Article: An MD on the Lightning Process

Coxy, I am in the process of putting together a posting around the forthcoming launch of ICD-11 and I need to remain focussed on that, today, but I have some comments to make in response to your own responses, and I hope you won't mind if I leave these until tomorrow or the next day when I will have more time.

Suzy

 

I was diagnosed with me/cfs 2.5yrs ago by Prof findley as was my daughter 7 yrs ago, my son who got ill 4 yrs after chloe was diagnosed with me/cfs by a paeditrician. I lost faith in prof findley when he referred me to his 1000 version of the LP. I was a non believer, but became desperate BEFORE our usa holiday to get some help. I happened as i have mentioned before to have a conversation with a lady who works on the Tymes trust phone line a week before our holiday, who told me about her own son having recovered 4 yrs earlier on the LP. I decided on a whim to give it a go. I had no big interview to see if i was ready or various other weird things i've heard about, it was all very relaxed. i knew very little as to what was involved, but had been assured by other people i personally knew who had recovered that they found it hard to see how anyone could be made worse by it. I felt i had nothing to lose but money!
I am not trying to talk anyone into doing the process as i could not be sure it would work for everyone, i don't know enough about ME/CFS to state anything for sure, as i'm sure noone else does on this forum. This started off as me trying to help us all by telling you as it is, the ups and downs and everything in between as i've progressed.
I'm guessing that if the LP is suddenly offered on the NHS then there would be many of you willing to give it a try, that could be years off though, i couldn't wait, and i'm sorry for the one's amongst you who really want to try it who can't afford it.



I would love more of you to try it and report back on here so we can get a clearer picture.
My main symptoms to answer someones query was severe and i mean severe cognitive problems (which was the first symptom to disappear i might add)

 

Maarten, I don't think Bob is a troll or LP promoter. He criticised LP before when it was being promoted by the original article in the "Recovery" section/Cort's blog. He had a post here which summarised some of the concerns people had raised


http://www.forums.aboutmecfs.org/sh...ightning-Process&p=77042&viewfull=1#post77042

I don't agree with some of the points he is making re how to argue about LP, but that doesn't make him a troll,

Orla

 

Hi Everyone,

It seems that some people are taking offense at some of my messages on this thread.
I would like to clarify what I have been arguing for in my recent messages.
Firstly, please don't read any of my messages in isolation, or you might mis-understand my position on this subject.
I have been one of the strongest critics of LP on this forum.
All I have been arguing for is that I think we should refine our criticisms of LP (not dilute them), and that we should keep arguing about the issues, and do not get side-tracked by tackling individual cases which, in my opinion, is counter-productive, and destructive for our community. This is just my opinion, and of course everyone is entitled to disagree.
I'm not insisting that people agree with me... I am just proposing that we develop our arguments together so that they are stronger, and they stick.

If people want to pick up any of the points that I have raised, and disagree with me, then I am happy to engage in friendly, constructive, supportive discussion, as always.

Bob

 

Sounds like there are certain people on here (mentioning no names) who could do with a bit of therapy of some kind, and fast!!!!!!!! ha ha

 

A few quick points

I agree totatally, and the same could be said for GET.

To address some of your points Bob:

Recovery, and helped a bit are 2 different things, and this is a point that would need to be made clear to anyone, especially someone using a case of "helped a bit" as evidence of "recovery".

In general I have a major problem with use of the word recovery in ME, as I feel it is often wrong (and always wrong if the XMRV thesis pans out). It is not unusual for people to have major remissions, or even be asymptomatic for a while, but to relapse later. People also often over-estimate how they are, as they are often pacing, to some extent anyway.

Though I agree that more general arguments need to be made also, it is also important to point to glaring holes in individual stories, where they occur. LP relies exclusively on anecdotal evidence to make their claims, and in the UK aggressively marketed their products via media "recovery" stories (often done by people who were now selling the treatment).

In this context there is no choice but to deal with individual stories. Individual stories of unsatisfied customers are also useful.

Also because LP trainers/promoters have been traditionally secretive about what was involved, it was necessary to rely on accounts of those who had done it to see what it involved.

I agree that we could call LP some sort of faith/psychic healing, but a very expensive one at that. It is $1,500 to go to the person Cort interviewed. If a church charged this there would be an outcry, and everyone would be suspicious of it, I think.

On your first point, the issue is, are we arguing with the person who did it and who still believes in it, which I thought we had agreed was not going to be that productive? Or are we just trying to explain our position to others?

