This is a transcript of the Channel 4 Frontline documentary, presented by Dr Anne Macintyre, broadcast on 25th July 1993. It features the young Lynn Gilderdale, then a year and a half into her long illness, as well as Ean Proctor, who had been forcibly removed from his family and subsequently subjected to abusive treatments in hospital.
Key to those who appeared:
- AM: Dr Anne Macintyre, presenter
- BP: Barbara Proctor, mother of Ean Proctor (EP below)
- DC: Dr Durval Costa, Honorary consultant physician, Middlesex Hospital
- EP: Ean Proctor, teenage boy who had been severe ME sufferer
- JMa: Jackie Macklin, female ME sufferer
- JMo: Professor James Mowbray, prof. of immunopathology, St Mary’s Hospital
- KG: Kay (Bridget Kathleen) Gilderdale, mother of Lynn below
- LG or Lynn: Lynn Gilderdale, then 15-year-old ME sufferer
- NH: Neville Hodgkinson, science correspondent, Sunday Times (Murdoch-owned London broadsheet)
- PH: Dr Peter Hudgson, consultant neurologist, Newcastle General Hospital
- RG: Richard Gilderdale, father of Lynn
- RH: Rosemary Hewitt, ME sufferer (Royal Free outbreak)
The transcript is taken from various sections of the programme, which lasted 30 minutes in the original, posted to YouTube. They can be found here: part 1 featuring the Gilderdales and Peter Hudgson, part 2 featuring Dr Durval Costa and Jackie Macklin, part 3 featuring Rosemary Hewitt, part 4 featuring Neville Hodgkinson of the Sunday Times, and part 5 featuring Hudgson, Ean Proctor and his mother, and Lynn and Richard Gilderdale.
Note that the BBC also broadcast a documentary, as part of their Panorama strand, entitled Sick and Tired, in November 1999. This exposed children being locked on psychiatric wards as part of a so-called rehabilitation programme, and another who was made a “ward of court” (i.e. his parents were stripped of their parental rights) and incarcerated in a London hospital for eight months, while suffering from severe ME in the 1990s. None of those mentioned above featured in that programme. You can find the transcript of it here (plain text file).
(Program opens with an old-fashioned clock with bell chiming at five o’clock. Cuts to footage of Lynn Gilderdale, lying in bed with feeding tube in her nose. Camera pans from her fish tank, showing Lynn, the wall with magazine pictures, her bedside fan, shows the mostly obscured window, then Lynn putting her hands over her ears with a distressed look on her face.)
AM: Lynn Gilderdale is fifteen years old. She’s imprisoned by paralysis, mental confusion and pain. Her memory is so bad, she can’t recognise her family each morning. She lies in semi-darkness, avoiding the light that hurts her eyes, shutting out the noise that hurts her ears. And yet the hospital says there’s nothing physically wrong; it’s all in her mind.
(Theme tune, with title: Frontline, Anne Macintyre)
(AM shown opening door signed “Lynn’s room” and walking in. She leans over LG and talks to her; she responds by rocking her hand from side to side in an ambivalent gesture, then nodding.)
AM: Lynn has an illness known as ME, Myalgic Encephalomyelitis, or Post-Viral Fatigue Syndrome. The less charitable call it “yuppie flu”, “psycho-somatic attention seeking”, “over-breathing” or just malingering. I know how she feels.
(AM leans away from LG and talks to the camera.)
AM: Like Lynn, I also have ME. Seven years ago, I was able to work full-time in a busy hospital, and I used to enjoy hill-walking and climbing and sailing at weekends, and I had a very busy life. Then I got a severe throat infection, coupled with severe muscle pains all over and muscle spasms, and this left me unable to walk properly for several months. It also blasted my brain so that I couldn’t think and I got terrible confusion, and I used to weep for no reason at all. Fortunately, I’m very much better. I’m nearly recovered, but I still have a lousy memory, and there are still bad days when my speech slurs a bit and I can still fall over.
(Camera moves away from AM and moves around room, shows LG cooling her face with a cloth.)
AM: Having ME, like Lynn, means you have to fight two things: the illness and the prejudice. Deep down, the root of the problem lies with the medical profession itself, and I think, their inability to deal with things they don’t understand. It’s difficult to say what’s typical, but one doctor who didn’t know I had ME explained his views to me, but didn’t discuss individual cases.
(AM and Prof Hudgson shown getting out of lift and walking through hospital corridor; cuts to Hudgson in his office.)
