Petition to silence Esther Rantzen

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signed it! silly cow, it's the third time she's claimed her daughter has been 'cured' by different means

she also stated to the press that 80% of M.E. patients recover - I believe the figure is actually 5-10%

you'd think the patron of Action for Young ME would be circumspect enough not to repeatedly promote outrageously expensive, questionable commercial 'cures' to the media but she does it every chance she gets - wonder how much she's being paid.
 

dipic

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Sorry for what might be perceived as pessimism and being quite blunt, but an online petiton isn't going to do jack. I don't know why anyone might think it would.

And as much as I would love to hear, or rather not hear her speak of the stupid Lightning Process ever again, she really has every right to...
 

Jenny

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I think you're right dipic - and knowing what she's like she'll probably be outraged that anyone should try to silence her and do even more to promote the LP.

So the petition could be counterproductive.

Jenny
 

kurt

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A better approach would be to conduct and publish a survey of the LP outcomes.
 

Kati

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The Lightening Process, would that make me lose weight??? hehe
 

Quilp

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This is an astonishing. I remember when she used to 'marginalise' those with M.E along with that other paragon of intellectual might, Richard Littlejohn ( yes that really is his name ) during the 1980's. Her daughter then became ill, wheelchair bound, and Esther Rantzen does a U-turn of such alacrity that some such as myself didn't know whether to love or loathe her ( please don't worry, i have in my own mind, settled that matter )
She used her position as a talk show host to talk about the illness, carried out interviews, wrote in newspaper columns. The only think missing was a change of name and a road to Damascus.
Some twelve years later she announces to the world that the Lightning Process has cured her daughter. As Richard Littlejohn used to say, 'you couldn't make it up'

Kind regards, Mark
 
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Gerwyn

Guest
A better approach would be to conduct and publish a survey of the LP outcomes.
I could not agree more concentrate on the science control groups p value and dont people get away with the word research without asking them to expand--was it scientific etc------ and concentrate on objective measureables and not the diagnostic label which is meaningless
 
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Gerwyn

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The lightening process is based on a theory of sympathetic hyperactivation this would happen if the hpa system was elevated. Unfortunately for them all the scientific evidence states that the hpa axis is depressed so that the parasympathetic system is king.also there is no scientific evidence that it works

Someone ask the Rantzen woman to explain this-----does she not know about remission in ME
 

Jenny

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The lightening process is based on a theory of sympathetic hyperactivation this would happen if the hpa system was elevated. Unfortunately for them all the scientific evidence states that the hpa axis is depressed so that the parasympathetic system is king.also there is no scientific evidence that it works

Someone ask the Rantzen woman to explain this-----does she not know about remission in ME
Not sure what you mean Gerwyn. What research is there that shows the parasympathetic system is king? (Assume you mean overactive.) Most of the literature I've read on this suggests that our parasympathetic systems are underactive within a disregulated HPA axis- and tests show that in me.
 

Esther12

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I'm in East Sussex, and recently read that I could get the NHS to pay for Lightening Therapy here. Anyone know if this is true/ done it?

If there was a practitioner really near me, I'd give it a go. It sounds like a rather nasty con, but I'd still give it a go. Some NLP and hypnosis stuff is interesting - I'd be curious to see what the sessions were like.

edit: Anyone else read the Health Minister talking about LT at the last ME Parliamentary meeting? "This is something I know quite a lot about." *sigh*
 
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Gerwyn

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Not sure what you mean Gerwyn. What research is there that shows the parasympathetic system is king? (Assume you mean overactive.) Most of the literature I've read on this suggests that our parasympathetic systems are underactive within a disregulated HPA axis- and tests show that in me.
The literature persistently shows a hypoactive hpa axis in ME This shifts the autonomic nervous system towards the parasympathetic end---the converse appears to be true in FM at least in some studies.Sorry about the shorthand .I can find the references if you like It might take a day or so!
 
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Gerwyn

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Hi Jenny I,ve done some digging and the dysfunction in the HPA axis is not hypoactivity per se but a diissociation of the hypothalamus and the adrenal cortex and pituatary so the sympathetic system is virually non functional but so is the parasympathetic control so neither systems are switched on appropiately when they shpuld be---You were right the parasympathetic system is apparently underactive but at the core is this dissociation in the axis Iin any event the central assumptions of the Lightning process are plain wrong
 
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thefreeprisoner

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As I understand it, the Lightning Process addresses thoughts that create stress.
Dr Judy M suggests that XMRV may be activated by stress hormones.
So, I can see how it might work for some people.
I'm glad it seems to have brought relief for a lot of them. A friend of mine with 10+ years ME tried it and said it helped a little bit.

