The Sussex ME/CFS Society (incorporating Kent ME Society) Survey 2003

EXECUTIVE SUMMARY

25% of members had joined the society having heard of it through a national ME organisation, whereas only 7% had joined through NHS healthcare recommendations.

89% of members had joined to find out more information about ME/CFS with 60% of those also wanting to get support, access services and help support the society.

99% of members wanted to see a specialist clinic established in their home county. Of that 99% an average 84% felt that a specialist clinic should cover Diagnosis, Symptom control, Counselling, Management Strategy and Welfare Information.

52% members felt that their GP’s were reasonably knowledgeable and/or helpful with ME/CFS.

It was felt that from the results there is a definite need for a specialist NHS service (clinic) that was accessible to all and covered the points raised earlier.

Also identified was the need for more events such as house meetings and social gatherings throughout the counties and especially in some of the more inaccessible areas. Many would also like to see improved services for the severely affected.

It is felt that a personal one to one introduction to the organisation would be helpful. This would provide new members with information on symptom control, management, benefits and ME friendly professionals.

The need for improved information and training for health and social care professionals, particularly GP’s, was highlighted.

Funding will be required if the society is to extend its services to include a telephone information and counselling worker who specialises in dealing with ME/CFS sufferers.

Finally 83% felt that the society was generally meeting its aims of informing, supporting and representing those affected by ME/CFS and should further develop the existing services and introduce some new ones.

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