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Lightning Process to be Evaluated in Research Study on Children

Sasha

Fine, thank you
Messages
17,863
Location
UK
...and LP needs yet more free advertising why exactly? There are so many other topics the MEA could be covering for us.

I don't think it's the MEA that are covering it - someone just said on another thread that she had phoned the MEA and had been told that AfME had asked for it.

ETA: Oh! Someone just posted a correction and it was actually the MEA that asked for it, not AfME. Sorry!
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
I don't think it's the MEA that are covering it - someone just said on another thread that she had phoned the MEA and had been told that AfME had asked for it.

ETA: Oh! Someone just posted a correction and it was actually the MEA that asked for it, not AfME. Sorry!

That first radio broadcast was a mixture of really awful stuff (from Rantzen) and some really great stuff (from Shepherd and the patients who phoned in). It seemed like a pretty awkward double act, since Rantzen and Shepherd are clearly coming from different angles. I guess the same will be true again, and the two of them must both be talking through gritted teeth some of the time (wow, scary thought, Rantzen gritting her teeth! :eek: :D).

I really don't think the MEA are pro-LP, I'm sure I've seen some critical stuff regarding the trial on their website. I guess it must all just be a compromise: for both of them, getting ME/CFS discussed is a win and if a variety of views are put across that's probably fair enough for the general public to get a rough sense of some of the differences of opinion. I've got to respect Dr Shepherd for being able to sit in the same studio as Rantzen without punching her lights out, after the crap she came out with on the first show. Some of that stuff surely must have wound him up.

I had no idea until I heard all that just how dodgy Rantzen is on ME/CFS; I'd heard people complain about her but I still wasn't prepared for how bad she was. That bit in response to the brilliant listener who phoned in, who said he couldn't afford the LP anyway, where Rantzen replied 'I think there's something similar available on the NHS....' - well, that was a classic.

Hope the next show is a bit better. Rantzen's sure to be annoying as hell again, but even with all of that going on, I'm sure a lot of good points will still get across via Shepherd and via those who phone in. I'll be hoping to see Shepherd interrogate Rantzen about that 60% recovery figure, and query the ethics of the LP trial - I'm hoping that's why the MEA want to do the program again, to get those points challenged...but we shall see...
 
Messages
1,446
The media ME Story last week WAS the UK blood ban and XMRV. That’s what Charles Shepherd was interviewed about on Radio Berkshire on the 1st November.
It was the Berkshire Radio broadcaster Esther Rantzen who diverted the “story” to Lighting Process later in the program.


Many of the complaints to Radio Berkshire asked for a correction of the wrong information Esther Rantzen gave on ME recovery rates (she said 60% of ME sufferers recovered) and to ask for an apology from Rantzen for giving the wrong information on recovery rates and for blatantly promoting the commercial Lightning Process on BBC Radio.


Esther Rantzen has a conflict of interests re Lightning as she is President of the children’s ME charity AYME.

AYME is on the External Advisory Group for the Lightning Trial.

The External Advisory Group for the Lightning Trial is supposed to be independent.

It may be seen that Esther Rantzen has compromised that independence by her on air promotion of Lightning Process.


“In the November edition of LINK Newsletter (Issue 40), the Association of Young People with M.E. (AYME) has welcomed the decision by South West 2 Research Ethics Committee to grant ethical approval for the controversial pilot study around the application of the Lightning Process in children as young as 12.”

AYME is also on the Lightning Trial External Advisory Group
http://meagenda.wordpress.com/2010/...htning-process-pilot-study-in-children-smile/




How come the media Story has been diverted away from the Blood ban and XMRV, and to "for or against" the Lightning Process???
 
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1,446
Most Lightning Trainers commercial websites (including the main Phil Parker Lightning site and that of Alastair Gibson who are the LP Trainers on the Lightning Trial) feature one or more high profile celebrity endorsements of Lightning.


The celebrity endorsement most featured on LP commercial websites (including Phil Parkers Lightning site ) is by Esther Rantzen regarding her daughter Emily Wilcox’s experience of LP the “Saved from a Living Death” story from the Daily Mail.


Esther Ratnzen, who is President of AYME, heard about Lightning from Jill Moss who was founder of AYME according to Esther in – the Daily Mail 2007 (article below) .


Phil Parker’s own main Lightning site:
http://www.lightningprocess.com/ME-CFS-Home/
Find out how Esther Rantzen's daughter Emily used the Lightning Process for her ME/CFS.
Click here for her story.


