***Please note that this programme discusses the sad death of Sean O'Neill's daughter Maeve which may be distressing****
Today, the presenter Emma Barnett interviews Sean O'Neill, senior writer at The Times, and Dr Charles Shepherd, Honorary Medical Adviser to the ME Association on the BBC Radio 4 programme Woman's Hour.
Sean provides a deeply moving and honest account of what Maeve and his family went through due to having ME/CFS. Sean talks openly about her final days and says Maeve requested to stay at home and she passed away at the age of 27 surrounded by people she loved. The ME Association would like to express our sincere condolences to Sean and his family.
If you need to talk, please know that volunteers at the ME Association's ME Connect Telephone Helpline are available 365 days a year between 10am-12noon, 2pm-4pm & 7pm-9pm. Please call: 0344 576 5326.
Listen to the broadcast via the Youtube video and/or read the transcript below:
TRANSCRIPT (Interview segment)
00:00:00 Presenter Emma Barnett
But let me tell you about my first guest today. Used to writing the stories, not being the story.
He is Sean O'Neill, the chief reporter of the Times known for his agenda setting scoops, which include the alleged sexual exploitation by Oxfam aid workers.
00:00:30 Presenter Emma Barnett
But today he's come on Woman's Hour to talk about a story, a reality much closer to home. Because last October he lost his 27-year-old daughter Maeve after she had suffered from ME since she was a teenager. He's now trying to raise the profile and understanding of the condition you'll hear from Sean shortly.
00:00:50 Presenter Emma Barnett
But before you do, I wanted to ask if you have also tried to use the loss of someone close to you in a positive way, to try and make a difference somehow. It could of course be telling their story, raising money, setting up a campaign, a foundation.
Tell me what you've done with regards to whose life has changed yours and how and what if you try to say it about them.
00:01:13 Presenter Emma Barnett
Often people do not wish to be defined by the illnesses and the things in their life that have been so difficult that end up taking their life. But you tell their story. You take that on what has ended up happening in your life, as a result of the loss of someone close to you.
00:01:25 Presenter Emma Barnett
84844 is the number you need to text me here at Woman’s Hour I should say, as I always do, texts will be charged at your standard message rate, do check for those costs.
00:01:35 Presenter Emma Barnett
On social media at BBC Woman's Hour or email me through the Woman's Hour website.
But to Sean O'Neill, first of all, I should say is join me in the studio good morning.
00:01:46 Sean O'Neill, senior writer at The Times
00.01.47 Presenter Emma Barnett
Thank you for joining me listeners today.
00:01:48 Sean O'Neill, senior writer at The Times
00:01:50 Presenter Emma Barnett
And I should say for context as well, at this point, you first broke your silence on this in terms of writing an article in light of the Health Secretary Sajid Javid only two weeks ago, announcing a new plan to tackle ME and Chronic Fatigue syndrome in England. He says with better care and support for people with the illness, more research and a pledge to listen to those with lived experience of ME That's a moment you described as the most bittersweet, bitter of bittersweet moments. I think you put it, why?
00:02:21 Sean O'Neill, senior writer at The Times
Because I think we've been waiting for this, families of people were there many people with ME have been waiting for something like this for such a long time.
00:02:29 Sean O'Neill, senior writer at The Times
We've wanted somebody senior in government to look at this illness, look at the way it's been treated and regarded not just by the NHS, but by the medical profession more widely and by society more widely. You know, there is I feel a prejudice against me and a sort of belief that it's a behavioural or psychological problem. And for the Secretary of State for Health to stand up and say I think we need to reset the agenda on ME, we need research, we need to understand what ME is and we need to listen to people who have ME rather than listening to the medical profession and the medical establishment.
00:03:10 Sean O'Neill, senior writer at The Times
I think that's really, really a massive breakthrough moment that makes Britain a world leader, a genuine world leader in looking at this disease.
00:03:20 Presenter Emma Barnett
And how it's considered and treated or not. I should say at this point also that there is an inquest into your daughter's death this summer, but she lived with this for a long time, didn't she?
00:03:32 Sean O'Neill, senior writer at The Times
She wasn't diagnosed until she was 18, so in 2012. But I think we knew her family knew that, you know, she knew there was something wrong before that. I remember picking her up from school one day she was the only child by my first marriage, so I saw her for a long time, every other weekend, for long weekends and I picked her up from school one Friday at secondary school and she'd been cross country running, she'd fainted. She was struggling then with PE lessons to write school. She struggled with fatigue with just energy and sort of general debilitation, not feeling up to the pace, if you like.
00:04:14 Sean O'Neill, senior writer at The Times
Uhm, but she, she went on through school. She did really well at school. She was incredibly bright. I mean you know really good at languages insisted on doing Russian A level, read Russian literature, read you know, tried to teach yourself Irish 'cause she was very proud of her Irish background.
00:04:32 Sean O'Neill, senior writer at The Times
She was a remarkable young girl, really creative and intelligent, beautiful singing voice and dumb and slowly like I say in the article, bit by bit there ME just stole that away from her over the years.
