Transcript of interview of Criona Wilson by Sarah Gorrell

BBC Sussex & Surrey radio station, 7th June 2010

Criona Wilson was the mother of Sophia Mirza, a British woman of mixed Irish-Pakistani heritage who developed severe ME in 1999. She lived for most of 5 years in a blacked-out room, and despite a brief improvement, was “sectioned” (forcibly taken into a psychiatric unit) in 2003 and this led to a catastrophic relapse. She died of complications from ME in 2005 and has the distinction of being the first person to have “CFS” mentioned on her death certificate.

Sophia’s story is told by her family on the Sophia and M.E. website. There is also a video interview with Criona Wilson on YouTube here.

Sarah Gorrell: Good afternoon, Sarah Gorrell; with you until 4 o’clock, and in this hour of the programme, we will be hearing the very moving story of Criona [she pronounces it “Crianna” throughout] as 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 and just about able to lie on her living-room sofa. Now, so often you hear the condition ME dismissed - it used to be “yuppie flu”, dismissed as some sort of psychological problem, but we will be hearing this very moving story that indicates— and this was the first person in the country — Sophia was the first person to have ME recorded as the cause of her death on her death certificate. Her story coming up very shortly.

Love to hear from you on this; if ME has touched in some way your life, [gives out number]. We start this hour with Tavares, More than a Woman.

[Plays record]

SG: The Tavares, and “More than a Woman”. Well, joining me in the studio now, Criona Wilson - good afternoon to you, Criona.

Criona Wilson: Hello.

SG: Now, i have some pictures in front of me of your beautiful — and she was a beautiful and very vibrant looking young woman …

CW: Yes.

SG: … who very sadly was affected by ME.

CW: Yes.

SG: Just tell us the moment that you realised that there was something not quite right.

CW: 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 she crossed the road, and it was like being with someone who was 120 years old. It was very, very slow motion; I had never seen the like of it before, although I’d trained many years ago as a nurse and a midwife. And one thing and another, and although I’d never seen ME when I was nursing, I thought she had ME then. But that was in September ‘99, and she came down to Brighton, I brought her down for a visit, in December of that year, but halfway down in the car, I couldn’t go forwards and I couldn’t go back, because the car was making her so desperately ill, and once she got to Brighton, that was it; she never left Brighton again.

SG: To see your daughter go from someone who embraced life, with enjoying life, to someone barely able to move between the bedroom and the bathroom, just so incredibly frustrating; was there anything that could be done to help her, medically?

CW: Well, medically, because there’s no research for ME, I didn’t know all this at that particular time, and the GP appeared to be kind and everything like that, but with hindsight I realise the GP was getting the mental health people involved, and Sophia didn’t want this; but 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; and anyway, after three months, she crashed, and I didn’t know what happened, and when I got tested, 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.

SG: So, the mental team were involved in this case, which — the implication there is that, in some way, her symptoms were psychological and you knew full well that that wasn’t the case; that must have been incredibly frustrating.

CW: Well, since 1969 the World Health Organisation 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’s a cabal of psychiatrists, who are paid one way or another by the medical insurance companies, so they have kept ME in the realm of mental illness, no matter what the World Health Organisation says, and this group of psychiatrists actually advise the government on ME; it is crazy. It is the lunatics in charge of the asylum, it really, really is.

SG: 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?

CW: Generally speaking, you do get a few good doctors, you do get a few psychiatrists and stuff like that 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 people are treated as having a mental illness, and I’ve even met doctors themselves who, members of their families have got ME and they are too frightened to come forward.

SG: This must have been so incredibly heartbreaking for you; you watched this woman who was, as I said, vibrant, who was enjoying life, who should have been celebrating her adult life, you watched her barely able to move. How was it for you?

CW: It was awful. When Sophia crashed, all she could do was lie in a dark 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, 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, watch TV, read, do nothing. All she could do was lie on her right side. She couldn’t, for example, since she crashed, she couldn’t have a bath, she couldn’t have her hair washed all those years, 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.

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

CW: Well, she couldn’t speak most of the time; she wasn’t able to speak. But when she could speak, as there was a time when she was getting better but after that they sectioned her in a mental hospital, but when she could speak, I mean, she was lucid, she was always lucid and everything like this, but in order to stop the symptoms increasing, they changed from day to day, from hour to hour, Sophia had to, as it were, centre herself, not let her imagination go, not to do anything, just to be centred. It was … I can’t even imagine what it was like.

SG: What did being sectioned in a mental hospital do to her? That must have …

CW: It was a death sentence, an absolute death sentence, because by that time, Sophia’s GP had wanted her to take the psychiatric unit and Sophia got me to check it out; they wanted her to go into a particular clinic. I phoned the few people I knew who’d been in that clinic, and they were terrified of their names being used, so I promised not to use them; they said that in that particular clinic, that although it was called an ME clinic, they were treated along the lines of mental health, having graded exercises and stuff like this. But Sophia elected, because of that, Sophia elected not to go into it. And then at one stage, the doctor apparently asked three or four psychiatrists to get involved in Sophia’s case; she told me they refused. She eventually got this psychiatrist who agreed. And he came to see Sophia just the once, never examined her physically at all, and her blood pressure was very, very low; everything about her, she needed to be physically examined, but that wasn’t the case. And 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 if Sophia didn’t get better in six months, or if she didn’t go to this clinic, that he would section her.