Westcountry LP Trainer Donna Paris features Esther Rantzen’s 2007 Daily Mail story prominently on her commercial website, described by Donna as a “rapid recovery” story:
http://www.donnaparis.com/
Daily Mail
Esther Rantzen’s moving story
“Read Esther Rantzens Daily Mail article about her daughters rapid recovery from ME with Lightning”


Westcountry LP trainer Lyn Atkins Advanced Lightning Trainer:
Lyn’s site features Emily’s story from the Daily Mail too:
http://www.lynatkins.com/
Esther Rantzen’s daughter Emily recovered using The Phil Parker Lightning Process™
Read Saved from a living death
published by The Daily Mail








Emily Wilcox’s SECOND “ME cure” by Lightning in 2007. Emily’s first “ME cure” was also reported in the Daily Mail in 2001 by Emily herself “How one woman found a cure that worked for her” )


Daily Mail February 2007:
http://www.dailymail.co.uk/health/ar...#ixzz145qtUb7S

‘Saved from a living death’
By ESTHER RANTZEN

Emily revitalised, and Esther, the mother who never stopped believing

For 14 years, Esther Rantzen's daughter Emily had her life destroyed by ME. Trapped in a wheelchair, wasting away, she wanted to die. Now, thanks to radical "mind over matter" therapy, she's cured herself.


“For 14 years I have watched her struggling like a fly in a web while the sticky strands of fatigue paralysed her. Now at last I can say it: Emily is well”.


…“Luckily our consultant neurologist was one of the few at that time - this was 12 years ago - who recognised ME as a genuine illness, and told us that Emily was a classic case. There wasn't much he could do, and he was quite honest about that. He told us that nobody knows what causes ME or how to cure it.
He put her on a management course - to increase gradually what she could do - which she stuck to heroically, alternating two-hour periods of activity and rest all through the day.

But in spite of all her efforts, I watched the illness take over her body. She became hypersensitive to light and noise so that she had to wear earplugs and sunglasses constantly, and we lined her curtains with blackout material.
She lost the capacity to walk upstairs, so we installed a stairlift. When she was unable to walk at all, we got a wheelchair for her. In the end, she spent all day in bed, eyes shut, earplugs in. I used to come home from work and run to her room. She was sheet-white, and her limbs were cold.

Desperate to try and find a way to keep her positive about the body that had become her prison, I would massage her legs, which felt completely lifeless. ME is not officially a life-threatening illness, but this was a living death.”

“When I held her hands they were icy. As I watched the fatigue remorselessly overcome her, and she lay on the sofa each afternoon, and struggled to get up each morning, my heart sank like lead. I had seen all this before. Would we have to install the stairlift again and bring back the wheelchair?”


……“Six months ago we heard about the Lightning Process from Jill Moss who founded the Association for Young People with ME (AYME) and had seen it work well with a member of her family. As explained in Good Health last month, The Lightning Process is based on the theory that ME is an illness that affects the body's capacity to deal with adrenaline. This is the hormone the body releases when stressed - in people with ME the levels are abnormal, and they need to "train" their brain to normalise the body's response.

The first step is to tackle the thoughts that trigger the stress reaction - halfway through a negative thought they have to tell themselves to stop. This stops the stress response, and in theory creates new connections in the brain, stimulating the production of endorphins - feel-good brain chemicals.

At "600, the course - in Crouch End, London - wasn't cheap. But Jill doesn't believe in miracle cures any more than I do. She thought it was worthwhile, so Emily, now 28, enrolled. It took three days.

On the day after Emily finished the course I went down to our kitchen and found she had got there before me. There was a sparkle in her eyes I hadn't seen since she was 14. I asked what had happened. "I've done the Lightning Process about 30 times since I got up," she told me.

I continued to watch her all morning. Every few minutes she would talk to herself, coaching herself to withstand the fatigue.
It's a process that takes effort, and I understand that it doesn't work for everyone.

But with joy and relief I am now confident the Lightning Process has worked for Emily. After six months she has started a job, working with children. She has a full, active social life.

I can give up being irrationally, stupidly positive and optimistic, because now, at last, I have a good reason. Emily is well.”
 
