• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Orla

Senior Member
Messages
708
Location
Ireland
Fingers wrote
It will be interesting to hear what your trainer has to say - maybe you could encourage them to sign-up here and give us their input? Although, I'm not sure I can deal with that absence of logic again.

I agree with your last sentence, but as for having an LP trainer on here, Oh no, please no. I think this is a bad idea (no offense.) These trainers are trained sales people and cannot be trusted not to be marketing LP on the forum, as they do whenever they get a chance to promote it publicly.

Jill, for anyone who wants to know what LP is, I have posted a lot of information on it in different posts here (the information is from different sources):

http://www.forums.aboutmecfs.org/content.php?71-Lightning-Strikes-a-CFS-Patient#comments

The LP trainers used to really emphasise to clients not to speak about what was involved in LP, and also to avoid patient groups (other than to promote LP). Some of them may have backed off this a little by now. This is one example

The tutor said that if we tell people about the process if won't work. That's right, to talk about the process means it can't work for you. She also told us that no matter how she feels she tells everyone she "feels fabulous".

http://www.sayer.abel.co.uk/LP.html

Adam I agree with you on the Amway comparison. This is a report from one person who attended a talk/promotion by a trainer:

I recently attended an ME Support Group, along with 8 other poor souls, and was "Processed by Lightning".

Have you ever invited an Everest Double Glazing Salesman or an Amdega Conservatory "Consultant" into your home and after 10 minutes regretted that mad impulse? I have, and with the Lightning Process, it was a case of dj vu.

A "40 minute talk" by Emma, our Lightning Process Consultant, turned into a two hour "Death by Power-Point" seminar
http://www.sayer.abel.co.uk/LP.html
 

JillBohr

Senior Member
Messages
247
Location
Columbus, OH
Have you ever been to an AMWAY presentation? Only joking peeps.
Oh Adam, I am so sorry but you cracked me up when you mentioned Amway. I do not know if you know this or not but I have two kids with autism. When were living in Germany, one of the mothers came over for an AMWAY presentation. I had no idea what this was and my then husband was not thrilled at all. Perhaps that is what ruined our marriage? Anyway, my oldest son bit their daughter and they left shortly after that. Although my son has severe autism, he is a lot smarter than me in many ways. I just wish he had bit the mother instead. That poor daughter was an innocent bystander. Could you imagine how many AMWAY presentations she has to sit through? That poor girl is going to be a wreck when she gets older.:confused:
 

fingers2022

Senior Member
Messages
427
I agree with your last sentence, but as for having an LP trainer on here, Oh no, please no. I think this is a bad idea (no offense.) These trainers are trained sales people and cannot be trusted not to be marketing LP on the forum, as they do whenever they get a chance to promote it publicly.

It was said with tongue in cheek, Orla (ask Adam junior). There's no way they would venture here - they would be eaten alive.

ATB
Steve
 

DavidJ.

Senior Member
Messages
111
Location
Germany
i have never heard about amway before to be honest. but after checking their website i have an idea what you are alluding to. looks fishy...
 

flex

Senior Member
Messages
304
Location
London area
Thanks for all your comments.
I've been wondering as to why others haven't decided to give feedback after doing the LP? I certainly didn't have my brain taken away by the process, i remembered all of the poor people left behind on the forums that need to get as much info as possible from any treatment that is tried. I wasn't told by my trainer to keep away from forums or keep anything a secret (i had heard rumours to this affect before i tried the process). I don't feel i'm doing myself any negative type of damage by talking about it, i would probably be told i was if it fails i suppose.
I can't believe that any past ME'er who has been cured by it, was that sure their cure would last, and deliberately stayed away from forums. I have no idea what's going to happen to me next and nor would they know! All of us know we can go through periods of remission if we are lucky, only for it all to come flooding back again, i've fallen for getting my hopes up about my 15yr old daughter to often in the past, only to get deflated again.
At the moment i'm feeling really nervous about going back to the trainer, i scared to death that she's going to tell my son off for not trying hard enough or something. I feel that i would lose my temper if she suggested that! I'm almost tempted not to take him at all. What do you think, especially those amongst you who have been through it?

Coxy,

as you have asked for feedback I am going to be frank with you. I feel it is down to us to filter out information as patients and particularly parents. You can take my opinion and the counter opinions you may come across and do what you want with them.

