From the Express and Echo, Exeter, 26 April 2011
Big turnout for launch of Myalgic Encephalopathy sufferers’ group
Extra help for ME sufferers is to be provided for the first time in the city with the launch of a new support group.
Emma Webb was diagnosed with ME – Myalgic Encephalopathy – two-and-a-half years ago and discovered there was no independent support group available for the growing number of sufferers. So she decided to do something about it.
This month, more than 40 ME and chronic fatigue sufferers met for the inaugural meeting of an Exeter support group, which aims to offer help to sufferers, carers and their families as well as dispelling myths surrounding the condition.
Emma, 37, from Dunkeswell, said: “We just want to let other fellow sufferers and their families and friends know about our group.
“There were no other groups around. They offer a six-week group at the hospital but after that there is nowhere to go. I needed more than that six weeks and I thought the only thing I could do was set a group up myself. My occupational therapist put me in touch with four other people who felt the same way and we just went from there. We were shocked at how many people turned up at the first meeting, We had such fantastic feedback.”
“This illness affects people in a variety of ways, with common symptoms including fatigue, cognitive problems, memory loss, aches and pains as well as dietary and digestive problems.
“My husband Dave did a sponsored bike ride in the New Forest during the second year of my illness so that we could set up an ME support group as there wasn’t one which we knew of in the East Devon area.
“We now have four people on our committee all of who are fellow ME sufferers.”
Joining Emma on the committee is Anne Madray and Evelyn Paul, who are both from Exeter and Joanna O’Donnell, who is from Sowton.
The new group has been named SAME in Exeter which stands for Support and Awareness of ME.
It will now meet on the second Friday of every month at Jurys Inn in Exeter from 6.30pm. The next meeting will be on May 13 and a £2 donation is requested to cover the cost of hiring the hall.
Mrs Webb said: “It provides a relaxed and friendly atmosphere with practical sessions and social events.”
Those at the first meeting came from as far as Tiverton, Exmouth and Seaton.
Ms Madray said: “There is no cure for ME but awareness of the condition is important. Families, partners and members of the public are all welcome to attend the monthly meetings.
“There are many symptoms often individual to each person, and speaking to your GP is essential.”
At the meeting, Ms Donnell also gave a personal account of her journey through ME and the difficult time she had to obtain an accurate diagnosis and treatment.
Anyone wishing to volunteer and receive further information can email firstname.lastname@example.org.