Lightning Strikes a CFS Patient

The Recovery/Recovering Stories : ME/CFS is heterogeneous disorder with many different subsets. None of the treatments in the Recovery/Recovering stories will fit all or even most patients.
In May of last year I received an e-mail from Berit Frivold a chronic fatigue syndrome (ME/CFS) patient whod been ill for 13 years. Like many people shed tried just about everything she could get her hands on and nothing had worked. She noted that

I have been sick for almost 13 years now, kicking and screaming all the way, always looking for a way out, trying this, that, and the other, and always planning to be on my feet again sometime next week or next month (but) after 13 years I am more sick than ever, in spite of all the positive thinking, can-do-attitude, research, treatments and specialists of different calibers and price ranges, and so on. Ive spent much of the years since 1995 sidelined and underground, severely limited by fatigue, pain, brainfog, headaches
Both she and her husband were extremely frustrated at the inability of the medical profession to help her doubly so because they were both part of it; shes a registered nurse (RN) and hes a cardiologist. Her husband noted his frustration in an e-mail.

Despite devoting my life to helping people overcoming sickness I felt completely impotent when faced with the disabling illness my wife was experiencing. I first referred her to a well respected Rheumatologist at our University Medical Center. He was very supportive and open-minded. He helped her with the sleep issues and then over the years tried a variety of analgesics and antidepressants."
Berits health, however, continued to worsen.

They went the alternative route trying acupuncture, allergy, kinesiology and with the help of the Internet various treatments such as elimination diets, different supplements, etc. At a chronic fatigue syndrome (ME/CFS) clinic in Torrance, Ca. after donating 26 vials of blood Berit went on thyroid replacement and a variety of supplements.

View attachment 507 Her husband, however, became alarmed when she was prescribed an array of strong anti-pathogenic drugs including two antibacterials (Septra, Rifampin), an antiviral (Amantadine) two antifungal pills, silver colloid IV infusion and IM immunoglobulin injections all at once. After doing a literature review and consulting with several infectious disease specialists he felt the treatment constituted a shot in the dark that could have significant potential side effects and they stopped the treatment.

Her search for a cure at this point was just about over managing the disease seemed to be the best she could hope for. Her participation in her familys life was at a nadir; shed been unable to attend a single of her sons school events over the past year.

She did have one last option though. She contacted me in May, 2008 because I was doing the Amygdala Retraining process and she was going to try a similar processOriginally from Norway, she reported that a nursing friend from school whod had severe ME/CFS for two decades stated that shed been cured. Digging a bit deeper she found more stories of cures. Berit decided to fly back to Norway and give it one last shot. She did the Lightning Process course on July 4th, 5th and 6th, 2008.

I next heard from her almost a year later. Her tone had changed considerably. She apologized for not following up on sooner but noted that

Having my health back is busy! I had so many things to catch up on, with my kids, with my house, with just enjoying feeling normal.
She state that shed gone into the process cautiously, not setting her sights too high. As someone with deep roots in the traditional medical profession she also had her share of skepticism and was somewhat surprised that she survived the evaluation round. (Patients must apply and be accepted for the Lightning Process). Nevertheless she reported that the process had worked for her very quickly:

I experienced a clear shift within the three day training. I continued using the techniques over the next days and weeks, and was amazed at the effect on things that I had felt quite hopeless about, like brainfog, blood sugar balance, dizziness, sensitivity issues etc.
Neural Plasticity What does she attribute her success to? Neural plasticity and neural retraining two processes that I believe have helped me greatly with the Amygdala Retraining process and other mindfulness techniques. This is all about creating new neurological pathways. Its a process that stroke victims use all the time to increase their functioning. She noted that

Underpinning the LP is an understanding of the theory of neuroplasticity and how it is possible to improve physiological function by re establishing better neurological patterns. For me this helped explain my cleared physiological symptoms and provided me with tools to influence the recovery process.
Doing the process has clearly been a life-changing event for her. It isnt for everyone Ive have heard from people who have not had this kind of success but for Berit the LP was the key that unlocked the door to health.
I have gotten my life back, and I cant stop being excited about it, celebrating every day. An added bonus is when people around me comment on it, and wonders what kind of amazing super-vitamins I am on, comments on me looking healthy, even ( dare I say ) younger"
Her husband concurred. This former nurse married to a cardiologist is now, of all things, training to be a Lightning Process practitioner. Her husband was skeptical whether she was up to the monthly flights to UK.

