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

[coxy]

Hi everyone,

I've decided (even though i'm having an XMRV test soon in uk) that we are going to give the LP a go.

My mind was swung after talking to one of the lovely phone line people at the Tymes trust (charity for children with ME/CFS). The trust obviously do not recommend this therapy or many others , so it was purely the phone lady who got my interest. Her son recovered after doing the process 4.5 yrs ago when he was 11yrs even though he had had a postive endoscopy prior to the LP with dr chia.

It was her son who wanted to try the process because his friend who was wheelchair bound had done it and recovered (she relapsed 7 mths later though). His mum has no idea to this day how it worked, she sat in on the whole process. She does however know of people it's worked for and people it hasn't. She strongly believes that the people who relapse quickly is due to doing far to much far to quickly though as her son's friend did! Her son didn't do any sport at school at all for about 8mths afterwards to allow his muscles and stamina to build up. After that he had no problems at all. He was affected very badly with ME/CFS originally.

I do know other people it has worked for so i think it is worth a go for both of us. My daughter however (15yrs) is not willing to come along with us, as she doesn't have any belief in it whatsover.

The trainer who i've chosen lives very locally to us and is one of the original trainers so is very excperienced. She NEVER does group sessions, and strongly believes in doing patients individually orin pairs such as me & my son. She has stated that all cases of ME/CFS are different, so group sessions are not appropriate.

Watch this space. I'm remaining upbeat about it and very open minded. Maybe we will be in the subset that it helps. I'm not expecting miracles, and would be happy even it improved us 10% before our holiday.

 

[m1she11e]

Very interesting! Best of luck and I look forward to hearing how it all works out!!!!

 

[mermaid]

Good luck Coxy with this for both of you. Whatever my own views about LP, (I have many concerns but they have been written about ad nauseum), I do know people who have been helped (and the opposite) and I sincerely hope that it helps you to get better.

Someone I was in contact with reckoned that it was important to find the right person to do it. Another friend of mine who did it was wise enough to pace after and I think that is key and seems to be common sense. She has gradually improved now over many months.

As for me, well I have decided to go for a slower approach, - have just sent off for Gupta .... I too am having the XMRV test.

 

[coxy]

thankyou so much for those positive responses, i thought i might get blasted for it!!!

I'm actually getting really nervous now for some reason, but trying to remain positive. i do have doubts as to if my 12 yr old son will be able to commit himself to it, we'll have to wait and see, i think he thinks it's going to be some kind of miracle.

To be honest whatever happens, we can afford it luckily, and it's the never knowing if we didn't try it that started to get to me. My theory is maybe the LP helps some subsets of the illness, but like i was told on the phone, none of us know what subset we are in. At least in the future better or not at least i can tell doctors i've tried it. With 3 of us ill & a 5yr old showing worrying symptoms i've got to try something, yes i'm desperate, yes it's expensive, but the cost is split between 2 therapists for 3 days, so i guess they arn't going to be millionaires!!!

It was the fact that the tymes trust phone councillor actually told me her son had tested positive for a virus in his stomach by dr chia that really swung it for me. He then went on to do the LP and has been
able to control his symptoms and lead a normal life. His mum still worries about him over doing it all the time! So far so good for 4.5yrs, whatever happens in the future he's had that time which must be invaluble especially at that young age.

 

[coxy]

Really good luck with the Gupta programme mermaid

 

[leaves]

Good luck Coxy; keep us posted!!

 

[mermaid]

Really good luck with the Gupta programme mermaid

Thank you - I'll try and post on the right thread. It might keep me on track!

And yes ... we will all be wanting to know how it goes for you both! When is it to be?

 

[fingers2022]

thankyou so much for those positive responses, i thought i might get blasted for it!!!

Coxy you will not get blasted for anything here.

As ME sufferer, and failed LP student, it is my personal belief that the LP cannot cure ME. In fact I think it could be a diagnostic criterion.

I did the LP because I have a completely open mind anout my illness and its eteliology. I actually thought it might have been caused through my psychology. I know I have suffered from stress and depression in the past, so it is feasible. I also know that I have physical symptoms, feeling ill daily for 20 years, frequent infections which are hard to shift. So, I'm sure I have organic disease, but I'm not sure what makes/made me susceptible to it.

I also know that I am very strong. I continued to work for many years in a senior management position with a large company (Thorn EMI. a fantastic employer) with my ME, and have continued to remain as fit and active as possible (I do 10% of what I used to do, so now my physical activity level is about average - I hope that doesn't sound conceited, it's just meant to be factual).

