Wednesday, September 30, 1998 Published at 00:07 GMT 01:07 UK
NHS is 'failing' ME patients
ME sufferers experience total exhaustion
Many patients with myalgic encephalomyelitis (ME) do not receive the services they desperately need, according to an independent group of academics.
The National Task Force on ME says there is still widespread ignorance among doctors about the treatment and management of the disease, which leaves its victims exhausted and in pain.
It says that in many parts of the country there are no services offered to help sufferers.
The task force calls on the National Health Service (NHS) "to address this urgently by making at least a minimum specialist service available in every health district in the UK".
"There are at least 170,000 people in Britain with this disabling disease - also known as chronic fatigue syndrome (CFS)," says Professor Peter Campion, chairman of the task force.
"The current failure to provide an adequate service leads to unnecessarily prolonged and severe illness and is wasteful and costly. NHS and Department of Social Security (DSS) resources are currently spent on disability which could be prevented."
A previous study has calculated that ME/CFS costs the country around £1bn a year. There are only 10 designated ME/CFS clinics in the UK and waiting lists can be a year or more. This means many people have to rely on their GPs.
Yet the report says many GPs have had no training on how to diagnose or manage the disease.
The task force says that although no cure is available, effective treatment does exist. It says best clinical practice:
It says the NHS and hospital trusts must now find money to provide better services.
It also wants the health service to start talking in a more constructive manner to the various ME/CFS support groups.
Earlier this year, the Chief Medical Officer Sir Kenneth Calman officially acknowledged the existence of ME/CFS and ordered an expert working party to bring forward recommendations.
Naomi Wayne, chief executive of the support group Action for ME, says there is now a momentum for change in the medical profession.
"Years of plugging away have built up such a head of steam that it's impossible to go on treating people with ME differently from other patients."
"ME has been distinguished by the unwillingness of the medical profession to take seriously the experience of patients. We're now becoming more like the rest of the world," she says.
ME/CFS is a painful, debilitating disease that affects adults and children.
People with ME/CFS suffer overwhelming fatigue, 'flu-like symptoms, painful muscles and aching joints, and swollen glands.
The condition can last for years and in severe cases leave the victim bedridden.
Last year a survey indicated it was now the most common cause of long-term sickness absence from school.