Not Mid Morning Matters

JD in the Morning, off air…

Tag: BBC News

March 2, 2016

M.E again

When I met Naomi at her home last year she has been housebound since her teens. I have since researched her illness and spoken to others who live with M.E. I have interviewed those who are trying to raise the profile, the money and challenge for the possible treatments for this chronic condition. From all this a number of issues have become apparent to me about M.E.

The first is that this illness is hidden. The considered numbers of those living with ME in the UK are 4000 per million, making a total of around 250,000 with diagnosed M.E. In the U.K., from what I now understand of this illness, the diagnosis is, at best, less hit and mainly miss. M.E is mostly not a positive diagnosis but a diagnosis of exclusion, a “we don’t know what it is so it maybe M.E”. Sonya Chowdhury, who runs the Bristol based Charity Action For M.E, suggested to me in a recent interview on BBC Radio Bristol that M.E today is like cancer from a generation ago. M.E is a phrase, a headline with little story, known as one illness, one size fits all. Today, for cancer, this is not the case so maybe the future of M.E is positive diagnosis and targeted treatment for the potentially many types of M.E there could be. More personal evidence about the state of M.E diagnosis is that someone I know took ten years to get their diagnosis while another friend took just 10 months. I’d wager that many more are living with the symptoms of M.E and are battling not knowing why or what they have.

The second thing I have learned since meeting Naomi and sharing her story of living M.E is that the illness is a lot more common than I realised. It is hidden too. Six people I know well who have the illness. Six. Before meeting Naomi I had heard very little about the illness and I had bought into the “yuppie ‘flu” tag. All six family and friends I know have varying degrees of this chronic and very real condition. Why did I not know? It is because they were ashamed to talk about it, to tell anyone, to fess up to having M.E. They were ashamed of it for fear being judged as hypochondriac, sickly or malingering. They did not want to that one person in the office who is “always off sick”. You know they type? You, me, we are wrong.

The third thing is something I really don’t understand. Why does the media still portray this illness as not really real? I have seen and spoken to those who have M.E and heard ans see their realities of it. I can say that it is real to them, to their doctors, family and friends. It has real consequences and a reality all its own. The media “it’s not really real” attitude perhaps leads to the wider medical profession not taking M.E seriously. This may lead to a lack of general understanding, investment, treatment or even attempts to find cures. Maybe it’s simply because there are just aren’t enough people dying from M.E? It only takes away your life force, without warning and little hope of it coming back, no matter how hard you will it. A recent Lancet report and paper suggests that those with diagnosed M.E are six times more likely to take their own lives than you and me. That can’t be acceptable.

So what should be done? One; take the illness seriously and give it a voice. Two; call on those who can make a change to make a change. Three; the next time you hear about M.E take it seriously. Please take M.E seriously.

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I am ashamed to call myself a Journalist

On Saturday 31st October, at 1.30am, my 22-year-old eldest daughter Polly was killed when she lost control of the car she was driving and hit a tree. She was alone in her VW Beetle, no one else was hurt and, I am told, it was instant.

I can tell you that having lost my father as a child, other close family members along the timeline of life and having said many times ‘on air’ that losing a child must be the worst thing of all, it is. It really is. It’s not a grief ‘competition’ it just is. Losing a child is the worst thing of all.

Polly’s mother Sarah and her dad Simon, who brought Polly up from the age of 3 and did such a brilliant job, are broken by this, as are all our families. My eldest son, Polly’s brother Oliver, is broken too but one of the few comforts I am taking at the moment is what a fine, brave, courageous man he has become. Again his mother Sarah and dad Simon deserve all the credit.

It is Simon, Polly’s dad, who has prompted me to write this blog. I am Polly and Oliver’s father, Simon is their dad. That is always the language we use, though Ollie and Polly always call me dad when we are together. Language is vital if we are to understand who we are and what we do.

The news of my daughter’s death, because of the nature of the work I used to do (I know I will never be the same again) and who I am engaged to means that there is some media interest in me with the local and national newspapers and TV. Those who know me well will know that I never, ever wanted to be the story, just to tell or share the story, as a journalist, correctly. I have never wanted to be on TV, I don’t want to be known, perhaps just be known of, to do my job well and to help people if I can and to get to the truth for others.

As all the family came together on Monday morning to start the process of making arrangements for Polly, I was contacted by the BBC for a quote about her. There has been quite a reaction to the news, because of me, with many kind words paid in tribute to my daughter and kindness shown towards me from those who listen and maybe even enjoy what I do daily on the radio. I gave the BBC ‘the line’, agreeing it while on the ‘phone to them with Polly’s mother Sarah and Polly’s dad Simon hearing me do this. I wanted the quote, the tribute to come from Sarah, Polly’s mum, who did such a brilliant job in bringing our daughter up with Simon. The name order was also agreed to be ‘Sarah, her husband Simon Bosworth and John Darvall’. I was clear.

On Monday night, on Points West the local BBC News opt for the West, none of this happened in their broadcast about Polly. Simon was called Polly’s ‘stepdad’, a phrase we have NEVER used. Simon, Polly’s dad was straight on the phone to me. He was rightly furious and more. This journalistic failure significantly added to his pain, and to mine. To hear Polly’s dad rage at you about your profession, about the things you have clearly agreed whilst standing in his family home just hours before when our daughter has been killed…words fail me. This poor piece of journalism made Tuesday probably the worst day of this whole episode so far. This includes seeing our dead daughter in a hospital mortuary just 12 hours after she was killed.

Newspapers have contacted me and provided appallingly written articles, which I have had to change, ‘polish’ or make actual sense of. Other papers have published articles using my personal relationship as ‘the in line’, when this is NOT the story but, at best, just a very small part of the story. This has hurt many who are in the throes of grief. Other papers have just published without checking and have got facts wrong. See earlier blogs. One paper spliced a year off my age. I will take that!

The way we all consume news is changing. The way we share news has changed and will continue to change at a faster pace. This week TV and newspapers have proven to me why they are not the future of news. If they can’t even get their facts right, be trusted with clear information and then report it accurately is it any wonder that we are all turning to Facebook, Twitter and other internet sources for our news and information? The internet allows us to come to our own conclusions by checking our own facts. We really can’t trust the traditional outlets to do it right or properly.

I write this as a father who has lost a daughter. I write this as a journalist who loved his work but can now clearly see why so many have lost faith in his profession and traditional media. They, we and I have brought this on ourselves.

I also write this to set the record straight for Polly’s mother Sarah and Polly’s dad Simon. I am ashamed to call myself a journalist and I am truly sorry to have added to your grief. I have spoken to Simon and he knows I have written this.

Two bits of advice for you reading this, if I may:

Trust nothing you read or watch. Check it, at least twice, as it’s more than likely wrong from just a single source.

Love your children and loved ones. Properly love them. Tell them every day, make sure they know that you love them regardless of what might be happening. Nothing is more important than that.

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