Article: An MD on the Lightning Process

You can view the page at http://www.forums.aboutmecfs.org/content.php?114-An-MD-on-the-Lightning-Process

 

Maarten, I don't want to stifle any discussion (but you have still failed to raise any specific issues of discussion with me anyway), but if you persist in accusing me of being a troll, without backing up your statements with evidence, then I will have to resort to reporting you...
The reason I would take this action is that if people, who don't know me, are reading this thread then they might take you at face value, and assume that I am a trouble maker or 'troll'... which I am not...
You are clearly going against the forum rules, and you are being disrespectful.
I have been very patient with you so far, but I will not continue to tolerate the personal attacks.
Bob

 

There is only one issue here and that is that Coxy has categorically stated that she "recovered from "ME/CFS" by turning of her stress responses and that is what the LP is all about".

Therefore one can only conclude that she was suffering form a stress related psychological condition not ME neuro immune disease. I sincerely hope that is the case otherwise Coxy you run the risk of driving yourself into a serious potentially further damaging relapse. As far as varying levels of "ME/CFS" go that is just a nonsense and it is of course common sense that all sufferers of ME or MS or cancer etc do not experience it in exactly the same way.

The fact is here that varying non related conditions have been tagged on to the term ME and will of course respond differently to quackery based "treatments" and "therapies".

http://www.youtube.com/watch?v=uVvcD4Czx4Y

Actually there is a second issue also:

BOB IS NOT A TROLL!!!!!

Relevant declared qualifications: None

 

Chill Maartin,

Suzy

 

Maartin, both you and Bob make valued contributions to these forums and this thread has seen much constructive debate around a very contentious subject.

Today, it's got ugly.

Take a cold shower, meditate, smoke a spliff, whatever it takes. But please, take some time to cool down.

 

Bob is not a troll

Some evidence. What Bob previously posted on this issue on Cort's blog after the first post on LP (and he is obvsiouly not an LP practitioner either):

Bob
Here in the UK, The lightning process costs about 600 for a course.
For your 600 you get about 6 one-hour training sessions (100 per session), and there are about 10 people on each course.
Allow me to do the maths for you:
10 people on each course paying 100 each per one-hour session gives the trainers 1000 per session...
Fit just 4 one-hour sessions in per day with 4 different training groups = 4000 per day...
4000 per day, for a 5-day week, is 20000 per week = 86,666 per month
= 1,040,000 (just over one million pounds) a year for each individual 'trainer'.
For those of you in the USA, i think that's about 1.5 million dollars, per trainer, per year.

You can work out why so many trainers promote the lightning process with such enthusiasm...
One training group in the UK has an enormous beautiful house in the middle of the English rural countryside:
http://www.swallowsretreatanswersme.co.uk/gallery/

I can not understand how these people can justify charging so much, to people who are too ill to work, when it allows them to afford such an enormous mansion with vast beautiful gardens. To me, it appears unfair and exploitative, and that it is feeding on people's misfortune.

Buyer, please beware of marketing techniques and sales spiel.

http://www.forums.aboutmecfs.org/entry.php?273-Lightning-Strikes-a-CFS-Patient (scroll down to comments)

Edit: and he had a few other comments on page 2 http://www.forums.aboutmecfs.org/blog.php?b=273&page=2#comments

 

Coxy, I think you are brave detailing your experience and this criticism is not aimed at you as you are repeating what you have been told.

I appreciate it's terribly hard to understand how it could work, but it's simply turning off the stress response that is stuck on and causing all the symptoms,

This is a totally meaningless statement. What exactly do they mean by a "stress response"? If such a thing exists where is the evidence that it is "stuck on"? Where is the evidence that any of this has anything to do with any symptoms in anyone, let alone in ME or even widely defined CFS?

We respond to stress by producing adrenalin, if they mean our bodies are producing too much adrenalin why don't they measure it? Excess adrenalin doesn't produce the symptoms of CFS.

Low blood volume is not related to stress, neither is mitochondrial dysfunction or any of the other documented abnormalities in ME.

It is also a fallacy to say that if an illness is caused by stress, removing stress will cure it. Damage that is done needs physical processes to heal if healing is even possible.

I am sure there is biochemistry being done that may elucidate the stress responses one day but any resemblance to all this will be coincidental. This"explanation" for ME is much the same as the psyches rubbish. It is nonsense dolled up to sound scientific with no evidential underpinning.

Mithriel

 

I agree with the following statement! :Retro smile:

BOB IS NOT A TROLL!!!!!

 

@ Bob

I'd prefer to see the threads merged. But failing that, I would like Cort to add a note to both of the two pages he has published Dr Frivold's opinion piece on.

Whatever I write in this thread is going to display here:

http://www.forums.aboutmecfs.org/content.php?114-An-MD-on-the-Lightning-Process

and then I have to decide whether I also want to make the same point here:

http://www.forums.aboutmecfs.org/entry.php?364-An-MD-on-the-Lightning-Process

and I don't quite understand why Cort has elected to arrange things this way.

Suzy

Believe me Cort has not 'arranged things' in any way. This is simply how the program works. This is the first time I've seen this - there are comments pages for both sections but how they've merged or haven't I haven't the slightest idea. Almost all of my blogs are posted on both sections - so whatever happens to this one happens to all of them. I kept this subject off the Front Page because I know the subject is offputting to many. I was astonished to find this conversation still going on actually

 

Bob is one of the last people anyone would suspect of being a troll - he is not in the eyes of the moderators a troll - please stop the troll talk. Such comments are obviously very upsetting to the members who are being accused of that. Thanks.

 

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!!!!!!!!!!

