but a little, I will come again.”
Ester Crawley is a British researcher. It would be wise for American patient organisations to assess her work very carefully before taking a position on the possible value of this research. In my view, and that of many British advocacy organisations, the work of the principle researcher should be approached with great caution.
In the UK she was one of the principle investigators of two large studies, funded in large part by the Department of Work and Pensions, into Graded Exercise Therapy and CBT. The lightening Process, also a British innovation, is essentially a refinement and extension of these techniques.
These studies have justified very limited treatment protocols which severely limit the options available to doctors, and the exclusion from practice of doctors who do not strictly follow these protocols.
Crucially this research has underpinned policies leading to severe limitations on access to medical treatment and financial/social support in Britain.(‘Saving’ the Department of Work and Pensions and Department of Health many millions of pounds and hence enhancing the appearance of the government’s budget).
The findings of theses studies are the key supports of the system of assessment,now implemented nationally, that has seen a dramatic reduction in the support of people with ME/CFS. This has led to many very sick people being reduced to truly pathetic circumstances. The studies have also justified very severe limitations on insurers recognition of this illness.
These studies, and their funding via the Department of Work and Pensions, caused a deep rift in patient advocacy organisations in Britain. this rift has seriously weakened the patient voice in public debate and hampered the effectiveness of attempts to encourage press recognition of the reality of this illness.
Even Action for ME, the only patient advocacy organisation which supported the studies, stated publicly that the results were ‘disappointing’. The study of the application of these techniques to very sick patients, those who were house/bed bound showed NO IMPROVEMENT at all, yet these are the people on whom the policy changes have been most severe.
The ME Association which was severely critical of the study design, made the following points.
1. The participants were selected on very loose criteria. They may or may not have had CFS/ME. The selection criteria, in as far as they used medical tests at all, were reliant on tests which excluded ( or appeared to exclude) other pathology.
2. The main study selected the least sick patients ie. people could attend the sessions and were well enough to participate in them, yet the results were deemed appropriate for all sufferers.
3.Those who were unable to complete the requirements of the treatments were subject to severe blame, and their ‘failure’ attributed to personal defects, ( hence justifying the punitive aspects of the policies justified by their findings.)
4. Those who were made worse by the treatment were counted as drop-outs and their results NOT included in study results.
The results for the drop outs ie those made worse by the treatment or who were unable physically to complete, were ignored. ie they simply didn’t figured in the reported results.
Of these criticism the one that has impacted most seriously on the well-being of patients and the discrediting of their advocates in both official and medical circles is this failure to include the results for those made worse by the treatment.
I very much hope that American patients evaluate the proposed study,and ask critical questions about the funding source and any possible vested interest the source may have in supporting such research BEFORE they find they have unwittingly imported some of the difficulties currently making the lives of CFS/ME patients in Britain so very discouraging.
For anyone thinking of trying the Lightning Process here are a few links to articles discussing positive and negative experiences plus some details of what the ‘process’ actually entails :
I’ve sent extensive comments to Val. There needs to be study done comparing a regime of rest and energy conservation to all this other stuff. Why is progress is considered in terms of increasing activity only, not actually getting over the illness? Since muscular activity makes it worse, this makes no sense. If you had an illness and Substance A made it worse, would all treatment efforts be directed at giving you Substance A, telling you to pretend it wasn’t making you worse, etc. etc? As an experience and expert NLP Practitioner, Master Practitioner and UKCP Accredited NLP psychotherapist, I know what it can and can’t do. Anyone who tells you , whether under the guise of NLP or GET, to keep on using your muscles and ignore the fact that its making you worse is not practicing ethically. Also it would be really good to study how the people who recovered – permanently, not into a months-later severe relapse – did differently from those who didn’t. If their illness really was ME, then even more worthwhile to study.
LP look to Lourdes at me. It is very offensive to severe ME patients know that you can not heal within 3 days. It’s quackery. It is time for objective measurement so that quacks will belong to the past.