Messages
1,446
Emily's first "ME Cure" in the Daily Mail October 16th 2001:

Read more: http://www.dailymail.co.uk/health/article-79042/ME-woman-cure-works-her.html#ixzz14QQ7KbKT

ME: how one woman found a cure that works for her

by EMILY WILCOX, Daily Mail



Emily Wilcox, the 23-year-old daughter of Esther Rantzen, who was diagnosed with ME at the age of 17, reveals what she believes worked for her.


After years of suffering ME, Emily Wilcox can go to work and socialise…..’


.....‘Cognitive behaviour therapy, a structured form of positive thinking taught by a trained therapist, is mistrusted by some ME sufferers. But as well as the physical symptoms of ME, there are other issues such as sleep loss, anxiety and fear. CBT tackles these and so can remove some of the barriers to recovery.

After a couple of years living with ME, you are likely to feel gloomy. This happened to me and makes me sure that depression is a symptom, not a cause, of the illness.

Graded exercise must be tailored to the individual patient's health. It can mean sitting up in bed, walking across a room more often during the day and building up your walking. This is a practice that has been used by my consultant for years at the National ME Centre in Essex.

When I was bedbound, graded exercise at first meant being lifted from my bed to sit in a chair for 15 minutes a day. Over the next year, I built up my strength until I could walk around the house unaided.

Sometimes, they reach this stage precisely because they have exercised inappropriately, perhaps doing aerobics to try to revive their energy when they needed to rest.

In my case, when I first noticed my sluggishness, I sweated it out in the multi-gym but made myself only more achy and tired. In fact, gentle exercise started to stimulate my energy when I alternated it with half-hour rests throughout the day.’


......“If, five years ago, someone had given me a magic pill that cured me totally, I would have put on my knee-length boots and joined my friends to dance the night away - leaving my anxiety and depression to languish on the sofa without me.

As it is, my body has healed itself without much medical intervention. If only the doctors knew how.”

Contact the Association Of Young People With ME, tel: 01908 373 300; www.ayme. org.uk.
 
Messages
1,446
Emily also wrote that she was "75% recovered" in the year 2000 - in the Daily Mail:

The Daily Mail June 6th 2000:


I no longer feel like a freak” Emily Wilcox

http://www.thefreelibrary.com/I+no+longer+feel+like+a+freak.-a0109631398


‘For they are signs that she is finally recovering from her very public, six-year battle with ME - Myalgic Encephalomyelitis

myalgic encephalomyelitis - a condition now more commonly known as Chronic Fatigue Syndromechronic fatigue syndrome (CFS), collection of persistent, debilitating symptoms, the most notable of which is severe, lasting fatigue. In other countries it is known variously as myalgic encephalomyelitis, chronic fatigue and immune dysfunction syndrome,

It was this crippling illness that reduced Emily from a lively, attractive and intelligent young girl into one who didn't even have the energy to get out of bed, or drag a comb through her long, brunette hair.

Today, six years on, her recovery appears quite remarkable. For the first time since she was 16 she can walk more than a few steps down the road, travel on the Tube, go shopping or even enjoy a coffee out.

She is overjoyed when she tells you that last week she walked into a pub like a normal person, instead of being pushed in a wheelchair.

Exhilerated with her progress, she now looks forward to the day when she will go out on her first proper date.

THIS is the happiest I have been since I was a teenager, before I developed ME. Other things that people take for granted fill me with absolute euphoria.

Watching television in my own room, plugging the kettle in the wall, reading a book, it is all fantastic, because for years I was incapable of doing anything,' says Emily, who adds that she is now 75pc recovered.’
 
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1,446
The Phil Parker page that has been taken down recently - it is the porspectus for a healing course that that Phil Parker taught through his European College of Holistic Medicine, that describes how he learned how to "step into peoples bodies", and how he taught beginner healers to go poking around in clients past lives looking for curses with the aid of tarot cards.


A few years ago Phil Parker ran beginners holiday healing courses in Spain (20 hours over 5 days). Parker advertised those intro courses as "a powerful and magical program" and “A pathway to a new career”... and issued a certificate. The courses were run as part of Parker’s The European College of Holistic Medicine Healing Course and described as:

‘A self-development course- helping you to realise your potential and natural healing powers, in order to benefit you and those close to you.’

http://web.archive.org/web/20080326165601/http://www.healinghawk.com/prospectushealing.htm


and

‘A pathway to a new career…’


Mr Parker claimed that ‘His personal healing journey began when, whilst working with his patients as an osteopath. He discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct!