Traveling once a month from Loma Linda, CA to LAX and then to London and then attend all-day lectures first appeared like an impossible challenge, but have gone over like I could NEVER have imagined. After having gotten up at 5:30 AM in London, and traveled all day to Los Angeles then 2-3 hours by shuttle from the airport she has on more than one occasion come straight to a program at school (like a band-concert) and enjoyed it. (Last year she only came to one such program and I had to take her home exhausted before the program started).

Life is not perfect her husband noted that She still has some days with sub-optimal energy, but dont we all she does experience some jet-lag, and can over-do house cleaning etc. and drag some the next day. Berit now has normal problems, that healthy people everywhere do; her old energy and level of health are back. Her husband, of course, was very thankful:

Over the years I had resigned to the fact that the kids and I would have to plan our lives with very limited support from Berit. Now she is back in our lives and we love it!
Berit and her husband have opened a website on her experiences. When we were in contact last June she was training to become an LP practitioner. Judging from her site shes become one. For more on Berits story click here.

Comments

It's a striking (no pun intended) and encouraging story, Cort. The neural platicity and retraining stuff also sounds convincing.
Also, if it works for some, that's great as long as there is no deliberate exploitation of vulnerable people, and no deliberate attempts to mislead.

The problem with all of this is that it's totally anecdotal. Of the people whove recovered or improved using the LP, we don't know which CFS/ME category they fall into, that is if you take the view that there are several, with different pathologies.

There are aslo anecdotal claims of 85% success rates (that's from memory, so is an anecdotal anecdote). This is very difficult to prove or disprove either way, with no diagnostic tests.

I have done the LP myself without success. In fact I got worse, as my tiny little mind seemed to take it as a license to do more, which I did - an ex-triathlete doesn't need much encoragement!

It's all very interesting, and we have to explore all avenues. In doing so, we have to stick to reporting facts and finding the truth.
 
As far as I'm aware, there has been no independent study to check how well the Amygdala retraining systems work. We hear from people who have been cured, but if it really worked as well as they say, then surely a favorable blind trial study (or something - is that the right phrase?), independent and audited, would give them much more business?

Still, if it works, don't knock it. I have a feeling I'm far too much of a rebel to gain any benefit, myself.
 
I wonder if any of the people that have been 'cured' by LP have XMRV, or if it would be a non XMRV sub-set that benefited.

That would be cool an XMRV positive person that had been cured with LP.

Has LP ever been tried withHIV/AIDS? perhpas it lowers viral load.
 
<When we were in contact last June she was training to become an LP practitioner. Judging from her site she’s become one. >

This seems to be a very common occurence, which reduces the credibility of any enthusiasm for LP in my eyes. Added this, the fact that people are supposed to say they are well if they are doing LP properly. So saying you are well is part of the process. I have spoken to people who know people who have done LP, who say they are well (and seem to believe it) even though they are not.

Here are some stories for people not helped by LP and/or (now) skeptical about it:
http://www.sayer.abel.co.uk/LP.html

Here is one extract: "During the three sessions I was encouraged and persuaded to believe that there was nothing actually wrong with me and that I could 'coach' myself back to health. Phil told us that we were not really ill but had got trapped into a cycle of thinking and believing that we are ill which sustains itself. ie. if you concentrate on your symptoms all the time, then you're going to keep having them. You are instructed to stop thinking about your symptoms and to get on with "living the life you love". I was to think of myself as healthy and behave as if I was healthy, ignoring the symptoms and "getting on with it". I trusted in this advice and followed it completely, and as it turned out, to my severe detriment. My relapse was obviously caused by drastically overdoing it physically in the following five weeks."

and "Phil told us our symptoms were not evidence of anything sinister, could be ignored and that we would not damage ourselves by following the technique"

About testimonials:

"There are a lot of positive testimonials on the website. I have not studied them all but a lot of them have been written soon after completing the training, usually within several months. I must admit that I too would have written a glowing testimonial during the five weeks after because I was still 'geed up' by the process. Also, because the process instructs you to only concentrate on the positive, it is a very convenient method of filtering out any negative and adverse comments. For instance, Phil asked us to email him a few weeks after our training with a progress report but he specifically told us to only mention the positive things that had happened to us and not to mention any negative feelings, symptoms or experiences we'd had, obviously with the laudable aim of concentrating our minds on the positive. It also has the convenient benefit of providing purely positive testimonials for the LP"
 
Wow...after reading the above, this sounds like a hoax. "think to yourself that you are healthy, ignoring the symptoms and getting on with it." SOUNDS crazy. So, what happens to all of our viruses and pacing?

I was once told by a church that I had committed a sin in my former life and I had carried that negativity over into my new life. I had oil poured on my head and folks were chanting around me. I never forgot it as I practically ran out of there.