PH: The one absolutely clear-cut clinical feature in this disease is the personality profile of the people who develop it. Many of them have profound psycho-sexual difficulties with partner relationships and life in general, and they, uh, they’re people who just aren’t very happy with the life situation that they find themselves in. Now most of us would say, “now, I recognise that in myself”, if you like, but it’s a question of how you react to it.
In one particular incidence I came across recently, the father said that if he peeled the potatoes for dinner, he was completely exhausted for several days. Now, I do not believe for one moment that that reflects organic dysfunction of any aspect of the nervous system from the motor cortex [points to his head] down to your fingertips. I think that is bound to be, to use a colloquial phrase, “in the mind”.
(Cuts to Gilderdales’ back garden, AM with LG’s parents. LG’s father Richard passes AM a picture of LG with her brother Steve.)
RG: Celebrating …
AM: Oh, she looks so happy and alive …
RG: Certainly does.
AM: Talking to Lynn’s parents, you realise how many doctors believe it’s all “in the mind”, and how desperate this makes people with ME feel.
(RG passes AM another picture of Lynn standing on beach, surrounded by small sailing boats.)
KG: Consultants, I think their attitude was, ME is something where you are tired, and if you start developing other symptoms, and they go on and on, you’ve not got ME, you’ve got hysteria or some other psychiatric problem, maybe because they don’t know what to do about it, there’s nowhere for them to turn.
RG: Oh, we felt at the time that they wouldn’t admit if they didn’t know. We had terrible trouble getting hold of, contacting people for advice, for help; we felt totally isolated and we were frightened; we didn’t know what was going on with Lynn, as was she, she was petrified. She felt she was dying; she said that on many occasions, that she was dying, and asked us to help her.
(Cuts to Lynn in darkened bedroom, then to footage of KG pouring LG’s liquid food, walking into Lynn’s room then attaching the bottle to the pump.)
AM: It’s hard to believe Lynn was once an energetic schoolgirl, who spent her time swimming and playing tennis. Now, she’s so ill that she’s unable to swallow food and has to be fed through a tube up her nose.
KG: When you get nurses who say to you, “well I know, you know, she can do that if she wants to”, how do they know? How can we even begin to prove to them that Lynn is very ill, when we’ve seen what Lynn has had to go through, when they’ve got closed minds like that? Probably in the whole history of medicine, people and medics have been very slow to accept anything that they can’t see proof of. And they can see, maybe, Lynn’s ill, but they can’t do a test and have it in writing.
KG to LG: Thank you. How’s that, Lynn? Right? You’ll feel better once you’ve something in your tum, eh?
(LG takes long feeding tube and places it behind her pillow.)
KG: We don’t need Lynn to prove to us that she’s ill; we know she’s ill.
(Cuts to AM getting into London black taxi.)
AM: Having seen Lynn and how ill she is, I’m absolutely baffled. I cannot understand how any doctor could call her condition hysteria. I still cannot understand why so many doctors dismiss ME, particularly in such severe cases. They should get inside my body and experience how sick and poisoned I can feel. The trouble is that some doctors only believe an illness exists if they have laboratory proof. It can become a substitute for listening to the patient. Fortunately for the 150,000 ME sufferers in Britain, we’re at last coming close to conclusive proof. I’m on my way to the Middlesex Hospital, where vital research is showing that the brains of ME sufferers are physically different.
(Shows Dr Durval Costa at his desk, with brain scan images on his computer screen.)
AM to DC: Some ME patients have been accused by some doctors as having something like hysteria or an imaginary disease. Do you think that your SPECT scan results help to refute this?
DC: At least what we can say is that, the images we can obtain of patients with Myalgic Encephalomyelitis are different from the images we can obtain from normal volunteers, and they are different from images we can obtain from patients with other diseases. We found out that, in every patient, we can observe changes of blood supply to certain areas of the brain.
(Cuts to footage of Jackie Macklin being helped out of a London cab and into a wheelchair.)
AM: This is a crucial breakthrough. To test it out, we asked Jackie Macklin to take part in this pioneering study.She believes she’s had ME for three years, but she has been repeatedly dismissed and told it’s hysteria and “all in her mind”.
(Footage of doctor preparing, and JMa receiving, an injection.)
JMa: I’ve been called a time-waster, attention seeker, parasite on the resources of the National Health Service, and I’m 39 years old, a mother of three, and I don’t really think I’m ready to be written off yet.
Doctor to JMa: OK?
JMa to Doctor: Yes.
AM: Compared to those who are not affected, she did have abnormal blood flow to her brain, and it matched the pattern he’d [Costa] found in other ME patients.
