The Transcript Of "Link", Broadcast 9th August 1992

Central Television/Independent Television, 9th August 1992.

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.

Clare Francis: "I knew something disastrous had happened, but it was outside my experience and and indeed anybody's experience of normal illness, and this is what is so extraordinary about ME." 

Peter White: "Fifteen years ago, Clare Francis captured the public's imagination when she sailed the Atlantic singlehanded. Changing course, she achieved equal success as a thriller writer. Yet, by far her greatest concern at the moment is to gain wider understanding for ME, the condition, which over the past five years, has radically altered that action packed life." 

CF: "I was completely poleaxed. I tried walking up the street and could only get halfway before my muscles refused to function. My head symptoms were probably even more worrying because they...it was like having an explosion inside my brain. I couldn't think, I couldn't concentrate at that stage, I couldn't hear very well and I couldn't speak. I couldn't translate my thoughts into speech very well and my speech was slurred and I felt...exhaustion is almost an inadequate word because, of course, in my sailing days I knew all about healthy physical exhaustion, which is rather a nice feeling in an odd sort of way, but this was an exhaustion which was...it was as if I'd been hit very hard on the head, um, and terribly hungover and flu like and almost drugged, I mean it was almost as if someone injected some dreadful chemical into my body."

PW: "What did you think it was?" 

CF: "You're not having something that you can think 'I recognise this. I recognise this as something familiar, something I can relate to'. You can't relate to it at all, it is so extraordinarily different and unusual."

PW: "What kind of negative attitudes did you encounter from doctors?"

CF: "Well, the neurologist said there's nothing wrong with you but you're a single working parent, aren't you?, as if this was an explanation of why I was ill. I think the suggestion being that this had put unacceptable strains upon me that I couldn't cope with and I knew that wasn't right as well. I've worked for myself, I've been self-employed for a long, long time and I've been the breadwinner for a long, long time and I've always enjoyed it and that hasn't been a problem, so I knew that wasn't right, and I also resented the suggestion that it was a psychosomatic illness in some way because it was so overwhelming, and I might...I trust...at least I trusted my judgment but this wasn't sufficient of an explanation, to put it mildly."

PW: "What about the suggestion that it's something to which high achievers are particularly vulnerable, that, I mean, would apply to you, wouldn't it?"

CF: "Well yes, it would. But again, the statistics don't really bear that out and our experience of the many, many sufferers we had contact with, which is now many thousands, is that this isn't the case. What does happen is that the high achievers complain more, they're more vociferous when they're are struck down by ME because, of course, it's even less acceptable to them than it is to anybody, er, somebody else and in some ways used to be able to do exactly what they want when they want in the way they want is going to complain more, and, er, of course they make more noise, so that's where I think this...this arose, but, er, all sorts of people get ME and we can't really see any pattern to high achievers. High achievers might get ME worse, that might be true because they don't listen to their body, what their body's saying, when their body's saying you are ill slow down and stop. They are less inclined to listen, so it may be that they get it worse but they don't get it more frequently." 

PW: "Can I just press this one stage further? The feeling that some people have expressed that this could actually be at something which high achievers get who desperately want a way to stop but can't."

CF: "Well, that's a convoluted psychiatric argument, isn't it? I...I think this...it's really 'what happened to you in the woodshed when you were a child?' argument; it's life events argument. It's the idea that if you go back far enough, there's a reason for an illness buried deep in your childhood. Now I think this is unarguable in the sense that you either believe this or you don't, there's no way to prove it all either way. I can only say that the children I've seen with ME have come from happy backgrounds with nothing to fear in their lives at all, subjected to no more pressure than any other children, and I think when you see ME in children, it's so clear cut that this must be a physical, purely physical illness that I really don't think you could ever argue that that argument holds water."

PW: "So why do you think people persist in this kind of argument, this kind of doubt?"

CF: "I think that's very interesting. I think that they persist in it because firstly doctors have been encouraged by us the patient, as much as anybody else, to be able to give firm answers to things. I think we've demanded this of them, we've said we want answers, so when they can't find a physiological answer to a disease, then they pass it along through the specialities - I call it 'passing the parcel' - it's passed to neurology, goes on to somebody else, and it ends up in psychiatry which, I don't think I'm being unfair to say, never turn people away. And, of course, there are psychiatrists who say this, who've said to ME sufferers, you know, this is nothing to do with me, this is a physical problem. But generally speaking, they don't turn people away and so ME has ended up, before now, in the psychiatric department and once there, people are loathed to let it go." 

