The Transcript Of "Where There's Life", Broadcast 8th June 1988.

Yorkshire Television/Independent Television, 8th June 1988

The programme is available to view at the BFI Mediatheque in London. It is free to view and membership of the BFI is not needed.

The BFI digitisation was paid for by @RFH1955.

Miriam Stoppard: "Hello and welcome to 'Where There's Life'. It's now estimated that about 150,000 people in Britain suffer from a mysterious illness called Myalgic Encephalomyelitis, or 'ME' for short. Earlier this year, the government announced that ME was to be recognised as a genuine disease. This seemed like a sensational breakthrough for patients who have been trying to prove for years to their family, friends and bosses that their symptoms of exhaustion are real and not imagined. But has getting a label for their symptoms really helped ME sufferers? To the Rushton family the ME diagnosis seemed like the answer to a prayer."

<film report starts>

Andrea Rushton: "For the past 12 years, people have been calling me a liar, um, basically saying no, there's nothing wrong with you', 'pull yourself together', 'stop being bloody lazy'." 

MS: "Being lazy is the last thing Andrea Rushton can afford, she has a double fight on her hands. Not only is she striving to become a successful musician, she's also struggling to overcome an illness which has plagued her since the age of 12, that was twelve years ago and she's still fighting." 

Andrea's mother: "She was a very bright, very affectionate, very fun loving sort of girl. She was the clown of the family, really. She made us laugh."

AR: "Even my dad has has not believed me, has not believed that there was anything wrong with me. I think he...he thought I was lazy. It's only recently that he's actually realised that this is an organic illness, and that it has been a hell of a fight."

Andrea's father: "I was very proud of my daughter. She was very musical and I've got a, I believe, a great career in front of her and then, all of a sudden, it just, it tended to end at that point in late 76 early 77, to such a degree that her music went to pot. I believe that she got a very good classical career in front of her and then it went off the, off the boil considerably."

AR: "For about twelve years, I've had terrible weakness. I'll suddenly find that my muscles just won't work for me, feel totally exhausted and turned to jelly. I find it hard to stand up, those pains that go through, sort of, deep inside the bones, which just creep, sort of, up and down. I find that I can lose control over my thoughts. It has a terrible effect on brain power, I lose my concentration, my sight goes. I can't see how anybody in their right mind can think that a young girl, as I was when I first became ill, a young woman, would actually get a kick out of pretending to be ill, um, so why should I make up these things that are, sort of, ruining my life and are totally devastating to both myself and my family?"

AM: "The doctor really was baffled because it could have been a possible glandular fever, but the tests were negative. They did show that she had a virus infection, six months after she became ill decided that it must be a nervous breakdown that she'd had. We had been referred to a psychiatrist after she had tried to take an overdose of tablets, and the psychiatrist suggested that for our benefit as well as for Andrea, she should be admitted to a psychiatric hospital and, um, she went into the hospital, and that was the worst, the very worst decision that I ever made in my life."

AF: "It was a devastating blow that one of my daughters gotta go to a psychiatric hospital. But I was only following the medical profession's advice, basically."

AM: "The doctors at that point told us that we shouldn't believe anything that she was saying. I was left then wondering was I wrong in believing that she had an organic illness? Whilst they were telling us not to believe Andrea, they were also making strong insinuations that she had a problem with a mother, a neurotic mother."

AR: "I was totally relieved to..to leave the place when I finally got out, but I was, I was just totally screwed up by that time. I'd gone in, sort of, very depressed and feeling very ill. I came out feeling crazy. I just, I was totally a mess."

AM: "We have always said one day they will prove us right. It will be proved that this is an organic illness, and everything that happened at that time would be vindicated. I heard a radio programme, about ten or twelve months ago, which was about ME and within the first couple of sentences into that programme, I knew that they were talking about what Andrea had. I wrote to the ME Association, the address was given at the end of the programme, and back came all sorts of literature and since that time I have gathered every bit of information that I can to learn everything that I can about the condition. It's taught me a lot of distrust of the medical profession, on the whole. Patients are still, have been and are still, suffering insults, slander, libel, their lives made really thoroughly miserable and in some cases tragic, simply because they are guilty of suffering from an organic disease for which, as yet, the medical profession have produced no diagnostic proof."

MS: "But in January this year there was a dramatic breakthrough; it looked like the ME mystery had been solved. In a paper published in the medical journal 'The Lancet', a team of scientists announced the discovery of a virus infecting ME sufferers. The test they developed promised, at last, to lead to an accurate diagnosis."

