Patients suffering from the early stages of variant CJD must be given access to a revolutionary new treatment that appears to have halted the disease in a Belfast teenager, it was claimed tonight.
Dr Stephen Dealler, a microbiologist at Lancaster University, who helped pioneer the use of pentosan polysulphate (PPS) on 19-year-old Mr Jonathan Simms, said a number of other CJD sufferers have been offered the radical treatment.
"Several patients early on in the disease are now being offered the drug. Its long term results must be investigated," said Dr Dealler.
Medical experts were in Belfast today to examine the case of Mr Simms, who had been given months to live before he began having the drug injected into his brain in January.
His family fought an eight-month court battle with health chiefs to allow him to be treated with PPS but it is not known whether the families of other CJD victims will face a similar fight.
Jonathan's father Mr Don Simms, who organised today's conference, said he hoped the medical establishment would now sit up and take notice of his son's improvement.
"Those who are in positions that matter, I hope they are listening today," he said.
He added that families of CJD sufferers who request this treatment must now be taken seriously.
"They should be looked upon very sympathetically if they ask for the treatment," he said.
Scientists and neurologists from as far away as Japan travelled to Northern Ireland for the conference.
They were informed there had been no further deterioration in Mr Simms' condition since he began taking the drug in January.
His GP, Dr Mark McClean, said his ability to swallow had returned, his body weight had returned to normal and he was no longer showing signs of anxiety.
"The professional hopes are that this isn't just being done for Jonathan. This is being done for all present and future victims of this disease," he said.
But Dr McClean later spoke of the frustration felt that the drug was not administered in March 2002, when Mr Simms family had first requested it.
"It is extremely unfortunate that we waited for eight months before the treatment was given. During that time, he deteriorated markedly."
"If only the condition had been stopped at an earlier stage, Jonathan would have retained more brain functions," he said.
Mr Simms said he believed his son's condition would not have deteriorated had he been given the treatment in March 2002.
"But we will never know fully until other patients are given this compound," he said.
He added: "When we wanted to apply the drug, Jonathan could walk and talk and feed himself."
Dr Chris Pomfrett, a lecturer in neurophysiology from Manchester University, has been monitoring Mr Simms' treatment using a new technique of measuring variations in heart rate.
He said tests on Jonathan before and after treatment have shown distinct changes, which have not been spotted in another vCJD patient who was given the tests but not the treatment.
Dr Pomfrett said he believed use of the drug should be opened up to other CJD victims but he warned that the drug was no miracle cure.
"All we have been able to do is stabilise Jonathan's condition. I don't think anyone in this conference would expect Jonathan to make a full recovery but we hope that he makes a partial recovery."
PA