PW: "Why does ME have to have a label?" 

CF: "Well, it really falls into two sorts of people: people who don't want to know; people don't want the label at all, want to have something else, they'd rather have almost anything else than ME because they fear ostracism, they fear not being taken seriously, and then the other half who've recognised the fact that they are seriously ill and are angry and isolated and frustrated, and who want to say 'I have something with the name attached to it', and it's extraordinary how these two different groups see the illness differently. It's often people who first get ill who don't want the label, they'd rather not. They'd rather think they were going to get better easily and quickly with a magic bullet, you know, that all they need to do is go to a doctor and take a pill and it takes them a while to realise that it's not going to be as simple as that."

PW: "What's the role of mutual support for people who have ME?"

CF: "Well, again, mutual support, it's a very strange thing because it cuts both ways. It's very important to know that you're not the only one, that there are thousands of others fighting the same battles, that you are not a freak, you're not this strange person that the whole world is looking at askance. But at the same time, people who join groups can find it a depressing experience because here these people who are not getting well and they need to believe they're going to get well, and that's quite right. It's a very important thing to believe you're going to get well because a lot of people can beat ME totally and others who are chronic sufferers can learn to manage the illness very effectively."

PW: "You're saying that ME can be fully recovered from, can you?"

CF: "I'm saying that if it's caught quickly enough you can recover from it fully, particularly if you're young and particularly if you've enjoyed very good health beforehand. Some people are not so lucky, but it's...it's not...it's not a sort of living death sentence, if you understand me." 

PW: "Doesn't the range of therapies and treatments...isn't that open season for charlatans?"

CF: "I'm afraid it is open season for the charlatan and, in fact, there are a lot of people making a lot of money out of ME sufferers and that is, I think, the unacceptable face of, particularly, alternative medicine, although alternative medicine does have quite a lot to offer. So, I think the greatest thing, well, I hope one of the greatest things that ME Action has done, or is doing now, is to provide an impartial voice because that is our main function as I see it, is that we are the source of information that the ME sufferer can turn to, without fear of being sold something and we don't subscribe to orthodox or alternative therapies just for the sake of it, we take from whatever field is offering whatever and we tested, or we ask sufferers if it's any good, and then once we're convinced that has something to offer we will offer that as a therapy information sheet to our sufferers and they can be reasonably confident that firstly it won't do them any harm and that secondly it...it will be able to help, at least proportion of, ME sufferers."

PW: "Are there not dangers in self diagnosis?"

CF: "There are dangers in self diagnosis because you might have a disease such as Lyme disease, lupus disease or MS which should be dealt with in another way, I mean, that's an obvious danger and you might have something completely different, I mean, you know, you might have even cancer or AIDS or something like that, so this really should be examined properly, that's a very important thing. Having said that, there are people who I think perhaps have jumped on the bandwagon, people perhaps with psychiatric illness, people with a desire to...have attention who have jumped on the bandwagon, which is unfortunate. But I think that was bound to happen with the degree of publicity that I ME had a few years ago and which was really a necessary part of getting recognition and that's unfortunate, but it was almost bound to happen." 

PW: "Where has ME left you now, if you compare the person you were before it came along and the person you are now, what? Where are you?"

CF: "I think my life is more difficult than it used to be personally, of course, but at the same time I've...it's an extraordinary thing because when I went public on ME, I thought 'God, what have I done?' because I was inundated with letters and I thought I can't cope with this because of course I was still very ill at the time and I really couldn't cope with very much at all, um, but I'm...I'm very happy to be the spokesperson for ME because I know we've still got a long way to go in getting ME fully understood and I'm very happy to fulfil whatever role I can because I'm intensely curious about what causes ME and I want to be in on putting in the additional pieces of the jigsaw to understand this illness, I don't want to be left out! So in a way, I'm...although ME has been personally, erm, something unpleasant in my life, something I'd...in some ways prefer to forget, on another level, I know that I'm going to be involved in it for a very, very long time to come, but I think it's very important that ME sufferers feel represented, adequately represented, and I think it's very important they understand what ME Action is all about, which is all about helping yourself to better health, which you can do." 

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<voiceover>

"If you'd like more information about today's programme, please write sending a large stamped addressed envelope to Link, P.O. Box 2825, London, W6 0JR, that's Link P.O. Box 2825, London, W6 0JR."

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