On 3 April a dissemination event was held at the University of East Anglia, to share preliminary findings from research projects undertaken by the M.E. Observatory. The focus of the meeting was the health and social needs of people living with M.E./CFS.
Twenty-three people living with M.E. and carers, 10 health professionals, MP Dr Ian Gibson and 13 members of university/Observatory research teams attended to explore early research findings and to share ideas on making these useful for policymaking, support services and further research.
The findings from research studies led by the University of East Anglia (UEA) are the first to emerge from a research programme carried out by UEA, Hull University and the London School of Hygiene and Tropical Medicine, in partnership with Action for M.E. and funded by the Big Lottery Fund. These studies examined the impact of living with M.E., relationships between people with M.E., health professionals and services.
The event helped test new and flexible ways for making research more accessible. Speakers were UEA research team members, including Dr Fiona Poland, Mr Chia Swee Hong, Dr Simon Horton and Dr Lee Hooper. Findings were presented in different ways, including discussion groups, short summaries, audio recordings, diagrams and stories. Occupational therapy students in UEA's School of Allied Health Professions offered personal support to participants.
The research was based on talking directly with people with M.E. and those caring for them, across England. Early findings highlighted how people can often be excluded from getting the health and social support they need, partly because of difficulties in diagnosis and in explaining the condition to others.
Factors found helpful to overcome barriers included good available information, increasing healthcare professionals’ awareness, and helping people to explain how it affects them as individuals.
Another study has built a database of services, identifying shortages of personal, home and respite care in the process.
Other Observatory studies will report next year on the prevalence of diagnosed and potentially undiagnosed M.E., as well as on the quality of life of people living with it.
The research team will use feedback from participants on the event, a take-home CD and the on-line directory of services accessed through Action for M.E.’s website, to pinpoint which research findings and products can help people living with M.E. improve understandings of dealing with the impact of M.E.
Next steps will be to pilot ‘roadshow’ materials which can be used by support groups, service provider training and public information – with final versions of the materials to be freely available via Action for M.E.’s website later in the year.
Dr Poland comments: “Research partnering Action for M.E. and a network of universities has flagged up the need to work closely with people who have M.E. to promote understanding of the impact of the illness and better access to appropriate support.
“We hope this work will help people living with M.E. to see that their stories can be heard, taken seriously and that this can help develop the timely, responsive and person-centred services we know are needed.”
