Thousands of Sussex residents face a daily struggle against the debilitating symptoms of ME and GPs believe they need a specialist clinic.

Local health authorities and MPs are also pressing for action and the Government's Chief Medical Officer has backed the recommendations.

A draft plan for a specialist centre has even been drawn up - but there is no clinic.

Recent research suggests there are more than 4,500 adults and children suffering from Myalgic Encephalopathy/Chronic Fatigue Syndrome in Sussex.

It is estimated more than 3,000 may be prevented from working because of their illness. About 900 of those are housebound.

But there is painfully little help available in the county.

Diagnosis of ME is usually slow, sometimes taking up to 18 months, and worried and frightened sufferers are often left to manage their condition alone.

Chronically sick patients - those capable of making the journey - are forced to travel to London for treatment.

The Sussex ME/CFS Society has been pressing for a local clinic for 13 years.

It has been talking to the health authorities for the past four years and believed it was on the verge of a breakthrough.

However, the reorganisation of the NHS into primary care trusts has meant contacts and familiar faces have moved on and plans for the clinic appear to have been shelved.

Colin Barton, chairman of the society, believes a specialist centre is long overdue.

He said: "We're not asking for special treatment. We're asking for equal treatment.

"ME is a neurological disorder similar to Parkinson's disease or multiple sclerosis. Three times as many people suffer from ME as MS, yet there is only one eighth of the services. It is a serious illness and there is urgent need for attention."

At least four Sussex people have committed suicide because of ME.

Others struggle on day after day, trying to cope with symptoms, keep relationships together, find their way through the benefits system, even keep a roof over their heads.

Unable to cope, some sufferers in their 20s and 30s, are forced to move back in with ageing parents, putting additional strain on everyone.

ME is classified by the World Health Organisation as a neurological disorder and can follow a viral infection or trauma.

Symptoms include profound physical and mental fatigue, muscle pain, mood changes, sleep disturbance, alcohol intolerance, difficulty concentrating, short-term memory loss and gastric or eyesight problems.

Colin said: "There is often a lot of confusion with diagnosis in the early days of ME. GPs want to help but they are not specialists. There is nowhere to refer patients to, so they put them in touch with us but we can only do so much."

Colin was a member of the working party that drew up the report, published in January this year, which said there was an urgent need for support services in Sussex.

Clare Taylor, newly-appointed development officer for the society, said once the clinic is given the go-ahead, savings made in patients being referred to London, in earlier diagnosis and in benefits, would be considerable.

The Sussex ME/CFS Society was founded in 1989 with 100 members. Two years ago it became a registered charity and now has 800 members.

Until recently it was run purely on a voluntary basis, largely by members who were already struggling against chronic fatigue.

But earlier this year the charity won a £125,000 lottery grant, enabling them to employ a development officer.

Nationally and locally, everyone agrees there should be a clinic.

Professor Anthony Pinching, who heads the specialist CFS unit at St Bartholomew's Hospital, London, believes patients would be best served by a multi-disciplinary service in Sussex and has offered to help train a specialist.

He said: "Detailed plans have been developed to set this up but they appear to have got stuck in the NHS reorganisation."

KATE Robertson has been an ME sufferer for 20 years and is forced to make a 120-mile round trip for treatment.

She says: "Because we don't die, we just get left."

Kate's condition varies between being house-bound and bed-bound. She uses a wheelchair when she goes out and has been travelling to St Bart's in London for treatment for the past ten years.

If she travels by ambulance, she has to be up at 6am to be collected at 8am. The ambulance then stops several times on route, collecting and returning other patients.

Kate, 46, of Brentwood Crescent, Brighton, said: "I'm the first one on and the last one off so it's a very long and tiring day. St Bart's is an excellent centre but it's a long way to go. Sometimes I'm too tired by the journey to get any benefit from my appointment.

"Most GPs are well-meaning but they don't have specialist knowledge. I very much support the need for local services."

Kate is particularly concerned about children with ME and the effect it has on their education and family life.

"I think it is unacceptable that a chronic illness which affects children and young adults - which can go on for years and can destroy someone's career - is not given parity of care with other illnesses."

For more information about the Sussex ME/CFS Society, call 01273 778890 or visit www.measussex.org.uk