A MAN who suffers from chronic fatigue syndrome said people with severe cases are left to deal with it alone due to underfunding.

Colin Barton, chairman of Sussex ME Society, said home visits are needed for people bed-bound by the condition, as many currently rely on family and friends to carry out everyday tasks.

He said they are “chronically overlooked” by the NHS in Sussex, which provides “fantastic care for mild and moderate” cases at Haywards Heath Health Centre, but “nothing at home”.

Myalgic encephalomyelitis (ME), also known a chronic fatigue syndrome (CFS), is a long-term condition with many symptons, the most common being extreme tiredness.

“These are people who are housebound,” said Colin, who lives in Brighton.

“Some of them are bedbound. The services in Haywards Heath are fantastic but they only cater for mild or moderate cases.”

There a currently no home visits available for those unable to visit a treatment centre, which Colin said needs to change.

ME affects around 4,000 people in Sussex, of which about 20 per cent are housebound.

Colin, 71, set up the society in 1987 after he was diagnosed with ME in the same year.

“I wasn’t very happy,” he said.

“But as time goes on you get used to it, you live within the limitations. I have to avoid stress, but I am much better than I was.

“There was so little support for people with ME in the area at the time.”

Sussex ME Society is promoting new guidelines for healthcare professionals produced by the British Association for CFS/ME (BACME).

The report covers all aspects of chronic fatigue syndrome, from diagnosis through to care, and echoes Colin’s calls for home care.

The Argus: Colin was diagnosed in 1987Colin was diagnosed in 1987

“Service providers should be proactive and flexible in delivering services to people with severe or very severed ME/CFS, who may have particular difficulty accessing services and articulating their needs,” the report said.

“This could include home visits, online or phone consultations, supplying written communication, and supporting their applications for aids and appliances.”

Exceptional cases of ME/CFS can see a person experience severe and constant pain, hypersensitivity to light, extreme weakness, reduced ability to speak, and many other symptoms.