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

Good point Kurt - think of all the doctors so many of us have walked away from with empty pockets with little to show for. My god what a money hole the medical profession has been for us.

I was thinking of this scenario : Dr. Light believes that the receptors, not the muscles but the receptor that monitor muscle health are wacko in this disorder. His study suggest that they may be reporting to the brain that the muscles are suffering tremendous damage. The brain may be doing what it can to stop that damage - it 's sending pain and fatigue signals to us to stop using those muscles. But its not only muscle receptors; other receptors as well appear to be in this heightened state.

I think this fits so well with the science because we while researchers have found interesting abnormalities nothing yet can really explain, I don't think, the problems in CFS. But the idea that the sensory mechanisms inside the body are screwed up fits in lots of ways; this is how ME/CFS patients could feel so lousy and have such poor quality of life while standard medical tests don't seem to show any obvious abnormalities. It fits so well the idea of central sensitivity as well.

Also, if the problem lies in the brain sending out pain and fatigue messages (I believe pain sensations are produced in the brain) it's possible that we could counteract them; that we could start to dull the brain's response to all these messages from the sensors in our body by directly interfering with those messages. We know that pain, for instance, can be modulated by mindfulness techniques.
 
I'm struggling with that, Cort.

Somebody with AIDS has a secondary herpes infection - cause is HIV, treatment is antivirals.

Somebody with CFS has secondary herpes infection - root cause is unknown, mechanism is something to do with body's sensory systems being screwed, treatment is NLP or something similar.

Sure, the same symptoms can have different root causes, but the difference here is that we understand one of the above, but not the other.

Trying to find treatments is fine, but conjecture about what's happening due to the inadequacy of our science and our thinking risks taking us down the wrong paths. We need to find new ways of thinking and new ways of discovering the truth about this condition. The old ways have failed us for a long time.
 
Brown-eyed Girl;bt1158 said:
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.
Brown Eyed Girl

Can you elaborate on this tool? I could do with fewer worries and a little more energy!
 
fingers;bt1175 said:
Somebody with CFS has secondary herpes infection - root cause is unknown, mechanism is something to do with body's sensory systems being screwed, treatment is NLP or something similar.
It seems to me that some of us might be talking at cross-purposes in these discussions and coming at it all from different angles...
Maybe some of us are talking about ME, which involves associated neurological complications, and some of us are talking about CFS, where fatigue is the main issue...
I think that if fatigue is the main problem, then people might be able to engage with the Lightning Process and gain benefit from it, but if there are other neurological issues, such as concentration problems, headaches, short term memory problems and memory loss, light and noise sensitivity, and the feeling of an inflamed, 'grating' brain, then The Lightning Process simply can not be engaged with, and people with these sort of symptoms just know that The Lightning Process would not work for them, which is why we get so upset by the claims which are made... the idea that these symptoms can be over-come with some positive thinking is just alien to us... I mean, you wouldn't suggest to someone at the end stages of AIDS that a bit of positive thinking would sort them out! The whole idea of The Lightning Process just seems absolutely ridiculous, and insulting to those of us with neurological complications.
I'm sure it's partly why some of us are expressing such strong opinions about the Lightning Process... And maybe there is a lack of understand between us all that there can be differences between us and our symptoms.
I believe that this has been the problem with ME research and treatment from the beginning... a mixing up of different illnesses/symptoms.
I my opinion, we're never going to get anywhere until ME & CFS are separated and treated separately for both treatment and research purposes.
Lumping the diseases into one group just confuses the hell out of everyone, which is just where the vested interests want us to be... divide and conquer... or in this case, combine and conquer, as combining different diseases sets patients against each other, confuses everyone and muddles the issues that need to be dealt with.
 
Kurt;bt1160 said:
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.
I take you point Kurt... It's just that in the UK we're used to getting our medical treatment for free at the point of service (i.e. we pay for it in our taxes)... So when someone comes along with a non-medical 'treatment' with wild claims of a cure, and charging such a large fee for a very simple course, then I think that we are right to be suspicious of it, and to question it fully. We don't have private medical insurance in the UK, and we receive about 90 a week to live on if we are on social security benefits... so 500 is a lot of money... it's more than a month's income. And The Lightning Process is not a proven medical treatment, so it's not in the same category as an expensive medical procedure.
 