Garrett wrote:”I have a feeling that the comment section of this article is being HEAVILY spammed by stakeholders and practitioners of mind/body programs like mickle, lighting amygdala ect…….. Don’t trust everything you read people (…) ”
Of those 4 programs you mentioned (I’ve looked into Gupta and Mickel some) which do you think is the best? I like the fact that Gupta has tapes which can be watched over and over if needed. I’m desperate. New supplements I took gave me a bad reaction, all the meds they’ve tried in the past few yrs for this horrible depression have just made me MORE agitated. having trouble sleeping and wake up feeling like crying some days…I just can’t live this way! I usually have a few tolerable days/wk, but the down days are rediculous. I can hardly do anything.
First of all, Thank You! to Phillida Bunkle for your excellent appraisal of the current situation in the UK and the pit falls of putting much store by the research being carried out by Esther Crawley and anyone belonging to that group.
A further point I would like to make is that the PACE Trials were preceded by the FINE Trials which were a complete and utter failure. Subsequently whether inadvertently or not the Pace trial was heavily altered and manipulated to provide the required results (as has been shown in many in depth reviews). To such an extent that the patients supposedly recovered at the end of the trial, still met the requirements to join at the beginning of the trial.
My point is that so much time, money (£5 million) and prestige has been invested in CBT and GET and it’s so deeply entrenched in policy that nothing will be allowed to impinge on that.
So my prediction for outcome of the Lightning Process Trial is that it will be pronounced a success but declared not as good as CBT and it will become part of the armoury of this group.
Another point worth making is concerning the title of the trial. SMILE is a title that’s very suggestive about the type of result required and it’s going to influence young minds before the trial even starts.
You know the old saying, that “everything works for somebody, but nothing works for everybody.” I think that’s true here. Frankly, it seems to me that these programs are mostly snake oil, particularly LP. Extreme medical claims require extraordinary proof. The readers of Health Rising are highly vulnerable to being hustled by unscrupulous marketers due to the nature of the illness and lack of reliable treatment. Caveat emptor, as always.
Wow, I’m pretty disappointed that even sufferers of ME/CFS are able to insinuate that those of us who have recovered using LP may not have had ME – we all know what a tough and horrific diagnosis this is so that’s pretty insulting.
I had ME for over 2 years, so I count myself one of the lucky ones that I found the LP early. I already felt like my life was over, had even contemplated suicide, I was all alone, had tried everything, had to stop working with no way of knowing how I’d pay the bills! My own consultant mentioned LP to me but, like so many of you, I was skeptical and it seemed a lot of money. Then I heard someone I knew had done it and achieved great results. When I went to see her about it I couldn’t even remember how to cut cheese, my brain fog was so bad….. The more I thought about the cost, I figured it’s actually cheaper than what you would pay per hour for a therapy session. Or, the cost of a holiday, which I was never going to be well enough to do again if something didn’t change!
So I went for it and it changed my life around, and yes, overnight!
I feel that those who haven’t tried it should be careful not to put it down so much as it’s an incredible thing and all those millions of people out there suffering ME will never get the opportunity I and many others have had, if this isn’t made public and available.
Since doing LP I’ve had 2 amazing jobs, just started my second with 3 weeks in New York. I’ve started my own business, been on many holidays, including skiing, zip-wiring, canoeing, gone back to boxing… Need I go on?
I’ve also recommended LP to others and seen it work wonders for them too. The whole point of it is that you are supported during those 3 days, so don’t worry about being able to focus/concentrate. After the first day you get some results so the second and third day are not a problem.
In no way, shape or form, is the LP telling us that we are creating our own pain or illness – it’s just teaching us how to control/remove it. There seems to have been some misunderstanding over the use of ‘duing’. Also, the follow up support you get is amazing and all included in the price.
You can’t put a price on your health – I know I did at first too, but I would pay time and time again what I paid to feel this well again.
I know that hardly anyone will find or read this, because anyone with ME, will never have the energy to get this far. However I must speak.
I took part in LP long ago when the recent revelations , such as the use of NLP was not revealed to participants. I found out about that shortly after the course, due to someone questioning me about it. I reacted suddenly and sharply in a very uncharacteristic manner, using unfamiliar phrasing, and yet could not fully recall having done so immediately afterwards!