(Cuts to AM sitting on grass in field, stroking a cat, then to horses playing in field.)
AM: Another finding that I think suggests a physical cause for ME comes, funnily enough, from horses. A link between ME and viruses has been found by Professor Mowbray.
JMo: I had a phonecall from a vet in Newmarket, a group of vets who were particularly interested in horses, and racehorses. And he said, “I’ve been asked if I would phone you because you know something about fatigue syndromes in people. And I have a group of horses who have a change in their white cell counts that doesn’t occur in men, and they have a fatigue syndrome. And could it possibly be the same? And they either won’t go out for exercise, or can’t be dragged out of the stable yard, or when they are dragged out, they pull up from racing or exercising”. And I said, “well it sounds very similar, let’s have a look and see, so we looked and we found, very much to our surprise, that they had a virus protein of enteroviruses in the blood. Indeed the only horses with enteroviruses known are those with this fatigue syndrome.
(Cuts to laboratory footage)
AM: The link between horses and viruses supports similar research on humans. I am sure that my own illness, and all those I’ve come across, have been triggered by a virus.
JMo: About ten years ago, we decided to show whether there are some people who have fatigue syndrome who really did have long-term infection with a virus. We chose to study enteroviruses because they were the ones from which there was some evidence from previous work that enteroviruses might be implicated in patients with fatigue syndromes. We then showed that there was actually a virus infection in a group of patients, and that when tested a year later, they still had the same strain of virus; in other words, they were truly chronically, persistently infected, and that when the virus went away, their symptoms went away.
(Cuts to field, with AM feeding a horse out of her hand and petting it.)
AM: Horses can get ME, with enteroviruses in their blood, just as has been discovered in humans. It really makes me mad that this can be accepted in horses, who don’t have to go and see psychiatrists to get better, but yet denied in humans, who are still disbelieved and told that they’ve got an imaginary illness. Do horses get hysteria by copying each other’s symptoms? Horses, when they’ve got this fatigue syndrome, ME, they’re allowed to rest quietly in their stables until they feel better, and then they’re allowed to exercise as much as they’re able to. (A horse is shown running round the field.) They’re allowed to get better naturally in their own time. So why can’t humans with ME be allowed the same thing?
(Cuts to Charing Cross station, London.)
AM: But how did we get into the situation where ME patients can carry the label “malingerer”?
AM to ticket seller: Day return to Tunbridge Wells, please.
(Ticket seller quotes price, money and tickets shown being exchanged.)
AM to ticket seller: Thank you very much.
(AM walks towards train and gets on. AM reads from biography of Florence Nightingale while riding.)
AM: I believe it’s because doctors’ opinions may be based on ignorance. Until I became ill, I hadn’t even heard of ME, even though I had a degree in medicine. I wasn’t taught it in medical school, there was no mention of it in my textbooks. This lack of information considering it’s not a new disease.
(AM looks up from book and talks to camera.)
AM: Florence Nightingale probably had ME. When she returned from her very hard-working job in the Crimea, she became unable to walk, nor to cope with conversation, for the rest of her life. And yet, from her bed and her couch, she proceeded to re-organise all the nursing services in this country. Nobody could accuse her of being a yuppie or a malingerer.
The best-known outbreak of ME in this country took place in 1955 when nearly 300 hospital staff in London developed an illness over four months. They complained of fever, painful limbs and neurological symptoms. I’m going to see one of those people affected at the time. If ME is mere attention-seeking or stress, you would have thought it would have worn off by now, especially in peaceful Tonbridge. But Rosemary Hewitt is still suffering from what I’m sure is a persistent viral infection.
(Cuts to AM and Rosemary Hewitt in dark room, with RH pouring tea for them both.)
RH: I was very ill, it was obviously - my brain seemed to have been affected, and in fact afterwards it was damaged and I couldn’t sit up, I couldn’t walk, I couldn’t do anything for quite a time. And as I began to get better and tried to walk again, standing seemed almost as difficult as walking and obviously, something was really radically wrong.
AM: The virus that affected you back in 1955; I believe it must have been a particularly virulent one.
RH: It must have been because of the way it spread; because as a head, I’ve been in contact with plenty of viruses, and I’d nursed umpteen children, particularly during the war when we evacuated the school and turned it into a boarding school, and there were 50 cases of chickenpox and almost as many of mumps sometimes; it wasn’t a question of either being under tremendous stress or that it was a virus that hit us. But there’s no doubt about it that anybody who has ME, and ME that lasts just under forty years, is very badly affected, because although you have times when you feel better and you could look to the public as if you’re perfectly well, I mean, people will say, “now, how well you look”, it doesn’t mean that the legs, the arms, the throat, the diaphragm, any of those bits are still working 100%.
