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Criona Wilson interview - BBC Radio Sussex & Surrey


Off the fence
I live near Criona Wilson, and have been treated by the GP referred to here who got the psychs involved in Sophia's case. I took the time (since iPlayer keeps items for a week) to transcribe this important and moving interview.

I have removed fluffs and err - umm's


In this hour of the programme, we will be hearing the very moving story of Croina Wilson. She watched her daughter, who went from being a vibrant young woman, filled with the joys of life, to being barely able to potter between the bedroom and the bathroom, just about able to lie on her living room sofa. Now so often you hear the condition ME dismissed as Yuppie Flu, dismissed as some sort of psychological problem, but we will be hearing this very moving story that indicates - this was the first person in the country, Sophia, was the first person in the country to have ME recorded as the cause of her death.

Joining me in the studio is Criona Wilson. good afternoon, Criona. Hello. Now I have some photos of your beautiful daughter, and she was a very beautiful young woman, very vibrant looking, Yes. who very sadly was affected by ME. Just tell us the moment that you realized that there was something not quite right.

It was in 1999, Sophia got flu, and she couldn't recover from it, and at one stage we went out to the shops, and we crossed the road, and it was like being with somebody who was a hundred and twenty years old. It was very slow motion. I had never seen the like of it before, although I trained years ago as a nurse and a midwife, and although I'd never seen ME when I was nursing, I thought she had ME then, that was in September '99, and then she came down to Brighton, I brought her down for a visit in December of that year, but half way down in the car I couldn't go forwards and I couldn't go back, because the car was making her so desperately ill. When she got to Brighton, that was it. She never left Brighton again.

To see your daughter go from someone who embraced life, enjoyed life, to be someone who was barely able to move between the bedroom and the bathroom, must be so incredibly frustrating. Was there anything that could be done to help her, particularly?

Well, medically, um, because there's no research for ME, I didn't know all of this at the time, the GP appeared to be kind, but with hindsight I realised the GP was getting the mental health people involved, and Sophia didn't want this, and in tandem with this Sophia, through the GP, was allocated to a high-rise flat, which in itself was a very good move for her in one way, but she was the walking wounded at that stage, and she could walk from the bedroom to the bathroom, and lie in the bath for about an hour, and that would relax her.

But anyway after three months, she crashed and I didn't know what had happened, and when I got tests done, carbon monoxide was coming up through the vent in the bathroom, and she was being poisoned and that was the beginning of the long journey towards her dying.

The mental health team were involved with this case, and the implication there is that in some way her symptoms were psychological, and you knew full well that this wasn't the case, it must have been incredibly frustrating?

Well since 1969 the World Health Organization has deemed ME to be a physical neurological disease. It is not a mental illness, but in this country for the past four decades there has been a cabal of psychiatrists, who are payed one way or another by the medical insurance companies, so they then have kept this ME in the realm of mental illness, no matter what the World Health Organization says, and this group of psychiatrists actually advise the Government on ME. It's crazy. It's the lunatics in charge of the asylum, it really is.

So if I presented to my GP with these symptoms, and they assumed I had ME, they would treat my mental health, as opposed to my physical health, would that still be the case?

Generally speaking, you do get a few good doctors, you do get a few psychiatrists, who do treat this as the physical disease that it is, but these people are very rare, and if you have them you are just so lucky to have them. Generally speaking the (ME) people are treated as having a mental illness. I've even met doctors themselves, and their family members have got ME, and they are to frightened to come forward

This must have been so increadably heartbreaking for you. You watched this woman who was vibrant, enjoying life, should have been celebrating her adult life, you watched her barely able to move. How was that for you?

It was awful. When Sopia crashed all she could do was lie in a darkened room, and I don't mean a dark room as you or I would think of it, it had to be completely and utterly blacked out. Not a prism of light was allowed to enter into it. She also had to wear bandages over her eyes, she had to have her ears plugged, she couldn't be touched, all of these things if they happened they made her more ill. She couldn't listen to a radio or watch TV. All she could do is lie on her right side, she couldn't have, for example, since she crached, she couldn't have a bath, or a hairwash, she didn't have all those years, all those five years. And she couldn't have visitors. For somebody so young, and so vibrant, it was - it was a living death. It was awful.

How did she cope with all this? What were the kind of conversations that you had with her about all this?

