'Yuppie flu' is finally being taken seriously (From The Argus)

'Yuppie flu' is finally being taken seriously

11:41am Thursday 30th August 2007 in News

More than 5,000 people in Sussex are believed to suffer from the debilitating condition ME.

As a society set up to help them celebrates its 20th anniversary this year, reporter Siobhan Ryan finds out what progress has been made.

Myalgic encephalomyelitis (ME), or chronic fatigue syndrome, was originally dismissed by the medical world as yuppie flu, with sufferers told it was all in the mind.

However, many influential bodies, such as the World Health Organisation, now think it is a real illness despite there being no accepted cure or universally effective treatment.

The condition is being taken more seriously, with the National Institute for Health and Clinical Excellence (Nice) issuing new guidelines earlier this month that health professionals should acknowledge the reality and impact of the illness and its symptoms.

In June 2006 Brighton and Hove coroner Veronica Hamilton-Deeley recorded chronic fatigue syndrome (CFS) as the official cause of death for the first time in the UK.

Sophia Mirza's death was said to be caused by "acute renal failures as a result of chronic fatigue syndrome".

Art graduate Sophia, 32, from Brighton, suffered with CFS for six years before she died in November 2005.

The condition can affect anyone at any age, with some cases linked to a viral infection while others are triggered by an operation or an accident.

Symptoms include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and inability to concentrate.

The effects of the syndrome vary but it can change people's lives drastically - schooling or employment can become impossible and some people may be housebound or confined to bed for months or years.

Recovery is also unpredictable. Some people do recover completely, although it can take a number of months or years.

Colin Barton knew he had serious health problems when he had to be helped across the road by an 80-year-old woman.

He was in his mid 20s at the time and realised the crippling fatigue and aches and pains he was suffering had put his life on hold.

The problems began for Mr Barton in 1981 when he developed a viral infection which he could not shake off.

As the months and years progressed his condition deteriorated and he found himself becoming more and more debilitated, eventually spending most of his time in bed, unable to summon the strength to get out. It was only when he spotted a TV programme featuring yachtswoman Clare Francis talking about her experiences with ME that Mr Barton realised what his problem was.

He said: "My friends around me recognised the symptoms she was talking about and said that was definitely me. I was eventually diagnosed with ME in 1987."

It was at this point Mr Barton realised there was very little information about ME and not a lot of support so he decided to set up the Sussex ME/Chronic Fatigue Society that same year to try to help others and learn more.

The group now has more than 1,000 members and, as well as helping develop local services, has had an input in national policy.

Mr Barton was on the Chief Medical Officer's working party, was involved in consultation with the Medical Research Panel and was recently a reviewer of the new Nice guidelines.

One of the group's proudest achievements was its involvement in setting up a Sussex-wide specialist treatment centre for ME sufferers in Haywards Heath.

It has only been going for two years but has already dealt with more than 1,000 referrals from GPs.

The service has provided better access and support for patients who previously had to travel to London to get the treatment they needed.

Mr Barton, from Brighton, said: "The centre has made such a difference to a lot of people. We worked closely with the Primary Care Trusts for four years before the centre opened and we are so pleased it is now here.

"It is a sign the NHS and the Government are taking the condition seriously and are doing what they can.

"Great progress has been made in the past 20 years and we are determined to make sure progress continues. It gives us a great sense of achievement to see what difference has been made over the years."

The society runs regular local support groups around the county, works with yoga experts and has close links with the NHS Expert Patient programme, where people are taught how to manage chronic conditions and get the most out of life.

Support groups are also being set up for parents of young people with ME and for young carers of older people with the condition.

The society has organised hundreds of meetings and conferences, one being the second largest gathering of ME/CFS patients to be held in the UK, which was chaired by Clare Francis at Hove Town Hall in 1992.

The charity was also shortlisted for an Argus Achievement Award in 2005 and was commended in BBC South's Community Champions awards in the same year.

Mr Barton said: "The aim is to try to make sure as many people as possible get the best help possible they can. Things are improving and the illness is being taken seriously but there is still a long way to go."

