Esther Rantzen
writes about her daughter's recovery

                                  SAVED FROM A LIVING DEATH Daily Mail, Feb 2007

Emily sounded so jubilant when she rang me today that my heart lifted as I heard the energy in her voice. "I've had the best morning!" she said.

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.

But the years of illness and disability have taught us both lessons we would rather not have learnt: about trying to keep real hope alive, keeping false hopes at bay and coping in a world that is all too often blind, deaf and uncaring towards disability.

My daughter's illness had crept up on us with a seemingly gentle gradualness. I would rather it had struck hard and quickly, then at least the medical world might have taken it seriously.

At that time chronic fatigue, ME, was widely derided as "yuppie flu", and I admit that I, too, had thought it was a cranky disorder.

When I saw my once active, energetic daughter walking heavily upstairs, and struggling to get off a sofa, at first I put it down to teenage lethargy. Now I know better, I can date the onset of the fatigue. It was triggered by a brief bout of glandular fever in 1992 when Emily was 14 - a common enough illness in young people, but she never fully recovered.

She went back to school after a week or two, but from then on she was overcome with a tiredness that sent her to sleep in the library or at the back of the class.

She took herself to the gym to try to force fitness back into her muscles. It had the reverse effect; she told me the staircases in the school buildings began to look nightmarishly like mountain ranges to her, she couldn't face having to climb them.

She went to the school nurse, who "counselled" her, mainly about the depressing effect of my career on her emotional health. Emily argued with the nurse, and never told me. I would have left my job in television instantly if Emily or I had thought the school nurse was right, but this didn't look like emotional depression to us.

Indeed, emotionally Emily was amazingly stalwart. During the next two years she had longer and longer periods off school and in bed, missing out on two-thirds of her education, but she still managed to catch up on her own so that her grades at GCSE were a perfect clutch of A-stars.

Once again, looking back, I realise that effort was the last straw. The next term she collapsed, and left school permanently.

At this point our GP referred her to a neurologist, thank heavens. Had we been referred to a psychiatrist, as many ME patients are, I might have come under suspicion of abusing her, been diagnosed with Munchausen by Proxy, and told that I was deliberately causing my daughter's illness myself.

It may sound far-fetched, but I have met families to whom that has happened, and mothers who not only had the anxiety and distress of a child's illness to deal with but the hideous experience of having to defend themselves against accusations of abuse.

When a child's illness baffles the medical profession they sometimes look around for someone to blame, and mum is often the nearest and easiest target. I have campaigned on behalf of parents and children who suddenly found a care order slapped on their sick child.

I've heard of terrible scenes when screaming children were torn from their parents' arms and locked in closed psychiatric wards. I know of one father who went to prison rather than allow that to happen to his son.

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.

We soon realised the lack of recognition had led to a stigma being attached to the illness. A local GP told me that ME was simply a malingerer's charter.

Another GP confided to me that he couldn't admit to his colleagues in his own practice that he was suffering from (less severe) ME, because he knew they would lose confidence in his sanity.

To try to counteract this prejudice, we were asked by the ME charities to go public about her illness, and Emily agreed.

Instantly we were inundated with letters from other patients and their desperate families. They told us of being sent away from GPs' surgeries with a pat on the head and a bottle of antidepressants. (Emily also had very low dose antidepressants for years, to cope with her dreadful insomnia.)

They told us that local education authorities refused to allow children with ME to have tuition at home and that husband and fathers with ME were refused benefits.

And because the illness had always been denied funding for research, the quacks had swept in. They wrote to us about a thousand different "infallible" cures: cold water baths; aloe vera drinks; oxygen at night; dowsing; feng shui; vitamin transfusions; magic crystals.

We were advised to put Emily on a sugarfree, wheat-free diet. We were visited by a "white witch". I was told to rearrange all our furniture along the ley lines in the earth, to pick up mystic vibrations. We were sent copper bracelets and amulets, and a dozen self-help books.

We were grateful, but far too sceptical to believe in - or spend money on - these "miracle cures".

I know other families who have bankrupted themselves chasing nonsense around the world, and I understand why.

Watching someone you love being slowly overwhelmed by a terrible illness with no possible treatment or cure is heartbreaking. When that person is a beloved child, it is unbearable.