00:04:46 Sean O'Neill, senior writer at The Times
It took her it took her vibrancy. It took her youth. It took her independence, and it took all her promise, just took it all away. You know her spirit was still there, but her body wasn't able to live up to her ambitions and her dreams and her wishes, and I think Maeve proves in a way you know people with ME are often described as malingerers, and they've got that horrible phrase, Yuppie flu was invented in the 80s.
00:05:13 Sean O'Neill, senior writer at The Times
And it was made out like they didn't want to do anything, they were lazy, they didn't care about life may have loved life and she wanted to be something in life. She wanted to make you know, she wanted to make the best of life. She even you know when she was kind of housebound and bedbound she managed to write a novel. The first draft of a novel, it's a really beautiful thing and she kept it kind of hidden until she was too ill and then I read it during her last week while just being near her, you know.
00:05:44 Sean O'Neill, senior writer at The Times
It's a wonderful, quirky story as a crime drama set on Dartmoor where she grew up and it's beautiful. But there are also passages in it that really reflect her grief that there's a character who's lonely and who's lost her husband and at times, that character is speaking Maeve's voice to me about. The loss of she talks about the irretrievable loss of others and the grief she lives in not being able to live her fullest and best life and it's deeply sad that, that we lost her, that the world lost her.
00:06:22 Presenter Emma Barnett
It sounds like she fought incredibly hard not to be defined by this.
00:06:27 Sean O'Neill, senior writer at The Times
She didn't want to be remembered as somebody who had ME. That wasn't the only thing she was there for. She had, like I say, so much promise.
00:06:40 Presenter Emma Barnett
I think one of the most striking things and it's going to stay with me a long time. One of the you know, you are a writer for a living very good writer, but one of the lines in the piece that you wrote about this you said you've been living with cancer for 12 years. And that Maeve would have been better off in the NHS with cancer.
00:07:02 Presenter Emma Barnett
What do you mean by that?
00:07:03 Sean O'Neill, senior writer at The Times
Because cancer is recognised and understood and massively researched, and if you turn up at the hospital, I was lucky to be diagnosed very early with my cancer with Leukaemia.
00:07:17 Sean O'Neill, senior writer at The Times
You're in a system, there are protocols and pathways, and there are ways of treating things. You know cancer is understood and is, and the boundaries of knowledge and cancer are continually being pushed, so my cancers are, you know, I'm I had chemo first time around I might have had to have a bone marrow transplant, but my consultant told me the other day he doesn't. He hasn't done a bone marrow transplant for 10 years because the new drugs that have been produced by the new research or so good and he already knows if my current drug fails, what my next drug regime will be.
00:07:56 Sean O'Neill, senior writer at The Times
So, Maeve went into the health system and battled with a health system that didn't recognise her illness. There's no laboratory diagnostic test, there's no treatment, there's no real understanding, and there's a lot of apathy and ignorance and prejudice against people with ME because they are seen in a particular way.
00:08:19 Sean O'Neill, senior writer at The Times
And she, you know, she researched and researched. She was incredibly knowledgeable about her condition, but the patient can't cure herself. She doesn't have the resources she can't do the develop the new technologies and new medicines that are required so.
00:08:34 presenter Emma Barnett
And it sounds like she was, you know, struggling to keep on top of it and never mind think about how best to…
00:08:39 Sean O'Neill, senior writer at The Times
Well, it was it's very debilitating, it takes away a life. You know there are, the figure used is 250,000 people in the UK with ME, and that figure has been around for about 10 years.
00:08:54 Sean O'Neill, senior writer at The Times
I suspect the number is much higher and around 25% of people and these surveys around the world are severely affected. That largely means housebound or in the worst cases like Maeve eventually bedbound because it's a relentless march of this disease, it doesn't. Some people have fluctuating conditions, but for some people who get it severely, it just takes their whole lives away.
00:09:17 Presenter Emma Barnett
How old was she when she became bedbound?
00:09:21 Sean O'Neill, senior writer at The Times
She was in the last two or three years.
00:09:23 Presenter Emma Barnett
So it's a long, it's quite a long time.
00:09:24 Sean O'Neill, senior writer at The Times
It was housebound and increasingly spending more time in bed. She just she couldn't get up. I didn't live with her, she lived with her mum in in Devon and it became, I have to say it fractures families as well because for a long time I was, you know, it was incredibly frustrating to not be able to see somebody you love that because they don't have the energy and the strength to sustain a visit and that happens with lots of families. Since I wrote about ME, I've written a few things about it, but especially since I wrote about Maeve, a lot of people have been in touch who say I have exactly the same experience I the patients themselves who say I can't get out, I can't see my family, it's too exhausting, I struggle to eat and it's not because they don't want to eat it because the body hasn't got the energy to digest the food and that’s it.
00:10:24 Sean O'Neill, senior writer at The Times
You know it's been overwhelming. The number of people who have come forward and said I'm in the same position. This is terrible for sufferers and carers.
00:10:36 Presenter Emma Barnett
It's the time that we're also talking, and I'm very aware, especially I know we'll be getting messages as we're talking from people with experiences of either it themselves or all those that they love and are close to. You know, very aware that we're talking the time of Long Covid and people trying to get people to the medical professionals to listen to them, to look after them. How much do you think that might have an impact on this?