AM: "The difference between Andrea being diagnosed as having an organic disease and being classed as psychosomatically ill makes the difference between me being a mother who was neurotically supporting her daughter and a mother who was right all the time."

MS: "The Rushtons decided to take the test. They've come to St Mary's Hospital in London to hear the results. St Mary's was the first hospital to offer the ME test. After many years of anguish, the Rushtons hope that Professor Mowbray will be able to tell them what is wrong with Andrea."

James Mowbray: "As you know, we've done one of the virus tests that we're now doing in a lot of ME patients and we done that test on you. Now that is a test for one of the viruses, one of the groups of viruses that causes the trouble, called enteroviruses, and the test for that is negative, so it means you haven't got the common virus group which causes ME. It could be that you have haven't got a virus at all. What do you think about it?"

AR: "Um, it's hard to say really. I'm just...I haven't neither lost nor gained."

JM: "I think it's important for you both to realise that she has got ME, but that's a clinical diagnosis as a result of talking to her. She is just as ill, whether it be Epstein-Barr virus, which is the other group, one of the enteroviruses, or even if she made it all up, which I don't think she has."

MS: "Having neither lost nor gained, Andrea's battle to know the cause of her illness is back where it started. Is this true for many ME sufferers?"

JM: "She looks normal and healthy, and that's really the basis of their problem. It's for that reason, I think, that the patients want to have a label they can wave and say 'look, I do have a virus', because there's nothing to show. It's obviously important for a patient to have a label if they can, and it's nice to say I have got these symptoms, which I know I've got, which nobody else can see, because I've got a virus. They don't seem to like as much the idea of having it because they had perhaps a psychological cause. It isn't as respectable to society as it is to have an organic medical disease. The patient isn't any better or any worse by having an organic medical condition causing it or if it were purely psychological. In Andrea's case, it isn't psychological. She has got a disease which is caused by something else."

<end of film report, back to studio>

MS: "Dr. Powell, you're a consultant immunologist, an expert on ME, now why is there so much controversy about the diagnosis of ME?"

Richard Powell: "ME is a diagnosis made by doctor talking to a patient, it's a group of symptoms. It's not a disease we can actually test for, and by talking carefully to the patient, they complained of fatigability and things like that, that's how the diagnosis of ME is made. It is a very soft diagnosis...." 

MS: "...What do you mean by 'soft'? Uncertain?"

RP: "Yes, it can encompass...fatigability is a common symptom, many of us get it from time to time, er, some of us have it longer than others and ME is not the only cause for it, and that leads to a lot of doctors to question whether ME exists because out of every ten patients I might see with symptoms like this, maybe one to two could be said to have truly a post viral syndrome. Most of the others have another disease." 

MS: "Many of the ME patients believe that there is a virus involved and the research at least the paper in 'The Lancet' seemed to bear that out. What do you think?"

RP: "Well, certainly after classical illnesses such as glandular fever, the flu, you can have a period of post-viral lethargy that can go on for several weeks, a few people for months and it very occasionally for many years, and that can be a very troublesome, debilitating problem. The majority of people, though, do not have a classic post-viral illness. They seem to lose their drive, lose their initiative and often drift into other syndromes, such as something called fibromyalgia, which is a problem..."

MS: "...Fibrositis?"

RP: "It's a bit like fibrositis and people who have disturbed sleep, and in fact if you take a group of medical students, who hopefully are normal individuals, deprive them of sleep, you can induce this chronic fatigue problem. If you then let them sleep again, it goes back to normal and one of the basis on which we treat people with so-called 'ME', or 'fibromyalgia' as we like to call it, do in fact improve if you give them appropriate treatment."

MS: "What about this particular virus then?"

RP: "The enterovirus, if you in fact test a lot of normal people, they will also have enterovirus."

MS: "They'd be positive? They'd give a positive ME test?"

RP: "They would indeed."

MS: "But they don't have ME?"

RP: "They don't have ME which is why perhaps people such as myself would question the validity of these...this kind of test to make the diagnosis of ME." 

MS: "Now are you saying that ME therefore doesn't exist or is not a real illness?"

RP: "I think ME as far as the patients make the diagnosis probably doesn't exist. I think patient diagnosis is generally a bad thing, certainly if you listen to a patient, that's how doctors make a diagnosis. Patients actually are very bad at turning their own symptoms into a diagnosis, and not what, in fact, a lot of them complaining of tiredness, lethargy, and if they go along with the diagnosis of ME, the doctor may well just ignore them and say we've got ME, you've read in the medical magazines or the paramedical magazines that ME...we can't do anything for it, just go away and so making the diagnosis of ME doesn't actually help them."

