PROTEST: Alice Reeve says she wants answers over the ME blood donation ban
ALICE Reeve has taken her fight for greater awareness of the condition ME to London.
The 35-year-old, who suffers from fibromyalgia, a similar condition to myalgic encephalomyelitis, joined a protest sparked by a ban on ME patients giving blood.
Officials say it is intended to protect the health of sufferers of the condition, which is also known as chronic fatigue syndrome.
But the ME Association insists the move is motivated by fears the illness could be caused by a similar virus to HIV and be transmitted through blood.
Alice, who was part of a 50-strong protest outside the Department of Health on Monday, said: "People are still very much being treated as if ME is psychological, so therefore why are they also being banned from giving blood? We want answers."
The Cheltenham resident says she has been suffering from fibromyalgia, which causes widespread musculo-skeletal pain and fatigue, since she was 23, and believes a lot of people with it also have ME.
Last year, she set up Gloucestershire's first fibromyalgia support group, which has about 50 local people on its contact list.
Alice, who suffers from extreme tiredness and pain all over, says the condition has ruined her life.
She said: "You can't live a normal everyday life – your social life goes out of the window as well as your career opportunities."
ME Association spokesman Tony Britton said: "A UK-wide ban on everybody with ME giving blood came into force on November 1.
"The blood and transplant service says this is a precaution to protect a donor's safety by ensuring that their condition is not made worse by giving blood.
"But we think it's more to do with protecting blood supplies from an unusual virus, XMRV, which in some studies has been found to be infecting the blood of people with this illness.
"We welcome the ban as a precautionary measure while the exact nature of the virus is being established."
In the past, donors with a history of ME could give blood, provided they had completely recovered and were feeling well.
But NHS Blood and Transplant says that as ME is a condition where people can relapse and become ill again, donor selection guidelines have changed as a precaution.