Esther Rantzen writes about daughter’s illness, Daily Mail, 12 February 2011

February 13, 2011

At last, I have discovered the secret of Emily's 14 lost years, by Esther Rantzen.

Daily Mail, 12 February 2011

You can never be happier than your least happy child, they say, and it's true. In our family, for 14 desperate years, our least happy child was my eldest, Emily, who became ill with ME (myalgic encephalomyelitis) and then seriously disabled.

It struck her down when she was 14, after an attack of glandular fever. She never fully recovered from the illness and we watched helplessly as she struggled with chronic fatigue which, like a sticky web, slowly paralysed her.

In the end she was imprisoned  –  bed-bound, lying in a darkened room, unable to read, write or even to speak.

At that point she went to hospital, where they pushed her by baby-steps, one word at a time, one more minute of light each day, until she progressed into a wheelchair, and then on to her feet.

The great joy of my life was that her father, my husband Desmond Wilcox, saw her walking again before he died ten years ago.

And she continued to improve  –  slowly, year by year. But it was through management and willpower, not treatment and cure. As with many families battling an illness for which there is no known treatment, we were offered countless ‘miracle cures'. Some people suggested we should bring a dowser into the house so that we could realign her bed.

Others told us to give her transfusions of vitamins, make her have ice-cold baths, give her oxygen at night or hang crystals around her neck. 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 behavioural therapy or neuro-linguistic programming), Emily decided to try it.

It worked, for her, brilliantly. It showed her a way to combat the symptoms that were overwhelming her. So now, at last, she has the energy to catch up on the education she lost, and she is hugely enjoying studying for a degree in psychology. She still has to pace herself – tiredness is a constant background to her life, carrying with it the dread that if she exhausts herself, she might relapse again.

That is until two weeks ago. Then everything changed. Those of us with daughters are accustomed to the fact that from time to time they will follow a strange diet. I've lived through the cabbage diet, the protein diet and the eat-nothing-with-an-O-in-it regime.

So I wasn't surprised when Emily came home with the news that she was on the no-carbohydrate-of-any-kind diet. No starch. No sugar. No wheat or oats or Ryvita. Nothing. Fine.

She stuck to it rigidly for four days (Emily has redoubtable willpower which is, I think, how she forced her way out of the prison of her illness), and over a cup of tea she suddenly said, ‘Look, Mum, the rash has gone.'

For years she has had a rash on her right hand. Everyone had told her it must be a contact rash of some kind. We blamed a detergent, and changed it. We blamed a soap, and changed that. In the end she just accepted it. Now it had disappeared. Why?

My friend George, a retired orthopaedic surgeon, is used to me asking advice out of his specialist area, so when I rang him and said, ‘You'll think me crazy . . .' He grunted in agreement. I persevered. ‘Is there any way,' I asked, ‘that a diet could have cured Emily's rash on the back of her hand?'

‘That probably just proves the rash was BA,' George said. BA, is, I gather, a medical term for b****r all. I felt properly put in my place.

All the same, when Joshua, my medical student son, rang, I thought I'd try it out on him. After all, Emily's hand was dramatically better.

‘Her rash has gone. It couldn't have been cured by her latest no-carbohydrate diet, could it? Could there possibly be a connection?' I asked.

‘Coeliac disease,' he said. ‘Has she ever been tested for coeliac?'

I thought back. When she had eczema as a baby, we thought that had been caused by our cat so we gave it away. When Emily developed ME, she was tested for all sorts of things to make sure there was no other underlying illness.

But at no time was she ever tested for coeliac disease. I was bewildered by the idea. I thought I knew about coeliac, the illness caused by eating grain containing gluten.

A friend of mine had told me how desperately ill his wife had become with undiagnosed coeliac.

She had almost starved to death because the gluten in wheat made her so ill. But I'd never heard of any skin rash caused by coeliac. I asked Joshua to tell me more.

‘Coeliac has all sorts of symptoms,' he told me. ‘Yes, it can cause a skin rash. It can cause depression. It can cause fatigue. But there are very simple tests, a blood test, a biopsy of the small bowel, you can put a camera down.

Tell Em to go to the doctor and get tested. She will have to go back on to her normal diet though for the blood test to work, because the antibodies are an autoimmune response to gluten.'

I broke the news to Emily: ‘Joshua says the rash could have been caused by gluten in your diet. He wants you to start eating wheat again so you can have a blood test.' ‘No,' said Emily, in that firm voice I have heard before  –  the no that means no.

I could understand it. Why would anyone want that very nasty rash to return, even in the name of providing medical evidence?

But then providence provided proof. Bored with her diet, she started drinking a protein smoothie. Unbeknown to her, it contained gluten. Back came the rash on her hand. She stopped taking the smoothie. The rash cleared.

But that's not the only good news. With no gluten in her diet, she feels infinitely better. No more tiredness. Far more energy. The small rash on her cheek she's put up with for years has almost disappeared.

The remains of eczema on her wrist have almost gone. Even though she's now gone back to eating sugar, and the rest of her diet is normal, she has excluded gluten and she feels great.