Sometimes certain treatments seem like brainwashing. I will have to look into this and see just what "this" is.
 
What I think is happening is that a certain subset of patients do improve with this type of work; ie. with amygdala retraining, LP. These approaches certainly have helped me - although I'm a very, very slow responder - but I must say the impact continues to grow. I do find that as I get calmer - I am in the system aroused subset - my health and well being have substantially improved.

I think of my case of CFS as akin to the idea of 'nervous exhaustion' in the which the system is so depleted and so 'over-aroused' that it overreacts to any kind of negative stimuli; this, of course, includes many things other than thoughts about one's symptoms - it's everything. Any kind of mild stressor can cause my body to heave up' and my muscles to tighten, my breathing to become restricted - with fatigue and pain probably being givens at that point. Calming it down and giving it a place to rest by dealing with the triggers is very helpful.

I hope she can jump in a explain more about it. My feeling is that any one legitimate treatment will probably work VERY .well for some people, moderately well for others and just not effect others. I've heard great success stories from LP and Amygdala and moderate success stories and there are negative success stories. The ones that get the press, are, of course the success stories.

A Key Aspect - I believe that its absolutely key in all of these to not overdo it. Mindfulness type techniques work best for me, ironically, when I'm healthier, as to all treatments. When I've done too much and have crashed they there're like trying to ride a dragon or harness the whirlwind; things are too out of whack for approaches like these to have a significant effect. In fact I reduced my level of physical activity DRAMATICALLY once I started AR two years ago because it allowed me to step and see what effects it had on my body. I had basically become attuned to an overworked, stressed-out state. It wasn't that I was doing a lot of exercise; virtually nothing of what I was doing would I have termed exercise before I got ill but I nevertheless still engaged in too much physical activity. I still often tried to push through the pain and fatigue; I took a deep breath and pushed forward. Now I tend to take a deep breath and try to calm down and rest and then slide forward :)

Stepping Back Is Hard. I remember one person who did the AR and it worked like a charm it at first; she was a great responder; she stopped all her meds and she was great for about three weeks and then she pushed too hard and she crashed and she blamed the AR for that! She missed the fact that she'd done extremely well for awhilel; I wish I had had such a positive reaction. In any case not overdoing it - not taxing your physical system too much - is, I think, vital for any therapy.

I've actually not done a lot of the NLP of amygdala retraining over the years; I find the process aspect of it difficult and not particularly intuitive, although recently it's been much more beneficial. It was stepping back and watching my body erupt that was the key and then using techniques to calm it down that's been, very slowly, helpful.

With regards studies; they're difficult and often expensive to do. Ashok Gupta did do a small not particularly statistically rigorous study and about a year ago he was trying to find funding. Few treatment studies have been done. Dr. Cheney has never done a treatment study in the 25 years he's been practicing. Neither has Dr. Peterson. Dr. Lerner has and Dr. Chia has, I believe. Studies are great but I think we'll have to mostly rely on anecdotal reports.
 
Apparently there is a pilot study funded to begin in September 2010 that has been awarded 164,000 by the Linbury Trust and the Ashden Trust.
Press release here
http://www.afme.org.uk/res/img/resources/RCT on LP March 2.pdf

Orla's link is very revealing, however I'm interested to follow this study and see where it goes, but as we know, studies need to stand up to scrutiny and be transparent to be of worth.
 
I had an acupuncturist who told me a year ago to never say I am ill. "If you tell yourself and others that, your body will hear it and you will remain ill. Keep telling yourself that you are well." I tried practicing this and became extremely depressed and started crying. I stopped going to her. I find that when I deny my reality, I end up sicker and when I accept that I am ill, I get better...so quite the opposite of what this process teaches.

I feel that we have to respect what our bodies are telling us and listen to that instead of denying our reality. I would feel like I was hanging out with all the nay sayers who tell me CFS is in my head.
 
Hi all, I understand that we have to rely on testimonials for treatments to some extent, but LP is different from many other treatments. The problem with LP testimonials is that they are not reliable. It is part of the process to say you are better (even if you don't feel better). This is another exmple I got from another source:

"Early on during the first session trainees are told that they must not say 'I have ME/CFS' - they are told they are 'doing ME/CFS'. I have no problem with this but remember this when watching videos and the people are asked on film "Do you have ME now?" People are expected to say 'No' - or they would be told they are being negative, something you are not allowed to be. "

"I would like to point out from our experience that trainees are only allowed to say positive things. So when the trainee tells the camera all the things they have done the day before, they are not allowed to say anything negative. For example someone may have walked half a mile, but they are stopped from saying how they may have struggled while doing this, or stopped for rests at every bench on the way."

