Byline: DAVID GERRIE
IT IS a condition that divides medical opinion. Some believe that ME, or Myalgic Encephalomyelitis, is a crippling disease that ruins the lives of 150,000 people in Britain. Sceptical doctors say it has no physical cause and is all in the mind. TV presenter Esther Rantzen has no doubts, however, because she has seen her 18-year-old daughter Emily's health ravaged by the condition. From being a bright, healthy girl, she has been reduced to a listless shadow of her former self, missing long periods of school. Esther, who with husband Desmond Wilcox, also has two other children, has now made a programme about ME, which will be broadcast on August 5. Here, she tells her daughter's painful story to DAVID GERRIE.
WHEN Emily was 13, she contracted glandular fever. Before this, she was always a perfectly healthy child, apart from being slightly more prone to allergies than usual.
I had had friends who had suffered with glandular fever, so I wasn't too worried, apart from the realisation that so little is known about it. It is an interestingly common illness, particularly when young people are coming up to adolescence and they have exams and that sort of thing.
Emily didn't get it very badly but it kept recurring. She would have a relapse and be very unwell. Still I wasn't surprised by this, or particularly disturbed, because, as I say, I have seen it in other people.
But in January 1995 Emily had another relapse. This time there was an awful lot of muscular pain, and she was so tired I would see her sitting at the kitchen table with her chin propped in her hands, her eyes closing.
Sometimes, as I was talking to her, I would watch her eyes drift and her eyelids fall. It was like watching sleeping sickness, and I began to have terrible thoughts about things like brain tumours.
Whatever it was, I was quite sure Emily had a very serious organic illness - something which was attacking her whole system.
She went to various doctors. One suggested she might have a defective thyroid, but blood tests showed her thyroid levels were fine. Another said it was just a virus. But when she went back to school, she frequently burst into tears and had to be collected and brought home.
She would tell me how she had sat at the foot of the stairs at school and they had looked like the Himalayas - she knew she would never be able to climb them. Friends would find her asleep or in tears in the library.
She became clumsy, too. There were all sorts of odd symptoms. So I rang the doctor and said: `Look, is there any way this could be ME, because it has been going on for so long?'
One symptom is the more exercise you do, the more tired you become, whereas for most people the more exercise you do the fitter you become.
Emily was suffering from fatigue, sore throats, agonising headaches and was living on Nurofen.
The doctor referred me to a consultant, and it was our great good fortune that he was a consultant neurologist. I say that because I now know a pair of psychiatrists wrote a paper writing these symptoms off as evidence of hysteria - a diagnosis which has caused enormous grief.
Other psychiatrists have diagnosed the condition as Munchausen's by proxy and decided the parents were deliberately making the child disabled.
First, the neurologist asked Emily a lot of questions. Then he put her through a battery of tests to eliminate everything from diabetes to brain disease.
Finally he said she was suffering from what he called chronic fatigue or post-viral fatigue syndrome, which we know as ME.
He explained it was an illness which affects the hypothalamus, the part of the brain which controls such functions as energy, mood and temperature control. (Sometimes Emily's hands or feet are freezing cold, or one hand is cold and the other is warm.) It's a very complex part of the brain and they still don't know everything that it controls.
ME happens as a response to a virus - either a virus which is still in you or one which has come and gone. One doctor in our TV programme on the subject says many of her ME patients are market gardeners who work with organo-phosphates, and there are those who think it may be related to pollution.
But it is something to do with the immune system, which has been attacked and is responding abnormally. This affects the hypothalamus, which in turn produces all these physical symptoms.
The only treatment is to try to create a programme of measured rest and activity to prevent the sufferer ever becoming over-tired. One of the worst things you can do with ME is to exhaust yourself with violent exercise.
Emily was also prescribed a very low dose of anti-depressants - much lower than one would use to treat depression - which she takes every night at 8pm in order to correct her sleep pattern.People with ME tend not to sleep well, and it stands to reason that if you are exhausted, you must sleep.
And that is all we have at the moment . . .
Watching your child become almost entirely bed-bound - light hurts Emily's eyes, so she lives in rooms with darkened windows or with the curtains permanently drawn - is like watching your child being put in prison.
It is so desperately painful that a lot of families will go to any length to try to find an alternative remedy, and we have been inundated with suggestions.