After reading the review of your attendance of the LP course and the fact that your son had to use a wheelchair for the first time ever I was further amazed by this quote:

"At the moment i'm feeling really nervous about going back to the trainer, i scared to death that she's going to tell my son off for not trying hard enough or something. I feel that i would lose my temper if she suggested that! I'm almost tempted not to take him at all."

Before reading this closing statement I thought you would have cut all links with this crazy woman. If one of my children was ever in that position I would not need to consider whether I should further expose my child to such potentially damaging nonsense in both a physical and emotional sense.

I have had a feeling of "the emperors new clothes" about this thread from the beginning with people, who I guess rightfully so, allowed and supported you to make up your own mind about this course. Many others may have not expressed their true sentiment, giving you a slightly flawed sense of overall support. You may not have "had your brain taken away by this course" as you stated but people like this trainer are born manipulators. It is more a case of trying to break down your own competent thinking brain by force or by design to trick or coerce you into submission for their own purpose. This women has no real interest in your families physical improvement. Neither is she qualified, informed enough or capable enough to do so. How could she be if all the best well meaning doctors and scientists in the world are still struggling with such matters.

If any person put my child in a wheelchair and then had the front to suggest that it was "his fault" somehow for not being a good little student they would not live to tell the tale.


Please forgive the blunt nature of my reply but it seems right that you should hear what I believe to be the majority, probably silent, opinion considering you have expressly asked for comments.

If this woman does appear on this thread I will verbally slaughter her with the truth.
 

Min

Messages
1,387
Location
UK
There are members of the 25% Group for the severely affected who have been made permanently severely disabled, bed or house bound, from following bad advice to ignore their symptoms and increase their activity levels.

Your son could have a permanent relapse from this questionable process.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Not caught up yet with all recent activity on this thread but just to mention that an FOI has been prepared in relation to the proposed Dr Crawley led pilot study in children 8 to 18 and will be submitted early next week to the Royal National Hospital for Rheumatic Diseases.

I've already posted this today, on another thread, but this is for Coxy and son:

129151777089309020.jpg
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
So sorry to come to this thread so late but for the life of me, I do not understand what the lightening process is. Would someone explain to me what this is? Is it a motivational seminar or something?

Jill, here are some links that may be of interest:

Sample LP application form:


The statements and beliefs in the LP application form which prospective trainees are expected to sign up to are shockingly manipulative, see here:

http://www.changeworksforyou.com/applicationform.htm


LP pilot in children 8 to 18:


Research study to investigate a chronic childhood condition
Press release issued 3 March 2010

http://www.bris.ac.uk/news/2010/6866.html

Given that no rigorous controlled studies have been carried out with adults, the proposed UK Dr Crawley led pilot study into LP and children should not have received ethics approval (if approval has been obtained, which has yet to be confirmed).

See this document:

MRC Medical Resarch Involving Children (Nov 2004, revised Aug 2007)

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002430

4.1 Does the research need to be carried out with children? Research involving children should only be carried out if it cannot feasibly be carried out on adults.

Many of us are seething about this study.


LP "Statistics":

http://www.lightningprocess.com/Portals/1/press/Current research for LP jan 08 me.pdf

Two other PR threads:

http://www.forums.aboutmecfs.org/showthread.php?3628-Article-Lightning-Strikes-a-CFS-Patient (5+ pages)

http://www.forums.aboutmecfs.org/sh...to-be-Evaluated-in-Research-Study-on-Children (15+ pages)


A brief and disturbing account from a very dissatisfied LP client:

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

Lightning process for ME didn't work for me
Thursday, January 15, 2009, 07:00



The March 2007 edition of Action for M.E.'s magazine InterAction published this article:

http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf

InterAction 59 March 2007

LP: the light at the end of the tunnel or just another flash in the pan?


"The Lightning Process (LP) has attracted national press coverage but alongside the hype and talk of miraculous recovery, InterAction received reports of relapse and failure, and decided to find out more."


Some first hand accounts:

LP DOESN'T WORK FOR ME


http://www.sayer.abel.co.uk/LP.html


In November last year, Private Eye published a brief item on its legal page:

Private Eye: Critics of the Lightning Process, report on 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.
 

MEKoan

Senior Member
Messages
2,630
Flex,

Fantastic post. Thank you for saying so clearly what so many of us are thinking and feeling.

We are all very timid around the placebo effect - it's a fragile thing.