Bob;bt1181 said:
It seems like some of us are talking about ME in this discussion, where there are associated neurological complications, and some of us are talking about CFS, where fatigue is the main issue...
I'm sure it's partly why some of us are expressing such strong opinions about the Lightning Process... some of us are talking at cross-purposes... coming at it from different angles...
This has been the problem with ME research from the begining...
We're never going to get anywhere until ME & CFS are separated and treated separately for both treatment and research.
Lumping the diseases into one group just confuses the hell out of everyone, which is just where the vested interests want us to be.
This is a great point, Bob, but it could confuse the hell out of a lot of people here! Ironically, I don't usually use the term CFS, but I've slipped into as it seems to be the standard currency, Communication is paramount, so we all need to agree what we're talking about. There are no accepted definitions, and that's what we need to arrive at - think we should start a project on that and sort it out

This aside, my own theory about the LP is that it helps people who are towrads the psychological end of the disease spectrum, but not those towards the physical end. Problem here is that we all think we're at the physical end, although personally I undertook LP training with an open mind to find out if the psychological factors were significant in my own case. In eastern medicine, there is no separation of the two, which is great if it helps you understand stuff better, but I don't think this would help with resolution of a HIV infection, for example.
 
Berit Replied to the replies on the blog:

I apologize for the late response. I have been too busy lately, so have not been able to even read the blog myself until very recently.

My extended family is visiting from Norway (they arrived the Sunday you posted the story), so we have a very full and activity-filled house. I also had my first Lightning Process Seminar at the beginning of that week, so I have not have much time to engage with this. Again, my apologies.

During my illness I often sought your work out as a reliable way of staying informed on treatments, research and whatever else you chose to share. I have shared my gratitude for the amount and quality of work you have put down through the years, on behalf of the many of us who have been too sick to contribute.

I am so sorry for the criticism you have received by passing my story on, and I hope people do recognize your ongoing commitment to quality information. ME/CFS patients are often greatly offended when any mind-body link is suggested. I understand that, because I have myself been struggeling to have my illness understood by family and friends.

Remember that the Lightning Process has never claimed that this illness is all in the mind. It absolutely is not. All we are saying is that there are both body and mind issues that needs to be addressed, and that these are intricately linked. It is not either-or, it is both. On the other hand, I don’t know any condition where it doesn’t pay to recognize the importance of both the body and the mind.

The XMRV findings are generating new theories that may prove helpful in the future, but a medical cure is likely not around the corner. In the meantime - thousands with me have experienced how LP can effectively restore quality-of-life to victimes who have been sidelined for years.


The comments following my story, often quoted material from a few disgruntled participants published on blogs elsewhere.

No treatment program will be able to ensure 100% success. As practitioners we make a great effort in screening out participants that for a variety of reasons would not benefit. We realize all too well how disapointing it is to invest time and money in yet another program that fails to meet the expectations. We welcome objective research, but as you know; properly done, randomized, controlled trials are costly and need to be funded by neutral organizations without vested interests in a specific outcome.

Some of the points that has been raised about the training, about my colleagues, and about Phil Parker, I don’t recognize at all. - And contrary to many of the critics, I have actually been there. It is quite alarming to see something that you are intimately involved with described by people who claim to “know”, and you wonder if you have been on the same planet.

I have interacted with Phil Parker and his staff for more than 1 1/2 year now, and I have been very impressed with their professionalism and integrity. At no point are our clients told that we only want to hear about their successes. We most definetely want to know when they are struggling, so that we can support them in resolving that. What we do say is that, based on the way the brain functions, it is in their interest to report the two separately. So during the training we ask both questions, but we do so separately, rather than just saying “how are you all getting on”. That is very different from some of the claims that I see on this blog.

I do recognize that I, in deciding to make LP available in the US, I have lost some of my credibility in telling my story as I now may be perceived as having a vested interest in promoting the LP program. When I reported my personal experience with the Lightning Process back to you, Cort, in the summer of 2009, it was because I had promised to do so before I attended the training.

When you see so few comments by former LP clients, a point to keep in mind is that with ME/CFS the natural tendency for anybody who recover is to run away from the experience and never look back. The people who succeded in recovery are therefore not that likely to spend much time on these blogs. I had however made a commitment while I was still sick, that I needed to share my experience if I ever recovered, and go back to the community and do what I could to contribute.

Almost all of the people that seek the Lightning Process do so because they have had friends or family members who have experienced dramatic recoveries, and therefore want to explore the Lightning Process’ potential for their own lives. My commitment lies mainly with these groups. I realize that it will take time to build up a practice on this basis. I find that my role in this setting is not to convince people to take the training, or ‘sell’ the training - but rather to screen the applicants to make sure they are ready to commit to the sometimes hard work involved.

I hope the predictions for financial success come true, but so far my investments (more than 12 trips from LA to London etc. ) might take years to recoup. The reason that I am still willing and eager to do this work is the great potential that can be realized by helping ME/CFS sufferers tapping into the resources they allready possess.

I will leave it at this. I am scheduled to leave for London in a few days and will stay for a whole week. I am currently pursuing my advanced NLP training, and also working closely with the team in London, loving every minute of it.

I wish you and every one of your bloggers all the best in our common quest to help as many people as possible back to full health and a life they love.