People try faith healing, electromagnetic treatment, oils, magnesium, or cold water therapy. And because they see some remission, and because most sufferers eventually recover, whatever you were doing when you started to feel better, will naturally be what you tend to think cured you.
So you will find people who will tell you that such and such a treatment worked. But what worked for one person may not work for another.
Also, once you try one alternative remedy, you may as well try the lot. I know people who have, and I know the distress it can cause, because they put so much faith into things which don't always work.
If Emily wanted to try them, we would be right behind her. But she doesn't.
My sister once massaged Emily's feet, and she found that very soothing, so we are looking into the possibility of reflexology. All I will say is, whether or not we believe in it, if it makes Emily feel better, then I am for it.
For the time being, Emily uses the Alexander Technique, an educational therapy aimed at improving overall well-being through changes in posture, because this gives her a positive feeling about herself, and an alternative way of sitting and moving which relieves the pain.
Nobody is saying that it is a cure, but it is a tremendous help to her.
I have seen her find it utterly impossible to get upstairs, but she will find a way to do it by using the technique. It is awful to watch, though.
Emily cannot go to school. She shone through with nine As in her GCSEs, but because she has missed school since January last year, she hasn't been able to manage A-levels. Her friends will all see their results next month, then go off to university.
Emily hasn't really had any private tuition. She reads voraciously and thanks heavens for the library of sound tapes available, because it is very painful for her to hold a book.
This is not a mild disorder, despite the fact that `fatigue' sounds almost as if it is something a lot of us would like to have - the chance to have a month or two of rest. I've heard of people whose reaction has been: `Oh, lucky you - what I wouldn't give for some time off!' They just don't understand the crippling pain.
A lot of Emily's friends have kept in touch with her, but she doesn't have the social life a girl of her age should be enjoying. There are no parties or discos.
A group of her friends are going off to the Greek islands, but she isn't able to join them. We took her abroad last year and it was a disaster. She became completely exhausted.
The neurologist also explained that when you are suffering from ME, your hypothalamus is in `frightened flight'. You are in a state of panic all the time and hypersensitive to everything. So Emily would find it very difficult to sleep without the anti-depressants. She used to wake up all the time with her mind buzzing
There is almost no money being spent on research into this disease.
Because of the diagnosis of hysteria, which still lingers on, it is very hard to obtain any funds from the Medical Research Council.
In fact, a doctor who treats a lot of patients with ME told me that he was asked not to let any of them come in on the day the Research Council was looking around because they would be less likely to give a grant.
When there are conferences on ME, they are very badly attended by doctors.
It's rather a repeat of the whole thalidomide affair, in which people are going to have to have their heads banged against the wall until they recognise exactly what they are dealing with.
I am so grateful to Claire Francis, who stood up and talked about ME, because nobody could doubt that here was an energetic, indomitable, high-achieving woman who now has a wonderful career as a best-selling novelist. She helped dispel the malingerer's image which the disease suffers from.
The people I know who have ME are the sort who would usually keep going no matter how ill they felt. Perhaps that has something to do with it. They are hit with a virus, but instead of taking to their beds - as the rest of us would do - they have kept going, to the point where their health has paid the price.
There are still too many doctors who will say to you it is depression associated with the modern lifestyle. There has been such inadequate research into the subject. But, of course, if doctors don't believe ME is there, then they won't diagnose it.
In this country it is conservatively estimated that there are 150,000 ME sufferers, but I have spoken to neurologists who put it at more like 600,000, because it is so under-reported.
I happened to mention Emily and her suffering in one interview and since then I have had 4,000 letters in response. I don't think people are self-diagnosing themselves incorrectly and saying: `Oh yes, that must be what is wrong with me.'
Having lived with Emily, the symptoms are so specific. It's not like depression. I have had post-natal depression and I promise you it is not even close.
When you ask someone who's depressed if they're depressed, they will normally break down in tears. If you asked the same question to someone with ME, they would say: `No, not at all. I just wish I could find a cure for this illness.'
There are, as yet, no medications to treat this disease. People keep hoping the Prozac-type drugs will work, but they don't.
I went to the World Congress on ME last autumn, and the very doctor who had had hopes for the Prozac-type drugs very courageously read a paper in which he found he could not link them to any success.
But the prognosis is still hopeful. Eighty per cent of people with ME recover, and 20pc get completely better, as if they had never had an illness, although they may always have to pace themselves a bit.