She couldn't speak most of the time. She wasn't able to speak. But when she could speak, because there was a time when she was getting better, but then after that they sectioned her in a mental hospital, but when she could speak, she was lucid, but in order to stop the symptoms increasing, and they change from day to day, from hour to hour, Sophia had to as it were absent herself, and not let her imagination go nuts, not do anything just stay centred. I can't imagine what it was like.

What did being sectioned in a mental hospital do? What did that do to her?

That was a death sentance. An absolute death sentence. Because at that time Sophia's GP ha wanted her to take the psychiatric unit. They got me to check it out, and they wanted her to go into a particular clinic, so I phone the few people I knew who had been in that clinic, they were terrified of their names being used, so I promised not to use them. But they said that in that particular clinic, although it was called an ME clinic, they were treated on the lines of mental health having graded exercise and stuff like this, so because of that, Sophia elected not to go into it, and at one stage the doctor got a psychiatrist - she asked three or four psychiatrists involved in Sophia's case. She told me that they refused, she eventually got this psychiatrist that agreed, and he came to see Sophia just the once, he never examined her physically at all, her blood pressure was very very low, everything about her, she needed to be physically examined. But that wasn't the case. He gave a talk on her the following day and it was awful. I was there for part of it, it was horrendous. And then he called me to the hospital about a week later, and he said that if Sophia didn't get better in six months, or if she didn't go to this clinic, he would section her.

You were proved right, in a horrific way really, she was the first person to have ME recorded - or complications as a result of ME - recorded on her death certificate, as the cause of death. Is that right?

Well, some people have said that to me, I don't know, because I'm not well versed in this. Other people have died from ME, in this country, but these are figures that have been quoted to me, I don't know if they are correct or not.

And tell us about when she died, did she just slip away as the result of being so weak?

Well, after she was sectioned, that will be the beginning of the end, because prior to that, you see, Sophia had been getting better, she had been having visitors, and she'd been sitting up and the curtains were open and the fresh air was in, it was lovely. But they had decided on this, because bear in mind when I eventually got the paperwork on this which wasn't all the paperwork, Sophia's GP had asked to have me sectioned as well (!!) so that was the scene that we were in. An because, um, the only way I can describe it is that if somebody is really ill, has got cancer, and then they are told to hold on, and they are made to walk a tightrope over Niagra Falls, they're so ill, but they hold on and on and on, and eventually they get to the other side, they're rescued or something like that, they manage but something is gone from them. Sophia had nothing left to fight with, because she had to keep for that two weeks that she was in the hospital, because they were determined to keep her, it took a solicitor to get her out of the hospital, everything was used up, and from then on she just crashed. She went into a hell-hole, where she'd never been before, and then it went on, that was in 2003, and by 2005 her symptoms were many and varied. Before that she couldn't tolerate water on her skin now she couldn't even tolerate to drink it. She couldn't eat the food, and we are talking about the last nine weeks, and (sighs) I used to be very upset, but I couldn't cry in the flat because she would hear me and that would upset her more. And before she became that ill I could go in once a day with a trolley, and everything was measured and weighed so she knew where everything was exactly, but in those last weeks, and those last days she couldn't eat, she couldn't drink, and you hope against hope because ME is like this, it goes up and down big time, and you hope, and you pray, I did, that she would get better and this was a phase she was going through. And then, that morning, you know, her breathing got slower and laboured, and I couldn't go and see how she was, because to go into that room the electromagnetic field would affect her. I could only go when she would press the buzzer.

So you were listening to her breathing through the door?

Yes. Yes... (break for station identification)

So its one of those situations that it's horrible even to try and put yourself in it, as a mum, as a parent, to watch your child going through a horrific illness, and then ultimately to find out that they are not going to recover. We are talking to Criona Wilson about her daughter Sophia.
You mentioned there before the song, that things got worse and worse, she was clearly very ill, and you couldn't even go into the room, and at that point you almost got a premonition, you knew she was going to die, didn't you?

Weeks before that, because I needed to clear the air in the last few months, each week I asked Sophia would she like me to call the doctor, and she always said no, and she only wanted a doctor who agreed with the World Health Organiziation to attend her, and we couldn't find any. So that was that, and so we had to let her die you know. And during that last time it was, it was awful but - I - even though I knew she was dying and everything, I kept my promise to her that I would never let her go into a mental hospital again

Was that hard? I mean at the time that you new she was going to die, there must have been a desperate sense that (you felt) I need someone to stop this, I need a medical person to come in and try and help?

