mecfsforums.com transcript of the program:
WOMAN: We have Duncan on Line 5.
WRIGHT: Good morning, Duncan. What can you tell us about M.E.?
DUNCAN (Orkney Island, carer for wife who has M.E.): I’m the full time carer for my wife. She’s had M.E. for about ten years. And about three years ago, she became bedbound, when I had to give up work so I could look after her. And it’s just the…it’s one of these things which, as other people have been saying, is just the perception of the illness, like it’s not just being a bit tired. You know, my wife suffers from extreme fatigue. She is in lots of pain. She’s gone on morphine to control the pain. She’s basically bedbound. We’ve got a power wheelchair, but she...
WRIGHT: So, Duncan, take us back to the beginning, I mean how…Your wife is fine one day and starts becoming ill or becomes very ill. I mean how…
DUNCAN: She’s got a level. I mean, at the moment she’s quite bad at the moment so she’s basically in hospital, you know, in a room like 99 percent of the time. But what will happen is she’ll have a day when she’s feeling a bit better, but feeling a bit better could just be being able to watch television for half an hour. WRIGHT: Okay, but take us back to the very onset, did your wife have a normal—a “normal”—life? DUNCAN: Yes, she did.
WRIGHT: And then, how did it change?
DUNCAN: This was before I met her. And then when she was at school, she got tonsillitis and after tonsillitis, she never fully recovered and they went through all these diagnosis things, and basically, eventually, she was diagnosed with M.E. She missed just huge amounts of school, and they put her in a bizarre rehab program in Nottingham, which her mother has always told me that she believes has actually made her worse in the long term. When I first met her, she had M.E. but she was basically on a minor form of it. She basically couldn’t walk very far, but she was okay and what have you, but you know, it’s just one of the symptoms that people forget about is the fact that, you know, her short term memory is basically shot to pieces. You know, she can’t talk to anybody on the phone, because she can’t remember what she said two minutes ago.
WRIGHT: That’s bad.
DUNCAN: I mean, she’s got this. And actually the medical fraternity is… you know, luckily at the moment, we’ve got someone who is pretty good but we’ve done things, we’ve been at the hospital with her before and she’s not been able to swallow, she’s not been able to lift her head, and we’ve had nurses trying to force feed her yogurt. They think she’s faking it. And it’s all…she’s quite ill. And you know, the therapist is all just like, well, you need to get some exercise. And delay the fact that if she does ten minutes of exercise, she spends two days trying to recover from that. It’s very hard. And they say that it’s a new illness. Well, there’s been cases researched from about a hundred years ago they’ve found that there was a huge outbreak in the Royal Free Hospital in London in the 1960’s in which the staff were reported to have caught it. Which I mean, Dr. Shepherd has said quite a few things about this. It’s not a simple illness.
WRIGHT: Ah, Duncan. What a shattering…
ANNE: It’s terrifying, isn’t it? Your life could just completely change…
WRIGHT: And the lack of…of help. Of practical help.
STEVE: It’s the sheer breadth of symptoms. It’s bewildering. It’s…
WRIGHT: I think it’s strange to relate what Duncan’s wife is going through with teenagers being tired at school but that seems to be very vague…
ANNE: But to say “tired at school,” I think it’s…most people would say it’s a much bigger deal than that. It’s something you can’t do anything about.
WRIGHT: I guess so. Time is short. Thank you, Duncan. I want to squeeze one more in.
WOMAN: We take Will on Line 1.
WRIGHT: Will, good morning.
WILL: Good morning, Martin.
WRIGHT: Again, fire away. What do you know about M.E.?
WILL: I was just going to thank you for doing this subject. It brings much-needed awareness to M.E.
WRIGHT: I wish we had more time. I really do.
WILL (Lancashire) : Quick history of M.E. M.E.’s been around for seven decades. At _____ College, as mentioned. There was an outbreak at the Royal Free Hospital, which infected doctors and nurses.
WRIGHT: So it was infectious…People… you could catch M.E.? Is that what we’re saying?
WILL: There was an experiment, actually done in Australia in 1949 where they transferred the putative ___ of M.E. to monkeys. So the question is, if 250 thousand people have M.E. in the UK, how would they get it?
ANNE: But I presume there is nothing that the doctors can look at under a microscope. They can’t find anything physical.
WILL: There’s been very little biomedical research in the UK since the 1980’s.
ANNE: Because, you know, it sounds like a virus almost…
WRIGHT: Well, I have to take a break. I want to know one thing you want to say, say that we need to know, that the public needs to know and that you want…one thing that would make a difference.
WILL: We need to leave the Stone Age. It is an invisible disease. People treat me like .. well, I mean, I am invisible. I can’t speak to many of my friends any more. My wife saved my life. Well now, we are left alone, and we have not only is the disease invisible, I’m invisible.
WRIGHT: Honestly, Will, I can’t think of a phone-in I’ve found as disquieting as this one, and then as ___ was saying, the phones have rung off the hook. It makes you think quite how callous that Yuppie Flu tag was when they’re…
ANNE: Yes, and then you’re suffering from that and you’re still having people disbelieve…
ANNE : Yeah, it must be dreadful.
WRIGHT: Unbelievable. Sorry we couldn’t give it any more time. We will do it again. We’ll do it again.
transcript of the program
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