She walks with gusto, she does the ironing without complaint, she is in tremendous spirits. Wow! She can't believe how well and happy she feels, and nor can I.

This week I spoke to one of the world's leading experts on coeliac disease  –  recommended by the charity Coeliac UK  –  David Sanders, Professor of Gastroenterology at the Royal Hallamshire Hospital in Sheffield.

I started explaining Emily's problem with her rash, and her daft exclusion diet, and my surgeon friend's disbelief, and my medical student son's suggested diagnosis of coeliac disease. Could he be right?

‘Your son,' said Prof Sanders, ‘is very astute.' Music to a mother's ear. But if my son is astute, what about my retired surgeon friend who had scoffed at the idea?

Prof Sanders told me to forgive him. ‘The sands have shifted such a long way since he was trained,' he told me. ‘Understanding coeliac disease is comparatively recent and it takes a long time for this new information to percolate through the medical profession.

‘Doctors used to be taught that coeliac was rare, that normally it affected young children, and that it caused serious gut problems. Now we know that it's common  –  it affects about one per cent of the population  –  and that it can cause many different symptoms.

‘In fact, it's most often diagnosed in adults these days, and it can be missed for years.

‘It can cause gut problems such as heartburn, bloating, diarrhoea and skin rash and dermatitis.

Serious problems include anaemia and calcium loss, which can damage bones and tooth enamel. It can also cause headaches, loss of balance and peripheral neuropathy. And it can cause fatigue.

‘People who feel tired all the time may be suffering from coeliac disease.'

Fatigue. Could it possibly be that the illness that blighted Emily's life, which wrecked her education and isolated her from her friends, the ME that caused her so much suffering, was caused by something as simple as gluten? If so, we could have treated her so easily, and so effectively. But all through those years I knew almost nothing about the disease. I needed the facts.

‘What is gluten?' I asked Prof Sanders, ‘and how can it have so many different effects on the body?'

‘Gluten is the sex organ of wheat, rye, and barley, the endosperm,' he replied. ‘It's contained in many products. Capsules are often made with gluten. Gravy can contain it.

‘It's in bread, biscuits, cakes, pasta, pizzas. It's used as a thickener. You can go to a restaurant and order steak and mashed potatoes, and think that's a gluten-free meal, but the sauce may contain it.

‘We eat more and more gluten these days because it's used in so many processes. Which may be why coeliac disease seems to be increasing.

‘We still don't understand how it works in the body.

You eat gluten, it enters the small bowel, and from there creates antibodies that may affect different parts of the body, the skin, the brain.'

‘And can it cause profound fatigue?'


If only we had known. Could we have saved Emily those 14 terrible years?

‘In recent years we have changed our knowledge base,' Prof Sanders told me. ‘I've known women who suffered such serious anaemia that their doctors decided they must have hysterectomies when all they needed was a change to a gluten-free diet.'

The problem is that we humans did not evolve to eat grass. Wheat, barley and rye are just cultivated grass. We've only eaten the stuff for a few thousand years, and it's biologically wrong for us.

Have all the thousands of people struggling now with ME been tested for coeliac disease? Back in 2007, NICE recommended that they should be.

So could it be a major, undiagnosed cause? Because if it is, giving up wheat, rye and barley is a simple way sufferers can have their lives back.

I only wish I could give Emily back her lost 14 years.

Do you think Esther is right? Share your experience at health@

No more ‘fake it till I feel it'


In my darkest hours, when I was bed-bound and reliant on a wheelchair, I didn't believe I would one day work full-time, go to university or lead a fully active life.

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 till I feel it'.

I've also been putting up with painfully sore skin on my hands because I thought it was an allergy to some soap or detergent I couldn't pin down and eliminate.

Restricting my diet to avoid gluten is a very small price to pay for the very real boost I feel in my energy and the improvement in my skin.

It's a big surprise that something so simple and practical could make such a difference so fast.

I would urge anyone to test for coeliac disease if they have the symptoms of chronic fatigue.

Who knows, it might just change your life too.

Two conditions that may be linked

  • ME (myalgic encephalomyelitis). Also known as chronic fatigue syndrome (CFS), it affects 250,000 adults and children in the UK. Symptoms include muscle pain, persistent exhaustion, flu-like symptoms  –  such as aching muscles and visible muscle twitches  –  headaches, poor concentration, memory problems, headache, poor sleep and digestive problems such as nausea, bloating, stomach cramps and irritable bowel syndrome (IBS). It can also cause problems with the nervous system, including poor temperature control, sweating, dizziness and difficulties with balance and vertigo.
  • Coeliac (pronounced see-liac) disease is an autoimmune disease. There are 55,000 members of the charity Coeliac UK ( but there may be thousands of undiagnosed sufferers. Gluten, which is found in wheat, barley and rye, triggers an immune reaction in those with coeliac disease. Eating gluten damages the lining of the small intestine and other parts of the body may also be affected. Symptoms include gastrointestinal reactions – such as nausea and vomiting  –  recurrent stomach pain, cramping or bloating, any combination of iron, vitamin B12 or folic acid deficiency, tiredness and/or headaches, weight loss (but not in all cases), mouth ulcers, hair loss (alopecia), skin rash (dermatitis herpetiformis), tooth enamel problems, osteoporosis, depression, infertility, repeated miscarriages, joint and/or bone pain, neurological (nerve) problems – such as ataxia (poor muscle co-ordination) – and neuropathy (numbness and tingling in the hands and feet).

