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|TX: 30.07.07 – ME: The Lightning Process
PRESENTER: PETER WHITE
|THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.
ME, otherwise known as chronic fatigue syndrome has no definitive treatment, no cure and there's no clinical test to diagnose it, yet it affects around a quarter of a million people in the UK, including 25,000 children. Well last Friday Radio 4 broadcast the audio diaries of Jane Ray and her 13-year-old son Leo. Leo was diagnosed with ME aged 11 and the documentary charted his battle with the illness. We'll hear from Jane in just a moment but also with me is Professor Leslie Findley who is a consultant neurologist and clinical director of the National ME Centre. Professor Leslie Findley, I said an awful lot about what we didn't know about ME, what do we know - what is it?
Well you're quite right, it's common, simplistically it can be considered as dysfunction of the brain, the nervous systems and the immune system. And we don't know why it happens. We know that some people are genetically predisposed, the common triggering factors are infection and stress. We know that there are several sub-groups - a lot of people think of this as one entity - there are recognisable sub-groups but we're not clever enough yet to have a dip stick test to separate them.
And when you say we know who's likely to get it, can we actually describe people who are more vulnerable?
Yes we can, I mean there are certain - certain people having a certain history of certain conditions - asthma, eczema, hay fever, migraine, depression, anxiety symptoms, people who are working in unacceptable conditions, people who are under stress. To diagnose it one has to exclude other causes of fatigue and the most important thing is getting the correct diagnosis at the beginning - the sooner the better.
Right, well we'll hear much more from you soon as well, do stay with us. Jane Ray, a BBC employee, is with us as well and first here's an extract from Jane's audio diary, the first voice you'll hear is her son Leo.
Dr Kramer, who's a psychiatrist, thought I should come up with a name for my body.
It occurred to me that this is an opportunity to distance Leo from his symptom and so since the symptom occupied his whole body the body would have to have a name separate from the occupant of it, he chose the name Rusty, which is really very comical.
I chose the name Rusty because my body feels well to be frank rusty.
How I remember it was Leo having a bog standard chest infection, he had a nasty flu type virus with a temperature that went to his chest and was clearly unwell for about three days and then appeared to be coming round from that. And we took him out to see a Harry Potter movie. And what I remember vividly is at the end of the movie the lights went up and Leo was sort of sitting there, looked at me in this little croaky voice and said: "Mum, nothing works. I can't move." We'd just been watching this kid's movie with these weird creatures, the dementors, who are evil beings that just swoop over somebody and suck the innards out of their victim and it was almost as if like the dementors had swooped over him and scooped him out.
When I go to the hospital I see two doctors, one is a body doctor called Dr Robbins, who looks at the more physical side of these things and one is Dr Kramer who is a mental doctor, a psychiatrist.
CLIP FROM LEO'S DOCUMENTARY
ACTUALITY - IN DOCTOR'S OFFICE
...you say that - I'm being quite serious - you said you would like to see the back of doctors but actually would you?
Dr Kramer's technique is to kind of shock me into saying interesting things.
ACTUALITY IN DOCTOR'S OFFICE
... but you feel terrible.
Tell me about it.
I'd rather not.
I'd rather you did.
ACTUALITY AT HOME
Right you've got to ask me some questions now.
Okay mum. What would be your favourite wheelchair colour?
What for you or for me?
One for you and one for me.
For you I can see why you'd like...
No but what would you like me to have?
I suppose it depends on the model. I mean this is weird for me to be talking about this Leo because I never imagined that your first set of wheels would be quite like this. From when you were a baby you know I sort of thought how much you loved cars and I thought one of these days he's going to get himself a set of wheels. I didn't imagine it would be a wheelchair. I feel a bit freaked out by that.
Can you just choose a colour please.
ACTUALITY - WITH CURTIS
Hello Leo, I want to know if you've noticed any changes that I've made other than what I'm wearing.
I have a friend called Curtis who has ME and that's kind of how we got to know each other.
ACTUALITY - WITH CURTIS
You're more energetic, as in you Curtis.
And would you like to be more like that?
Okay I'll take that as a yes.
No as Youes.
Okay would you like to know how to do that?
I don't really care if I know how to be energetic, just as long as I am.
So are you saying you want to be more energetic.
He said yes if you didn't quite catch that.
Well basically it's called the Lightning Process.
Ah is it painful?
No you don't get struck by lightning, it's called the Lightning Process because it's so quick.
ACTUALITY - LIGHTING PROCESS
So welcome today to the Lightning Process.
Today, let's just tell you about the structure of today. What we're going to do is identify where you are in terms ...
