Not Mid Morning Matters

JD in the Morning, off air…

Tag: M.E

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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What M.E?

In the last few weeks I have seen the best and the worst of what we are capable of. The worst was on a beach in Tunisia and those who died at the trigger of an Islamic Extremist gunman. This is only the beginning of this story from the country that seeded the Arab Spring. Tunisia and Europe will struggle to come to terms with the consequences of summer of 2015 and the biggest problems may have already begun. Any country that relies on tourists spending money for a significant part of its GPD is going to hurt as this cash tap is turned off. The financial pain that Tunisia will feel will be very easily harnessed by those who have no desire to encourage the West back with their flabby white bodies to its turquoise seas and sandy beaches. Maybe this is part of the terrorist plan? As ever social media will have its dark, digital hand in all this.

Yet something else has kept my hope alive and well.

Two weeks ago I went to see a 38 year old woman called Naomi at her home to interview her for my BBC radio programme. I don’t like doing what are known as a ‘pre-rec’ after a three hour live programme. I always feel ‘flat’ and feel I lack the ‘spark’ a live show and red ‘ON Air’ light gives me. After this interview I will never be so pathetic again.

Naomi has lived with M E, Myalgic Encephalopathy, for 25 years of her life. She went from being a bright, vibrant young girl to seriously ill in a matter of weeks. Now Naomi is barley able to get up from her bed for 20 minutes a day because of a virus and how her body reacted to it. When I knocked on the door to interview Naomi I knew little about M E. other than its dodgy reputation and the questions about whether it was actually a real illness. When I left Naomi’s parents home where she lives, having spoken to her, her mother and brother for an hour I cried.

I played the recorded interview out on my radio programme, put the video of Naomi’s story up on social media, lovingly made by her brother Tom, and thought that was it. I was wrong.

I am not a big fan of social media. It seems to be little more than a platform of inanity and fantasy. At it’s worst it is a vehicle of anger, hatred and allows those who delight at taking offense at anything to hide behind their made up names and say hurtful, stupid and ill-informed things without real consequence or responsibility. This is not to be confused with free speech. Free speech is saying what you feel or believe and having the courage to be seen standing up to say it. At its very worst social media is full of narcissists and the delusional with a worrying need ‘followers’ or ‘friends’, a mob of cowardly, unidentifiable cockwombles hiding, carping and hating.

Social media can also be a huge force for good; a force for change and it can give voice to those who don’t have one. Naomi’s story on the radio and  Naomi’s video story has revealed thousands like her who are suffering, thanks to social media.

I never knew how big a problem M E is. It is only through Naomi’s courage in giving what little energy she had in telling her story and allowing me to share her story that others now have a voice too. Thanks to Naomi others can get help and have hope. This includes my own stepsister who I never knew has M E until this week.

I will now do more to help others with this condition. M E is dreadful, debilitating illness that when it takes hold it never lets go. For Naomi, for all those living with chronic pain and M E, I will do more while I can. I will also use social media too because I can finally see what it can do rather than what it seems all too capable of doing now.

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