I have heard this information from many different sources. To me LP is expensive re-branded NLP and Stop Technique.

As well as the problem above, many people feel guilty if it doesn't work for them as they are told they are not doing it properly. So people will sometimes not come forward if they think it didn't work. In the UK also there seemed to be a problem basically with people feeling pressurised (I am putting it nicely) into not speaking out. In the UK It was even difficult to get information on what was acutally involved, but I got a description of it (both from someone who thought it was crap, and the same info from someone who thought it was great, so pretty reliable I think. If I get a chance I will look for the info and post it).

Something worth looking at is the application form (you have to be deemed suitable to do the course). The form seems the same (possibly identical but I haven't compared properly yet) to the UK ones. If you look at it you can see that they would select as suitable more impressionable people who are likely to believe what they are told, rather than more questioning people. These people are probably less likely to speak out, even if they feel it didn't work. Also it would select people who thought their illness had a psycho-social basis, or people with psycho-social problems.

Orla
 
Another source:

http://www.tymestrust.org/pdfs/brief2008-1.pdf (last page)

"I did the Lightning Process last
September, and made some reasonable
progress (not recovery), but found it
hard to sustain, and have over the last 2
months relapsed very badly, and am now
more unwell than I have ever been.

I feel that the technique does not recognise
the differences in types of ME and
uses the same approach to fit all. I found
that the can do approach encouraged
me to push through instead of pace (I
was told I would no longer need to pace
myself) and eventually led to a severe
crash. I wanted to warn others to be very
careful if they are thinking of using this
approach.
 
Sorry folks, but this discussion has hit my buttons. Apologies in advance if I upset anyone (I will try very hard not to).

First, Cort, due respect to your initial blog. As I said before, we need to remain open, objective, all that good stuff. If something works for some lets look at it.

Someone (Robin?) mentionioned a problem about marketing - abso (f***ing) lutely!!!!!!! (sorry, I've slipped into Endlish (the language of Endland). Please refer to Coutrygirl for translation, PS it's all her fault). Take a look at Phil Parkers website - International Rugby players pushing the product 9turns out it's Austin Healey's wife who has/had ME, not Austin). Videos only of people making positive statements about LP, nothing to balance this.

Has it been tried with HIV? Of course not, you would be out of th eland of anecdotes with that - it's way too measurable. I asked Phil if he had done this yet, and he said "no, but maybe we should". Phil, if you want to carry on making millions, don't do it, mate.

They are, however, running a study with MS. Phil, you're safe here, very complex illness with no diagnostic test. Keep those m's rolling in, mate.

Check out Phil's presentation about ME & XMRV (if it's still up there. It demonstrates a total lack of understanding and his calculating way of deceiving, eg. "maybe we should test people who've recovered to see if they still have the virus?" (If you need me to spell that out, let me know).

Finally, the big button. Kids with ME, and the Lightning Process. OK little Jhonnie, so you don't feel too good. Well, we're going to sort all that out for you. You'll be lying on the bottom of the pool in no time. Sure, some kids hate school and get all kinds of psychosomatic problems, but others love school, have loads of mates, and still get sick. THIS SEEMS TO BE VERY DANGEROUS TERRITORY TO ME. IT MIGHT HELP SOME, BUT IT MIGHT CRIPPLE SOME OTHERS. I WILL BE MAKING CONTACT WITH THISE INVOLVED TO MAKE SURE THIS DOESN'T HAPPEN.

Have I upset anyone?

If I stop posting, you'll know why.

Lots of love to all (oh no, now I've done it, Frank).
 
I'm very intrigued by this post, and don't doubt that some people are helped by this type of therapy.

I believe we still have a lot to learn about how our brains handle stress and are modified by stress. I think it's exciting that our old brains can "learn new tricks." That will benefit us all in the long run. However, I think the amount of misinformation that gets included with all the hype around this and other similar processes is divisive and even dangerous.

From Berit's website:
http://living-a-life-you-love.com/living-a-life-you-love.com/What_is_Chronic_Fatigue_Syndrome.html

She quotes information from the CDC and does not use the Canadian criteria. This doesn't sound like my illness, and it sounds a lot like the psychological explanation of CFS.