BUT to suggest that the Lightning Process is a cure for 80% of ME sufferers is going WAY beyond. Especially seeing as there are blatant vested interests with it.

Rachel xx
 

Advocate

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Lightning Process unsuccessful experience

It's not hard to find people who had a bad experience with this scheme. Here, for example, a mother writes

On the first day, the trainer made my daughter stand up to learn the process, which was a very difficult as my daughter currently suffers from severe leg weakness. The trainer ignored the fact that my daughter’s legs were giving way while she was trying to learn the process...

On the second day my daughter insisted on sitting down to learn the process. The trainer reluctantly let her, but was not happy and said that she would have to start to challenge her beliefs. We were there to challenge our beliefs; I would not have paid many hundreds of pounds if we were not prepared to do this...

I would love to tell you more but would rather not as after the training we are asked not to talk about what is involved.

We went to the LP with full believe and high hopes. Our trainer accused my daughter of not doing the process properly, and that she didn't want to get better.
 

Bob

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Please don't get me started about the Lightning Process!!!
oh no, i've started... too late...

Esther12, the Lightning Process is definitely not provided by the NHS in East Sussex, although there is a symptom management course provided by the NHS in East Sussex which you can get referred to by your GP.
I've been on the NHS course and they are very friendly people who run it.
We're lucky to get anything on the NHS for ME so they aren't going to pay for us to go on an unproven lightning process course.
(please let me know if you discover otherwise)

The lightning process costs about 600 for a course, here in the UK.
The people who provide it have an enormous beautiful house in the middle of Sussex...
http://www.swallowsretreatanswersme.co.uk/gallery/
I can't believe that these people charge so much to people living in poverty on benefits and own an enormous mansion with vast beautiful gardens.

For your 600 you get about 6 one hour sessions, and there are about 10 people on each course.
If you do the maths... you can work out how they manage to own such a big mansion and why so many people promote the lightning process with such excitement...
Allow me to do the maths for you...
10 people paying 100 each per one hour session (gives them 1000 per session)... fit 4 sessions in per day with 4 different groups (4000 per day)...
4000 per day is 28000 per week, is 121,333 per month, is 1,455,999 (one and a half million pounds) a year for each individual 'trainer'.
For those of you in the USA, i think that's about 900,000 dollars, or a million dollars per year, per trainer.

I do know people who have been helped significantly by the Lightning Process, so we must all be careful not to dismiss their experiences, and to invalidate their personal journeys.
But it does anger me when the Lightning Process is advertised as a cure when there has been zero independent research on it.
Locally, some people have had a positive experience, some no change, and some a negative experience.
There definitely isn't any evidence within my local support group to show that there's an 80% success rate, and even if there was, the patients are self-selecting anyway...
only those feeling motivated, energised and well enough (and rich enough), would be able to attend the courses anyway, so this automatically excludes many who are severely or moderately ill.

The Lightning Process is based on NLP and teaches you to 'stop' your negative thoughts, and to replace them with words like 'i want to feel better, and i move forwards with energy'... something like that anyway...
it's as simple as that... it's a very simple course, but you just have to keep repeating the mantra.

My own personal theory about the successes is that maybe some of us get stuck in a deep rut after years of severe illness and a fear of doing any small activity that might harm us...
I know for myself, I am very fearful of over-stretching myself because of the hideous consequences of a relapse.
So maybe some people get physically better without actually knowing it or realising because they are stuck with fear in a place of inactivity. Some people might still believe that they are severely ill because of a fear to put their bodies to the test and a fear to stretch their self-imposed limits.
And maybe the lightning process might help these people discover that they had actually already physically recovered, without knowing it.
That's just my own thoughts about why it might be successful for some people, and I'm happy for anyone to challenge it, or to disagree.
I realise that this might be invalidating people's personal experiences, but I hope that people can understand my point of view without taking offense.
Until there is independent research carried out, I will find it difficult to understand how the Lightning Process can cure ME.

Also, 'positive thinking' might help people cope with any illness to a certain extent, but the whole concept of 'positive thinking' is something that i've always felt uneasy about.
Personally, it's not a concept that I've ever bought into, because I think it distorts reality, but I don't completely discount it.
I do believe that developing positive emotions is very helpful in many respects for a better quality of life, and maybe positive thinking helps some people with this.
 

IamME

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As I understand it, the Lightning Process addresses thoughts that create stress.
Dr Judy M suggests that XMRV may be activated by stress hormones.
So, I can see how it might work for some people.
must be marvellous for Addisons disease then. Oh wait... it only seems to "work" for controversial "stress" illnesses, funny that.

