From the Daily Mail

[Wildcat]

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Letter re: Daily Mail article by Esther Rantzen on 12th Feb. 2011
Posted on February 12, 2011 by Frown at Smile

Letter to Ethics Service 14th February 2011:


....." 1. I contend that therapeutic value from SMILE by use of The Lightning Process is promised to study recruits by virtue of the advertising for the Lightning Process on the LP websites and sales literature, and in mainstream media by the President of AYME herself. This is not a study in which participants do not know whether they are receiving the product being tested, nor is there a control group for this pilot study.

2. I also repeat that there is financial inducement to participate in SMILE as the Lightning Process is sold upwards of £600 – people have paid thousands when they have been told that they need more sessions to make it work.

In the article, Emily Rantzen herself admits,
“In the years since my recovery in 2006, I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to “fake it til I feel it”. ".......

https://frownatsmile.wordpress.com/...l-article-by-esther-rantzen-on-12th-feb-2011/

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[Snowdrop]

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Letter re: Daily Mail article by Esther Rantzen on 12th Feb. 2011
Posted on February 12, 2011 by Frown at Smile

Letter to Ethics Service 14th February 2011:


....." 1. I contend that therapeutic value from SMILE by use of The Lightning Process is promised to study recruits by virtue of the advertising for the Lightning Process on the LP websites and sales literature, and in mainstream media by the President of AYME herself. This is not a study in which participants do not know whether they are receiving the product being tested, nor is there a control group for this pilot study.

2. I also repeat that there is financial inducement to participate in SMILE as the Lightning Process is sold upwards of £600 – people have paid thousands when they have been told that they need more sessions to make it work.

In the article, Emily Rantzen herself admits,
“In the years since my recovery in 2006, I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to “fake it til I feel it”. ".......

https://frownatsmile.wordpress.com/...l-article-by-esther-rantzen-on-12th-feb-2011/

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And there is the truly sad part.

There are plenty of people who had either gradual onset of symptoms or severe initial onset but recovered some function who spent the first while pushing through. As we are well aware, this can go on for a decade or more. I spent 15 years or so denying that my pushing was what was making things worse. It doesn't on the face of it make sense.

Some people may not have had ME. Some may indeed have been lucky and recovered. Some people will feel betrayed down the road if the s**t hits the fan and their health plummets. Then there will be a very angry backlash perhaps.

A possibility. . .

 

[Wildcat]

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As you say so rightly, 'pushing through' inevitably makes you more ill. Its tragic when the deterioration from 'pushing through' is long term. Its often the lack of (or not enough) practical support that means people push on. Early on, before the person even knows what they are suffering from, is a crucial time .... because in most peoples lives its simply not possible to just stop, without losing their jobs and homes, and when the sick person is a parent there is a whole other area of responsibilities. There is a point of illness where "pushing" is physically impossible. I do think an early diagnostic test would be so important.

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Emily's "recovery" in 2006 wasn't a recovery. She had done Lightning Process, which tells people to say they are well when they are not, it bans realistic thoughts about one's illness and dismisses them as "negative". Lightning teaches people to overide pacing. People who have done Lightning tell others that they have recovered when they have not (including children who had done Lightning, as described by Jane Colby of the Tymes Trust childrens charity at the 2009 Royal Society of Medicine Conference.)

When Emily was diagnosed with Ceoliac in 2011 she no longer had to keep up the pretense of being 'recovered' due to doing Lightning, whilst
"secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to “fake it til I feel it”.

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[manna]

On the other hand, at the first meeting with my consultant, Professor Leslie Findley, he said ME is a self-correcting illness. Only 20 per cent of patients remain trapped in it for good. Of the remaining 80 per cent, 60 per cent make a complete return to health and the others have active lives, on condition they pace themselves.

really? 60% make a full return to health? i thought it was more like 2%. having been on-line for 8 plus years ive only encountered about 3-4 people who seemed to have a full return to health, out of 100's at least.