A Theory of Chronic Fatigue Syndrome that offer Hope of Full Recovery:
The Lightning Process is designed on the theory that people who experience a significant physiologic stress (like a severe infection or significant emotional trauma) may for some unknown reason experience of a prolonged state of overwhelmedness which in some way profoundly affects their psycho-neuro-immunology. We have nearly all experienced the profound fatigue that can be associated with a serious case of the flue or gastro-enteritis. Those of us who have been served some devastating news (like news of the sudden death of a very close friend or relative) have also experienced how devastating news can instantly zap you of physical and mental energy. For some unknown reason some of us are unable to navigate out of this overwhelming fatigue and end up with prolonged, disabling effects that completely destroy our lives.

The Lightning Process aims to reprogram the brain. Well aware of the enormous potential of the brain to reorganize and compensate for functional losses (neuroplasticity) the Lightning Process employs a variety of techniques to give the patients tools to re-direct physiological and mental energy which often results in dramatic improvements. After only 3 intensive days most patients experience a recovery they could only dream about. The effects are often so dramatic that they may appear magical, but there is no supernatural element to the recovery - but well researched and proven techniques that redirect physiological energy to restore health. It may take several weeks to months to rebuild physical endurance which have suffered from months to years of sedentary life-style. The brain-fog and hypersensitivity to sound and light (which some experience) was, however, in my case dramatically improved in a matter of days.
To benefit from this form of training you need to:
1. Have been examined by a physician and found to have the diagnosis of CFS/CFIDS/ME (i.e. no severe anemia, severe hypothyroidism, severe depression or other potentially curable conditions)

2. You have to be highly motivated - as the training requires you to actively use the techniques you are taught to achieve recovery.
Would we be screened out if we have active viral / bacterial infections that are "potentially curable"?

I think "highly motivated" will eliminate those of us who are very ill and could not even attend such a rigorous program to begin with, or who don't have the mental stamina to "actively use the techniques."

What does the Lightning Process do?
Key components of the training include participants learning exactly how their brain and body have become trapped in a number of damaging unconscious responses, which have blighted their health and stunted their lives. Then using a powerful combination of techniques uniquely developed using the philosophies and research of NLP, osteopathy, self hypnosis and life coaching, they will be extensively trained as to how to successfully replace those old unhelpful responses and start to regain their health, sense of self and their future.
Still, I'm intrigued and would like to see more good science looking into how our brains can change and heal. I think all of us who are ill can benefit by techniques that help us reduce stress, and help our brains remember how to calm themselves. However . . . what's with the "you must believe and not doubt in your heart" aspect of it? It reminds me of being told that I wasn't healed when prayed for because I didn't have enough faith. This kind of back-handed criticism harms us all.

I'm all for good science. This is not good science.
 
Dear Gracenote, You have a calming and nonabrasive way of giving a reality check when topics can send one into hyperexcitability.
Not in anyway, Cort's intent on sharing this story of anothers path to recovery. Being one who has experienced the connection of body, mind and spirit, since pre-illness. Seeing the power of 'Grace' in my life, knowing that I have been carried beyond my limitations to a place of inner peace beyond illness, I know all things are possible. Yet, having exhausted all financial means of trying new txs and/or discoveries, I am drawn to the only cost that I can afford= paying attention.
Still I am interested in science, new discoveries, and noncoventional or alternative txs......even those attempting stem cell therapies. For several years, I went to the Cheney clinic, tried with true effort to improve and heal. Then lost insurance, means to continue there and mostly returned to the place that my heart never left....that place of hope, that we all have this lifegift without mistake and finding purpose and meaning is accessible to everybody. Recalling Sidhartha and his reaction to suffering it tends to lead one to go within to find an answer .Sue C
 
The inclusion of NLP techniques caught my eye. I can't find it again but I know it is here in the comments. I have practiced most of the techniques of NLP for about 28 years. I've found that they can be helpful in making changes to personal history, feeling nature, and phobias but I would be leery of using anything that states positive thinking will create a cure. In the early eighties their were folks that practiced this idea but I know a couple of people who died of aids after going off their meds because they were "well". I am always suspicious when the victim gets the blame for their own illness. I use some pain meditations that I learned during my courses with Bandler and Grinder, the NLP creators. But even with the skills I have in meditation, guided imagery, and hypnosis I haven't been able to think myself well, or completely or permanently out of pain. I have found that breathing exercises will stop the sympathetic nervous system's fight or flight response.

I think it is wonderful that Berit Frivold has had success.
After trying so many things to get better I have, slowly, come to believe that illness is
a legitimate state of being. In fact, for me, I think it is an important part of my learning. And I believe, after 24 years, that perhaps I am supposed to be ill. That is not to say I deserve to be sick or some cosmic cruelty is being played out in my Life. As chronically ill and sicker then ever I have the privileged of deepening my relationship with the divine and learning the depths of my own character, good and bad.

