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Sufferers tired of being misunderstood

PUBLISHED: 11:00 20 May 2002 | UPDATED: 11:57 03 March 2010

SOME days, the pain is so excruciating, so debilitating, so utterly unrelenting that its victims can barely drag themselves from bed. Instead, they lie frustrated.

SOME days, the pain is so excruciating, so debilitating, so utterly unrelenting that its victims can barely drag themselves from bed. Instead, they lie frustrated.

Their anger is mounting, their skin crawling, their face drained of all apparent colour.

This is the reality of ME.

Each year hundreds more people are diagnosed with this widely misunderstood illness. They will learn to live with it, to accept it – to know that they are highly unlikely to ever know life without it.

Real name Myalgic Encaphalopathy, ME is often referred to as Chronic Fatigue Syndrome and, perhaps, consequently, often lends itself to the assumption that sufferers are merely very exhausted.

In fact, the truth is significantly different.

While tiredness is indeed a symptom of ME, it is actually far greater than any fatigue or exhaustion normally

experienced.

It is unlikely to be improved upon by a period of sleep and can be so severe that a sufferer can be rendered incapable of completing some of the simplest of tasks – often for months on end.

It's a difficult condition to translate into words – even for those who have battled against it for much of their lives. All the sufferers know is that they want a marked increase in social awareness… and greater action at government level to help make that possible.

"Understanding and recognition is absolutely key to the future progress we make in respect of ME," said Action For ME spokesman, Brian Dow.

"For a long time, sufferers have been feeling deeply frustrated at the lack of awareness – even among medical professionals. It has to be said, that in the case of ME there are a lot of professionals who are less than understanding about the impact of this condition."

This year's campaign week is in fact the first in which ME sufferers can begin to finally celebrate a doorway toward gaining the understanding they so desperately want.

For the first time, they have now witnessed government recognition of their condition.

"There have been a number of reports about ME over time, but this one is truly significant because it has been carried out at a completely different level. It equates to recognition at absolutely the highest level," said Mr Dow.

"It was carried out with patients and professionals and the final report made by chief medical officer Sir Liam Donaldson. As far as sufferers are concerned, this is a very major step."

The report, which was issued in full in January, has called for a number of positive moves toward improving the lives of some 240,000 UK ME sufferers.

A thorough research programme into the condition has now been officially recommended, primary care trusts are being urged to make treatment more accessible and, for the first time in medical history, GPs have been given clear guidance on how to diagnose, treat and manage the illness.

"Hopefully this is the turning point we needed," added Mr Dow. "Until now, there hasn't been any proper research programme and the treatment was really pretty awful.

"This year we're marking the campaign week with the optimistic view that things really could be set for some major improvement."

Those improvements are of paramount importance to the likes of Ipswich brothers Greg and Clive Goodson.

Twins aged 22, they both suffer from ME and have had to severely adjust their lives because of their condition.

"I've been ill with ME since I was 16," said Greg. "I was at college at the time and it did make it really hard to keep the studying going – but I wasn't about to give in."

ow working part-time for Kall Kwik, Greg claims the biggest frustration as a sufferer is realising just how little people understand the illness.

"It's always been known as 'yuppie flu' and I think a lot of people still just think it's about being tired all the time," he said. "That really annoys me because they have no idea about the mental fatigue you feel and how the condition can even make it hard to speak properly.

"There are more and more people coming down with ME all the time, so society really ought to be much more aware and understanding of the condition than it is."

With Clive having only been diagnosed in the last year, the Goodson family are clearly far more understanding and aware than most.

Indeed, it is a strange and cruel twist to circumstances that two brothers should have their lives hindered by this illness.

"We've had to learn to adjust everything we do and it does get very frustrating at times," said Greg.

"I'm just very lucky that I have a very understanding employer and that I can continue with most things within reason."

He added: "I really hope that because of this latest report the government will now become far more interested in helping people with ME, not only because it will mean more research into possible treatments, but because it will start to change people's opinions about the condition altogether."

For the likes of Greg and Clive, the genuine reality is that a miracle cure is all but a distant dream.

Day by day, they will continue to do the best they can to live with the condition with which they suffer.

They will compromise, adjust and taper their world – ever conscious that ME remains a part of it.

The only hope is that, perhaps, by next year's ME Awareness Week, sufferers like them will be able to celebrate another few crucial steps on the path toward beating this physically and emotionally tiring illness.

Weblink

www.ayme.org.uk

www.afme.org.uk

n A display about the condition of ME is currently on show in the central Ipswich Library.

n AYME (Association of Young People with ME) is a UK-based independent registered charity dedicated to giving help, friendship, support and vital contact to children and young people with Myalgic Encephalopathy (ME) .

n Esther Rantzen OBE is the president of AYME. Her daughter Emily suffers from the illness.

n Common symptoms of ME include fatigue, persistent headache, disturbance of normal sleep pattern, loss of attention, short-term memory, recurrent sore throat, muscle or joint pain.


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