M.E again

by John Darvall

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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