Kate Logan, 54, from Mile Oak, was diagnosed with ME in 1993 after falling victim to a series of illnesses including chickenpox and glandular fever.

She gradually changed from someone who had a full-time job as a nurse, worked as a part-time DJ, went to the gym regularly and exercised her two dogs daily, to someone who was bed-bound and unable to leave the house.

She said: "It started off with muscle and joint pain and led to extreme fatigue. I used to be very fit and it was actually when I was on a treadmill at the gym that my legs gave way.

"I had various tests done before I was eventually diagnosed. It was a bit of a double-edged sword. I was pleased to get a diagnosis but I still had to face scepticism not only from family but from the medical profession.

"People at work were very understanding and helped by reducing my hours but there were others who felt it was all in my head and I just needed to pull myself together.

"It can be an isolating condition and can lead to depression because you are on your own for long periods.

"This is why the society has been such a help. It helps me sort out getting benefits and offers advice about the treatments available.

"Things are progressing at the moment but I think I am probably as well as I am ever going to be. I try all sorts of methods and treatment such as modifying my diet and keeping a close eye on the amount of activity I do.

"I can still get exhausted quickly and when I go out I need the car or my electric scooter."

Oliver Rooke, 31, from Seaford, was in his first year at university when he fell ill with glandular fever. The then 19-year-old became so sick he had to drop out of his computers and management course and was never able to go back.

He said: "I had persistent fatigue both mentally and physically. I tried to do as much as I could by shutting off and ignoring what was happening.

"But eventually it all caught up with me. I eventually accepted the diagnosis and in the mid Nineties I joined the ME Society.

"It was good to speak to people who understood what I was going through and could offer their own help and advice about various diets, treatments and therapies that might be able to help."

Mr Rooke now runs a group for people in the Seaford area which is regularly attended.

He said: "Perceptions have changed over the years and people are more accepting but there is still much that people do not understand.

"People often associate my tiredness with how they might feel after a long day at work when actually it is something much more intense than that. I have not been able to work since university as I become so mentally tired I cannot function any more. Although there is no cure the longer you have a condition the more you learn how to manage it .

"I used to try to live my life with the same energy and activities as I had lived before but this would lead to me overdoing it and I would crash down. So I learnt how not to overdo things and to conserve my energy and strength."

Jonathan Burrell, 44, from Hove, first became ill in 1989 when he returned home from travelling in Latin America with the flu.

He was never able to shake off the illness and ended up having to give up his job and spent two years unable to get out of bed. He was also housebound for a further five years.

He said: "All I could do was sleep for 17 or 18 hours at a time. I had really bad muscle pain and headaches and mental fatigue.

"I could not manage to read anything for more than half an hour before I started getting pains.

"I had been really active, I played football, had run in marathons and half marathons and was a regular swimmer.

"To find myself completing a half marathon one day and then a few weeks later struggling to walk ten yards to the end of the drive was devastating."

Mr Burrell's condition began to stabilise during the Nineties and as his strength recovered he found himself slowly able to do more.

He joined a yoga group, which was the first activity he had been able to manage since his diagnosis and was an important step on the road to recovery. Since then he has gone from strength to strength, managing to find a part-time job and recently taking up football and running again.

He met his partner Tamasin Cottingham, 31, while at a group meeting of the society and they have been making steady progress together.

He said: "I am further along than Tamasin but she is improving all the time.

"I am probably about 80 per cent recovered now.

When I remember what I was like and look at myself now I can see just how far I have come.

There is light at the end of the tunnel.

More about the condition

• The term ME originates from the Fifties when there were several outbreaks of a non-paralytic polio-like illness in Britain.
  
  

• Notably the Royal Free Hospital, Hampstead, had to close when 292 of the medical and nursing staff went down with the illness in 1955 and some are still affected today.
  
  

• Well known people affected by ME include yachtswoman Clare Francis and Esther Rantzen's daughter Emily.
  
  

• More details about the society can be found at www.measussex.org.uk