Even though hope springs eternal I am much more comfortable when I just belly up and float through all of this. I won't stop praying for help but I mostly pray for peace and acceptance. (There was that one prayer today for a Nissan Cube, but that's another....lol) When I leave the outcome up to my God I can watch the day's come and go with a contentment that I am very very grateful to have been given.

Thanks for your work Cort and for all of you who write here. It helps me.

Blessings.
 
RevDay's comments really resonate with me. I think I'm just thankful to feel some peace in my body at times and even my mind at times after so many years of none. That is like a revelation; being able to withstand the rigors of the everyday world and maintain those feelings of wellness is at least in the quite distant future but for now it's nice to have. Straining for health - trying to think positively - is a recipe for failure because it initiates tension at the very beginning of the process - tension that in the CFS patient will drive them down. There's no difference from that than bulling your way through things. I do think that you can connect with feelings of wellness, however, and slowly enlarge them.
 
Some quick observations. There is no question some people have been helped by LP, some are neutral, and some have ended up worse off after a later over-exertion and crash. Therefore, something 'real' and biological is going on with the LP, and Gupta and the use of NLP. I have had success myself using NLP, to get off benzodiazapine (was dependent for 8 years for sleep). So what is going on with LP? Well, maybe there are three effects.

1. For the person who has a stress hormone-sensitive chronic virus, such as herpes, learning how to change their thinking and creating new calming neural pathways may actually lower herpes activity and thus provide a dramatic change in health. One study showed that elevated hormones increase the activity of one herpes bug between 9X and 18X. That is a LOT of change from a LITTLE bit of stress hormone (cortisol, etc.).

2. For the person who has CFS due to some cause other than a stress-hormone-sensitive virus like herpes, LP will do exactly nothing for them.

3. For the Type-A person who tends to overdo things and has the stress-sensitive virus, they will improve but eventually will, well, overdo things, and they then quickly become depleted and may even have some injury from that.

I believe we need a more complete and correct model of CFS before passing judgment on LP or Gupta or methods like that, and meanwhile a BIG warning label for those types of therapies that if you can not pace yourself and self-monitor, don't even think about these therapies.
 
Ditto to what Kurt said. I was also thinking there may some connection to healing from adrenal fatigue by lessening stress and letting the adrenals rest and recover. I could see this happening over a long period of time, but not quickly though.

Kurt's theory about stress increasing herpes virus activity would cover a quick recovery.
 
Sure, it's all very plausible. The negative comments here are generally not about why NLP/LP/stress-reduction/etc. doesn't work. They are about the general discomfort that one gets through direct contact with Phil Parker's organisation. Robin made the point about marketing, also pyramid selling and lack of science and rigour to any claims made. ME is so complex and undefinable, you can get away with anything and make easy money.

Their approach is one size fits all, and my experience is that the practitioners, whilst many of them claim to have recovered from ME, do not understand the condition.
 
Here in the UK, The lightning process costs about 600 for a course.
For your 600 you get about 6 one-hour training sessions (100 per session), and there are about 10 people on each course.
Allow me to do the maths for you:
10 people on each course paying 100 each per one-hour session gives the trainers 1000 per session...
Fit just 4 one-hour sessions in per day with 4 different training groups = 4000 per day...
4000 per day, for a 5-day week, is 20000 per week = 86,666 per month
= 1,040,000 (just over one million pounds) a year for each individual 'trainer'.
For those of you in the USA, i think that's about 1.5 million dollars, per trainer, per year.

You can work out why so many trainers promote the lightning process with such enthusiasm...
One training group in the UK has an enormous beautiful house in the middle of the English rural countryside:
http://www.swallowsretreatanswersme.co.uk/gallery/

I can not understand how these people can justify charging so much, to people who are too ill to work, when it allows them to afford such an enormous mansion with vast beautiful gardens. To me, it appears unfair and exploitative, and that it is feeding on people's misfortune.

Buyer, please beware of marketing techniques and sales spiel.
 
I understand that some people have been helped significantly by the Lightning Process, so we must all be careful not to dismiss their experiences, or invalidate their personal journeys.
But it does anger me when the Lightning Process is advertised as a cure for ME, when there has been no independent research on it.

Locally to me, some people have had a positive experience, some no change, and some a negative experience.
There doesn't seem to be the evidence within my local support group to show that there's an 80% success rate, and even if there was, the patients would be self-selecting anyway... so only those feeling motivated, energised and well enough (not to mention rich enough), would be able to attend the courses, and this automatically excludes many who are severely or moderately ill, or those who know, through their own experiences of the illness, that the course just would not help them, but would be more likely to cause a relapse.