I do not see any way that the LP can cure my illness, just as I would not expect it to cure cancer, AIDS or MS (although Phil Parker is trying with the latter - he knows he's on safe ground as it's often as difficult to diagnose as MS).

I could go on, but what I would like to guard you against is the provider of the LP. Everything they do is suspect. Phil Parker dabbles in the occult. He is not a scientist or a trained physician. He is a quack. He employs aggressive matketing techniques (like nice ladies on the phone). He makes a lot of money, as do his disciples/pyramid sellers.

Coxy, I do not want to remove hope. Do not let me dissuade you from undertaking this for your son, but please be informed and aware of what you are going into. It may work, it seems (anecdotally) to have worked for others - the only explanation I have for this is that it may resove psycological problems.

I post this in the interests of learning and understanding. Proper studies are required, and I am trying to facilitate these.

Very best wishes
F

 

[fingers2022]

She strongly believes that the people who relapse quickly is due to doing far to much far to quickly though as her son's friend did!

This is similar to my own experience, not a relapse, but a worsening due to doing too much, which is what the approach encourages. Just like GET/CBT, this approach works for those who can't do it because they think they can't do it, or don't want to do it.

How many people who claimed to have recovered via the LP, eventuially relapse? Is this in the stats?

Sorry, my earlier post was not direct enough. STAY AWAY FROM THIS SHIT UNLESS YOU THINK YOU HAVE PSYCHOLOGICAL PROBLEMS THAT YOU THINK CAN BE HELPED BY JINGOISM, THE OCCULT, QUACKERY ETC.
If this is the world you live in, go ahead.

F

 

[Wayne]

STAY AWAY FROM THIS SHIT UNLESS YOU THINK YOU HAVE PSYCHOLOGICAL PROBLEMS THAT YOU THINK CAN BE HELPED BY JINGOISM, THE OCCULT, QUACKERY ETC.
If this is the world you live in, go ahead.

F

F,

I found your first post to be quite remarkle. It had some good information, and was presented in a credible, respectful manner. I thought it very considerate of you to post some of your perspectives.

Which is why I was shocked at your second post. You're no longer just giving information for someobody else to carefully weigh and consider. You're instead leaping headlong into their space in a very aggressive and unethical manner.

What happened to you in the 15 minutes that transpired in which you said Coxy would not get blasted here, and then you blasted her? It's pretty dismaying to see this type of posting here, especially after the person you're addressing had expressed reservations about getting blasted.

I think it would be advisable for you to reconsider your second post and delete it, or perhaps edit it to show a little more respect and a little more grace.

Wayne

 

[fingers2022]

F,

I found your first post to be quite remarkle. It had some good information, and was presented in a credible, respectful manner. I thought it very considerate of you to post some of your perspectives.

Which is why I was shocked at your second post. You're no longer just giving information for someobody else to carefully weigh and consider. You're instead leaping headlong into their space in a very aggressive and unethical manner.

What happened to you in the 15 minutes that transpired in which you said Coxy would not get blasted here, and then you blasted her? It's pretty dismaying to see this type of posting here, especially after the person you're addressing had expressed reservations about getting blasted.

I think it would be advisable for you to reconsider your second post and delete it, or perhaps edit it to show a little more respect and a little more grace.

Wayne

Wayne

Thank you for the feedback on how my posts came across. Maybe the style and content of my second was not well considered. However, I felt that I had not expressed my views and feelings directly enough. I also accompanied these posts with a PM to Coxy to explain further the reasons for my posts.

I do disaagree however, that I have "blasted" anyone.......except Phil Parker and crew. It was certainly not my intention to be unkind to anyone here. If I have been, please accept my sincere apologies.

Fingers

 

[coxy]

fingers i could of done without that thanklyou very much!!!
Sorry it didn't work for you, but there are possibly 7 different subsets of this illness (i think dr kerr has proved that?), so maybe the reason it works or helps some patients and doesn't for others is something to do with that.
If it doesn't help us i will still be on this forum and have ticked another useless treatment off.
I don't think it's helpful to any of us when someone completely rights this off just because it didn't work for them.
It seems to me that anyone who dares say it's cured them on any forum get's told they didn't have ME in the first place then, & we all tend to believe that.