Sorry it's cobblers. The fact that none of the converted will hear of others' experiences as being progressive through exertion is suspicious, as is the fact not ME specialist of any worth recommends this drivel.

http://hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me

"It is an NLP process that simply switches off the mal-adaptive stress response present in the HPA axis/Amygdala (hence Ashoks 'Amygdala Retraining program'.). For some ME/CFS patients - there are subconsious continual negative thoughts that are triggering the release of stress hormones in the body-and those hormones over long time periods cause a whole host of problems in the body"
NLP = Neuro Linguistic Programming = Yet More Quackery

Maladaptive!

ME doesn't usually come after a long process and there's little evidence of increased stress hormones (which are supposed to be unsustainable over a very long period anyway) in the CFS patients studied FWIW, quite the opposite.

Even if the HPA axis was simply "stuck in a rut" and could be thought out of, there is too much that's unique and serious going on elsehwere in the body to all be simply due to stress/adrenalin. How is it supposed to explain low NK/T cell cytotoxicity? As with official psychobabble theories, any viral infection simply becomes yet another "effect" or merely a trigger fora supposed "mal-adaptation".

"Z, it doesnt matter happy or sad. The Lightning process is nothing more than a simple stop technique that can be found in any NLP/Hynotherapy book for 5. It will help you relax, that is all.

Lightning process is however combined with a promise of a cure, and you are told to keep doing it and you will get better. This leads many people to push themselves way beyond their limits and all the people I have know that did it all crashed badly. Setting themselves back in some cases years."
However if you really read his book [Alex Howard] you will notice that he was in a very unhappy family situation and he got better when he escaped that situation by moving away. In otherwords, did he really have ME? Byron Hyde a leading expert on ME estimates that perhaps 15% or more patients diagnosed with ME actually have anorexia.

Furthermore Alex bases some of his thinking on a book by Nina Markov Assistant "How I cure myself of AIDS" Again I read this book and it turns out she had a desperate infatuation for a man...
To call these type of treatments evil is an understatement to say the least. Gupta of the Amydala retraining program has had a string of companies from dating agencies to property firms, all liquidated. These are get rich quick con men. Indeed Gupta claims to have had ME, but if you track back the time line there are only 8 months in which he could have been ill. And his only qualification is a 10 day hypnotherapy course.
NB Gupta in an interview describes his illness as "burnout", how he "self-taught" himself neurology and how emotions can cause physical illness etc...

Also see:
http://www.sayer.abel.co.uk/LP.html

Note the salespitch lingo in many of those comments eg "I feel like a new woman!" etc.

These people are as much dangerous parasites as the CBT/GET frauds.
 

IamME

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Please don't get me started about the Lightning Process!!
My own personal theory about the successes is that some of us get stuck in a deep rut after years of severe illness and a fear of doing any small activity that might harm us...
I know for myself, I am very fearful of over-stretching myself because of the hideous consequences of a relapse.
So I believe that some people might get physically better without actually knowing it or realising because they are stuck with fear in a place of inactivity. Some people might still believe that they are severely ill because of a fear to put their bodies to the test and a fear to stretch their self-imposed limits.
Also, 'positive thinking' might help people cope with any illness to a certain extent.
I used to think that but don't any more. Some people believe eg. children can make a full recovery, despite official figures that "recovery" is less than 10% or something. Genetic and other research is starting to show predictive biological differences in patients who go on to recover and those who don't, so I'm not convinced it's the same illness (and the much overlooked possibility of remission confuses things further). In order to have the same symptoms when deconditioned or depressed as when having the "active illness", well, that would call inti question the active illness itself, but that isn't the case.

I think if positive thinking helps, people have little reason to be negative in the first place; in other words, it's the gift you give people who are too stupid to realise what they've already got. There are more important practical needs, which aren't being met for many sufferers, especially the severely affected.
 
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Gerwyn

Guest
As I understand it, the Lightning Process addresses thoughts that create stress.
Dr Judy M suggests that XMRV may be activated by stress hormones.
So, I can see how it might work for some people.
I'm glad it seems to have brought relief for a lot of them. A friend of mine with 10+ years ME tried it and said it helped a little bit.

BUT to suggest that the Lightning Process is a cure for 80% of ME sufferers is going WAY beyond. Especially seeing as there are blatant vested interests with it.

Rachel xx
The theoretical base is a hyperstimulated sympathetic system that is not true---its a mixture of CBT abdNLP