My way of dealing with it was to stay stupidly positive. It was unrealistic and irrational, but time and again I would reassure Emily: "You will get better, I know you will."

She'd always trusted me, but this was a step too far. "How do you know, Mum, how can you be so sure?"

The truth was, I needed to be sure, for my own sanity.

Our neurologist told me: "I keep expecting her immune system to click in." But it didn't. At one stage he took her into hospital for six weeks, where they put her on a "baby steps" regime, teaching her to endure one minute more each day with the curtains open, to write one more word a day, to take a single step each day, and very slowly build up her strength.

It worked, a little. When she came home she was able to sit for a short time in a chair, and eventually get back to her wheelchair.

I remember watching her flop into it like a rag doll. I saw her fall back on her sofa, face deathly pale, eyes rolling upwards, as if in a coma, and those images will stay with me for the rest of my life.

Step by baby step she improved enough to drive with me around the suburbs to see the spring blossom, or on short trips to the country, anything to get her out of the house, her prison. Often she would spend the drive with earplugs in and her eyes shut. Sometimes she was swept with gusts of despair. I remember her screaming in my face: "I just want to die, Mum. Help me die."

I wonder whether I will ever experience anything worse than hearing that howl of pain from my daughter.

Still in her wheelchair, she tried to involve herself with activities with her friends. And although they were brilliant - so supportive - her illness made Emily terribly isolated and lonely.

I remember one birthday trip to the theatre. Not only was it difficult to find a show in a theatre with good wheelchair access, when we reached our seats we discovered the stage was almost invisible, they were so far to one side, and the wheelchair was blocked by a parapet. We also discovered that most restaurants have steps which make wheelchairs tip at a dizzy angle, that doors are too heavy to push with a wheelchair to propel in front of you.

It was an education. A year ago, watching my daughter beginning to flag again, I realised that Emily's fatigue was getting worse. By then we had taken out the stairlift, (what a wonderful day that was), and given away the wheelchair.

It had taken a long time - six years - but by pushing herself every day, step by step, Emily had got herself to the stage where she could walk. She'd even managed to sit her A-levels and was offered a place at Oxford.

At last Emily had begun to share my implacable optimism, and believed she might have a normal life like her old school friends, with a job, and parties and independence at last. So I watched in horror as her old pallor began to return, and with it, the tiredness.

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.

I have tried to explain how it was to go through the training despite feeling unsure, afraid and exhausted, and come out the other side getting well again. I urge you if you are investigating it, to ask as many questions as you need to, and keep your mind open to new ideas, so that you too can have the opportunity to get well and love your life. It is so worth it!

Before M.E.
I had years of stress before M.E. For over four years, my young son didn't sleep through a single night, so I was severely sleep deprived. It soon became apparent that our child was a bit different. ADHD was later diagnosed, but at the time we were living with an anxious, distractible, hyperactive, non-sleeping little person who literally climbed the walls like a caged animal. I was also trying to cope with trauma issues from my own childhood, building a house and earning a living. By the time our little boy was 3, I was getting lots of illnesses and eventually collapsed with pneumonia.

M.E.
I didn't recover. After nine months of advice from several different doctors and lots of tests, I was casually told it was probably M.E. My level of disability wasn't as severe as many, but I couldn't work anymore (I was a children's book illustrator), couldn't be a proper Mum, couldn't eat, sleep or think like I used to, or have any kind of 'normal' life. I struggled with the constant draining fatigue, the head fog and lack of concentration, memory loss, sensitivity to noise and movement, balance problems, muscle pain all the time (fibromyalgia), migraines and long-term dull headaches, hormonal problems, mood swings and awful periods, panic attacks and hallucinations, insomnia, digestive problems, nausea and vomiting, stomach pains, bloating and diahorrea (IBS), fevers and chills, and a lot of depression.

My partner Steve did lots of childcare, all the housework and shopping and held down a part-time job. He kept our lives ticking over brilliantly but was often very stressed (amazingly we are still together). On my best days I could take my son to school, or do a bit of gentle pottering in the garden, or socialise with a friend, but these were rare highlights that always took a while to recover from afterwards.

The Lightning Process
I heard about the Lightning Process from Amir Norris (Fatigue Answers in Wales) who had recently completed the Lightning Process training with Phil Parker. I was lucky to be told about it by someone I knew and trusted, who'd had first hand experience of seeing the results, and who I knew wouldn't give me false hope. But despite that, I was still sceptical. How could there be a cure out there when everything I'd been told so far was the opposite?

