PEOPLE suffering with ME are to get a higher profile as well as a say in the services they want in Herefordshire.

The Primary Care Trust is currently deciding how best to develop the services they need and special information packs have been prepared filled with information to help the victims.

For years people with ME had complained their illness was unrecognised and neglected.

This began to change in January last year when the country's chief medical officer stated that CFS/ME, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, was a potentially debilitating illness that needed to be taken seriously.

Such recognition of the illness brought relief and a ray of hope to many despairing victims in Herefordshire resulting in the setting up of a ME/CFS Working Group.

Representatives came from Herefordshire Primary Care Trust, local ME/CFS groups, a GP practice, voluntary groups and Welfare Rights and the meetings were chaired by officers of Herefordshire Community Health Council.

Meetings resulted in the CHC sending out a questionnaire to sufferers in the county asking for their input.

They replied with a wide variety of issues, ranging from financial concerns, home help, the attitude of GPs, to treatment, symptoms and severity of illness. More meetings and finally a report compiled from all the information in the questionnaires has led to the decision to set up a new benefits service in the county for ME/CFS sufferers.

The Primary Care Trust is involved in talks on how best to take this forward. The Community Health Council has funded and compiled an information pack for sufferers and their families to compensate for the lack of information available to people with the illness. The CHC has now made the pack available and a copy has been presented to Simon Hairsnape, director of health development with the Primary Care Trust.

He said the Trust had been involved in the work from the beginning but one of the difficulties it had faced was identifying the specific needs of patients.

"It has been very useful to have worked so closely with patients and the Community Health Council, enabling us to highlight areas of concern along with areas of future development,'' said Mr Hairsnape.

Copies of the ME/CFS report and information packs are available at Herefordshire Community Health Council, phone 01432 358491.