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

CW: 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’re correct or not.

SG: And tell us about when she died; did she just slip away as a result of being so weak?

CW: After she was sectioned, that was the beginning of the end, because prior to that, you see, Sophia had been getting better. She’d been having visitors and she’d been sitting up, the curtains were open, the fresh air was in, it was lovely. But they had decided on this, because bear in mind that when I eventually got the paperwork, 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. And after … because … the only way I can describe it is, if someone who’s very ill, let’s say whose got cancer, and then they’re told to hold on, and they’re made to walk a tightrope over Niagara Falls, and they’re so ill but they hold on and on, and eventually, when they get to the other side or they’re rescued or something, everything 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 and 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 hellhole that she’d never been in before.

And 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’re talking about the last nine weeks, and 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, um, anyway, those, like, before she became that ill, I could go in there once a day with a trolley, and everything was measured and weighed so that she knew where everything was exactly, but in those last weeks, and in 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 pray like 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, laboured, I couldn’t even go in to see how she was, because to go into her room, the electro-magnetic field would affect her. I could only go when she pressed the buzzer.

SG: So you were listening to her breathing through the door?

CW: Yes.

SG: We will hear more of this very shortly, and we are talking to Criona about the horrible impact that ME has had on her family, and we’d love to hear from you on this as well, [gives out number].

[Jingles play, followed by record]

SG: U2 and “I Still Haven’t Found What I’m Looking For”. So, one of those situations that, it’s, it’s horrible to try and even 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. I’m talking to Criona Wilson about how her daughter Sophia— and you were mentioning there, just before the song, that things got worse and worse, she was clearly very ill, you couldn’t even go into the room and see her because she was so ill, and at that point, you did almost get a premonition, you know she was going to die, didn’t you?

CW: In the weeks before that, because I needed to clear the air in the last few months, each week I would ask Sophia, would she like me to call the doctor, and she always said no. She only wanted a doctor who agreed with the World Health Organisation [i.e. that ME is a neurological illness] to attend her, and we couldn’t find any, so that was that, so we had to let her die, you know, and … during that last time, 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.

SG: Was that hard, at the time you knew she was going to die, that there must have been a desperate sense that “I need someone to stop this, I need a medical professional to come in and try and help”?

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

SG: What about now? Life without her, trying to make some sort of sense of this, has that been difficult for you?

CW: Well, the reality for me, maybe not for other people but for me, is that there has been no sense in this, because in my books, if the World Health Organisation is there, and all the countries in the world pour money into this organisation, 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 … the General Medical Council themselves employed psychiatrists to go over my complaint - none of it makes sense, absolutely none of it.

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

CW: Well, a few times in my life, I’ve had songs come into my head and I know what they’re about; I don’t know why, but it’s like a premonition, I don’t know why, but that morning, I was just washing the dishes and the song came into my head - it’s an old war song, “Now is the Hour When We Must Say Goodbye”, and I just shivered all over and I knew that Sophia was going to die that day. It was no different from any other day, but I knew she was going to die, and then I said to myself, “Criona, don’t be silly, you know you’re just imagining this”, and at about 8 or 9 o’clock in the morning, her breathing got slower and slower, and I couldn’t go in - becuase it would make her more ill - about 1 o’clock, her breathing just stopped, and even then I couldn’t go in - I had to wait a while, and then I went in; and because the room was blacked out, I didn’t put on the light - it sounds silly, but I didn’t even put on the light out of respect for her; I had a tiny torch, and I went over and she was dead. And she was warm, and, uh … said my goodbyes, and in the following hours the families came to say their goodbyes - and friends - to her, and then I phoned the doctor, because originally the first doctor who actually had sectioned her now wasn’t her doctor at the time, had thrown her off her list, and she’d 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 that this doctor also had thrown Sophia off the list four months before. That was the reality; Sophia was a no-mark, Sophia wasn’t important, she just wasn’t.

SG: Your face lights up when you talk about her in her vibrant days, it’s a massive loss in your life, she was obviously a wonderful, wonderful daughter …

CW: Yeah …

SG: And uh, this is something that, unless a parent has been through it with a child, it’s almost impossible to imagine the impact that it’s had on you. So we really appreciate you coming in and being brave enough to talk about it.

CW: But the thing I would like to emphasise is that there are 250,000 people with this disease, and their families, and a lot of those have become invisible because they’re going through the exact same …

SG: And that’s why you feel it’s so important to talk about what you’ve been through so that maybe others get the understanding, maybe, that they deserve.

CW: Maybe, and that has got to come from the government.

SG: Well, thank you for joining us in the studio; it’s been an absolute pleasure to meet you. Thank you very much for sharing your story with us this afternoon.