(Various newspaper cuttings are shown, with the years of publication appearing beforehand.)
AM: After the 1955 epidemic, two psychiatrists published a damaging article, saying it was hysteria. This view has continued ever since, despite the World Health Organisation’s recent classification of ME as a disease of the nervous system.
(Cuts to AM outside News International complex in London; AM has a copy of the Sunday Times in her hand.)
AM: This is the sort of article that does a lot of damage to people with ME. The headline says “yuppie flu”, and “it’s all in the mind”. Well, I’m off to see the journalist who wrote this.
(Cuts to Neville Hodgkinson in Sunday Times newsroom.)
NH: “Yuppie flu” actually conveys something that is relevant. The yuppies were the people in the 80s who were leading this intensely hard-striving, materialistic life, not much personal insight, just work work work, gather lots of material perhaps, go for success in conventional terms, and from everything I’ve heard, I do believe that quite a considerable proportion of the people wh have suffered from ME have been individuals who have got caught up in exhaustion arising from that kind of lifestyle.
AM: I think the term “yuppie flu” is very derogatory and is not an accurate presentation of those with ME. The reality of the disease is far, far more devastating than that.
NH: I’m not saying that they were greedy and selfish, but that they were caught up in striving very, very hard for certain goals, and when those goals seemed to be frustrated in some way, this condition arose in them. One of the best descriptions I’ve heard of it was from a doctor at the Institute of Psychiatry, I think it was, who said it was like having one foot on the accelerator and one foot on the brake, that produces a kind of internal crisis whose only end result is this deep, deep exhaustion and ultimately, a kind of despair.
(Cuts to hospital footage.)
AM: There is no doubt that the mechanism of this disease is baffling, and in all chronic illnesses there may be psychological factors. The trouble is that it’s so much easier, and cheaper, to go on treating the disease as psychiatric rather than funding complicated research into a precise cause. I think some psychiatric labels are just a grand way of saying “I don’t know”.
PH: I don’t know what ME is, but what I’m absolutely certain of is that it is not an organic illness. I don’t want to make too much of the sexist issue, but something like four fifths of the people I deal with, if not more, are women in early middle age who have unsatisfactory marriages, who have children who are making life difficult for them, and all those of us who have raised families will know exactly what I mean because they do take up an awful lot of your time, not to mention your money, and they are prohibited from going ahead with what they wanted to do in terms of personal achievement professionally, most particularly, so I’m not denying for a moment that these people are well (sic); they’re not, they are sick and they need help. It’s a uqestion of why they are sick and the best way to go about helping them and understanding the illness, whatever it is, is all about.
(Cuts to AM outside Richmond House in Whitehall, London; she walks into, and is seen talking to receptionist at, the Dept of Health building.)
AM: I think the government ought to take a lead in this matter, but the Department of Health claim that it is not their responsibility. I wanted to talk to the Secretary of State for Health, Virginia Bottomley, about this, but all they could give me was a statement.
(AM walks out of DoH building and reads to camera from printed statement.)
AM: Well, among other things, the Department of Health does recognise ME as being a serious and debilitating condition. I’m very pleased about that, but a lot of doctors don’t recognise ME as serious and debilitating, and they only will when they’re given some information from the Department of Health.
(Cuts to more hospital footage.)
AM: But they say it’s not their practice to circulate to the medical profession information that could be interpreted as clinical guidance. All I can say is that it’s about time somebody did. Even doctors who sincerely believe it’s mainly a personality problem in middle-aged women admit that it’s puzzling when youngsters get it. The problem with some current beliefs is they mean that treatment can be wildly inappropriate.
(Cuts to rocks on seaside, probably on Isle of Man.)
AM: Look what happened to Ean Proctor.
(AM and EP shown walking along beach, talking to each other.)
AM: I find the problem with walking like this is my balance. This balance problem’s very common in ME. Did you have this when you were ill?
EP: Yes, I had a balance problem when I was ill and when I was getting better. When I was on my crutches I used to wobble around all the time, couldn’t balance properly.
AM: How about going up and down stairs?
EP: Stairs used to be a real problem. When I was ill, my parents used to really have to carry me up stairs.
AM (voice-over): At 12, Ean got ME and became paralysed and mute, but because no abnormalities showed on his tests, doctors dismissed him as school-phobic. His parents vehemently contested the psychiatric diagnosis and paid a terrible price. Ean was taken from them and kept in a hospital ward for five months.
