Monday May 12th will mark National M.E. Awareness Day in the UK. M.E., or myalgic encephalomyelitis, is a long-term, chronic illness that affects more than 20,000 adults and children in Scotland. Symptoms include persistent fatigue, muscle and/or joint pain, sleep disturbance, problems with concentration, headaches and other flu-like ailments. Frustratingly, there is no diagnosis, no blood test to detect it and worse, there is no cure.
For far too long, there has been little understanding of the disease and scant sympathy for those suffering it. From some quarters of the media the illness is mocked as 'yuppie flu', sufferers scorned as 'shirkers'. Some doctors treat their patients as if they're suffering a psychological rather than a physical illness. As a result, many retreat into shame and guilt, their stories unvoiced.
A year ago, Action for M.E., a national charity that campaigns on behalf of M.E. sufferers, approached me about facilitating a digital storytelling project. The National Director Sonya Chowdhury and Scottish Director Katrina Allen were passionate about encouraging and empowering those with M.E. to share their stories. Thanks to funding from the Health and Social Care Alliance Scotland's Self-Management Impact Fund, the project took form.
The purpose of the project was to encourage participants to engage in the art of storytelling, video technology and the internet to tell their stories and raise awareness of the illness. Given that most participants had little or no media experience, I decided to take a 'low-def' approach, using readily-available technology such as digital cameras, smartphones and laptops with which most people were familiar. We took advantage of free software such as Windows Movie Maker and Apple's iMovie for editing purposes, and used video-sharing sites such as Vimeo and YouTube.
Two groups were formed - one in Edinburgh, the other in Fort William - and the first storytelling workshops were held last summer. Sharing stories led to creating storyboards and plans for filming, taking photographs, recording narration and selecting music to accompany their stories. I enlisted the help of film-maker Paul Maguire from the Edinburgh Art College to provide technical advice and assistance. Over the months, we supported the participants through the creation of their videos, while sharing our expertise with the view that these film-makers would go on to share their new-found skills with their support groups.
Despite the ever-present spectre of ill-health which occasionally slowed us down, I'm pleased to say the project has been a success. Nearly everyone who joined the project finished their video and some went on to undertake a second one. One of our participants in Fort William became so enthused during the project that he enrolled in an Open University course in film-making; one of the women has used her storytelling and video skills to create a blog; and another has turned her media and storytelling talents to training doctors and health care professionals toward a better understanding of M.E. The project will also share its learning through a web toolkit, available through the Action for M.E. website, to encourage and enable others to tell their stories.
To celebrate the completion of the project and National M.E. Awareness Day, we are showcasing a selection of the short videos at the Scottish Storytelling Centre on Monday May 12th from 7pm-8:30pm. There will be an opportunity to meet and talk with some of the film-makers, the project organisers and, of course, to learn more about M.E. The evening event is free but you must book your place with the Centre. There will also be an afternoon workshop facilitated by myself and Kate Craik, one of the project's participants. We particularly invite anyone currently suffering or who has suffered from M.E. or who wants to learn more about this debilitating disease. Cost for the workshop is £8/£6 concession. Come and share your story.
Action for M.E. Digital Storytelling Project Facilitator