12 thoughts on “Esther Rantzen writes about daughter’s illness, Daily Mail, 12 February 2011”

  1. Many people with ME have cut out gluten because they feel better without it, and many also find they feel better cutting out dairy products. Since it is clear from this article that like many mothers, Esther wants to believe the best, we might here be seeing another overstatement of the benefits of Emily’s latest strategy to get better.

    Esther, are you saying Emily is now 100%? I hope so, but bearing in mind your trumpetting “Cure for ME” re the commercial Lightning Process, which made poor Emily “drag myself through life, forcing my body to be active and using mind over matter to ‘fake it till I feel it” I wonder. And then there was the cure at the Romford Centre… Time will tell, I guess.

    Meanwhile, there are thousands of men, women and children in the UK with the neuro-immune disease ME. You have caused much damage and confusion to the cause of bio-medical research with your overstatements in the past. Will you now accept that you don’t know as much as you think you do, or are you certain this time that “this is it”?

  2. Please. Just don’t get me started…

    Esther has done more harm than good in my humble opinion.

    It is her daughter who is suffering and her mother who seems to be capitalising on it.

    I was involved in the BBC Radio Berkshire ‘incident’ concerning Esther and the Lightning Process.

    As a result Dr Shepherd became involved, following Esther’s departure and Anne Diamond’s return.

    The last thing I need right now is more Esther Rantzen.

    The comments following the article just about sum up where I am coming from…

  3. I, too, feel that Esther Rantzen does more harm than good. I am glad that Emily has been able to attend university. I hope she continues to stay well. I wish her mother would shut up, though.

  4. Dr Charles Shepherd

    The ME Association’s guidelines to research, clinical assessment and management – ME/CFS/PVFS: An Exploration of the Key Clinical Issues – emphasises the importance of screening for coeliac disease when a diagnosis of ME/CFS is being considered.

    The key symptoms of coeliac disease and the way in which it overlaps with ME/CFS, along with the screening tests involved are also described in this MEA booklet.

    People with ME/CFS who have not been screened for coeliac disease should be tested before trying a gluten-free diet.

    MEA booklet (January 2011 edition) information:

    Dr Charles Shepherd Hon Medical Adviser, MEA

  5. Thanks Dr Shepherd.

    Apparently, I didn’t know this, but ME/CFS clinics are screening patients as part of the blood exclusion tests now.

    Who, when, and where? I do not know.

    Do you have any further information you can provide?

    I paid for my own privately some years ago, but I will ask the Professor if he excludes Coeliac disease before diagnosing patients with CFS/ME.

  6. Dr Charles Shepherd

    Sorry, but I do not know if the ME/CFS clinics have an official policy of screening for coeliac disease.

    My personal approach is that coeliac disease should be excluded before a diagnosis of ME/CFS is made – especially in patients who also have irritable bowel type symptoms or other symptoms which could be linked to coeliac disease (eg mouth ulceration or peripheral neuropathy).

    Dr Charles Shepherd

  7. I for one am glad that the more holistic approach is being employed here and surely dietry links should be explored. I am not diagnosed with coeliacs but have all the gluten/food sensitivities associated with coeliacs. I agree it should be eliminated before a diagnosis of ME can be considered as they are very similar in nature.
    Am I the only person that felt encouraged by this article from Esther and her daughter? I am so glad to see it is not just me that’s being affected by this dreadful situation and with a lot of people treating it as a joke or a psychological manifestation of mental imbalance. It is a lonely road to travel as it is very subjective in nature and any articles such as this that give the hope of a clinical diagnosis should be revered and any links should be explored!

    Marian Thomas

    1. Not the only one by far I suspect Marian.

      Esther’s desperation for her daughter and their equally desperate search for a cause, is greatly reflective of my own experience.

      It is how she has chosen to report this desperation and her use of provocative language that I believe is causing most consternation among sufferers.

      It is certainly why I became involved in the BBC Radio Berkshire ‘incident’ at any rate.

  8. Letter to National Research Ethics Service:
    Dear Joan,

    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”.

    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.

    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,

  9. hi all I would like to say that my mum was diagnosed with ME in 95 and it destroyed her life for 3 years until a new doctor recommended a coeliac test. It showed that she was coeliac and when she stopped eating gluten her problems sickness dizzyness etc stopped within days ,though it took a while to regain her stamina as eating gluten for all those years had taken its toll on her body.I am not saying that all people that suffer with ME are coeliacs but it is certainly worth having the test!

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