This is classic NLP embedding.
If I had known about the use of NLP , I would not have taken part in LP.
I am breaking up this text for anyone with ME. It is easier to read this way.
A 3 day course was advertised, but after payment, we discovered that every morning was to be spent at home in preparation. Thus value for money was instantly eroded. Additionally extras were offered at the end of the course which all cost more, on top of the original huge fee! The preparation was to allow neurons to form and migrate ready for implementation at the point of the action of the core secret.
I had already worked successfully with neuroplasticity with young people, ie. Brain Gym, and I believe in it. After spotting this in the course, I checked with the course leader, who confirmed it. I looked up more online to get more of an understanding of its role in LP.
So often I see words suggesting that it is mind over matter, in LP, or even psychological.
I wish to say that neuroplasticity is neither. It is mind over matter, but not in the sense of ” getting a grip”!!!
All the time on the course itself seems to have been around the implanting of NLP responses to protect the core secret. This we paid for. The core secret takes very little time to learn or to action. It would be so easy to share, if preparation was also done, and it proves the strength of the NLP protection of the secret, that no one seems to have done that.
All ME people I am sure, would share this secret for free, to help all of us who are suffering greatly. I am not pleased about it.
Annie, NLP initially involved modeling certain hypnotic techniques used very effectively by the late Milton Erickson, M.D., and others. Frankly, it was (and still is) mostly a marketing gimmick, although various NLP techniques can be quite effective. You might be interested in the work of one of Dr. Erickson’s students, Dr. Ernest Rossi, a Ph.D. in clinical psychology. Dr. Rossi has written “Mind-Body Therapy: Methods of Ideodynamic Healing in Hypnosis”; “The Psychobiology of Mind-Body Healing”; and “The Psychobiology of Gene Expression”, among others. I believe he practices in California. If you feel that the mind-body approach might be beneficial for you, I urge you to find a hypnotherapist who specializes in the medical use of hypnosis (not the “stop smoking” guys) as a complementary (not an alternative) treatment. You’ll find this is at least as effective as these far more expensive and questionable courses and programs, does not have all the troublesome parts of these courses, and does not blame you if the treatment does not work out for you. At the very least, I think you’ll find that hypnosis shows you how to allow your body to have an exceptionally relaxing “time out” from discomfort.
I’m intrigued by everyone that says LP is a secret. There is a book written by Phil Parker that explains it all. So no secret. I was diagnosed with ME & FM in 2000 by a consultant specialising in ME. In 2006 I discovered LP I took the course later that year and was completely well after 10 days. My daughter was only 4 years old when I first got ill, after LP when she was 10 she said two amazing things to me. “I never knew you were such fun Mummy and I loved you when you were ill but I now know I didn’t know the real amazing you, I love the new you even more.”
If you are struggling with ME CFS OR FM how amazing would it be if you took a chance like I did and you too get your life back.
I know of other people that have also got well following the LP training, several of which I have suggested they do the course. I know it doesn’t work for everyone but do medications or even operations for other conditions always produce a positive outcome – no, so maybe this is why LP isn’t always going to work for 100% of people. Nothing is perfect for everyone but what if it does work for you as it did me, how wonderful would that be.
Cort can you block all this fake spam about LP? This is not from real patiënts and it is very insulting for the real sick people among us. It looks like a markting campagne to me. Be realistic get better in three days? pffff….
This seriously is genuine! I did the LP and haven’t looked back. After the three day course I was running around London and out-doing my friends energy-wise. I know it sounds crazy, but if you look into it and read what Phil says about how it works then you will see that it’s based on years of research and study. He goes to great lengths to explain how your brain works, which is the key.
Imagine it the other way around, how long does it normally take for someone to develop ME? For me, two or three days while I had a bad virus. Makes sense it can be the same the other way around, and if you look into it yourself you will see why.