00:10:59 Sean O'Neill, senior writer at The Times
I think long COVID, is a game changer? Probably, but also something that maybe was avoidable. You know if we'd put the research into ME years ago, we might have the answer to Long Covid already. But Long Covid is producing in a lot of people very similar symptoms, huge overlapping symptoms, and it's like most ME, it's post viral. It seems to be autoimmune that the body, even after mild Covid, can turn on itself and produce this long debilitating reaction. There are, you know, around the world, billions of pounds going into research into long Covid and a lot of the research is the more advanced research is that people who are open to new thinking are saying well, this could produce answers but for you know not just for Long Covid, but for ME and for other post-viral illnesses.
00:11:55 Presenter Emma Barnett
Sean O'Neill stay with me. Let me bring in Doctor Charles Shepherd who's a medical adviser to the ME Association and worked up drawing up NICE guidelines for ME for the medical profession which were published last year. Doctor Charles shepherd. Good morning.
00:12:10 Dr Charles Shepherd
00:12:11 Presenter Emma Barnett
And what I haven't said yet, it's estimated that 2.4 times more women than men are affected by ME in England and Wales that's according to the NICE figures at National Institute for Health and Care Excellence. Do we know why?
00:12:25 Dr Charles Shepherd
We don't fully understand why, but there are a number of conditions that involve the immune system hormones, genetic predisposition in which that we've got a female predominance. I mean, it's interesting that there's a similar sort of picture with Multiple Sclerosis here, we think. But roundabout 3:1 is the female to male ratio of people with ME and it may well be that it's this combination of genetic predisposition.
00:12:59 Dr Charles Shepherd
The fact that people's immune system may respond differently and female hormones, I mean one of the interesting things about ME, is that quite often people with ME improve, women with ME improved during pregnancy, and again, that's something that happens with Multiple Sclerosis. So, it’s not unusual to have a disease that has a female predominance and it's something that happens with other Neurological and immune based diseases like ME
00:13:26 Dr Charles Shepherd
Could, I just say there's a that Sean has given a very moving picture, not only of what happened to Maeve, but also of the denial, the ignorance and the neglect that is still happening for people with ME from certain sections of the medical profession. There are some very honourable exceptions, but this cannot go on. I think we have now got some very clear indications, not only from this ministerial statement that came last week, but we've got a new NICE guideline which has been very much welcomed by the patient community and later this week we've got an All Party Parliamentary report coming out on all aspects of ME, which I hope he's going to act as a further catalyst to really get something done to help people with this illness.
00:14:17 Presenter Emma Barnett
How quickly do you think there could be changes? 'cause I am very aware, you know we've got a message here from Paul, I've got a message from Beth and they're so they keep coming from women listening with me at the moment, who just about a, you know, getting out of bed in the instance I'm just reading here and managing to function a little bit and then getting back into bed and needing some of the basics to be put in place.
00:14:37 Presenter Emma Barnett
How fast could we see change, do you think?
00:14:40 Speaker 3
Well, I think hopefully with the Minister getting involved and the desire to have a plan and there's a lot going on behind the scenes at the moment with meetings at the Department of Health. We've got a NICE guideline which has sat there now for six months. We want to see services implemented, new services set up where people can be sent for hospital-based help with their diagnosis and their management. Many parts of the UK, particularly Scotland, Northern Ireland and Wales have no such service services at all and that really is something which has got to be done as a matter of urgency. The other point about the new NICE guideline which has abandoned this idea that this illness is a psychosomatic disorder, which has been put forward by psychiatrists for many years. So we are no longer treating people with CBT and graded exercise, and there is a whole new management plan there in this guideline and we want to see that implemented. There's no reason why that shouldn't be going on now.
00:15:42 Presenter Charles Shepherd
So, are you confident? I mean, but perhaps it's hard to say, especially if you've been waiting six months. But are you confident that with these guidelines, certainly in England that no one will be questioned if it's in their head or not?
00:15:55 Dr Charles Shepherd
I'm not totally confident because there's still a certain resistance, unfortunately from the Royal colleges, some people at the Royal colleges to what has gone into these guidelines, there is resistance.
00:16:07 Presenter Emma Barnett
Why, what? What is their resistance is it? Is it just what they've been told and they can't move their minds on to the reality?
00:16:13 Dr Charles Shepherd
There is a mindset amongst certain members of the medical profession that this is an illness which is ‘all in the mind’. When I was at medical school, there are people of my generation who still hold these views, when I was at medical school back in the early 1970s, I was told this was all mass hysteria. It was hysterical nonsense go away forget about it.
00:16:33 Dr Charles Shepherd
So, there is a lot of change, there is a lot of cultural change that needs to take place within the medical profession and we need this policy change as well to get people diagnosed within the first three months of the onset of their symptoms and then being given proper advice on their activity and energy management good symptom control and help with everything else that they need with social care in particular for people at the severe end of the spectrum.
00:17:03 Presenter Emma Barnett
Doctor Charles shepherd. Thank you very much for your time and expertise.