(AM and EP sit down on stone steps from beach to road above.)
EP: Well, first of all, there was a knock at the door, and my Mum went to the door to see who it was, and it was my GP, we thought for a normal visit to see how I was. And he told my Mum that he had two social workers with him and that they were going to take me away to a place of safety. I couldn’t believe it when they told me; I was so scared that I started to cry.
AM: Did they tell you why they were doing this?
EP: In the ambulance, the female social worker told me that they were taking me away because my parents were letting me die.
AM: Your parents were letting you die?
EP: Yeah, which I didn’t believe at all, and it didn’t really comfort me at the time; I was still crying.
AM: How were you treated when you got into hospital?
EP: First of all I was stuck in a ward, a single ward on my own, with no way of calling any nurses or anything. I wasn’t allowed to see my parents for the first week, and after that I was only allowed to see them for half an hour every day, and my brother and sister half an hour every day. They put me in a standing frame, to get me to stand up. They used to race down the corridor with me in the wheelchair and suddenly stop to see if I’d react or anything. They even took me swimming, and let me go under the water one time.
(Boy shown dropping into swimming pool with arms outstretched.)
AM: The theory was that he was faking his paralysis, and would surely swim.
EP: They let me go in the deep end. I was paralysed, couldn’t speak, and I was scared, didn’t know what was going to happen to me. I didn’t know if they were going to bring me back up or not. They thought I was just mentally ill, or pretending, or school-phobic, and they thought I’d just swim to save my life.
(Cuts to footage of ghost train, with screaming noise in background and “you will die” sign.)
EP: They also put me on a ghost train. I think the idea of that was to scare me into moving or something. I was totally distraught, I was crying all the time.
(Cuts back to beach.)
EP: I am very bitter about the way I was treated. Most of the doctors didn’t really want to understand what the illness was about; they didn’t really care how I was treated, they just wanted me better instantly.
(Cuts to Proctors’ house.)
BP: We were treated like dirt a lot of the time, as though we weren’t Ean’s parents. It’s a horrible feeling. I mean, we never thought, in our wildest dreams, that they could just walk in the door and just take your child when all we’d done was try to find out what was wrong with him, not deny him anything. And we were being accused of love, and of trying to get our son well. They don’t want to listen to you; you’re just being an over-protective, fussy parent if you try to say anything. I can remember in, I think it was the Butler-Sloss report, wasn’t it, one of the most important things she said, after Cleveland, “listen to the children”. They don’t. Nobody wanted to listen to Ean at all.
[Note: Cleveland refers to a scandal in which children were removed from several families in north-eastern England because of suspicions about abuse. The conduct of the medical examinations and other aspects of their care were severely criticised.]
(Cuts back to Lynn Gilderdale’s room. RG walks in, drapes a towel over Lynn’s chest, puts a bag of some kind down her left side, and takes out a hamster for LG to play with.)
AM: When psychiatrists diagnosed the 1955 hospital outbreak as hysteria, they made a fundamental mistake. The scandal, for me, is not that flawed diagnosis but the inability of some of the medical profession to admit they could be wrong, despite evidence to the contrary. And the problem goes deeper than the prejudice and social stigma of ME sufferers. It goes to the very heart of how illness is defined. We are all victims of a medical approach that believes illness exists only if it can be physically tested. Modern scientific techniques are all very well, but they shouldn’t be at the expense of listening and learning from the patient.
RG: She has gone through absolute hell. If there was any way she could have got out of it, she would. Recently she turned round to me, and she said to me, “Daddy”, she said, “I’m sorry for ruining your life and Mummy’s life”. She’s been lying there and whispering, before she lost her voice, “help me, help me”.
(Cuts to Jackie Macklin being helped off an examining table.)
JMa: I’ve really got to the end of my tether now, because I don’t know where to go or how to proceed with so much stacked against me. I’m not sure how to carry on with things; I can’t — I know that I’m not very well, and I can’t carry on if I’m going to be criticised for the way I’m managing my life.
(Cuts to Proctors’ house.)
BP: That moment will live with us for the rest of our life, the day they walked in. We will never, never, ever forget it. I don’t think we’ll ever get over it.
(Cuts to outside Noble’s hospital on Isle of Man.)
BP: Our child said, at one time, in a hospital where nobody believed him but us, he turned to us and he said, “do I have to die to prove how ill I feel?”
(Repeat footage of “drowning” boy in pool, followed by brief clip of “ghost train”. Video ends.)