Stage 1: Identifying people affected by ME
From September to December 2018 we will begin the programme with a pilot project focussing on Stoke Climsland/Callington area.
We will try to attract the attention of and identify ME/CFS sufferers in the area who would like to engage with us. This will involve press releases, articles in the local press, requests to local radio, regional TV stations, contribution to local journals, e.g. Stoke Climsland Old School News, church magazines, offer of talks to local Rotary Clubs, Lions, W. I. organisations etc, and negotiating with the local health centres to distribute leaflets/posters etc.
Stage 2: Mutual support
We will work with sufferers, carers, Invisible ME Association volunteers and appropriate agencies to clarify what support we could develop. We will also work with agencies such as Citizens Advice to offer support, if requested, in relation to welfare, insurance payments and other issues. We will also begin work with our partners to promote the centre as a venue for promoting awareness of the condition within the community as a whole.
Social media such as Facebook will also be used to help build an ME/CFS sufferer and carer network within the initial target area of East Cornwall and surrounding area
.We will explore a range of ways in which support can be offered through volunteer visits. This may, for example, involve the identification and engagement of volunteers who are willing to spend time with isolated sufferers/carers. Volunteers may offer to accompany ME/CFS sufferers on visits to medical appointments. This process may also involve creative ‘thinking out of the box’ initiatives, such as ‘pet’ visits – for some people time spend with a dog, for example, can be a source of comfort – and opportunities to engage in activities such as mindfulness/meditation practices and complementary therapies : such approaches can help build coping strategies and enable sufferers to handle their situation with more equanimity.
Expression of personal experiences and narratives will be encouraged and potentially shared using a range of expressive forms such as autobiographical writing, art work and poetry. These stories and experiences will, with appropriate permission, be used as resource material for a theatre production to tour the area and beyond in 2020.
Stage 3: Touring theatre production
To use the language of theatre and the arts to raise awareness of the lived experience of ME/CFS sufferers, to explore implications and issues arising and encourage deeper understanding of the condition amongst the wider public and the medical profession.
- The level of awareness of this condition amongst the general public is low. We therefore plan to target community audiences in the chosen area.
- There is also a low level of awareness and understanding of ME/CFS within the medical profession. The illness hardly appears in the process of medical education with the result that many doctors do not recognize ME/CFS as a distinct and serious illness. Our longer-term proposal is to develop a version of the play specifically targeting medical schools and other forms of medical education.
We have assembled an experienced company of theatre practitioners to devise, write, rehearse and tour a theatre production raising key issues arising from ME/CFS and created from interviews, stories and experiences of ME/CFS sufferers, their carers and medical practitioners.