 

[girlinthesnow]

Coxy,


I wish you and your son all that you hope for. :Retro smile:

 

[coxy]

girlinthesnow, i feel exactly like you, and my 15yr old with me/cfs isn't helping with her negativity about the whole thing, but i'm going to try and distance myself from being skeptical, god knows how though!!
The boy who has recovered i was telling everyone about had a food phobia due to sickness with his ME/CFS in his early couple of years & only ate 5 foods, he was completely cured of that aswell. i know it sounds unbelievable, it does to me, but the tymes trust lady had no reason to tell me her story, the tymes trust are COMPLETELY against promoting it in anyway. She is not the first person in my life to have done the LP, and all of them have been made better so there MUST be something in it.
Perhaps if i tell my story after trying it, people will trust me enough to believe the results. I have never been able to trust anyone who has talked about it on a forum, as yiou never know if they have a vested interest in it. I think the whole thing has been blown out of all proportion. I think it's unfair for anyone to be negative about anything to do with ME/CFS unless they have tried it, which in most cases they haven't.
Obviously fingers has tried it and it failed so he feels very passionate about it. To be honest even if it fails for us i wouldn't tell other people not to try it, as i have evidence of it being successful for some.

 

[MEKoan]

Hey Coxy,

I wish you all the best!

Just want to comment that thought stopping and CBT are very effective for things like discrete and specific phobias - ex.: foods. So, there's absolutely nothing unbelievable aobut that. Thought stopping has been used for years to treat phobias. And, improved nutrition is a great boon to better health!

Good luck to you and your son!

Koan

 

[girlinthesnow]

I understand about the teenage negativity thing, I've got one too ( a teenager that is!)
You are trying to help yourself and your son in the only way that has presented itself at the moment, that is a positive thing.

I wish you all the best.

 

[Dx Revision Watch]

"...but the tymes trust lady had no reason to tell me her story, the tymes trust are COMPLETELY against promoting it in anyway."

If it is not the policy of TYMES Trust to promote LP to enquirers why was someone manning a helpline for TYMES Trust giving at least one caller their personal views and opinions on the effectiveness of LP?

By manning a helpline on behalf of Jane Colby, whether paid or on a voluntary basis, this lady is acting in the capacity of a representative for TYMES Trust, not a representative of her own views and opinions.

I'm very uncomfortable with the concept of parents phoning TYMES Trust for information and advice and being given personal views and opinion on treatments, therapies or "training" processes by those manning the helplines.

 

[Dx Revision Watch]

http://www.healinghawk.com/prospectushealing.htm

[...]

"Teachers.

"Phil Parker is already known to many as an inspirational teacher, therapist, healer and author. His personal healing journey began when, whilst working with his patients as an osteopath. He discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct! He further developed this ability to step into other peoples bodies over the years to assist them in their healing with amazing results. After working as a healer for 20 years, Phil Parker has developed a powerful and magical program to help you unlock your natural healing abilities. If you feel drawn to these courses then you are probably ready to join."

[...]

There are two other threads on LP (and specifically LP in relation to the Dr Esther Crawley pilot study) here:


http://www.forums.aboutmecfs.org/showthread.php?3628-Article-Lightning-Strikes-a-CFS-Patient

and here:

http://www.forums.aboutmecfs.org/sh...to-be-Evaluated-in-Research-Study-on-Children

Please also see:

Private Eye report: Critics of the Lightning Process, Legal News Page

http://wp.me/p5foE-2lP

M.E. sufferers were stunned recently to receive threatening letters when they posted their views on the Lightning Process, a programme that allegedly produces amazing results for people not only with M.E. but anxiety, panic attack, over-eating, low self-esteem and guilt too. When sufferers started reporting they had paid 600 for a course that did not work for them, they received warning of defamation proceedings if they did not recant.

 

[flybro]

Hi Coxy,

I admire your courage girl. I think I also have some understanding of the desperation, fear and pressure you must be experiencing as a Mum.

I hope that it does work for you both, and that your daughter eventually benefits from it as well.

With some luck perhaps the powers that be will start to understand that the diagnostic crteirior for ME CFS FM MCS is dangerous.

I would want myself and my girls to be in the LP subset, I would want us to be negative for xmrv.

My personal experince of this disease is such that I am scared of becoming too enthusiastic and too positive. I spent yeras ignoring the weird symptoms that came and went, until they came and stayed.

I've spent the last six months crawling out of the worst crash I have ever experinced. As much as I want to belive that I over did things I know I didn't. I want to beleive that PACING, CBT, GET and LP will work.

