16:07 Thursday 12th December 2002
London Evening Standard
Drug trials could change the lives of multiple sclerosis sufferers. Chief reporter Lisa Bingham meets two people who are joining in the scheme.
After 23 years with little or no treatment, Steve Short is relieved that someone in the medical profession is finally taking an interest in the progression of his multiple sclerosis.
In all that time, the NHS has provided Steve, 49, with just two courses of steroids and four hours of physiotherapy. But his is a chronic illness with sometimes devastating symptoms. So why is so little done to help sufferers?
"There's no cure, and doctors basically just tell you to go off and sit in a corner," said Steve, who has turned to fellow sufferers and alternative therapies for help and support.
Now, after a quarter of a century living with the debilitating condition, doctors are starting to take notice of Steve, and others like him.
Members of Waltham Forest's multiple sclerosis charity, MS Action, are taking part in drug trials at the Royal London Hospital.
Over 20 of them are involved in the trials, which test two new drugs, Antigren and Linomide, alongside cannabis, which is already widely used by sufferers.
It is the standard "double blind" trial, in which some patients are given the treatment, while others are given a placebo. None of them knows which drug they are taking.
Steve is unsure if the drug he is on is having any effect. His left leg is better, but his right one is worse. Other testers have not relapsed since starting the trials four months ago, but that could just be coincidental.
But all the participants share a sense of positivity, that finally they are doing something about their illness.
Said Steve: "For the first time I'm controlling the illness, instead of letting the illness control me.
"When I was diagnosed I was told to come back in a year, I wasn't given any medication as there is no cure. But it's a very lonely illness. There's just no help for us out there."
Steve's life has changed significantly since his diagnosis in 1979. His wife has "made a life for herself" and friends have stopped asking him to parties or for a drink down the pub.
He has had to give up running the business he set up himself, and now spends most days at the MS Action centre, in Waltham Park Way, Walthamstow.
But the picture he paints of his illness is not all doom and gloom.
"You just adapt. Life would be boring if nothing ever changed," he said.
He has secondary progressive MS, which means he has increasing disability. Steve has a machine attached to his belt to send electric impulses to his foot to move it, otherwise it drags and causes him to fall over.
But he can still walk, talk and think.
"I may not be able to keep my legs busy, but I keep my head busy," he says cheerfully.
Debbie Peacock, 42, from Walthamstow, also on the drug trial, has relapsing and remitting MS, and can go months without any problems.
Other forms of MS mean some sufferers have very occasional relapses and no significant disability, whereas others have primary progressive MS, which means symptoms become worse over the years with no remission in between.
The initial reaction to being diagnosed with MS is often shock and devastation, as felt by Debbie and Steve, but mostly those diagnosed do not realise that it is not an automatic death sentence.
Those with MS, on average, lead only slightly shorter lives than healthy people, and hospital spells are rare if the illness is managed properly.
There is a range of therapies available at MS Action, including a pure oxygen tank which improves symptoms.
No-one knows why people get MS, although there are different theories, one of which is that it is caused by a lack of vitamin D, as people in hot countries, where the sun produces more vitamin D in the skin, do not, as a rule, get it.
There are 1,100 separate drug trials going on in the world at the moment, all hoping to find a cure.
You would imagine Steve is desperately impatient for a result. Not so.
"I've lived with this for 23 years. If it takes another five years for
someone to find a cure to turn me back into the person I used to be, then
that's worth waiting for."
© Copyright 2002 Newsquest Media Group