The National ME Research Observatory is asking people with ME to help them identify the different services available for people with ME.
They want to set up a comprehensive database of specialist service information for people with ME and those who support them. This is an area where few statistics are collected nationally and, indeed, the National Health Service no longer even collates contact details for their specialist ME/CFS services in England.
Monica Curran, a research assistant with the project at the University of East Anglia, is asking people to let her have as much raw data as possible – be it about what an individual centre provides by way of services or a specialist service given to an individual. And the information can be about services that are public or private, local or national.
"We are interested in services provided on the phone, the web and in person. They might include self-help groups, nformation sources, health professionals, clinics, advocacy services, support to access employment, education, training, benefits or pensions – or any other helpful specialist services."
Access to the database will become freely available in 2008, she adds.
People can either fill in the survey online or contact Monica for a copy. For details, phone Monica or 01603 593063, or click here to email Monica.