Among young patients like Emily, even though they get it more severely, the prognosis is generally optimistic. The average duration of the illness is four years, so Emily is, hopefully, half-way through her suffering.
But the knowledge that her suffering will probably last at least the same amount of time again makes us both desperate.
We know there is no finite time limit on it. We just have to hope she will get better. We will do everything we can and I am very proud of the fact that Emily is doing everything she can to aid her recovery.
She can't help but let it get to her at times, but she is a fighter, even when the illness means her having to spend the whole day in bed. She and I are both determined to continue to think positively. We take the `every cloud has a silver lining, always look on the bright side' approach.
On a good day, Emily will wake up at 9am, get dressed, come downstairs and have breakfast. But at the moment she is going through a bad patch and has to have her breakfast brought to her in bed.
After that she may come downstairs and read or watch television, because, thank heavens, the light from the screen doesn't hurt her eyes. (I have to say, the people who dismiss daytime TV have never been chronically ill: when every day is a blank page, those programmes really help to fill them in.) She will have a light lunch, and then rest breaks at around 12 noon, 2pm and 5pm. Thanks to television, she is incredibly well-informed.
If she goes out, she has to be pushed in a wheelchair, because she can't walk any distance. The first time she did this was very funny, because she came back and said the people she most related to were the babies in their buggies - and the person pushing her related to their mothers.
She never allows herself to think that today will be the same as the last one and the next one. She does think each new day will be better. Though even with day-round help at home, it is still extremely tough on her.
Her suffering has been terribly hard on the other children - Rebecca, 16, and Joshua, 14 - because, in a sense, the house has to revolve around Emily.
We all know that it's not her fault and she minds as much as we do, but the rhythm of a chronic illness affects everyone in the house.
The other two help out a great deal, and it is a very important lesson for them, because they have seen their older sister suddenly becoming dependent.
As for Desmond and I, it is always with us. There have been times when I have been chairing a trustees meeting at Childline and I've had a phone call and had to say: `Sorry, I have to go and look after Emily.'
We had a real panic when Rebecca also caught glandular fever just before her GCSEs. You can only imagine the nightmares we had wondering if ME would pay a second visit to our family.
She had it very badly, with a temperature of 104.5, which meant we were sponging her down in the middle of the night. But one of the doctors told me that when it strikes as badly as that, it is almost as if the virus burns itself out there and then.
As for diet, Emily eats very carefully. All our food now is organic, because I cannot afford the risk posed by organo-phosphates - and I can't tell you how much better it tastes. We have a cottage in the country and my ambition is to have our own vegetable garden so eventually I can rid Emily's diet of anything which could be preventing her recovery.
One good thing about the disease is that it makes its sufferers very angry - furious that nature can foist something so cruel on them. But that anger can prove very invigorating in terms of providing them with something to fight back with.
As far as the medical establishment is concerned, it needs to completely rethink its attitude to this disease - to look at it anew and at the huge population it affects. Even if it is only 150,000 people, a lot of those will be young teachers, nurses, and others who work every day in environments in which viruses proliferate.
These are people whose careers are valuable to the community, and it would certainly be worth our while as a society to have them back in action.
I would like to see a properly funded and resourced research project.
Look at me: I could already be in touch with 4,000 people and ask them detailed questions about their medical histories, their diets, where they live and other relevant statistics. That would be quite a database just to start with.
Some researchers are looking into a possible link between ME and multiple sclerosis.
We know that ME affects patients' moods and, yes, they get angry. But these are symptoms of the illness which are caused by the illness - they are not its cause. This is not a psychiatric illness: it is something which is hitting people's bodies and brains
Emily has been too unwell to take part in the programme herself, but I know if she could say one thing it would be: `Listen to the patients. They know how they feel and they're not making it up.'
* The Rantzen Report on ME - The Secret Epidemic will be shown on BBC1 on Monday, August 5 at 7.30pm. Further information on M.E. can be obtained from: M.E. Association's Young People's Group, PO Box 605, Milton Keynes, MK6 3EX, tel. 01908 691635. ME Association, Stanhope House, High Street, Stanlord-le-Hope, Essex SS17 OHA, tel. 01375 642760. Action For ME, PO Box 1302, Wells, BA5 2WE, tel. 01749 670799.