MS: "About how many of your patients who come to see you thinking that they've got ME can you make a real diagnosis in?" 

RP: "About half of the patients you can make a positive diagnosis of something else.. The other half, if you like, are responding to the pressures of life."

MS: "So they're suffering from life?"

RP: "If you want to put it that way, yes."

MS: "Thank you very much. We will be coming back to you later. Thank you."

<Stoppard walks over to audience member>

MS: "Mrs Friend, were you, so to speak, suffering from 'life'?"

Mrs. Friend: "Yes, yes, I thought I'd got ME but proved out...proved that didn't have ME." 

MS: "Can you tell me what happened to you? What's been the story of your illness?" 

MF: "Yeah, well, it's gone quite some years, being very tired, aching limbs, forgetfulness. I've 

been backwards and forwards to the doctors over the years, but never thought there was an 

answer to it, and I was in the supermarket and just picked up the a woman's magazine and it just said 'are you always very tired?' and I just thought I'd take it home and read it and there was a list of symptoms, but as I went through one after the other, I thought 'oh yes, I've had this, this has happened to me and I felt like this and it did say that you can go to our own doctor if you suffered like this and he probably could recommend for you to see a specialist."

MS: "What did this specialist say?" 

MF: "He did some different tests on me and he got back to his desk and said to me 'I don't think you're suffering from ME, Mrs Friend'. He said 'I think it's something else.'"

MS: "Now what effect did that consultant saying that to you have?"

MF: "Well, I was expecting him to say, well, 'you've got ME' and that was my life, sort of, taken 

care of, you know, but, erm, I was just amazed. I just thought, you know, I'm so relieved, you 

know. The pressure already was off me and I was thinking, well, you know, there's hope for me and I'm going to get better."

MS: "Do you think that a diagnosis, a label, is something that you needed at that point?"

MF: "Yes, because I've been feeling ill for so long and seemed to be getting nowhere at all and as I said when I read all the symptoms of ME I really thought 'well I've had all these' so this is what the answer is, so I was looking probably for a name for everything, yes, and ME seemed to fit the bill at that time."

MS: "Thank you. So a disease gets written up in a woman's magazine and, sort of, becomes 

fashionable. What do sufferers stand to gain from that?"

<Stoppard walks to another audience member>

MS: "Tamara, a few years ago you suffered from what was then a fashionable disease. Tell me what happened."

Tamara: "Yes, well, I got asthma for the first time when I was six years old and at the time I was at a school where I was very unhappy and I used to come home from school and wake up in the night crying and the only way my parents could get me to go back to sleep was by telling me it was Friday night or Saturday night and therefore I didn't have to go to school the next day. But the asthma didn't go away when I left the school, even though I was only there for two terms and it stayed with me for the next twelve years, getting more or less worse and during that time I developed a lot of allergies, which exacerbated it and brought on more attacks...."

MS: "...oh, multiple allergies?"

T: "Yes."

MS: "So it was kind of that 20th century disease." 

T: "That's right. Yes. Lots of food allergies."

MS: "Were there any advantages, looking back, do you think, to being ill?"

T: "Well, at the time..."

MS: "Did you need it as well?"

T: "I think in a way I did. Yes, it did in a way give me something to hang onto. I knew at least 

where I was with with my health and that it was something I could hide behind, for example the allergies provided a security screen, as it were."

MS: "When did you realise that you weren't really allergic to all these foods, that you'd been 

cured?"

T: "About ten years after I've been told I was allergic to certain foods, I got bored of sidestepping them. I've never eaten nuts, for example, and I thought I'm going to try a few, a few won't hurt and they didn't, and a few more didn't hurt and I came to the conclusion, while still being a bit wary of course, that I probably wasn't allergic to them."

MS: "In trying those things and disproving certain of the allergies, what did that do for you?" 

T: "It did make me challenge the rest of it. It did make me think to what extent is this 

psychological? Have I brought it on? Even though I was genuinely ill, perhaps some elements in my childhood, for example, had caused it, and perhaps I could do something to either reverse that or reduce the effects of it, of the illness." 

MS: "But eventually you left home, didn't you?"

T: "That's right, yes. I went to university when I was 18."

MS: "And what effect did that have on you when you left home?"