Nothing I'd heard or read about M.E gave me any hope of actually getting rid of it. I was resigned to management and coping strategies like pacing, diet, meditation and stress-awareness, which all helped but didn't cure. I couldn't understand at all how something I could learn to do myself could change all these physical symptoms.

 I was scared. What if I did get better, would everyone think I hadn't had M.E at all, that it was all just in the mind? What if I was too tired or dim to learn this technique? And worst of all, what if I got my hopes up and then they were dashed. I had spent years feeling hope-less, trying all sorts of alternative therapies, so how could I bear it if I tried and failed, I'd rather not risk it. And of course I was afraid of relapsing. I'd had one bad relapse, what if doing this led to another - I might end up worse. And the money. How was I supposed to find that kind of money from the low income we struggled to live on?

 I talked it over with Steve and other M.E sufferers who knew people who'd got better with this technique, and read all the testimonials on Phil Parker's website, over and over again, looking for clues. I felt re-assured when I found out it was all to do with repairing the immune system.

In M.E. and many other illnesses, the immune system isn't working properly, which is why we get a full set of different and confusing symptoms. When we learn the Lightning Process we learn how to stop the disfunctional adrenaline production that has suppressed the immune system. This allows it to work naturally again, as it was only suppressed, not permanently damaged. (which is a well accepted part of fight or flight research). So then the body can clear symptoms very quickly. The Lightning Process is partly based on Neuro Linguistic Programming (NLP). We literally learn how to change the neural pathways in the brain that send messages to other parts of the body, to break the link in a chain reaction and create new ones. It all started to make some sense, so I borrowed some money, was given some more by wonderful parents and booked myself in.

 The Training Sessions
In the first session I found out all the details of how my body wasn't working and how I could change the way it worked by doing the Lightning Process at certain times. It was quite an eye-opener but no more difficult to understand than a primary school biology lesson. There were a whole series of steps to go through to understand it all before actually learning the technique. I was amazed by the end of it to see how simple the LP seemed.

 It involves a series of movements and postures combined with particular words, that you learn to do and say at times that are personal to each individual. Visualisation techniques are also a part of it, and you learn how to change certain feelings or reactions to different feelings or reactions. All of these things together are what change the neural pathways and start the healing process. I tried it and was a bit awkward at first – it felt like reversing a car using the wing mirrors or brushing your teeth with your other hand. It just took a bit of practice to get things right. Amir was a patient teacher and there was enough time to sort out doubts or confusion if they arose.

I had worried all the way through that I was getting too ill or tired to continue, checking symptoms continually. But after the four hour session, I walked out feeling strangely OK and quite light-headed. So I went shopping!

As I used the technique in the shop, in the car, anywhere I was, and at home later, I could feel it was definitely doing something - I hadn’t collapsed. That night I slept OK but woke at about 5am the next morning and just wanted to get up to do things! I did things gently all day, like gardening and playing with my son - no big rests, no relapse, just using the technique a lot and feeling quietly, strangely confident. I was in tears by the evening though, having a set back, thinking I couldn't do it and getting very distressed. But talking it over, staying calm and just being kinder to myself was what got me through it and then I carried on.

Session two was learning a bit more about the LP, refining the technique and ironing out any problems. Session three was quite quick and dealt with returning back to ‘normal’ life and how to use the LP to help do that.

By the seventh day the last irritable bowel symptoms were going and I didn't have M.E anymore. I was so happy, whizzing about and quite tricky to live with apparently! I had thrown myself into it, didn't give up too often and got quick results. Some people I've spoken with since had the same approach, but everyone's different, and others take a more gradual route to success. What has become crystal clear is that it's a job of work - if you do the work you get better, but if you don't, you stay ill, it's as simple as that.

There was back up coaching on the phone and after two weeks I settled down and started to get myself a bit more balanced having realised that I was very de-conditioned, and had no fitness, strength or stamina after spending years on the sofa. I had to look after myself a bit better but I could happily start re-habilitation and exercise because I felt OK afterwards. No relapse or fatigue, just very stiff muscles after so long out of action.