If explaining our position to others then I think it is not a difficult argument at all. If you point out to people that

(a) someone basically has to agree to be unquestioning and fully believe in the process before signing up - and that they weed out skeptical people

and

(b) that it is part of the process to say you are recovered even if you are not (this is a very strong argument which underminds ALL "recovery" stories)

and also I think if people pay a lot of money for something they really want to believe it is going to work this biases them towards a favourable view of it, initially at least (this problem could exist for any expensive treatment, and is not specific to LP)

Unfortunately I think it is impossible to avoid addressing the personal stories, if these are going to be rolled out as evidence of LP's effectiveness. However it might be preferable, where possible, or some of the time at least, to use examples of people outside the forum, which people have done. But this is not always possible if people who are doing it/have done it contribute to the discussion (which they are entitled to do).

I agree Gerwyn.

Orla

 

It is not part of the process to say you've recovered. I don't understand where all this talk comes from? I was never told i had to tell myself that, never not once. I'm certainly not trying to talk myself into feeling better.
You are never going to get most people who have done it to stay on forums and keep others informed, that's why i'm determined to do that. Who knows i may relapse in 6 mths time.
I was tempted to come off the forum and indeed did for a while as it is a stressful place to be at times. I didn't want to full back into the horrible brain fogged way under any circumstances.
The reason i'm still here is one because i'm waiting for the XMRV test, as i believe it's the only thing that can explain why 3 of us have/had ME. We were all perfectly healthy before each getting ill over a period of years. If I am negative, it may help other negative people to decide whether they'd like to give the LP a try.
I actually hated doing the process or certain aspects of it, i've actually ignored one area which you are supposed to do along side the process, and that's negative language. I hasn't stopped me getting better so i really don't understand why saying something like " it's hard work" is wrong, apparently i should be saying "i'm doing hard work", to me that sounds crazy!
I really am a very normal person just trying to get better like everyone else, of course i would of liked my children to get better before me, but it hasn't worked out that way, fingers crossed they give it another try in the future.

 

Maarten, I have come across trolls before but don't think Bob is one based on looking at what he has said. As for qualifications, I think it is snobbery (sorry!) to argue that only someone with a degree or "qualification" can argue a point. By that logic Wessely's opinion would be superiour to many people here, who understand the issues but dno't have degrees, or relevant degrees. The issue should be the quality of the argument, not whether someone has a degree or not (I have 2 degrees myself so I am not arguing this point because of not having one).

Sometimes a persons qualification is important or relevant (if the argument is about scientific method or something), but sometimes it is less relevant.

Orla

 

Does anyone know if Findley is still flogging his even more expensive than Phil Parker version of LP?

I find this staggering. I assume he got to develop this off the back of his NHS consultancy. It borders on the criminal. Does he still run an 'ME Hospital' at Romford?

 

Coxy

I don't have time to explain this point in more detail. I do have evidence for what I said. Maybe your LP trainer didn't hammer this point home? I don't have time to post on this now as I have some work to do, but will explain better later with examples of what I am talking about from people who did it.

Orla

 

I agree Adam... it's seems absolutely corrupt... and immoral...
I had assumed that he stopped his medical trial when it was beginning to look like it would prove that LP was unsuccessful...
And then he started up his own franchise instead because he could see how lucrative it was...
and he charges 1000!?! Usually it's around 500 to 600.

 

I think all this arguing sums up why ME forums are sometimes dangerous places to be for MEer's. Maarten you clearly don't have the time of day for this kind of therapy, you haven't tried it, but are willing to scare the hell out of everyone else who may be contemplating it.
I have been round and round in circles over the years buying supplements, trying this trying that. I have jumped at trying anything that more than a couple of people on a forum have recommended, only to find i was out of pocket and there was no change for me or the children in some cases.
Maybe ME and CFS are 2 completely different illnesses, who knows. All i know is that all 3 of us had every ME symptom on the list between us over the years. obviously some people were lucky enough to be well informed early on in their illness to stop it progressing to a severe state, we were very luckily. Having said that, when children can't go to school at all and have to do online learning, i think that's pretty severe for a child!!
I guess you'll be excusing me of working for the LP next, that seems to be standard procedure for anyone who talks positively about it!!!!!!!!!!

 

YES he is as i explained earlier. He fell out with Gerri devries who was doing the study with him, she went her own way. He then carried on with the process using his 2 therapists who i have seen. That's why i didn't do it with him. He admits it only helps about a third of patients, i emailed him when i was considering doing it to ask his advise.

 

It beggars belief doesn't it?

