The 225ft tower of Gloucester Cathedral will be lit up blue for ME Awareness Week from May 10 to May 16 – thanks to the pioneering work of Chantelle Parry, founder organiser of Gloucestershire ME/CFS Friendship Group.
Chantelle lives six miles away in Hardwicke on the edge of Gloucester, so she won’t be able to see the light shine out from the 11th Century landmark. But she’s pleased the cathedral authorities allowed her request at the second time of asking.
“I asked a couple of years ago and was told then that there was a waiting list. My request was granted when I applied again this year,” she said.
More than that, Chantelle has now left a very full note about the illness and her group on a page at the cathedral’s website, so visitors will know why the tower has turned blue and where local people with ME/CFS can go to find a hand of friendship.
Chantelle formed the group over three years ago and it now has 345 members – including people with Long Covid who have been welcomed lately because their symptoms look very much like post-viral fatigue syndrome and ME/CFS.
Chantelle (34) was a Zumba instructor and generally very active before a virus floored her, leaving her bedbound with M.E. five years ago.
She’s cared for mainly by her 11-year-old daughter Alice, a registered young carer who “seems to take everything in her stride and has this enormous capacity for caring.
“I’m a single parent and suddenly I found I couldn’t do much for myself. Alice has been brilliant.”
Chantelle says her mother, Michelle Shepstone, has also been a gem. They were in the same bubble during the pandemic so Michelle could visit and, now the weather is getting warmer, Michelle is able to take her daughter out for an hour or two occasionally.
Entry is free but donations are requested for the ME Association.