Please everyone treat everyone with respect! Its fine to question somebody about their particular type of illness - there are lots of different types of illness here - I wouldn't dream that I had the same thing as someone bedridden and crawling with HHV6 - but please do it respectfully.

 

You're trolling for LP as far as I am concerned, if not on purpose than for lack of qualifications, and not answering my questions. And your question is a red herring. Were I a moderator ....

thankfully in this case, you're not. Bob has been very critical of LP, to my mind, is bending over backwards to be fair - and does not deserve to be accused of 'trolling for LP"

The question is can we have a decent respectful conversation about this that leave's everybody mostly unbruised...I guess not!

We all know that ME/CFS is a huge, vague disorder with many subsets.... people have gotten well or better using all sorts of therapies from Vistide to Valtrex to Pregnenolone to antibiotics to envelope therapy,and this one. I thnk there's room for all of us in here.....

For what its worth I'm not surprised that these types of things can be helpful for some people...My sense is that my system overreacts to everything. For instance I sometimes notice that a negative thought about anything - not necessarily my body or CFS - causes my system to rear up and for me to unconciously hold my breath ,for my muscles to tighten up, etc. - its an unconcious physiological response which exacerbates my symptoms.

I certainly can't account for the PEM I experience after exercise by this. Usually exercise, at least at first, relaxes me and I feel calmer - its the pain and dullness and fatigue that happens later that is so problematic. I can see in my case how I might make things a bit worse when that happens by being upset - which is natural since it is a frustrating and painful exercise - but I can't see how those thoughts could cause them - because I do watch for them now and I can't see a cause and effect relationship.

On the other hand - I do derive benefit from slowing my body down and my mind down and putting my body into a more relaxed and healthful state.

 

I still think it would be better to make our case addressing specific scientific issues, rather than trying to pick apart each and every personal story that we are presented with, which could get very destructive for our community... this is just my opinion.

i was addressing scientific issues Bob

 

thankfully in this case, you're not. Bob has been very critical of LP, to my mind, is bending over backwards to be fair - and does not deserve to be accused of 'trolling for LP"

The question is can we have a decent respectful conversation about this that leave's everybody mostly unbruised...I guess not!

We all know that ME/CFS is a huge, vague disorder with many subsets.... people have gotten well or better using all sorts of therapies from Vistide to Valtrex to Pregnenolone to antibiotics to envelope therapy,and this one. I thnk there's room for all of us in here.....

ME is not a vauge disease Cort it is the various diagnostic ctriterea which are vauge.CCC is the only exact diagnosis.If someone makes claims about a cure and avoids answering any scientific questions then i think that people can draw their own conclusions.I can,t actually believe that you said the words huge vauge disorder with many subsets without any evidence to back those words up.There is nothing vauge about ME.There are people who are vauge about describing it-that is a big difference!

 

Please everyone treat everyone with respect! Its fine to question somebody about their particular type of illness - there are lots of different types of illness here - I wouldn't dream that I had the same thing as someone bedridden and crawling with HHV6 - but please do it respectfully.

she still wont answer questions about diagnosis and criteria?

 

[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,

you are just using metaphors.Who diagnosed you and what criterea did they use.I know personally several people who have been harmed by this approach.One is still bedridden.As it has potential to do great harm we are entitled to some objective information and not vauge anecdotes.



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

actually they can!

 

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!!!!!!!!!!

with respect talk is cheap what we need is objective evidence of effectiveness and potential to do harm

 

LP summary Objective evidence of effectiveness none objective evidence of harm plenty

 

... I was astonished to find this conversation still going on actually

Why astonished, Cort?

In the UK and elsewhere many of us share enormous concerns about the proposed pilot study for children when no RCTs have been carried out on adults - this pilot is due to start in September.

So discussion will continue at least until the pilot is halted. I should know in ten days or so, whether research ethics approval has been obtained or is pending - either way, discussion will continue, because many of us are very, very angry that Dr Crawley considers that it is OK to expose children as young as eight to this untested, unregulated program and we are not prepared to sit back and let it happen.

Suzy

 

ME is not a vauge disease Cort it is the various diagnostic ctriterea which are vauge.

Hi Gerwyn,

CFS/ME (as diagnosed in the UK) is a vague disease/s because they do not use the Canadian criteria in the UK, but they still name it CFS/ME.
When people talk about 'ME', we are not always referring specifically to the Canadian criteria, but we mean CFS or CFS/ME.
In your mind, ME is one specific disease process, but not everyone understands that point of view, especially if they are referring to CFS or CFS/ME.
Personally, I believe that ME (Canadian criteria) is probably one single disease process, but I imagine that CFS might encompass quite a few subsets.

I agree that it is good to discuss the diagnostic criteria etc., but I think it is helpful if we explain what we mean if we say ME is a single disease... because otherwise it just leaves people confused and none the wiser.

I'm just saying this because I think you lose people from your argument when you say that ME is definitely a single disease, if you don't explain what you mean.

Just my opinion, meant in the spirit of support and friendship.

 

Just plain wrong

Cort, the issues can be summed up quite briefly:

1. It's unethical

If there is going to be a study undertaken, it should first be carried out using adults.
(See MRC Medical Resarch Involving Children)​

2. It's unethical

There is no data on which to assess likely benefit and potential risk to children with CFS/ME; with no data, parents, and children considered competent to give consent, are not in a position to give informed consent.​

3. It's unethical

The program invalidates the disease and the child's experience of illness by ignoring the child's symptoms and reframing them as something the child is only choosing "to do" and can therefore choose, or be trained "not to do".

That is psychological manipulation of a vulnerable patient group and it is shocking.​

And yet you express astonishment that this discussion is still continuing and stick a smiley on the end of it.