The LP offers a life free from ME and anyone with it will take the time to look into it and see how it can free them. Or rather, how they can free themselves.
excuse me but I am a real person that had ME and it’s very insulting to be called a spammer. I came on here to share my story in good faith because this is supposed to be a forum for sharing information and ideas and entering into informed discussions, nowhere does it say ‘only people who are against the LP can comment’
As a person with ME/CFS i would have thought that you more than anyone would understand the struggle we all go through to get this illness recognised and taken seriously by both the medical profession or other people. To have you say that I didn’t have is insulting and actually quite upsetting when I think about all the times i had to go and ‘prove’ how ill i was at the doctors and at benefits assessments. What gives you the right to belittle the illness and struggle and pain that I had for years which destroyed my life? The fact that i got well does not make me a liar or a fake or in any way mean that my illness wasn’t real.
I’m not here to persuade you, i have no interest in whether you believe in the LP or not, that’s your prerogative, but I am not a liar.
It’s hard to know how to reply to you Gijs; I suspect that even if you were supplied with my medical records you would claim they were fake. If you do suffer from the horrible illness yourself do you not realise how it feels to be told you and your illness is not real?
ME took 6 years of my life, my family and I are so grateful I didn’t read all the dreadful things said about LP because it WAS LP that gave me my life and health back.
okay maybe I was wrong about the spam my excuse for that. LP would also help against MS that I believe when LP restore the white lesions in these patients. In ME there is no objective measurement. I do believe, however, that patients who claim to heal by LP are ill but they may have not the form of ME/ CFS I know.
I count myself lucky because although I had ME for going on 20 years, very severely affected mostly..I found the LP and it taught me how to get well and stay well. It showed me to be able to change my (very real!) symptoms and energy. When I was ill for so long, I never really thought I would find a way to get well, but I did, much to to the amazement of all who knew me. My doctor recommends the LP to others after seeing what it did for me.
I have been well for years now since the LP seminar. I know that for anyone reading the stories of fast results it might seem incredible but it does make sense when you follow the explanations carefully. And there is no ‘blame’ involved as far as I can see… only a chance to take some control.
Well done to all the others who have posted here with their stories of recovery!
Until there is some evidence that the LP folks had and have been cured of:
– reactivated infections such as EBV, HHV-6, etc.
– various nutritional deficiences
– abnormally low VO2 max
– abnormal cytokine profiles
– proven sleep issues
– ANS dysfunction
– abnormal SPECT or MRI brain scans
I will opt for the nice preacher in rural Louisiana for treatment over Phil Parker’s nonsense. I could stomach mild improvement but after 3 days normal VO2 max, normal immune functioning, normal SPECT scans and ANS dysfunction belongs at a circus sideshow not in “mainstream” medical dialogue.
My sister is 5 years older than me and through her teenage years she went through real difficulties emotionally, mentally and physically.. Battling with a severe eating disorder for many years, developing glandular fever and then ME. Seeing my sister struggle so horrifically was heartbreaking, when no amount of love and support or doctor knew how to make her better.
My early teenage years were filled with a learnt behavior of anorexia, depression, social anxiety and self-harm. I thought that is was a natural course of life.. I thought that’s just how life is and you didn’t have a choice in how you felt. Isolating myself, spiraling down, coping in the best way I knew how, with the resources I had.
My sisters ME went from bad to worse. Developing into seizures, being hospitalized and tube fed through her nose.
My Mum had done a little research into the Lightning Process and contacted Linda Morgan. My parents decided that if she was going to go; she would go down fighting and against all doctors wishes, after several long weeks in hospital, they discharged her.
Slumped in a wheelchair, sunglasses on, wrapped in blankets. There was no way I thought this was going to make my sister better.
But ‘lo and behold, the first day she was sitting up on her own, without needing the duvet or the sunglasses.
Day two she walked into the house supported just by crutches.
Day three, she was playing and chasing me round in the garden.
Two days after the process and we were in Portugal. It was my birthday; and I had a total meltdown. I didn’t know how this had happened and I was scared she would suddenly relapse.
A few weeks later, I joined Linda Morgan for the Lightning Process.. and I’ve not truly looked back until now. I am a truly happy, joyful, emotionally, mentally and physically healthy being. I am the best possible version of myself I didn’t think possible before.
