ON behalf of people whose lives have been affected by the illness myalgic encephalopathy (ME), and as it is National ME Awareness Week from May 12 to 19, I thought it appropriate to supply details of a survey conducted by Action for ME to dispel some of the mystery surrounding this illness.

Nearly 2,500 members participated and the findings reveal a catalogue of failure and discrimination, highlighting the fact that those who are most severely ill get the least support and care.

Indeed, Action for ME concludes that "members have experienced an NHS which fails them and a social services system which seems to discriminate against them."

The main conclusions are:

77 per cent experienced severe pain and more than 50 per cent had felt suicidal.

A third received a diagnosis only after 18 months and 52 per cent reported that this had made "a huge difference," but nearly two out of three received no advice from their GP on managing the illness.

Action for ME states that "it is clearly a misconception to think of ME as a mild illness. It is neither mild for the people who have it, nor is the impact on the wider community mild. The loss to the economy is substantial, in terms of both lost revenue and social costs.

A large portion of the ME community is at one level invisible, but we should be under no illusions that the impact of this illness affects far more than the 150,000 people who actually have it.

It is time that those with ME get the type of treatment and services that the illness so clearly deserves.

The East Lancs ME/CFS Support Group is campaigning for community services and specialist out-reach services, as well as guidelines on early diagnosis and prompt information to be issued to all doctors, together with education and training for all health professionals and for benefits agency staff on ME and its impacts.

SHEILA FISH (Publicity Officer, East Lancs ME/CFS Support Group), Hodder Court, Stonyhurst, Clitheroe.