 Life after M.E.
I then started gradually getting my life back. Domestic tasks were now possible and became a pleasure. Being a normal Mum was a delight and my son soon spotted that I didn’t live in a dressing gown anymore. It was such a pleasure to hear him so surprised that it was me taking him to school or football, instead of Dad. Poor Steve had to quickly get used to an opinionated woman again after years of peace and quiet! The changes happened so quickly that it did take a bit of effort for all of us to adjust. I rarely think about my M.E. anymore, and I don't need to do the Lightning Process to stop it coming back. It's gone.

Life is not all plain sailing though as we all know. There were reasons why I got ill that needed addressing and there have been big issues I have really struggled with since leaving M.E behind. But I know how to look after myself now and I have used the Lightning Process many, many times to change my whole life for the better. I found getting more help was invaluable and knew that I couldn’t work a miracle in a three day training. It’s remembering to use the LP when challenges come along that makes all the difference. I can now honestly say that some things about having M.E are a blessing. I learned a lot and I am now so much happier than I ever imagined possible.

Negative Opinions
I now feel passionate about helping other ill people get out of the awful situation they are in. It’s a lonely place to be and if I can be a part of their journey to wellness, I will have done something useful in the world. Now I have done the Diploma training and Lightning Process training with Phil Parker, I have become aware of many more stories surrounding it. They are mostly fantastic and uplifting, but some are not so good. So I think it may be useful to be aware of the negative opinions.

Firstly, there are a few people who don’t understand how the Lightning Process works, who pour scorn on it, and us for trying something new. That can be painful especially if they are members of your family or friends, so it is good to get plenty of information about it to figure out how you feel.

Also it has taken the medical profession decades to decide M.E. exists because they don't fully understand it yet either, so it will probably take decades more before the LP is available on the NHS. Which means we have to pay for it ourselves and it is is a hefty lump sum to find when we are often too ill to work. It’s a tricky problem but practitioners have to make a living just like anyone else, and I personally felt it was worth the fee a million times over by the time I got to day three and was feeling better.

There are also blogs and websites where you can read lots of negative stuff about the LP, but most people who criticise it havn’t actually done it, so don’t really know what it is all about. I think it’s more useful to base an opinion on facts not prejudices. For instance, on day three of the training, at least 95% of participants are getting well. That’s an amazing success rate, but it’s just the beginning.

Participants still have to keep doing the Lightning Process after that to allow their body to clear their symptoms. If they don’t, they won’t get the improvements they want. There are a few people who do stop using it effectively and think ‘it’ doesn’t work. But the LP is a skill, just as learning to walk was when we were little, so it is up to us whether we succeed or not. If we had stopped trying to put one foot infront of the other at that crucial moment, we would have never mastered the skill of staying upright. But because we just kept trying till we got the result we wanted, we walked. Likewise, when we do apply the LP in the same persistent way, the results are fantastic. And of course we can get help if we trip up, or need to understand more.

Help and advice may be necessary, but ultimately if we don’t apply the LP persistently, it won’t work and becomes a waste of time and money. This makes it unique in that it is not like any other therapy or treatment. I think it is this aspect of it that has led to some negative opinions from people who don’t fully understand or accept that it is not the Lightning Process that works, it is US. Thankfully the LP is not very hard to do, and we only have to do it till we get the results we want, because then it becomes automatic, the same as walking did when we learnt to do it, all those years ago.

 Recommendation
To anyone considering doing the Lightning Process I would say don't waste anymore time - life is too short to be stolen away by illness. Using the Process works, it's not a miracle, it's just clear, logical and quick.

Every new discovery has to go through a period of assessment, which is right and proper, and Professor Findlay’s pilot study at the ME Centre is a really welcome start to that process. But it may be years before proper funding is raised to do full clinical trials, so to make a judgement about the LP’s effectiveness, all we have to go on at this stage are the results seen so far. In the last ten years over 3000 people have got well, and nothing I have tried even comes close to it for effectiveness and speed of recovery. If any of this makes sense to you, just pick up the phone, speak to people who have done it and check it out.

Thanks
I am eternally grateful to the people who helped me, taught me and supported me and I am also glad I didn’t let my own doubts and fears hold me back, because now I love my new life so much, I have to pinch myself sometimes. I have been very lucky. I hope you found it useful to read this far and I would welcome any feedback on this or the rest of our website.

 Warmest wishes      Kate