He says: ‘He further developed this ability to step into other people’s bodies over the years to assist them in their healing with amazing results. After working as a healer for 20 years, Phil Parker has developed a powerful and magical program to help you unlock your natural healing abilities.’

And used the “Are you Ready” idea as a selling hook:
‘If you feel drawn to these courses then you are probably ready to join.’



‘Module’ 6 of the course (2 hours) introduced the use of auras for diagnosis of a client’s problems.... astral bodies ….organs as metaphors …



In ‘module’ 8 (2 hours training) beginner healers were encouraged to explore their hapless clients past lives by using tarot/medicine cards to find out if their clients had been 'cursed' in a past life:

"If a client comes to you feeling they have been cursed, you may need additional information about their past lives in order to help them and this is where the use of tarot/medicine cards is beneficial".



In 20 hours the beginner healers learned about spirit/healing guides, chakras, auras, dowsing, energy clearing, meridians, past lives, divination, medicine cards, tarot, meditation, creative visualisation.... and were encouraged to wander around clients past lives looking for possible 'curses'.


Even experienced healers were horrified at Phil Parkers irresponsible Fast-Track intro to 'healing'.


Parker also used a version of his "Are you ready?" selling line to 'hook' his healing course customers back to do/buy more courses...."If you feel drawn to these courses then you are probably ready to join".


Selling NLP brief therapy for serious diseases (and denying responsibility for it not working by calling it 'a training') must be much more profitable than teaching the A to Z of healing lore at breakneck speed.


Does Esther Crawley, Bristol University and the NHS really understand what it’s getting into by getting involved with Phil Parker’s latest business venture?
 

Dolphin

Senior Member
Messages
17,567
Hope the next show is a bit better. Rantzen's sure to be annoying as hell again, but even with all of that going on, I'm sure a lot of good points will still get across via Shepherd and via those who phone in.
Do we know if she'll be on? She's not the usual presenter.
 
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1,446
Please Repost

Clarification from the MEA about Radio Berkshire interview on the 11th Novemmber

http://www.meassociation.org.uk/?p=2921


BBC Radio Berkshire, 11 Nov 2010. Corrected information about Dr Shepherd’s interview.
by tonybritton on November 10, 2010

We reported yesterday that MEA medical adviser Dr Charles Shepherd will be interviewed on BBC Radio Berkshire tomorrow morning (Thursday) at about 9.40am during the Anne Diamond Show.

We have now double-checked with the radio station and discovered that, while Dr Shepherd will be interviewed by Anne Diamond at 9.40am, this will be a pre-recorded interview and that the item will not go out until about 11.45am. Anne Diamond hosts the mid-morning show on BBC Radio Berkshire between 10am and 1pm.

Our apologies for the misleading information.

BBC Radio Berkshire can be listened to live on the BBC website at http://news.bbc.co.uk/local/berkshire/hi/tv_and_radio/
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
It's still not clear what the focus of this "follow-up" will be or whether any other contributors apart from Dr Shepherd are being recorded. My understanding is that the presenter, today, will be Anne Diamond.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
Yesterday, I sent this letter in to the producers. If I don't receive a satisfactory response (and I don't expect I will) I shall take my complaint to the next level:


berkshire.online@bbc.co.uk


Re: Broadcast in which Esther Rantzen discussed ME/CFS and the new UK ban on blood donation by everyone with the illness with ME Association medical adviser, Dr Charles Shepherd, BBC Radio Berkshire: Monday 1 November


I am writing to complain about Ms Rantzen's handling of this broadcast.

I understand that Ms Rantzen was standing in for the usual presenter, Ms Anne Diamond.

I have the following concerns:


1] Ms Rantzen was brought in to present a programme during which the ME/CFS blood ban would be discussed.

Ms Rantzen has a number of COIs in relation to ME/CFS.

Ms Rantzen is President of AYME (The Young People's ME Trust).

She is known to promote the Phil Parker Lightning Process in the media.

The patient organisation of which she is President has for its medical adviser, Dr Esther Crawley.

Dr Esther Crawley is about to commence recruiting participants to a controversial pilot study where the Lightning Process will be applied to children aged 12 to 18 years old, for which Dr Crawley is Chief Investigator.

The patient organisation of which Ms Rantzen is President has been involved in the development and planning of this Lightning Process pilot study.

The patient organisation of which Ms Rantzen is President has a seat on the "Expert Advisory Group" for this Lightning Process pilot study.


