Wed, 07 Nov 2018
AN EVENT to launch research and awareness into chronic conditions suffered by young people was held at West Berkshire Community Hospital last Tuesday.
It was attended by young people aged between 16 and 30 years old, living with fibromyalgia and chronic fatigue syndrome, (also known as ME), along with their carers, family and friends.
The event coincided with the launch of a research project into the conditions by clinical lead for pain medicine at the Royal Berkshire Hospital Dr Deepak Ravindran.
Guests, including members of the West Berkshire Fibromyalgia Support Group, watched the BBC Newsbeat documentary ME and me, whose presenter Emma Donohoe was diagnosed with the condition when she was 19.
The film revealed how 250,000 people in the UK who suffer with the debilitating conditions live with their painful and varied symptoms, that remain widely misinterpreted and misunderstood.
The documentary showed young people whose conditions were so severe they were unable to tolerate light, sound or food.
Dr Ravindran said: “Some people end up housebound, 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.”
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 and a nutrition/ functional medicine specialist from London.
The project is funded by Healthwatch West Berkshire, match-funded by Greenham Trust and supported by West Berks Fibromyalgia Support Group.
Healthwatch West Berkshire chief officer Andrew Sharp said: “Healthwatch West Berkshire is proud to be part of the research project into these conditions.
“We were able to fund the event with our Community Engagement Programme grants and match-funding by Greenham 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.”
All the young people registered at one of the 13 West Berkshire GP practices, who completed the research survey at the event, were entered into a prize draw. Three winners won Amazon vouchers: Katrina Cilliers, Lucy Pickup and Katherine Poernig.
Anyone suffering from fibromyalgia or CFS/ME who would like further information, can visit www.facebook.com/ westberksfibro or email firstname.lastname@example.org