If some people have been helped by the Lightning Process, then I'm very happy for them. It is 500 well spent.
I like the idea of the plastic brain, and re-routing circuitry, but I am quite sceptical about how this could really help a biological illness that affects the brain. A stroke involves localised damage to the brain, and so this theory would suggest that people with ME only have localised damage to the brain. Is this born out by MRI scans?


The Lightning Process is based on NLP and teaches you to 'stop' your negative thoughts, and to replace them with some words such as 'i am now feeling better, and i move forwards with energy and positivity' (these aren't the exact words)...
it's as simple as that... it's a very simple idea, but you just have to keep repeating the mantra.
The process is based on NLP and hypnosis.


However, as testimonies explain, the Lightning Process can be dangerous for some people, and patients are not given all the facts or warned of the dangers. People are simply told that they are too focused on negative symptoms. If someone does experience a worsening of symptoms during the training, then they are told to ignore those symptoms. They are told that they are not carrying out the training correctly. This process goes against everything we have learnt with 'pacing', where we learn to recognise our symptoms, and work with them in order to allow an improvement in our health. 'Pacing' is intuitive and involves what everybody has always known about their bodies... that when we are exhausted, we slow down and rest.

The claims that The Lightning Process makes regarding the success rate is unsubstantiated and is not independently verified, nor has a medical trial been carried out. For this reason, these claims can be dangerous for people with ME
People with ME are desperate to get well and so we are vulnerable... we will sometimes try things out without fully investigating them.
Most of us haven't got the energy to do our own research to fully understand the Lightning Process, but might accept what the Lightning Process propaganda machine tells us, without further investigation.
The Lightning Process is a private, money making business, so it is in their interest to market it in the most positive light they can. Each trainer will tell us about their wonderful success story, and how they were cured, but this is not a medical treatment, and should not be confused with a medical treatment which has undergone rigorous scientific trials. It is simply a training course, with no guaranteed outcome at the end of it.

I wouldn't have a problem with the lightning process course taking people's money if the information was transparent and upfront, but it isn't. Patients are not warned of the dangers or of possible negative consequences. Only the positive stories are reported on. We have had to dig deeper for the negative stories which we have found.


There are not any independent statistics which show how many people it helps.
If it doesn't help an individual, then they maybe left with worsening symptoms, feeling more ill, and 500 worse off.
500 is a serious amount of money for someone not able to work, especially if their only income is from social security benefits.

My main problem with it, is that the marketers do not seem to accept that a significant proportion of customers are left worse off.
It's not just that it doesn't work for some people, but some people are made more ill, and are left 500 out of pocket.
The marketers do not want to engage with this fact, and they do not offer a money-back guarantee, which might alleviate much of the suspicion and hostility.

The Lightning Process reminds me of faith-healing... it appears to have very similar properties... you must 'believe' that you are no longer ill, and you must not entertain any evidence of illness... you must move forwards with a single-minded renewed 'faith' in your abilities and health... It purely involves focusing the mind on a certain aspect of belief (a wellness belief)... I'm sure that faith-healing works for some people... I accept that the brain and the body are interconnected, but it is dangerous not to give people all the information about the Process, and to label people as failures when it does not work for them. There is no scientific research to show how this healing process might work; trainees are just told that they are no longer ill, and can no longer believe that they are ill. It's based on faith, and it attempts to over-ride the patient's existing understanding about their illness.


The suggested success rate of 80% simply can not be believed or taken at face value without an independent evaluation. It is simply meaningless. What is it based on? Is it based on successful outcomes a year after the initial course? Or is it based on successful outcomes on the day of the course? Does it include people who drop out of the course or are drop-outs excluded from the failure figures? If people do not attend a follow up session, are they included in the figures? We just don't know.


Finally, patients given a diagnosis of ME/CFS do not all necessarily have one single disease process.
As we know, some CFS patients have a loosely defined 'fatigue', whereas other patients have other symptoms as well, such as cognitive problems, memory loss, swollen lymph glands, migraines, neurological problems etc. Not to mention 'post-exertional malaise!'
The Lightning Process ignores post-exertional malaise as a symptom, so maybe it is only helpful for other fatigue illnesses, other than ME.


The questions to be asked by an independent study are:
For the success rate figures, how long are the patients followed up after the course? (one day, one week, or a year?)
How many of the patients who embark on the course have an official diagnosis of ME? And which diagnostic criteria was used?
Are the patients who drop out of the course, before they complete it, included in the figures as 'unsuccessful', or are they left out of the figures altogether?
What percentage of ME patients are willing and able to embark on the course in the first place?
 
