ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

daska

I was on Prozac for a while - I got more depressed about the side effects: full sweats, loss of libido, chillblains etc etc (!?) :eek:

CJ

I don't know if anyone saw the 2 page spread in the Mail on Sunday You magazine last week about the miracle cure that is the Lightening Process.
The woman in the article had gone from bed bound for a year to being able to go into town for 5 hrs on the third day of the process, how amazing is that?

If she had only been ill for a year then I can only imagine she had a severe bout of post viral fatigue and not ME.

The article then went on about Austin Healeys wife who became ill after the birth of her child, it didn't say for how long. Then Esther Rantzens daughter who admittedly has been ill for 14 years and is now fully recovered.

4 members of my support group did the process last year at a cost of about £600 each for the 3 day course, I haven't heard of any miraculous recoveries, as far as I can tell like Reverse Therapy it is yet another very costly form of CBT

My heart sank when I saw the article last week, I thought here we go again, people will read this and give me their informed advice on my health. Sure enough on the doorstep a few nights later a neighbour had left me the article.
I just feel that every time something like this goes into print, people look at us and think well if there is a cure why are they not trying it and as I have been told in the past 'she must like being ill because she can laugh about it'.
Well if you didn't laugh about it sometimes, you would cry.

Has anyone heard of such a miraculous cure with LP, I would love to hear about it?

tomk_3

CJ wrote: »

I don't know if anyone saw the 2 page spread in the Mail on Sunday You magazine last week about the miracle cure that is the Lightening Process.
The woman in the article had gone from bed bound for a year to being able to go into town for 5 hrs on the third day of the process, how amazing is that?

If she had only been ill for a year then I can only imagine she had a severe bout of post viral fatigue and not ME.

The article then went on about Austin Healeys wife who became ill after the birth of her child, it didn't say for how long. Then Esther Rantzens daughter who admittedly has been ill for 14 years and is now fully recovered.

4 members of my support group did the process last year at a cost of about £600 each for the 3 day course, I haven't heard of any miraculous recoveries, as far as I can tell like Reverse Therapy it is yet another very costly form of CBT

My heart sank when I saw the article last week, I thought here we go again, people will read this and give me their informed advice on my health. Sure enough on the doorstep a few nights later a neighbour had left me the article.
I just feel that every time something like this goes into print, people look at us and think well if there is a cure why are they not trying it and as I have been told in the past 'she must like being ill because she can laugh about it'.
Well if you didn't laugh about it sometimes, you would cry.

Has anyone heard of such a miraculous cure with LP, I would love to hear about it?

The most interesting person of the three "cures" is Esther Rantzen's daughter given the length of her illness, etc. I would be very interested to know how she is doing now. Many of the relapses I hear from LP don't happen till 3/6/12 or even 18 months after doing it.

An interesting thing about her is that she previously talked about being cured by another regime in 2001/2002 in an article by the Daily Mail. I think most people would say you can only be cured once in your life.

There is a video of Austin Healy online praising it. But they have just done it so that means very little about whether it worked or not. Also sometimes partners do it so they've been hypnotised as well.

The woman in the Mail on Sunday article only did it three months ago. Relapses often take longer as I say so it will be interesting to see what happens. I notice she wasn't working so again how do we know how well she really is?

I heard from one source that if somebody who had done LP went for a walk but took rests along the way, when they were recounting the story, they wouldn't mention the rests as that would be "doing ME". Generally I don't think people who have done LP are that reliable a source about whether they really are doing well - I like to see more objective evidence like being able to hold down a full-time job (not a LP practitioner job).

daska

Someone I was at school with did LP and was miraculously cured - I understand that she had been ill for some time but I've not seen her since1989...

It doesn't 'feel' right. If what she had could be 'cured' this easily then surely it must be psychological rather then neurological. Hence not ME.

mardatha

Can somebody tell me more about this ? I havent heard of it. If it gave me even a couple of weeks of good health so I can enjoy my summer then I'go for it.

daska

http://www.lightningprocess.com/

I must point out that I heard about my schoolfriend's success 4th hand! I don't know how long she was ill, exactly what her symptoms were or whether she remained 'cured'.

mardatha

Oh yes I do know, no quick fixes for ME, I am just nosey as to how it works, thanks !

Karfy

I've tried to read the pages from the NICE case but I don't have any idea what it is about? What is this case? Is someone suing the people from NICE about what they are saying about ME? Feel a bit confused If someone could explain a bit that would be great, thanks

CJ

I don't know if it's just me but I find when I have tried an new therapy of some sort that I feel better for a short while. Could it be the placebo effect or the fact that someone iactually seems to care how you feel that makes you feel more positive? The fact that you are paying them huge sums of money seems to slip your mind at the beginning after years of indifference from your GP a bit of kindness makes a huge difference.
In reality the therapists that have told me they could cure me in the past 25 years should be made to put that in writing!!

judexx

Karfy wrote: »

I've tried to read the pages from the NICE case but I don't have any idea what it is about? What is this case? Is someone suing the people from NICE about what they are saying about ME? Feel a bit confused If someone could explain a bit that would be great, thanks

Have a look at http://www.meassociation.org.uk/content/view/785/ that should make things clearer

Jude