A packed room of young people aged 16-30 years old (and their carers, family and friends) living with Fibromyalgia, Chronic Fatigue Syndrome (also known as M.E.) attended the successful awareness event at West Berkshire Community Hospital on 23 October 2018. The event also launched a research project into the conditions by Dr Deepak Ravindran the Clinical Lead for Pain Medicine at Royal Berkshire Hospital (RBH), which is funded by Healthwatch West Berkshire, match-funded by Greenham Common Trust and supported by West Berks Fibromyalgia Support Group.
The evening was hosted by Dr Deepak Ravindran who introduced the event’s various speakers and then introduced the BBC Newsbeat documentary ‘M.E. and me’. The documentary’s presenter Emma Donohoe (who was diagnosed with M.E. when she was 19) revealed how the 250,000 people in the UK who suffer with the debilitating conditions live with their painful and varied symptoms, which still remain widely misinterpreted and misunderstood. Often harrowing the film showed a number of young people whose conditions are so severe they are unable to even tolerate light, sound or food.
“The symptoms of Fibromyalgia and Chronic Fatigue Syndrome (CFS)/M.E. vary among sufferers of the conditions, they include severe pain, extreme fatigue, dizziness, ‘fibro-fog’ or cognitive issues, headaches, rashes and irritable bowel syndrome (IBS); as well as anxiety and depression,” commented Dr Deepak Ravindran. “Some people end up house-bound, but many are able to manage their conditions. As such at the event we wanted to bring a range of specialists together who could offer advice on subjects such as exercise, physiotherapy, diet and talking therapies. Additionally, we were able to survey the young people who attended the event, as part of our research project. We hope the research will assist with our understanding of the conditions and how individuals, their carers and families manage them; as well as the planning of future care and the treatments we put in place.”
“Healthwatch West Berkshire is proud to be part of the research project into these conditions,” responded Andrew Sharp, Chief Officer of Healthwatch West Berkshire. “We were able to fund the event with our Community Engagement Programme (CEP) grants and match-funding by Greenham Common Trust. The grants aim to reach and assist groups that find it difficult to be heard, like young people. We were extremely pleased by the attendance and reaction to the Young People with Fibromyalgia and CFS event. The event was attended by specialist psychologists and physiotherapists from the Integrated Pain and Spinal Service (IPASS) and the Pain unit at the Royal Berkshire Hospital, a local GP, representatives of the West Berkshire Therapy Centre in Thatcham (rehabilitation and physiotherapy) and a nutrition/ functional medicine specialist from London, as well as members of the West Berkshire Fibromyalgia Support Group, who along with the documentary provided a wide range of advice and information to everyone who attended. We are now looking forward to supporting another event next year.”
As well as being a rich source of advice and information, all the young people registered at one of the 13 West Berks GP practices, who completed the research survey at the event were entered into a prize draw, there were three winners of Amazon Vouchers, including Katrina Cilliers (who won a £100 voucher), Lucy Pickup (who won a £50 voucher) and Katherine Poernig (who won a £30 voucher).
Anyone suffering from Fibromyalgia or CFS/M.E. who was unable to attend the event, who would like further information, especially those between 16 and 30 years old who would like to be part of the research project by completing the survey, should go to: www.facebook.com/westberksfibro or email: [email protected]