Fri, 17 May 2019
LOCAL groups and businesses worked to turn West Berkshire purple as part of an international awareness campaign for people suffering from fibromyalgia.
Healthwatch West Berkshire (HWWB) joined forces with the Department of Pain Medicine at Royal Berkshire Hospital (RBH) for the event last weekend.
A range of organisations displayed posters and changed their window displays and lighting in order to support the #MillionsMissing campaign, which aims to get those with fibromyalgia/chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME), and their symptoms visible within the community.
The Turn West Berks Purple activity is part of a larger project in the region, sponsored by HWWB to raise awareness of the conditions, particularly among young people aged 16 to 30.
The fibromyalgia spectrum of conditions is not entirely understood because each sufferer displays different symptoms, many of which are largely unexplained and may not be constant.
Clinical lead for pain medicine at Royal Berkshire Hospital Dr Deepak Ravindran, whose clinic with the local community is at the West Berkshire Community Hospital, said: “The research programme that my colleagues in the department and I are undertaking is principally surveying younger people between 16 and 30 years old.
“We are looking at the nature of the symptoms individual sufferers have, how they manage those symptoms, what support they get and how their condition is understood by those around them.”
Conditions range from pain and exhaustion, to sleep disturbances, depression and anxiety, all of which may be made worse by even the slightest exertion, such as having a shower, making a bed or going for walk.
This wide and varying range of individual symptoms makes diagnosis difficult and currently, although the symptoms can sometimes be managed via talking therapies, physiotherapy, pain management and other activities, there is no single regime that works for everyone.
HWWB chief officer Andrew Sharp said: “Turn West Berks Purple is about being part of an international movement to raise awareness among young people.
“We’ve engaged with a number of different organisations in our community in order to get our message out to a younger audience and to gain an overall picture of those between 16 and 30 who suffer from fibromyalgia, CFS and ME.
“Via Newbury College we are hoping to engage with a young audience, as the students work on initiatives to raise awareness of the conditions and to support a 4th of July Independence From Fibromyalgia event at the college.”
Local organisations who joined the campaign included The Gallery Café, West Berkshire Community Hospital, Newbury College, the Corn Exchange, The Unruly barbers, Draco Florist, The Ugly Duckling Pottery Painting Coffee House and Burdwood Surgery.
Newbury College work placement coordinator Julie Barker said: “We are delighted to be working in partnership with Healthwatch West Berks and Dr Ravindran from RBH.
“Our students are part of the local community.
“So, we are pleased to help with this initiative and for various departments to be involved with the Independence Day event, which will give young people in the area a chance to fact find, share experiences and socialise within our college.”
“We are delighted to help Turn West Berks Purple.”
The Gallery Café contract manager Ifor Sheldon said: “Dr Ravindran holds a regular pain clinic at the West Berks hospital and his patients with fibromyalgia, CFS and ME often enjoy a cup of coffee in our café.
“This is an often invisible condition, so we are pleased to help the West Berkshire Fibromyalgia Group raise awareness.”
For further information about the research survey, go to www.facebook.com/westberksfibro