Sincerely,

Berit
 
Description from someone who put this together after speaking to people who had done it. There is another description and I have posted other information here: http://www.forums.aboutmecfs.org/content.php?71-Lightning-Strikes-a-CFS-Patient

How to do the Lightning Process

Firstly write the words on pieces of A4 paper and spread them on the floor in the pattern below....

[Orla - sorry cannot reproduce image. You have cards on the floor with these words on them: Pit, Coach, Choice, Stop, Present moment, Life and Health etc.]

1. Stand n the 'Present Moment' and allow yourself to be aware of where you are and what the problem is that you want to change etc.

2. Move to 'Stop' - as you do this touch your thumb and little finger together on your right hand and say STOP out loud and mean it.

3. Look at the 'pit' and at 'life, health etc' and make a decision - do you want the 'pit' or a future? The 'Life, health etc' page can say whatever you want I should imagine - anything good you want. And it's probably not a good idea to think of the pit as a snuggly bed - but more as the worst symptoms you have and all the loss etc - I think you have to really hate that pit.

So - choose life I guess!

4. Move to 'choice' - as you do this move your thumb to your ring/4th finger and decide what you want to change e.g. I chose not to be ill anymore etc... express any doubts about how that might happen or whatever you want.

5. Move to 'coach' and move your thumb to your middle/third finger and say:

"Well done. You are on track. You are a powerful genius. You can do anything. I will be with you every step of the way"

6. Move back to 'choice' and move your thumb to your first finger. Say 'thank you' to the coach.

7. Move back to coach and move your thumb back to the middle finger and say something as the coach... something like 'how can I help you?'

You can now move back and forth between 'choice' (thumb on first finger) and 'coach' (thumb on 2nd/middle finger).

What it seems to be is that you elicit a conversation with yourself where you express your desires and give yourself permission and encouragement.

You should express what you want - the coach should ask you things like 'how are you going to do that' - if you don't have an answer say 'by doing the lightning process'.

If you find that you get back to a place where you need to ask another question/make another choice - step back onto 'present moment' and start again.

I understand that people do this 70 - 100 odd times a day...

Every time you have a doubt - you apply the LP, every time you have a negative thought you apply the LP etc....
 
"I am so sorry for the criticism you have received by passing my story on, and I hope people do recognize your ongoing commitment to quality information."
Hi Cort, I sincerely hope that my own comments did not come across in any way as criticising you personally.
I have nothing but gratitude and respect for the work you do with this forum and the website, and my criticisms are directed purely at the Lightning Process.

I hope that my comments are seen in the spirit that they were made... to contribute to a robust discussion of the issues.

I can see that you have had some negative comments directed at you personally after this blog, which, in my opinion, fall outside the spirit of the forum. They fail to engage in any discussion and, I believe, are lacking in perspective. You have kindly set up this forum for open and inclusive discussion, and so you should freely be able to post a blog about the lightning process, especially as you allow a healthy discussion to take place, along with personal criticisms.

The Lightning Process is very controversial for the reasons I gave in my earlier posts, and so I'm sure that you can understand why people get upset about things sometimes.


In response to Berit's reply:

ME/CFS patients are often greatly offended when any mind-body link is suggested.
I think that this fails to engage intelligently with the discussion. I am not at all offended by the suggestion of a mind-body link, but maybe I am offended when it is suggested that positive thinking can cure ME, without any substantive medical evidence to back up this extraordinary claim.

The comments following my story, often quoted material from a few disgruntled participants published on blogs elsewhere.
The 'disgruntled' participants' voices are as legitimate as anyone else's. After all, they wasted their money on a course that claimed to cure them, and they didn't get a refund when it didn't work for them.

As practitioners we make a great effort in screening out participants that for a variety of reasons would not benefit.
It is good that they try to screen people out if they are too ill to benefit from the course, but this highlights some of the discussion that we've been having which points out that The Lightning Process is selective in the patients which it 'trains' (and also the patients are self-selecting). This clearly demonstrates that The Lightning Process will not work for a section of the ME community, and the success/failure rate figures do not include those who have been selected-out.

We realize all too well how disappointing it is to invest time and money in yet another program that fails to meet the expectations.
So why on earth don't The Lightning Process courses offer a money back guarantee? This would alleviate many of the criticisms and anger.

I find that my role in this setting is not to convince people to take the training, or ‘sell’ the training - but rather to screen the applicants to make sure they are ready to commit to the sometimes hard work involved.
This 'hard work' is exactly why people with moderate to severe ME could not engage with the process, and so The Lightning Process can not be considered a cure or treatment for all types of ME. I'm glad, at least that this is acknowledged, albeit implicitly.
 
I didn't at all, Bob - but I appreciate your saying so. Thanks . I knew this was not going to be an easy topic :)
 

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