I am so proud of my sister for being an amazing role model for me, now more than ever. I am so grateful to my parents for taking the leap and introducing the Lightning Process into our lives. I am forever grateful for Linda’s ongoing love, support and knowledge.
I lose words now.
I am forever indebted to Phil Parker, for his work, dedication, discovery and ongoing perseverance. His knowledge and love for what he does has changed my world and my entire perspective on it.
Five years on from such a difficult time; I am an NLP Practitioner and Life Coach thanks to the guidance and courses at Phil Parker’s Training Institute.
I am so excited for the future, for this beautiful new journey, for the lives I will go on to change with these amazing new resources and one day soon learning how to deliver the Lightning Process to those currently struggling and battling through. Helping others to be well and healthy, unlocking their fullest potential and becoming their absolute best!
Let i say with respect that i am very happy for every person who gets better!
Via Tom Kindlon:
Referenced comment of mine criticising the use of subjective outcome measures as primary outcomes in trials of the Lightning Process.
If for some reason you can’t read it there, it is also here:
After 19 years of severe CFS I was desperate to get better, half my life was already ruined by this wicked illness.
I attended a presentation on the LP by practitioner Ian Cleary. Despite the lack of real info regarding what the LP actually was I decided to attend wanting to find an answer to my problem. Spending thousands of dollars on treatments was not new to me!
I was perplexed by how simple the process is. I was already trained in NLP at the trainer level so none of it was new to me. In fact the first two days were mostly boring as it was all basic NLP stuff I already knew. I often feel a bit better on these kind of workshops and this one was no different.
But as usual afterwards felt like crap again despite using the “process” which is really nothing more than a pattern interrupt. I had already figured out similar mind tricks to help me access alternative neural pathways for energy but no matter how often I used them (including LP) the fatigue was still there.
One big issue I had with LP is that often the cognitive fatigue/fog was so bad it was impossible to do the process. My question is, how do you fix a broken brain with a broken brain? Kind of seems a bit ridiculous if you ask me. At times I would notice what LP calls a pit (eg. Duing fatigue) and then upon attempting the process would be too confused to remember the exact steps. Which leads me to believe that LP only works for a certain subset of ME/CFS.
Eventually I had to abandon the technique as it wasnt getting me anywhere. Later I found other modalities like EFT which proved more useful for me in disengaging mental/emotional stresses and their associated physical symptoms. Dietary changes have also helped, seems dairy and gluten are problematic.
I understand more than most the role of the unconscious mind over the body, and how it can ‘get it wrong’. I don’t recommend LP but I do recommend people address the possibility of any underlying subconscious programs around both illness and what it means to be well.
As a side note, perhaps a revealing one, when I told Ian I had tinnitus his was response to me was that “I was duing tinnitus”. Ridiculous! It’s a bit like going up to a blind person and saying “hey stop duing blindness”. Clearly no understanding of how the body works, and a lack of compassion also.
Finally in my class no one showed signs of significant recovery by the end of day 3. Lost contact with the participants so not sure what the long term outcome was. Am happy for those it has helped though.
Thanks for relating your experience. My experience with mindfulness type stuff is that the cognitive problems in ME/CFS make those practices more difficult, altho at least for me they’re certainly helpful. How to fix a broken brain with a broken brain indeed 🙂
The process sounds as if it provides meditational relief. If a person can concentrate on positive thought, they are likely to feel better. Increasing dopamine in the brain is an easy way to reduce overall pain. It is short lived. Lightning is not likely to alleviate problems associated with viral replication. I have extremely painful muscle contractions in my legs and believe they are caused by the virus interrupting neural transmission.
I have been through 6 months of Valcyte with relatively no improvement.
The drugs I take are Provigil, Nuvigil, Tramadol, Magnesium, olive leaf extract and Lysine.
When anxiety comes banging on my door, I have found that minimizing all aural and occular stimulation reduces the length of the episode.
I have used Amitriptyline for pain relief with excellent results.