T: "A staggering effect, actually. My asthma improved greatly. I had an attack six months prior to leaving home, quite a bad one where have been hospitalised and since then, since I left to go to university, I haven't had an attack. I've been much better. And I'm still not quite sure why."

MS: "Well, what do you think about that? I'm tempted to suggest that you might have been 

allergic to home life!"

T: "I don't think it's quite that simple. But I think a part of it was being sandwiched between the 

two other children in the family, never really establishing my identity and always struggling to be recognised and acknowledged as a separate individual and perhaps as special as each of them, even though I was in the middle, and getting away from all that to university, I think really helped because I gained confidence, I came into my own and there was nobody else like me at university."

MS: "Thank you. Dr. Powell, what do you think of Tamara's story?"

RP: "It is a very...very interesting one. One of the things, in fact, to try and give patients is insight into their disease is, because what Tamara exemplifies is somebody having an illness, then understanding that illness, coming to terms with that illness and then not needing modern medicine to sort it out for her anymore, and I, in fact, I congratulated her on her, if you like, maturity and the way she's handled the whole thing."

MS: "I think we all have to. Does Tamara tell us anything about ME?"

RP: "I think there are some lessons to be learned there and one of the things I do with so-called 'ME' sufferers is to try and talk through their problems so that to try and highlight...highlight what they intern must come to terms with."

MS: "Thank you. Well, if a diagnosis of ME can make you worse off, what about those who take the ME test for the virus and it comes out positive? Mr Corder*, you did that, didn't you?" 

MC: "Yes, I did."

MS: "And how did it turnout?"

MC: "The test was positive."

MS: "What did that positive result mean to you?" 

MC: "It gave me credibility for my symptoms because up till that point, I was convinced that my illness was due to the way I thought, it wasn't due to an organic disease at all."

MS: "When you got the news, did it change the things you did or the way you behaved or what you felt?" 

MC: "In the first twenty-four hours I was quite elated, I thought it was going to make a big 

difference to my life but unfortunately it hasn't, and the diagnosis is written down on a piece of 

paper is worthless."

MS: "What do you mean?"

MC: "I am still diagnosed as suffering from anxiety and depression, which has a similar 

background of symptoms and that label will follow me around for until I die."

MS: "What makes you so sure that then you've got ME?"

MC: "Well four years ago I began to feel quite tired and drained of energy, right throughout the 

day and I just kept trying to go to work and finally collapsed on a bus. Went through the normal channels of having investigations, blood tests, X rays, ECGs to be told that there was nothing wrong with me and that I was suffering from an acute anxiety state, referred to a psychiatrist and put through the psychiatric channels."

MS: "Do you still go to work?"

MC: "No, I'm now retired due to ill health."

MS: "And how old are you?"

MC: "34."

MS: "Are you, are you angry with the doctors for not taking note of your symptoms?" 

MC: "In a way I am, it's just that this ME syndrome seems to be regarded as an imaginative 

illness; it's all in the mind, and there's nothing the doctors can do, even when you are diagnosed with that illness."

MS: "Mr Corder, does anything that you've heard today make you think differently about your 

ME?" 

MC: "I have a few doubts in my mind after hearing the doctor say that the ME test that I have had isn't conclusive."

MS: "Did you not know that before?"

MC: "No, I didn't."

MS: "Some people have said that there were things going on in their lives that were very difficult to cope with or face up to? Do you think there could be anything in your life like that?"

MC: "I accept that anxiety and stress do produce these symptoms because I've had them at 

various times in my life before, but I haven't come to a grinding halt."

MS: "Did you still think that you have ME?"

MC: "I'm convinced that I don't suffer from anxiety and depression. But as...as to ME there's still the question mark. Until my doctor agrees with me and there will always be that question mark."

MS: "Thank you. Now, Dr. Powell, that was a rather different story. What do you make of that?"

RP: "That was indeed, and it was also very sad one, but it highlights the problem that I said earlier that a diagnosis of ME actually does nothing for the patient. It isn't transformed into any form of help or treatment and Mr Corder's story is a really very sad one, but epitomises the plight of many so-called 'ME' sufferers."

MS: "Thank you. Sometimes at some point in our lives we may need an illness, and the 

fashionable bandwagon to jump on at the moment seems to be ME. Let me make it absolutely clear - these people are definitely ill, but even given a clear diagnosis it's a label that won't solve your problems and it may make you a prisoner of your disease. Thank you and goodnight."

<show ends>

(*'Mr. Corder' might not be the correct name. The pronunciation is not entirely clear)