Thanks again,
Koan
 

JillBohr

Senior Member
Messages
247
Location
Columbus, OH
Thank you ME. I have a facebook page and one of my "friends" is Dr. John Greensmith and he has been advocating for all of us to speak out against the lightening process. I was not paying close attention because of other things (you know, 2 kids on the autism spectrum) and then all of a sudden Facebook yanked his account. I am very upset about this and I can not help but think that it has something to do with him advocating against the lightening process.
 

MEKoan

Senior Member
Messages
2,630
Hey Jill,

That whole Greensmith FB thing is so mystifying. Could it be an organized LP action? That would be easy for them to orchestrate which is very sobering.
 

JillBohr

Senior Member
Messages
247
Location
Columbus, OH
Hey Jill,

That whole Greensmith FB thing is so mystifying. Could it be an organized LP action? That would be easy for them to orchestrate which is very sobering.
Koan, Oh, I hate getting into the conspiracy theory thing but something is really strange. I do know that I have another "friend" on facebook and he was saying that he rec'd a notice from facebook that they would delete his account if his posted another link to a youtube video. Dr. Greensmith does have some great funny jokes and it may have been some links that he had to videos on his account. I just do not know.... and it is so frustrating for me because I love his facebook posts.
 

MEKoan

Senior Member
Messages
2,630
I was not hooked up to the Greensmith FB page until it was cancelled and I hooked up with the page protesting that. FB is full of politics and opinion and, and, and... I know because it is an outlet for myself and my friends who sometimes hold political views outside the mainstream and none have been censored... so far. This is completely mystifying to me. I just don't get it.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
AND a fantastic documentary post from ME Agenda!

Thanks a lot, also for your many other excellent writings about and around ME. I've learned a lot from you. You are very sharp. Thanks for existing and doing what you do with your excellent wit!

Maarten.

Gosh, Maarten, what can I say, except to thank you for your kind words.

Suzy
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
thanks for the update. i am sorry to hear about your son and hope that he feels better soon ( you too of course ) like I said before, if you two have something like xmrv ,and i hope you dont, but if you do then its hard to believe that a simple affirmation process should remove this heinous virus from the body. and thats why i dont like parker at all.

But have you seen this, David?


Phil Parker slide presentation on LP, CFS and XMRV:

http://www.lightningprocess.com/LinkClick.aspx?fileticket=Uz7/MsTEqpU=&tabid=371&language=en-US

@ Slide 7

"If we assume that on average:

67% of the cases of CFS clients that are seen with the LP have the XMRV virus,

And according to our findings 85% of these people recover their health in the 3 days of the LP programme

The LP must be assisting these people to deal effectively with that infection in some way (we would hypothesise it is a resumption of good immune and neurological function)



Chutzpah? The guy's got it in spades...
 

fred

The game is afoot
Messages
400
Hey Jill,

That whole Greensmith FB thing is so mystifying. Could it be an organized LP action? That would be easy for them to orchestrate which is very sobering.

There's a possibility that the two 'ladies' who run the Chrysalis Programme reported John to Facebook. He was openly critical of their disrepectful use of Lynn Gilderdale's story. There is no concrete proof of this, of course, and Facebook will not divulge anything to anyone about the affair. You might find, however, that Dr John is back on their hallowed pages.

http://www.facebook.com/profile.php...257844#!/group.php?gid=110471515643212&ref=ts
 

Min

Messages
1,387
Location
UK

Min

Messages
1,387
Location
UK
yeah! he's back!

I that saw the Chrysalis programme people were misusing Lynn Gilderdale's name in their advertising, even though she was nothing to do with them. John's campaign led to her name being removed.
 

fred

The game is afoot
Messages
400
But have you seen this, David?


Phil Parker slide presentation on LP, CFS and XMRV:

http://www.lightningprocess.com/LinkClick.aspx?fileticket=Uz7/MsTEqpU=&tabid=371&language=en-US

@ Slide 7

"If we assume that on average:

67% of the cases of CFS clients that are seen with the LP have the XMRV virus,

And according to our findings 85% of these people recover their health in the 3 days of the LP programme

The LP must be assisting these people to deal effectively with that infection in some way (we would hypothesise it is a resumption of good immune and neurological function)


Chutzpah? The guy's got it in spades...

Shame he doesn't have any statistical expertise either in spades or any other garden implement.