I don’t use it because the “hangover” is too intense.
If the Lightning Method allows people to feel better, it hardly matters if the effect is placebo.
Give someone a rolled lettuce cigarette, tell them it’s Cannabis, seven out of ten will get high.
“Dr. I feel better when I do this”.
“Keep doing that”.
I have moderate to severe ME for the last 8 years. I have double-stranded coxsackie 3 RNA in my cells as well as EBV, HHV6 viruses in my body.
I can leave the house once a week for a few hours – more than that I crash. I can read a novel or short well spaced posts but no tech/contractual/insurance type forms. I cannot add up or subtract without using a calculator even though I had a very successful career for over 20 years in analytic research and development.
I have developed POTS, dizziness, severe tachycardia. I have no short term memory. I lose words, use the wrong words, and have many other cognitive issues.
My 83 year old parents function better than I do both physically and mentally.
I give you these details so that you understand the context of my comments:
My problem with the lightening process is 3 fold:
Firstly the cost – if I were to miraculously find a “cure” or even something that gave significant improvement to a group of people who had had to live as I and many others do, I would not be making it so expensive. In fact I would try to form a charitable foundation which would allow the treatment to be free to all who fit the criteria for expected success. So I am immediately suspicious that this is a scam because of the pricing.
Secondly because no subsetting of ME/CFS patients appears to have been done, difficult I know given a lack of consistent definition for our illness, I wonder if all or any of the people treated successfully did/do have some form of ME (perhaps as per the Canadian consensus criteria, with subsets of those with known viral issues/ clear immune disfunction as evidenced by medical tests, etc). Some analysis of patients coming in, using these subsets might make the anecdotal evidence here more credible.
Lastly, if this process is so radically transformative that it can also help those with MS, why not those with other illnesses too – why stop at known organically based diseases such as ME, and MS. Why not help those who have epilepsy, cancer, or other long term and/or chronic illnesses?? Why is that we only now are hearing about research into this process? I also find it interesting that the research is being underwritten by the NHS which has for the longest time seemed to believe that CBT, and GET are the only possible ways to cure what to their minds is a psychologically based illness. And that is the last reason I am so concerned about this “process” – that it will simply add fuel to the fire to fixed minded academic medical professionals who only review and accept the research that confirms their views. That the research will be framed to reflect the sponsors obvious bias. And that that will set us back another decade or so.
The body is designed to heal itself (cuts, colds, etc) so I guess its possible that our brain could help our immune system and body heal itself. The problem is that it minimizes the real suffering to just positive thinking. Basically “Its all in our head”
I did the LP weekend, bringing along a lawn chair because I was certain that otherwise it’d take all my concentration just to sit upright for more than 1-2 hours. But to my surprise I did the whole weekend sitting upright and learning, and able to do the nightly homework. I felt so free from my ME/CFS it was wonderful (though the technique didn’t help much on my constant headache).
My new-found freedom lasted a few weeks, then I went back to feeling about 90% of my previous ME/CFS. I know why: I couldn’t keep up the LP (visualisation) practice; though in a class environment I was forced to do it outloud, and repeatedly in my mind just to keep sitting upright. I’d try to restart it on my own occasionally but it needs to be done so many times initially to really set in (each day of the training, maybe I did the technique 50x). So a year later, I took the weekend again from a different trainer, but this time I didn’t get any lasting effect (tho’ I did have energy for the weekend, and no crash after).
A few years later I took the Gupta program, finding it similar enough to LP but less rigid, but I still lacked the individual discipline to do so many visualizations (maybe because I’d have to do so many iterations before seeing results), so then I took a 10 week Gupta group tele-coaching but still I never regained what I got from that initial LP weekend.
I eeked out the money for all this because I’ve never had such a relief in my 10 yrs of disabling ME/CFS as I had that initial LP training. I take it as a failure in my personal discipline. My doctor (who examined 4 others before and after LP and was impressed by their improvements) said that maybe I just have a different subtype of disease….but then why did it work for a few weeks?
What an interesting story, Anna. I’ve been lousy at visualization. How is your health now vs pre LP?