2] I have scrutinised a partial transcript and note that during the broadcast, Ms Rantzen, on several occasions, sought to promote the Lightning Process to the public and to a contributor to the programme calling on a phone-link and that she also directed him to look at the internet for more information on the Lightning Process.

Ms Rantzen also made claims for recovery rates of patients with ME/CFS for which she offered no supporting evidence.


3] In my opinion, Ms Rantzen gave misleading information in relation to the blood ban and its application to individuals.

In response to the caller's concerns about the cost of the Lightning Process, Ms Rantzen is reported as having said, “I think there may be an equivalent on the NHS”.

This is incorrect, there is no equivalent available on the NHS.


In the light of Ms Rantzen's COIs and given her blatant promotion of the Lightning Process during a BBC broadcast I do not consider that Ms Rantzen could be considered to have been a neutral presenter.

I do not consider that she should have used the issue of the ME/CFS blood ban to promote a commercial "training" programme marketed by Phil Parker and his Lightning Process trainers/coaches/practitioners during a BBC broadcast.

I consider that the BBC was negligent in its failure to take Ms Rantzen's COIs into consideration when selecting a stand-in for Ms Diamond and that Ms Rantzen had taken advantage of her position, as presenter, to introduce and promote the Lightning Process to the public during an item, the focus of which was the recent UK blood ban for ME/CFS patients.


I would welcome your responses.

I also request a copy of the BBC's policy on the declaration of COIs in its presenters and a copy of the BBC's policy on the promotion of commercial goods and services by BBC presenters during broadcasts.

Sincerely,

etc
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
Location
UK
From Tony Britton on MEA Facebook Wall


Tony Britton I have just found out that the pre-recording this morning will be Anne Diamond interviewing both Dr Shepherd AND Professor Leslie Findley.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Tony Britton

‎15 minutes now recorded with Anne Diamond and Leslie Findley.

Briefly discussed ME/CFS in general, neurological classification, need for biomedical research and sub-grouping, MRC Expert Group, Lightning Process and Prognosis.

I think it went OK.

Due for transmission at about 11.45am
 
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1,446
Phil Parker wrote (on Twitter) he gave a seminar on Lightning at Bart’s Hospital in May this year.

PhilParkerLP Tweeting on 19th May 2010:

“enjoyed presenting a seminar about the Lightning Process to St Barts Hospital today” 1:35 PM May 19th via web

http://twitter.com/philparkerLP


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Barts is home of PD White, though the other Barts ‘CFS’ clinic which is run by Maurice Murphy (where Professor Pinching used to be the lead) seems to be the treatment centre.
 
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1,446
"What on earth are GOSH and Barts doing giving LP a platform?"

Great Ormond Street Hospital and Barts and Dr Esther Crawley at Bristol University and the Min Hospital give Lightning a platform because there appears to be no intention of dropping CBT/GET as national treatment policy in the UK - Lightning is another therapy the NHS can fall back on. There appears to be an absolute determination in the UK to continue with the double speak that goes - Yes, ME is a physical disease, but it must not be treated as a physical disease.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
"What on earth are GOSH and Barts doing giving LP a platform?"

Great Ormond Street Hospital and Barts and Dr Esther Crawley at Bristol University and the Min Hospital give Lightning a platform because there appears to be no intention of dropping CBT/GET as national treatment policy in the UK - Lightning is another therapy the NHS can fall back on. There appears to be an absolute determination in the UK to continue with the double speak that goes - Yes, ME is a physical disease, but it must not be treated as a physical disease.

GOSH is a particular worry, being entirely a children's hospital.
 

Dolphin

Senior Member
Messages
17,567
"What on earth are GOSH and Barts doing giving LP a platform?"

Great Ormond Street Hospital and Barts and Dr Esther Crawley at Bristol University and the Min Hospital give Lightning a platform because there appears to be no intention of dropping CBT/GET as national treatment policy in the UK - Lightning is another therapy the NHS can fall back on. There appears to be an absolute determination in the UK to continue with the double speak that goes - Yes, ME is a physical disease, but it must not be treated as a physical disease.
Of course one of the problems is that the vast majority of the staff in the clinics/services are non-doctors: people who can't prescribe medication or request tests. I think this is a problem as they will be attracted to non-pharmacological approaches which a lot of them mean - blame the patient for not getting themselves better.