The need for better ME understanding

Her mother Kay, from Stone Cross, was cleared of attempted murder after helping Lynn to die after the condition left her bed-ridden and desperate.

But the reality for the thousands of people in Sussex with ME is the daily struggle to lead as normal a life as they possibly can.

Some may find themselves bed-ridden at times or housebound and in need of medical care.

Others can go on to make a full recovery but one of the most difficult things to deal with can be the lack of understanding from others.

Comments such as “pull yourself together,” really don’t help when a person has aching muscles is exhausted and cannot drag themselves out of bed on some days.

This is why the recognition from the World Health Organisation, which classifies the illness as a neurological disorder, is so important.

The National Institute for Health and Clinical Excellence (Nice) has also issued guidelines on dealing with the condition to the medical profession in recent years.

The Sussex ME Society estimates that ME affects more than 6,000 adults and children across the county.

The illness can follow a viral infection or serious accident.

Symptoms include profound physical and mental tiredness, muscle and joint pain, difficulty with concentration and short-term memory, sleep and mood disturbances and gastric and sight problems.

They can vary, fluctuate and can be made worse by over-exertion.

Colin Barton and colleagues set up the society in 1987 following Mr Barton's own diagnosis.

He was running his own hotel in 1981 when he became very ill after contracting a glandular-fever type illness.

He said: “I couldn’t carry out my duties at the hotel and at one stage I was bed-bound and had to be helped around by our elderly house-keeper.

“Finally I had to give up the hotel business and my other interests. I had to move home several times losing money as I went.

“Doctors weren’t sure what my problem was.”

Clare Francis, the novelist and yachtswoman, played a key part in the eventual diagnosis.

In 1987 Mr Barton watched her from his bed being interviewed on television when she had just gone public about having ME He said: “Immediately I thought that was arguably what I had. I went to see my GP and he sent me to the top specialist in the country and she diagnosed me.

“It took me years to get that diagnosis.

“These days it's much easier to get an early diagnosis as more doctors are informed and there is a specialist NHS service in Sussex that is helping a good number towards some form of recovery.

“Things have improved significantly for many of those with ME but the situation is still far from perfect especially for the severely affected.”

The Sussex CFS/ME Service based in Haywards Heath, that has dealt with more than 2,800 referrals since it was established in 2005.

However, it has limited medical input these days as the two medics in charge have recently retired and are proving difficult to replace.

The society's medical adviser, Keith Hine is an honorary consultant at Brighton and Sussex Unversity Hospitals NHS Trust.

He said: “When I was first appointed as a consultant physician in Sussex in 1984, chronic fatigue syndrome and ME was not generally accepted by the medical community as genuine diagnosis.

“It was against this background that a group of ME sufferers in Sussex founded the Sussex ME Society in 1987.

“There was little encouragement from mainstream medicine but the membership grew.

“Regular meetings took place and these served to disseminate knowledge of the condition and its management as well as being a forum for mutual support, advice and help.

“Special groups were spawned to cater for more personalised needs, such as parents of young patients and young people themselves. The year 2002 was a major turning point both nationally and locally.

“The Chief Medical Officer had appointed a group of experts to report back to him on CFS/ME and their report was published that year.

This was a milestone in that CFS/ME was at last accepted as a genuine illness.

“It led to the Department of Health recognising the lack of provision for ME sufferers and £8.5 million was ring-fenced to establish 13 clinical network co-ordinating centres and 47 associated multidisciplinary clinics in the United Kingdom.

“The Chief Medical Officer’s report and the 2007 publication of Nice guidelines for the diagnosis and management of CFS/ME have changed the medical perspective and we now see patients being diagnosed earlier.

“Appropriate management early in the disease seems to affect the long-term outcome.

“In a personal study of patients referred to my clinic I found a direct correlation between recovery and time to diagnosis.

“Those patients who made a complete recovery had been diagnosed within nine months of onset of symptoms, whereas, in those with significant long-term symptoms, the diagnosis had been delayed for a average of 46 months.

“We are now seeing GPs recognising the condition earlier, performing initial investigations, giving appropriate advice and making a referral when necessary.”

For more details about the charity's work, visit www.measussex.org.uk.