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

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

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

lol @ death by power-point seminar.

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.

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

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...

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.

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.

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:

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.

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

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.

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.

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.

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

Suzy

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...

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

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.

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