Its a condition needing Empathy

It’s a condition needing empathy’

http://www.suttonguardian.co.uk/display.var.699442.0.its_a_condition_needing_empathy.php

Dismissed by some as yuppy flu', ME affects as many as one in 200 people in the UK. Despite this there is scant medical knowledge on the condition. RICHARD LYONS reports on how attitudes are now beginning to change.

In March 1997, Tia Newell was walking along a London street when she began to feel unsteady on her feet.

Believing she needed food, she went into a nearby Burger King in the hope of eating something sweet would stop her feeling faint.

While ordering, however, events suddenly took a turn for the worse. Her knees began to give way and she collapsed to the floor.

There was no way of knowing at the time, but this incident was just the start of a nine-year ordeal which would transform her life.

Ordinarily a hard working energetic woman, she was forced to give up her former life as she became completely bed bound and spent a total of two and a half years in hospital.

As it later emerged, this prolonged, debilitating and frustrating state was not an effect of a well-known serious illness such as cancer. Nor was it the result of a paralysing accident.

In fact, Ms Newell had been reduced from a happy-go-lucky woman to an existence dependent on round-the-clock care, because of little-known disease myalgic encephalopathy (ME) or chronic fatigue syndrome (CFS).

Her individual experience was extreme, but it is believed the illness which has symptoms such as exhaustion, muscle pains and headaches affects as many as one in 200 people in the UK.

Despite the disease's prevalence though, there remains scant medical knowledge on the subject and until relatively recently it was dismissed by sceptics as "yuppy flu".

"There was so much ignorance you felt obliged to try and educate people about it," Ms Newell, 46, says. "The doctors were not unsupportive but they were still out of their depth. I felt a bit like I had been written off at a young age. It was still life."

Now living at home after being discharged from hospital for the last time in December 2003, Ms Newell's experience has left her feeling let down by the health service.

She describes with bitterness the way her condition was regarded cynically by medical professionals but, at the same time, she concedes there is also perhaps a light at the end of the tunnel.

Nearly a decade after Ms Newell was first taken ill, attitudes are finally beginning to change towards the controversial illness.

Following a 2002 report by the Chief Medical Officer into the condition, the Government has spent £8.5million setting up 13 specialist centres for CFS/ME patients.

Successfully defeating bids from other areas, Sutton is now home to one of these centres under the leadership of consultant immunologist, Dr Amolak Bansal.

"There are countless people whose lives have been shattered by this condition and who have been left without support and hope for an uncomfortably long time," he says.

"Fortunately, things have advanced to the extent that people recognise it as a genuine illness rather than an abnormal behaviour pattern.

"This is important because if you can diagnose the condition at an early stage, there's increasing evidence the more serious consequences can be diverted."

Indeed, one of the many problems facing doctors treating the condition is that there is no simple way to confirm whether a person's symptoms are actually being caused by CFS/ME.

It can not be identified through a basic process such as a blood test, and as a consequence much of the evidence the condition exists comes from the reports of patients themselves.

This situation is further complicated by the fact CFS/ME sufferers outwardly look well, therefore creating a tendency among others to treat their claims with suspicion.

"People are inclined to disbelieve someone, because all you have got to go on is the subjective view," says Dr Bansal. "If you look well people may think you are malingering or there is an alternative motive for your condition.

"I think we need to make people aware this is a distinct medical condition which needs empathy."

As an indication of the new empathetic approach, Dr Bansal's centre treats patients with a never before seen level of specialisation and expertise.

Treatment is split across two sites, with patients initially seen at St Helier Hospital for investigation and diagnosis.

Those with persistent fatigue are referred to Sutton Hospital.

Once at Sutton, patients can expect to get a detailed plan for managing the condition along with treatments including physiotherapy, occupational therapy and counselling.

The centre accepts patients from a large area covering much of the south east and there is every indication ME sufferers have better than ever chances of recovering.

"The new centre and teams mean we can start developing focused, local services that will make a real difference to people's lives," Dr Bansal says.

"The support and understanding of health professionals is an important factor in the care of people with this condition.

"The education and training provided by the centres will be invaluable in providing health professionals with the information they need to help their patients."

Although doctors seem to be making great strides forward in their understanding of the illness, there remains much to be done as Dr Bansal freely admits.

Greater funding is needed to conduct further research into what he dubs a "puzzling" condition, while more effort is required to change attitudes among the wider public.

For her part, Ms Newell may sadly be too late to benefit from the service offered by the new centre which offers no outreach service to house bound sufferers.

At home in her Brighton Road flat, she needs a carer on hand 24 hours a day in order to perform basic every day tasks such as eating, going to the toilet and getting dressed.

Each day brings new and difficult challenges and she is adamant more must be done by to help those like her who were abandoned by medical science.

"ME is a life changing and devastating illness," she says. "It destroys your life. I used to enjoy working and being useful but now I feel useless and a burden. There is a desperation just to be able to do things."

10:03am Friday 3rd March 2006