A couple of months on a low dose of clarithromycin abated my sysmptoms enough to give me the confidence to beliving it was time to increase my activity levels a little. I've ben interacting with my family downstairs in the family room. I've increased the amount of weekly baths I have. I have only had two or three days in nearly four weeks where I didn't get washed and dressed independantly. There hasnt been one day in nearly 2 weeks where I havnt managed the staors at least once. I have enjoyed and benefited from a lot of great sleep.

However my symptoms are increasing and the OI POTS are stornger and longer, and my cognitive abilities are taking a battering. My herat seems to be behaving wierd. I have had far more visual disturbances and fuzzy vision. In fact this is my 5th or 6th attempt at posting this.

I'l do whatever I can to supprot you in your role as a mother and a fellow 'waste basket dweller'.

I hope and pray that this does work for you and your family.

For those of us who's knowledge and experince of the disease tells us that CBT GET and LP are dangerous, we are most likely right about ourselves.

Many of us have tried varying types of CBT GET and LP, self help, meditation, NLP and many many other 'self-mind and body management techniques.

The best help I have ever had comes from my family and a prescription pad. I beleive that my sysmptoms scream infection and my symptoms have been helped most by clarithromycin, tramadol, zopiclione, Q10, BVits Omegas3 6 9, asprin, exlax and fybogel, as gluten and lactose free diet as I can manage, and very important PACING.

sincerest wishes for your and your families successful recovery.


Coxy the first post on this thread mentions a dangerous experince I had recently, only read it if you need to be told to be carful

http://www.forums.aboutmecfs.org/sh...rents-Children-Grandchildren-Aunts-and-Uncles

 

[kurt]

Coxy,
The only thing that matters is whether LP works for you and/or eventually your daughter.

This is certainly a controversial therapy, and clearly it is being over-marketed, but many other therapies are controversial, some are far more dangerous. People in the UK appear to have limited options, and may not realize that many of the drug therapies available in the US are just as controversial, and can cause serious harm and death. I have nearly died from a drug treatment for CFS that I was told by my doctor was perfectly safe. I was in a type of neurological torture-chamber prison for over a week after a single small dose, it partly paralyzed me while agitating my nerves, that was the most horrible experience of my life. In another case I have a friend who actually died (not crashed, but dead) from the same drug, often prescribed for CFS here. He was a brilliant young man with his whole life ahead of him, and the people around him, rather than being supportive, accused him of malingering and pushed him into an adrenal crisis and he died in the night while trying to get off this drug (Neurontin).

So if people want to tell 'scary stories' about this treatment, remember that there are risks in every treatment. While I respect that LP has caused some people to crash, probably from overactivity (which is easy to control!), the threapy can clearly solve some type of subconscious looping issue and take a huge burden off the body. Lowering stress can cause physical change, including improving immune function and allowing glutathione levels to increase (due to the decrease in stress-related hormone detox). So while there may be controversy over the therapy, if you are smart enough to not become overactive if it helps, then why not try it out?

Personally I think major, clinical-level stress reduction is probably a necessary requirement for many ME/CFS patients, along with other therapies. Particularly if we have stress-mediated infections such as herpes, hepC, MuLV type infections (HERVs or XMRV), etc. Reducing the stress may actually lower viral loads in some cases. I have wondered if that is what happens for some who benefit from LP, Gupta, and therapies like that. In fact, I created my own approach, a self-talk method, to stop 'adrenal looping' and had an immediate gain, small but noticeable, maybe about 10%, enough that I could drive again. Then I taught self-talk to a few other CFS patients and most had similar benefit. Others here have reported similar gains from various types of stress-reduction or coping type approaches, including meditation, NLP, etc. And that is what matters most, having real, concrete gains. My guess is that those with mild CFS may have major benefit from LP and related therapies. But others might benefit as well, just not as dramatically. And I do NOT believe that benefiting means that there was some psychological problem, I certainly was no different psychologically before and after using self-talk to lower stress levels. Rather, I believe some of these infections we have are neuro-tropic and psycho-tropic, meaning the infection produces toxins that may alter nerve sensation (herpes can be in the nerves, giving false sensations), which will mess with anyone's natural neurological responses. Maybe these therapies help us compensate for some of that, retrain some automatic interpretations of sensations? Something like that.

Of course, you may have to 'filter out' some of the false ideas in the LP, hopefully you have read enough opposing views of LP to realize that you did not 'create this illness' through illness beliefs. But what they have a person do appears to really work at some level, so if I were going through LP I would try to pay closest attention to the actual mental and physical mechanics of what they have you do, and ignore the rest.