Yes, but the reality was that there was no help. This was it, she would be locked away again in a mental hospital, and we knew that, you know? We just knew it.

What about now? I mean, life without her? Trying to make some sort of sense of this - has that been difficult for you?

Well. The reality for me - maybe not for other people, but for me is there has been no sense in this. In my books, if the World Health Organization is there, and all countries in the world pour money into this organization, and they say ME is a physical, neurological disease, and yet the doctors, the psychiatrists and the social workers treat ME as a mental illness - it's crazy. It is crazy, but given that the General Medical Council employed psychiatrists to go over my complaint, none of it makes sense, absolutely none of it.

And you, at the very end of your daughter's life, that very day, a song came into your head, and you knew that was going to be the day that she died. Tell us about that.

Well, a few times in my life I have had songs come into my head, and I know what they are about. I don't know why, it's like a premonition, I don't know why, but this morning I was just washing the dishes, and a song came into my head. It's an old war song, "Now is the hour when we must say goodbye", and I shivered all over, and I knew that Sophia was going to die, that day. It was no different than any other day, but I knew she was going to die, and then I said to myself, Criona, don't be silly, you're just imagining this. It was about eight or nine o'clock in the morning, and her breathing got slower and slower, and I couldn't go in, because it would make her more ill. About one o'clock, her breathing just stoped, and even then, I couldn't go in, I had to wait awhile, and then I went in, and because the room was blacked out - I didn't put on the light, out of repect for her I didn't even put on the light. I had a tiny torch, and I went over, and she was dead, and she was warm (still) and I said my goodbyes, and in the following hours the families came to say their goodbyes, and her friends, to her. Then I phoned the doctor, because originally, the first doctor that actually had sectioned her, that wasn't her doctor at the time, had thrown her off her list, and she got a second doctor. The second doctor wouldn't come out and verify that she was dead. I didn't know why, but I was told this doctor had also thrown Sophia off the list, four months before. And that was the reality. Sophia was a no-mark. Sophia, she wasn't important, she just wasn't.

Your face lights up when you talk about her in her vibrant days. She's a massive loss in your life, she's obviously a wonderful, wonderful daughter, and unless a parent has been through it with a child, it's almost impossible to imagine the impact it's had on you. So we really appreciate you coming in, and being brave enough to talk about it.

But the thing I would like to emphasize is that there are two hundred and fifty thousand people with this disease, and their families, and a lot of those become invisible, because they are going through the exact same.

And that's why you you feelit is so important to talk about what you've been through, maybe, so that others get the understanding, maybe.

And that has got to come from the government.

Well thank you so much for joining us in the studio, it's been an absolute pleasure to meet you. thank you so much for sharing your story with us this afternoon.

It is particularly tragic that just before Sophia was sectioned, she was beginning to improve.


Thanks for transcribing this.

I had never heard Sophie's tragic story in such detail before, the way she was treated by the medical profession and social workers was prolonged abuse.


Senior Member

Thank you for transcribing that interview!

I've met Criona and she has such dignity. The interview was incredible moving and so very sad.


ahimsa_pdx on twitter

Another thank you and a :hug: HUG :hug: to jace for creating and posting that transcript. I can absorb the information more easily from reading text (probably because I can do it at my own pace). Videos are usually a bit harder for me to process unless it's a really good day. Radio is last on the list - on a bad day I can still read and understand a newspaper article but I can't understand the news or weather report when I try to listen to the radio.

Thanks again!


Senior Member
Did anyone listen further along - I thought Criona was amazing but then someone with PVF rang in saying how things had been so good for her and then someone from a local ME society saying how much things had improved and I just switched off at the point as it all became pretty upbeat.


Senior Member
This was on the MEA website.

Criona Wilson talks to Sarah Gorell Show, 7th June, 2010.
23 minutes, split into two segments. Starts at 1:03:00 for the first 15 minutes and 1:22:35 for the remaining seven minutes.
To listen to the listeners' feedback, move the cursor on the time bar to 1:34:35 and 2:06:40.

The link may stop working after a while.

The interview is available as a mp3 file (4.84MB) at:

or via a tiny url http://tinyurl.com/39jdzy5