For a long time, I didn't believe these statistics, but now I am forced to admit that Professor Findley's optimism was justified. I have come back to life. I am so improved that I can work, use public transport - and even stay out late sometimes.

"even stay out late sometimes"---not recovered then. ive noted that many get some return of activity following the first few years in a dark room etc, but really ive come to see that as your body stopping fighting. you feel rough because your body still has the intelligence to recgnise its in a mess...this goes to a low level state of panic/constant anxiety with less fatigue...because your body no longer has the intelligence to feel the mess its in. during recovery i go full blown me/cfs prior to making big gains. i recognise me/cfs discomfort, other than bad allergies, as an increase in physical intelligence.

have watched her recover more than once too. some ways it s like she was not allowed to be poorly.

 

[Insomniac]

I don't like the article article.

It's just some waffle saying that CBT helps and that you gradually get out of this illness. A pack of lies.
Where is their citation for that huge recovery rate from?
The only good thing about it is that it emphasises that patients are really suffering,...and that case when they threw a girl into a swimming pool.

I would like an article that sums up the research that shows abnormal amounts of cancer and heart problems, autonomic dysfunction, some of Hokama's research in ciguatera epitope, that exercise research on VOX capacity that we had here in PR.

 

[Sidereal]

On the other hand, at the first meeting with my consultant, Professor Leslie Findley, he said ME is a self-correcting illness. Only 20 per cent of patients remain trapped in it for good. Of the remaining 80 per cent, 60 per cent make a complete return to health and the others have active lives, on condition they pace themselves.

99.9% of statistics are made up on the spot.

 

[alex3619]

99.9% of statistics are made up on the spot.

I prefer Sturgeon's Law - 90% of everything is shi*

My understanding is that in the shorter term a high percentage recover., which some argue is as high as 10% but I am suspicious of this figure. That's probably the percentage of patients who stopped seeing the doctor. To make it worse, my understanding is that everyone is at risk of it coming back.

Yet in longer term patients I think recovery is under 1%.

Now there are many treatments that get substantive improvement, with various figures up to 66% or so (Rituximab). Yet that improvement covers a range, and its not clear that cure is even possible. Putting the illness into remission, or making it subclinical, seems to be the reality.

Of course the bar for what is considered subclinical is probably too low. When people have to substantially change their lifestyle to avoid being sick again they were not cured. When people can resume something resembling a normal life but still have daily symptoms they are not cured.

 

[Min]

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barbc56 wrote:
".....Then I thought the mother was Esther Crawly who's doing the LP study!"

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LOL .... not surprising with ME brain and Esthers all over the place! But it gets worse. In fact Esther Rantzen (the mother of Emily Wilcox) is President of the children's charity AYME.... whose medical advisor is Esther Crawley.

AYME officially supported the SMILE Trial Lightning study by Esther Crawley (are named in the protocol).
The Research ethics committee, who gave the trial ethical approval, said that the endorsement by the charity was a factor considered when deciding ethical approval for SMILE.

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And Phil Parker and LP trainers are STILL using that 2006 Mail article in their advertising, claiming that Emily Wilcox recovered from ME by doing Lightning.


Millions of people read that article and still believe that Emily was 'cured ' by doing Lightning.


Groan and triple Groan.
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Please could you link to his use of the article so that complaints of misleading advertising can be made to the Advertising Standards Agency.

 

[Snowdrop]

There is so much confusion as to what is ME. To me this is the central point everything comes back to.
Yes I know we know. But at least for me there was also a lengthy learning curve. So if it takes (some of) the people who are sick so long to get it how do our families, friends and neighbours figure it out. Public information is so crucial.

When someone is clearly suffering it's not altogether relevant as to whether they are 'sick like me' but if they are going to go public with statements of 'being cured' of something that has resisted 'curing' in almost everyone else then they have opened themselves to some
scrutiny, I believe.

The damage is done, again and again, when these articles meet a wide readership who will not likely hear a more realistic accounting.

