‘Why we must provide hope for those who suffer from ME’, Western Morning News, 13 June 2011

June 17, 2011

From the ‘Western Morning News', 13 July 2011 (story by WMN News Editor Steve Grant).

Shadow Home Secretary Yvette Cooper last week revealed her battle with ME. WMN News Editor, Steve Grant, who also fought the highly debilitating condition, praises her bravery.

People sometimes question why, at the age of 44, I push myself as hard as possible, why I find it nigh-on impossible to sit and relax.

Why do I find it necessary to push myself to the extremes when I could be putting my feet up?

The answer is simple, just two letters long – ME. Or to give it its full name, myalgic encephalomyelitis. Personally, I prefer chronic fatigue syndrome.

The illness affects about 250,000 people in Britain, leaving them severely lacking in energy. Apart from exhaustion, other symptoms can include muscle and joint pain, difficulty concentrating and an inability to sleep well. The cause of the condition remains unclear and evidence on effective treatments has been inconclusive. In most cases, a previously fit and active person will find the illness triggered by an infection. The symptoms last for several months – or years.

It struck me in November 1989, at the same time as the Berlin Wall was being torn down. It changed my world as irrevocably as that event changed Germany.

I lost my health, my job, my partner. With it went self-confidence, ambitions and dreams. I spent two years housebound, a whole year in bed.

Before it struck, I was fit, sporty and at the start of a promising career. I was 22, a fully qualified senior journalist on a daily newspaper. I played football, cricket, badminton. I ran, skied and sailed.

In November 1989 I took a holiday abroad, in Tenerife. On the very last day, I was struck by gastroenteritis. Nothing too serious, and I returned to work as soon as possible.

Two weeks later, I was back at my GP’s. I felt awful. He said I had gastric flu. Two weeks later I returned to work. Things, however, were never the same again. My muscles ached constantly, I felt extremely tired and suffered horrendous headaches. Over the following five months, only once did I complete a full week’s work. Finally, after collapsing over my desk one morning, my employers told me to go home until I got better.

It was another four years before I returned.

A diagnosis took several worrying months. All sorts of specialists were visited, some because of the pain I was suffering – privately at my own cost – to speed up the process.

ME/CFS sufferers experience a wide range of symptoms. Each seems to be affected differently. For many months, I suffered the most excruciating pains in my head. Despite munching stronger and stronger painkillers, I would scream with pain. The throbbing of the muscles in my arms and legs merely added to the discomfort.

My family were as worried as I was. No-one knew what caused the condition, no-one had a cure, and no-one could say how long it would last. The pain and hopelessness would encourage you to try anything which might alleviate the condition – special diets, different drugs, alternative therapies, even spiritual healers.

Despite the support of family and good friends – it’s a real test of true friendship – despair was a frequent visitor. Try lying in a bed, unable to move, not knowing when you might be able to get out, at midnight on New Year’s Eve, when you can hear the whole world celebrating outside.

During the first two years, I cried, screamed and begged for help. I would have done anything for it to stop. Gradually though, I came to terms with my condition and, slowly, it improved.

There was no secret to it. My symptoms slowly, slowly, disappeared as mysteriously as they had first appeared.

It was a long hard road, and I know I am one of the lucky ones. I will never be able to do some of the things I used to be able to but I never take life for granted any more.

Which is why I believe it’s important for public figures such as Mrs Cooper to talk about their own experiences of the condition.

The Shadow Home Secretary – now one half of one of Britain’s most powerful political couples – was struck down when she was just 24 and working as a researcher for John Smith, the then Labour Party leader.

“I got flu one January and it basically never went away,” she recounted. “It was a horrible time and I didn’t know if it would ever end. I couldn’t leave the house, I couldn’t even get out to buy a newspaper. All those things you take for granted like running for a bus were beyond me.”

Luckily, like myself, the MP for Pontefract and Castleford had a good GP who took the condition seriously. Mrs Cooper eventually recovered enough strength to go and work part-time for Harriet Harman. The rest is history.

It’s important for her story – and those of international yachtswoman Clare Francis and Celtic and Scotland footballer Dave Provan – to be heard. They – we – recovered enough to put our lives back on track. Many take years and years to recover and some don’t. Others find the strain too much. A few years ago, when I was working in Bristol two young women from the area killed themselves rather than live with the debilitating illness any longer.

Rather than despair, stories like Mrs Cooper’s should bring hope.

5 thoughts on “‘Why we must provide hope for those who suffer from ME’, Western Morning News, 13 June 2011”

  1. It’s not possible for us to say whether Yvette was struck down with M.E. or just an extended viral illness, however, she herself claims ( and I assume sincerely believes ) that she suffered from M.E. We would therefore expect, that as an MP, she would use whatever influence she has to improve the plight of other M.E. sufferers. I am not aware of any effort on her part towards this end. In fact I was disappointed to find that her name is not added to the list of signatories supporting the Early Day Motion calling for more research into this illness.

  2. ‘We’ are diagnosed with X or Y or Z. We don’t ask for it. We don’t self-diagnose – or at least we shouldn’t.

    So why doubt someone’s sincerity when they state – especially a public figure – that they have been told they sufferered or suffer from X, Y or Z?

    For sure there are genuine concerns about the validity of the diagnostic process and of the ‘label’ itself – of all such ‘labels’ in the absence of a ‘test’, but for the sake of the gods – what is with the sanctimonious judgement, based on articles like this one and the others that get written?

    And I don’t refer to the comments above – I mean in general. An article appears from a ‘celebrity’ or from someone who feels able enough to do something they haven’t been able to since falling ill – and in flock the judgements…

    No one asks for the diagnosis. If at some point in the future we can all be ‘tested’ and then pigeon-holed separately to poke-tongues at the others and say ‘I told you so. Didn’t I tell you? See. You were not the same as me. I was genuinely sick and you were not’ – these expressions of ill-founded judgement are distasteful in the extreme.

  3. It is good to hear other people’s stories and this goes to illustrate just how much we need this Illness to be clarified and identified, I don’t think ME and CFS are the same illness. Why did these two people have it real bad and then get better while myself and others have been ill for 15+ years?, they may be similar illness that share some of the same symptoms, this high lights the need for better diagnostic criteria where all Doctors etc use the same guide lines IE the Canadian Criteria ( I was diagnosed using this at the Lowestoft ME clinic), If too people have mobility because say one has MS and the other Parkinson’s we don’t group them together as the can’t walk well group, and study their symptoms in the same research paper that would get us nowhere yet that is what happens with ME???? We should be concentrating on defining what ME truly is or isn’t not judging people as they couldn’t possible have it or maybe have it etc. More research and more people telling their stories to open up the debate would also be good

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