ACTUALITY - LEO AND MUM
We seem to be in the garden Leo, why are we in the garden in the rain in the middle of the night?
Because I'm here to play football.
You're going to play football in the garden.
I feel much better. Hopefully I won't just go crash and never feel better again but yes I feel much better.
Just part of the documentary - Leo, Rusty and ME - which was first broadcast on Friday and you can listen again through the Radio 4 website if you want to hear the whole thing.
Jane Ray, first of all, I mean that happened - the actual Lightning Process treatment - in June I think, how is Leo now?
Yes he's six weeks on and he's doing jolly well.
So that's - but you see what startled some people, we've even had e-mails about it, one from Ros Martin, saying that you know that very sudden end and it could be confusing, could be misleading, could give people the idea this was a miracle cure.
It was like that and that's the astonishing thing - it was as quick as you hear it. We had delayed the broadcast because our executive producer said - you know Leo has been sick for nearly two years now and there isn't a lot happening, there's not anything that I can hear that is perceptibly hugely improving for Leo after all this time. And I said - Well look I'm very sceptical about this but we have eventually decided to - after watching Curtis's improvement over six months - to do this thing called the Lightning Process and the decision was made for better or ill, we would record it and that would for better or ill be an end to the programme.
Because you had tended to shy away from alternative treatments hadn't you.
We had, we'd been very well supported in the hospital, we'd had two excellent consultants who worked together and saw Leo together, you heard Leo talk about them - his body doctor and his mental doctor. And that had supported us enough to feel that although occasionally I found myself stocking up with Coenzyme Q10 because I'd read something about it or Omega 3 or 6, it kept us away from the plethora of alternative cures out there and gave me somebody to talk to about this. So I was surprised when I mentioned the Lightning Process to Leo's consultant and he said - Ah, I think he might be ready for this.
Okay, we're not going to talk exclusively about the Lightning Process because there are lots of other things to say but this could be quite puzzling for the audience, for example. Also with us is Gerri De Vries, who's a practitioner for the Lightning Process. Gerri, I mean it does not emerge from that and perhaps it couldn't from a documentary how it works, what can you tell us about how or why it works?
Well what I'll say firstly is the context for it. It's a three day training programme and what it allows people to do is make some very powerful changes in their life and health. It's been designed by an osteopath - Phil Parker - and he then has gone on to train other practitioners.
But what does it do? If I had a treatment for a medical illness people will tell me what medicines I'm taking, if I'm curious enough to ask - what effects they will have, how long I need to take them. What can you tell me about what happens in this process?
Well what I would say about it again is it's a three day training programme, so part of Phil's background, apart from osteopathy, is an NLP in life coaching - that's a component but not all of it. It's very important to know that it does really require people to put in place what they've learnt to make it effective for themselves and they need to be ready to do that kind of work.
So are we actually talking about a treatment which is, to some extent, self motivating?
I'm glad you asked that question because I want to make it very plain that it's not implied that it's a psychological illness in any way. However, it does require people to be ready to do the work, as they would for any other programme such as CBT or lifestyle management or learning French, for that matter.
CBT, sorry jargon?
Yes thank you. Cognitive behavioural therapy, which is another approach.
I want to bring in Professor Findley, if people came to you how would you describe this treatment and would you advise it?
Yes I think what Gerri says is absolutely correct - if some people are ready for it, I wouldn't advise it across the board for everyone. What you have to do - every patient with this condition is an individual and he has to - he or she has to be analysed and we treat the condition by treating those factors which are perpetuating the illness in that person. And there are some factors which the Lightning Process and similar procedures will influence and influence for the better.
Right but who will it help? We've had this e-mail from Isabel Bennett, it says: I did it last September, made some progress but then relapsed very severely in March and have been virtually housebound since then.
Well who will it help? It will help those who are ready to receive it. It will help those whose subconscious or conscious stress responses are perpetuating the illness. Now ...
I'm still finding this difficult to follow and there are other things we want to get from you but that's really quite difficult - because that's almost saying you're causing the disease yourself you have to be taught how to stop doing it.
No it's not saying that at all, in fact no one's causing this disease. But there are factors which will perpetuate it. For instance: If somebody's in an unacceptable and stressful relationship their condition will not improve because they're under external stresses.
Right, so Gerri de Vries what actually happens, I know you can't do the whole three days but what happens because we could only get - we only get 30 seconds of that from the documentary?
I understand that and again I go back to the fact, as you've said, it's a three day training. The context is the use of neuro linguistic programming in part, we also do look at things like how people balance their lives, how they work with their bodies, how they think. Again though it's not a psychological....
