Letter re: Daily Mail article by AYME President on 12th Feb. 2011

Letter to Ethics Service 14th February 2011

I would like to draw your attention to an article written by the President of AYME, Esther Rantzen, that was published in the Daily Mail on-line on 12th February. She has discussed her daughter Emily’s battle with ME in the media over a number of years.

The title is, “At last I have discovered the secret of Emily’s lost 14 years”.
http://www.dailymail.co.uk/health/article-1356316/At-I-discovered-secret-Emilys-14-lost-years-Esther-Rantzen.html?ito=feeds-newsxml

Esther writes, “As with many families battling an illness for which there is no known treatment, we were offered countless “miracle cures” …. since neither she nor I are attracted by unproven complementary mumbo-jumbo, we politely refused. But when a friend and fellow ME sufferer told us about the positive results of the Lightning Process (a form of cognitive behaviour therapy or neuro-linguistic programming), Emily decided to try it. It worked for her, brilliantly.”

She does not point out that the Lightning Process does not work for many others with ME and that some are harmed by it. Given that she knows very well there is a trial of LP that her charity is supporting and is involved with, this is highly irresponsible. In reality, the LP is also in the categories of “unproven complementary mumbo-jumbo” and “miracle cures”.

“It showed her a way to combat the symptoms that were overwhelming her.”
She does not point out that this way of combating symptoms is to simply ignore and deny them by using the STOP technique.

After eliminating gluten from her diet, Esther says that Emily feels, “infinitely better”, showing that in reality, she felt infinitely worse before – it is clear that the Lightning Process did not work for her as “brilliantly” as her mother claims in her promotion of the product.

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”.

3. This shows that the true technique of the Lightning Process is to tell children to pretend they are no longer ill. It also shows that it doesn’t help children to achieve genuine recovery, as Emily feels that omitting gluten from her diet signals an end to what she describes as, “No more “fake it til I feel it”.

As President of AYME, it is notable that Esther Rantzen gives a fuller description of coeliac than ME, when comparing the two diseases. She omits the cardinal symptom of ME – post-exertional malaise, which is not the same as chronic fatigue. It is also incorrect to say that it “can also” cause problems with the nervous system – ME is a disease of the nervous system (WHO ICD-10 G.93.3). She mentions neurological problems and neuropathy in the description of coeliac but not in ME – again, this is an important omission as ME is a neurological disease and involves neuropathy. Immune system dysfunction is also omitted – surprising given the subject of the article – ME/CFS patients often develop auto-immune diseases such as thyroid disease and developing food and chemical sensitivities is also common in ME/CFS.

The NHS Choices website also states that neurological disorders can increase the risk of developing coeliac disease.
http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Causes.aspx

Esther Rantzen points out that NICE have recommended testing ME/CFS patients to exclude coeliac since 2007. As president of AYME, why did she not know that already? It begs the question whether AYME’s medical adviser, Esther Crawley, routinely tests for coeliac before giving her “CFS/ME” diagnosis and whether she will be including this in her tests of exclusion for the newly-diagnosed children that she is recruiting for SMILE.

Of coeliac disease, Esther Rantzen says, “But all through those years I knew almost nothing about the disease. I needed the facts.”

It seems that this could apply equally to her knowledge of ME, as it is obvious she knows far less about it than she previously thought. One would expect the President of a charity for children and young people with ME to have this basic knowledge of the disease – particularly one who reports on and discusses it regularly in mainstream media.

4. I contend that AYME is not a reliable organisation with respect to the SMILE pilot study.

Esther Rantzen also writes, “Why would anyone want that very nasty rash to return, even in the name of providing medical evidence?”

Need I say more?

Yours sincerely,

(Patient Advocate)

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