 

[Valentijn]

Please could you link to his use of the article so that complaints of misleading advertising can be made to the Advertising Standards Agency.

http://lightningprocess.com/success-stories/

 

[peggy-sue]

Phil Parker says ME is the layman's term for what doctors call CFS.
I just read that on his site - along with the stupid and utterly wrong theory that we are hyped up on massive doses of adrenalin as being the root cause.

 

[Wildcat]

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Hi Min,

You asked:
"Please could you link to his use of the article so that complaints of misleading advertising can be made to the Advertising Standards Agency."

This links to the "Success Stories" Page on Phil Parkers commercial Lightning site:

http://lightningprocess.com/success-stories/

The page gives pictures and links to Press interviews or articles by Martine McCutcheon, Esther Rantzen about Emily, Austin Healey about his wife, Patrick Strudwick and others.

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It seems that Lightning Trainers are down to showing testimonials rather than making claims about Lightning and diseases.


Ah!!! Just realised that Valentijn has already posted the link...... Duh. x
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[Min]

Can't help but wonder how much the celebrities were paid for the testi.

 

[Wildcat]

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It is definitely an important (and possibley legal) question - whether the Celebrities (including Esther Rantzen and Martine McCutcheon) who appear on Phil Parker's commercial Lightnng Process site, who endorse the Lighting Process 'Product', have been paid to do it.

"Celebrities have the ability to transfer their personal qualities onto a product". So the celebrities in question can hardly be oblivious to the fact that their name is invaluable advertising for Lighting Process.



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http://smallbusiness.chron.com/five-advantages-using-celebrities-advertising-34394.html
What Are Five Advantages to Using Celebrities in Advertising?

'There are a number of advantages to using celebrities in advertising, whether you are running print, Internet, radio or television commercials. The key for small companies is making sure the local celebrity is relevant and has broad appeal. Popular celebrities often work best because they naturally generate lots of attention. However, despite their following, celebrities are most effective if they promote products or services they are most likely to use. In other words, they must be plausible consumers, such as a local newscaster wearing a business suit from an area men's store.

Influence Consumer Purchases
The affinity consumers have for certain celebrities can greatly influence their purchases. People may have the attitude, "If the product is good enough for her, it's good enough for me." This philosophy is often the impetus behind advertisements for makeup, skin creams, hair products and attire. Consumers want the wavy hair of a local celebrity, for example. Hence, they purchase the brand that the celebrity uses to achieve her hair's fullness and bounce. Local consumers may also desire the same soft drink as their team's best baseball player. Essentially, the testimonial of the local celebrity adds instant credibility to a small company's product.

Build Awareness
Celebrities in advertising build brand awareness, according to "Supermarket News," a publication covering the food distribution industry. And they build it much more quickly than traditional types of advertising. Brand awareness measures the percentage of people who are familiar with a particular brand. Small businesses spend lots of money and time for exposure to incrementally increase brand awareness among consumers. The use of a local celebrity can do much to enhance consumers' awareness and understanding of what a small business offers.'

Position a Brand
Some small companies use celebrities in advertising to position their brands. Product positioning is placing a company's products in the best possible light in the minds of a target group, according to Inc.com. For example, a small investment firm may use a well-respected and retired local disc jockey to market a retirement plan for people ages 50 and over. The fact that the disc jockey falls in the consumers' age group and has a good reputation in the community makes the company's product and message more believable.

Attract New Users
One challenge small companies face is finding new users for their products. Local celebrities in advertising appeal to customers as well as those who have never tried the brand. The latter may be users of competitive brands. However, those who continually see the local celebrity in a commercial for a certain product may be convinced to try the product.

Breathe Life Into Failing Brand
The use of a celebrity in an advertisement may also help to breathe life into a failing brand. For example, a small soap manufacturer might think about dropping a brand or product, especially if production and overhead costs are leaving little or no profit. However, the use of a celebrity to tout the benefits of the brand could help create new interest and excitement in consumers.'

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[peggy-sue]

The journalist Esther, unfortunately, has a "celebrity reputation" for fighting for the consumer and debunking fraud.