A neuro linguistic programme? I mean that is what using words, phrases, things to motivate yourself?
Understanding that there's a link between the mind and the body and the physiology that we have as a response to the way we think is a powerful tool for our ...
I think Leo would describe this - when he was ill he used to say - Mum, my thermostat's on the blink. And now that he's had this training he sort of says - Yeah my thermostat's behaving much better now I've got it voice activated.
That's an excellent way of describing it.
Okay I just want to explore just a bit more then who you would recommend to have this and who not because we've had Isabel Bennett's point and we've also had an e-mail from Ros Martin and both expressing this worry. So how do you select, how do you decide who should have this treatment and who not?
There's actually two things I'd say about that, one is that Phil Parker has just last week produced a book called An Introduction to the Lightning Process and that will help people decide if they want to apply. There's also an application form which allows first of all the person to assess for themselves whether they're ready to put the kind of work that they will need to do but I'm sure Leo would agree he had to put work in.
Yeah absolutely, there was a stage - I mean again the thing that characterised Leo, he had a name for his body, he called it Rusty and it was very apparent that Leo initially felt he had absolutely no control whatsoever over Rusty.
Also in Newcastle with us is Trish Taylor, who's chair of the Trustees and Action for ME and was herself diagnosed with ME 10 years ago. You've got some concerns about the Lightning Process Trisha and what's your reaction to what you've heard so far?
Well first of all good afternoon and can I personally thank Jane and Leo for what was really a very powerful programme and I think has done a tremendous amount in pushing the understanding of this illness and its impact on young people and families. I thought the programme was brilliant because it was so well balanced with the mainstream treatment - Rusty - that Leo was getting and that he'd had a whole range of treatments before he moved on to the Lighting Process. I'd just like to sort of simplify things really about using the word "ready". Ready can mean psychologically ready or in lots of cases with this illness it actually means that people are physically well enough to undertake it. Now the majority of people with this illness, until they are sort of coming out of the other end of it, physically aren't well enough to attend three day conferences, they're physically not well enough to go out of the house in some cases ...
But hang on we heard throughout the documentary that Leo was often unable to get up in the morning, so I mean does that mean Jane that he was recovering already to some extent when he had this treatment?
After the first six months he was starting to have some almost imperceptible changes, which meant that he wasn't bedridden, as I know that a lot of ME patients are. So it meant he could physically get to the place and he could physically - he could mentally cope with taking on board what he was being told, which again a lot of people are not in a position to do.
It does sound as though it's very hard to define exactly what this is. I need to ask Professor Findley about what other treatments are available and other processes because actually although we didn't actually hear about all that many in the programme because Leo didn't - on the whole he had two doctors dealing with mind and body but we didn't hear about other processes, what's available?
Well can I just say that you're asking the question when and why and how should we use the Lightning Process, the answer is we don't know, the research has not been done, there have been no controlled clinical trials.
Does that mean we don't know why it works?
Well there are many things in medicine we don't know why they work but we still use them. The fact is that we're just doing pilot studies, we're at the very beginning of exploring this form of treatment. But this is one of many treatments. People with chronic fatigue syndrome, ME, are manageable, they can be treated and what you do is look for the symptoms which are perpetuating that illness. It may be pain, it may be sleep disturbances, it may be auto-psychological states, it may be allergies. Now on a 10 minute programme it's impossible to go through every single treatment which is used for individuals because this is a huge area of medical dysfunction. But you treat that person as an individual, looking for the factors which are perpetuating in there.
Just very briefly, I think we'll probably have to concentrate on Jane for this one, there is this concern about it being a - in some ways dismissed as a psychological illness or the worry that it will be - with all the jibes about yuppy flu in the past - what's your - having been through this process what's your feeling about what it is?
I think it's a useful management tool and it can work extremely well. I mean based on my own experience of watching Leo - of getting Leo back, it's worked well for us. I am very, very aware - I think there's an awful lot of pain and anguish has been caused unnecessarily. In 1969 the World Health Organisation first classified ME as a neurological disease and yet there are still people who would want to say that this is all in the mind, I don't think the Lightning Process has ever said that and you hear in the programme his trainer say I know it's a real illness because I've been there myself. But what goes on with the mind and what goes on with the body are never too far apart.
I need to stop you there, your process Gerri de Vries is three days, ours is only 14 minutes or something like that. Gerri de Vries, Professor Leslie Findley and Jane Ray and Trish Taylor - thank you all very much and good luck to Leo.
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