I could say a lot about this subject - not necessarily all bad. But one thing to consider. Is it at all likely that sufficient neural plasticity could take place in three days never mind the half day after which some claim to have been cured. At least Gupta requires an extended period for these supposed changes to take place. Also, I would imagine that if I was cured I would consider becoming a practitioner, but the very fact that many 'graduates' become trainers must cast some doubt on their testimony.

My main concern is that 'cures' like these grab the headlines and it now appears, research money. Fair enough except there has not been and will not be any robust and impartial research on this therapy; not while fatigue is the common denominator, patients are self selecting and then screened for participation, and success is measured subjectively from a cohort who are banned from thinking negatively.

I'm very open to mind/body interventions - but too much here doesn't stack up.
 
As for the study that is being carried out on children in the UK, I just do not understand how they can get ethical approval for it. The children will be told that they are going to do a course which will make them better. So they will eagerly embark on the course but without any meaningful insight into the nature of the process. This will, in effect, be coercion because the children will not be mature enough tomake their own decisions, but will simply be told to undertake the course by either their doctors or parents. When they are on the course they will be told that they are not really ill, and must not think about, or talk about their illness. They will be told that there is nothing wrong with them and they must never again say that they are feeling ill, no matter how they may be feeling. If they begin to feel their symptoms worsening, then they will be told to never mention it again, and that they are failing the course, and that they are thinking badly (i.e. they are bad children). They will be taught to ignore their natural body processes and to lie about how they are feeling. Finally, when the course hasn't worked for them, and they experience a worsening of symptoms, they will be told it is because they didn't follow the instructions properly and that they are failures. This will make them believe that they are bad children. The trainers will not have any medical training, or training in medical psychology and so will the children have proper protection from exploitation? The children will be told not to recognise their symptoms. They will not be allowed to slow down, as any normal person would respond to feeling fatigued and exhausted. Finally, as the children crash into the dark depths of a relapse, their parents will be accused of Munchhausen's, and the children will be accused of being fakers, malingerers, and school phobics, and dragged off to a care home where they will suffer even more degradation of their human rights, and their health. This may sound like an outrageous and unlikely representation of what will happen, but it has happened time and time again with people with ME. We have been dragged into psychiatric wards, parents have been accused of Munchausen's, and children are accused of being school phobic and of having psychiatric issues. These questionable techniques (The Lightning Process is not a clinically proven treatment) seem to only encourage this sort of abusive behaviour by the medical profession. It almost seems like a Nazi (and I don't use the word lightly) approach to medicine to put children on this course: disallow the disability; don't recognise or respond to the needs of the child patient; condemn the patient as a failure and second rate citizen; a survival of the fittest mentality; disabled people are considered second-rate citizens (illness and disability is explicitly regarded as a failure, and the children will be told this!) It seems to me that children run a serious risk of being psychologically damaged by being put through this sort of abuse.

The Lightning Process is not a medical treatment, and neither has it been studied medically or scientifically, and I think that we, on the phoenix rising forums should campaign to get this children's study stopped before it does severe damage to these children. Doing a study on volunteer adults, who have all of the information about it, is one thing, but to manipulate children is something else altogether.
 
After over a year of intense psychotherapy with a PhD., I can now let the stressors in my life run off my back like water. No more am I relapsed by the problems that very close family members dump on me and the way they treat me. The Dr. taught me a real tool with which to deal with events that used to conjure up in me a variety of emotions that would spiral out of control. Stress is now a former word in my vocabulary. Has this freed up energy? You bet! Cured my P.O.T.S.? No way. Helped my Vo2 Max. Yeah, right. I wish.
 
if the reviews that have been posted are true then this is a big scam. 600 pounds for positive affirmations is a bit too much in my humble opinion!
btw, there are wonderful affirmation videos on youtube for free. i really like this one here :
 
Caledonia - good comment about adrenal stress being reduced with LP, I would add that as a fourth category in my earlier list. Those people would be the ones who have small noticeable improvements but no significant remission of their ME/CFS.

Bob - have you ever seen a successful medical doctor's house in the US? I realize that the idea of LP practitioners getting wealthy from this is a bit upsetting, but what about all the doctors (with MDs) who charge huge sums for treatments that generally do not work as well as advertised. Or the people who pay hundreds of thousands of $$ for traditional medical procedures that eventually kill them through side-effects? I agree that the claims of the LP practitioners and their methods deserve to be questioned. Particularly their seeming lack of respect for the research base and known pathologies of ME/CFS. But earning money off of very sick people, that is capitalism, maybe that is more obvious in the US.
 

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