Helping people who are '˜trapped in the vice-like jaws of ME' with Hove yoga group
The Sussex ME Society was set up more than 30 years ago by Colin Barton, who after being diagnosed with the condition discovered there was little information or advice for people.
Myalgic encephalopathy (ME) can sometimes follow a viral infection or trauma and is classified as a neurological disorder. Symptoms include profound physical and mental fatigue, concentration and working memory difficulties along with mild confusion.
Colin, a Brighton resident, was diagnosed with the condition in 1987 – six years after he fell ill with glandular fever.
Now the Sussex ME Society has hundreds of members, and its achievements include campaigning for a specialist ME service in Haywards Heath.
“Things have got progressively better,” Colin said. “We did not have a specialist service 30 years ago or have the information 30 years ago.”
While the group has helped many to recovery, Colin said: “Although many can improve significantly or recover many do not and often remain ill for a long time.”
Colin sends out quarterly newsletters with the latest research, people’s experiences and notices about events for those with ME.
Jonathan Burrell of Hove, who has now recovered from ME, said: “When trapped in the vice-like jaws of ME, hopes of recovery can seem forlorn and unobtainable.
“My own struggle began in 1989, when I was diagnosed with ME having spent the previous two years travelling round the world. Before long, I was housebound having moved back to live with my parents, and in need of a great deal of care and support.”
But he missed sport, which he said ‘had always been a large part of my life’.
He joined the ME Society and started a ‘Yoga for ME’ class in Hove.
“This proved to be a real turning point,” he said. “Yoga was the first form of physical activity I was able to do without suffering a negative reaction.”
He said yoga, as well as dietary improvements, herbal remedies, acupuncture and much later, the lightning process, helped his strength to return.
“During this time, I began to become more confident about pushing myself physically and the fear of relapse diminished,” he said. “From yoga, I progressed first to playing tennis and golf and then to my real passions, football and running.
“Despite being in my late 40s, I made a return to Sunday league football after an absence of 21 years. At 50, I joined an athletics club in Lewes. I now run 35 miles a week, race for the club each weekend and have won medals in county championships, being East Sussex over 50s cross country champion two years in succession.”
Cathy Fry, who was also a member of the ME Society, took over the organisation of the yoga group around ten years ago. She explained how the group has become so successful there are now two classes, Yoga for ME and Yoga for Health which is open to everyone.
“People with ME, they may not come a few months if they are having a bad patch,” she said. “So it’s about keeping the price down and wanting to keep it for people with ME. We need to open it up to other people to keep it going.”
Cathy explained that yoga teacher Amanda Zaninetti adapts the class to people who ‘can’t necessarily stand up for an hour and do warrior pose’, but that there is a real focus on mindfulness and meditation, as well as remaining flexible.
When Cathy suffered from ME, she used to attend the class herself, and said: “I found if I was unwell for several weeks on end, I was too exhausted to do anything, but if I could make it to yoga you remain flexible.
“For me, when I first went there, it was the first time I talked to anyone with ME.”
Cathy said after 20 years with ME – 11 of those undiagnosed – she recovered 12 years ago.
“It’s both physical and mental fatigue,” she explained. “But yoga allowed me to keep my body supple so that I was not restricted in what I could do when I was well enough to do it. I recovered through the lightning process after 20 years. I had not expected to recover. A third of people who do the lightning process, like me, fully recover.
“If people develop it and it is diagnosed within a year they can often recover fully if they listen to their bodies. That is something yoga does wonderfully, reflecting on how you feel today. Listen to your body and do what your body tells you to do.”
Yoga for ME and Yoga for Health take place on Mondays in Hove. To find out more about the classes at the Sussex ME Society, visit: measussex.org.uk