I think Findley spoke to me once during the nightmare 3 weeks I spent there in Romford. I know of of at least one other PR member who spent several months in that hell hole Findley presided over. I discharged myself when I could no longer abide the condescending attitudes of the doctors, when I knew they had nothing to offer other than OT and a counsellor. And I was lucky because back in 2000 the CBT/GET programme was barely out of nappies.

GRRRRRRRRRRRRRRRRRRRRRRRR.

 

Hi coxy,

I have now been accused of being a troll, because I have argued that we should not attack people when they report personal stories of recovery.
Some people clearly don't agree with my argument, but that hardly makes me a troll.
So I now understand some of what you must have experienced on the forum.

But I would ask you to look at the following link so you can understand some of the issues which we are concerned about...
A couple of people have said it is a good summary:
http://www.forums.aboutmecfs.org/sh...ightning-Process&p=77042&viewfull=1#post77042

Bob

 

ok bob.
Have you been on the forum long, i just wondered as there seems to be a bit of suspicion about your motives? I can only think that you are new and that's why you are being spoken to in the way you have been. I don't think all the comments can be much good for you if you are ill!! I would of got really upset by it all.

 

Maarten, you might be of the opinion that 'NLP' (which LP is based upon) has absolutely no value in the world whatsoever...
But I'm sure that many people in the world have found NLP to be useful...
It is not something that I am attracted to, but many are.

In terms of NLP being applied specifically to a diagnosis of CFS, in the Lightning Process, I would say to you: if people have experienced significant recovery from LP, then I can't see how you can say "it is bad for you"... Bad for who? Bad for those who have experienced recovery?

If you don't believe that any person has experienced recovery due to LP, then how do you explain all of the reported success stories?

If you mean that you believe that LP can't possibly help anyone who has been diagnosed with ME using the Canadian criteria, then it might be better to clarify this, and to explain why you believe this, so that other people understand the issues, rather making accusations against anyone who has a different opinion to you.

 

bob, why don't you try it for yourself (if you can get the money together), then come back on here and let us all know one way or the other. That would be the best way to lay this argument to rest. I recommend Gerri de vries in Finchley, she doesn't do the LP but a similar thing. I've only spoken to her on the phone (for 2hrs), she has numerous success stories from people i know, i only wish i had found her first, she may have had more success with my son. I will definately go to her in the future, if my son decides he wants to try properly.

 

[maarten,, not everyone can be wrong and you right! I actually physically know many people who have recovered, they haven't recently done the process, they did it years ago and they are still fine, what is your problem with that. There are people there as the evidence, a few of them were completely bed bound, these are not always mildly affected people. I wouldn't of gone ahead with it without evidence. I wouldn't of gambled with my 12 yr old sons health without having some very solid evidence from people i know. Yes i live in an affluent area where more people are likely to outlay the money i guess, but the facts are there on the table for me to see with my own eyes. please don't put everyone off. you clearly have some very strong views, but so do i now i've done the process. I'm opting out of this discussion now as it's winding me up!!QUOTE=Maarten Maartensz;77488]Bob,



A billion Maoists, a billion Catholics and a billion Muslims, all ecstatic about their beliefs, just can't be wrong, Bob, I know...

What were your qualifications? O, none... and no, I am just trying to shut up these underhanded ads and defenses of the integrity of someting that is obviously rotten to the core.

MM[/QUOTE]

 

coxy, I don't think that you can have read many of my posts if you think I would try out the Lightning Process...
I would not spend 500 on an unproven therapy which I believe could not possibly do me any good, but is more likely to do me harm.
I believe that my illness is a physical illness, not a psychological one, therefore I cannot see how LP could possibly help me to recovery.
I will stick to 'pacing' thank you... it has been quite successful for me, for managing my symptoms, and it is free.

I have made arguments that it is unethical to subject a child to LP... I think that there would be a severe danger of developmental, and psychological damage for the child.
If a child is told to ignore his or her bodily sensations, and to ignore bodily signals of pain, illness and exhaustion, then I believe that would lead to long-term psychological damage. Please remember that LP is not a medical treatment, and so it has not been subjected to rigorous multi-million dollar safety tests like medical treatments are.
Also, if the child is told to ignore his or her response to illness, then that is invalidating and undermining that child's experience of life.
I believe that a child should be supported and validated in his or her illness, not told to ignore their illness as if it doesn't exist.

If an adult chooses to do this for themselves, and they have all the information available to them, then that's one thing, but if a child, who can't make an informed choice, is asked to do it, then I think that is close to child abuse... it's a strong term to use, but that is my belief.