nvCJD - Illness That
Haunts Europe: One Family's Story
By Sarah Lyall
Armthorpe Journal
ARMTHORPE, England - It was bad enough when the two consulting neurologists began arguing, right in front of John Middleton, about how to tell him that the mysterious ailment afflicting his 19-year-old son, Matthew, was the always fatal human form of mad cow disease.
"One of them said, 'You tell him,' and the other said, `No, you do it,' " Mr. Middleton recalled in an interview, still incensed about it nearly four years after his son died. But there was worse to come. "Then they said that the tests had shown that he had a new variant of Creutzfeldt-Jakob disease," he said. "And in the next breath, they said, `Don't tell the press.' "
Mr. Middleton, a plumber who raised Matthew and his younger son in this down-on-its-luck South Yorkshire village, has not kept silent since. And since September, when the third person with close ties to Armthorpe died of the disease, he has been pressing Parliament, the government, the news media, the local authorities " anyone who will listen " to find out what the link was and what exactly infected his son.
It is an uphill struggle. About all anyone knows about the new variant of Creutzfeldt-Jakob disease is that it is incurable, that it is probably caused by exposure to meat contaminated with mad cow disease, that it targets young people, and that its incubation period might be more than 10 years. The issue has taken on a new urgency in recent weeks, as new cases of mad cow disease, the illness that devastated Britain's cattle in the 1990's, have been reported in several other European countries.
Since the first case of C.J.D. was diagnosed in the mid-1990's, 85 Britons have contracted the illness, which eats holes in the brain and causes dementia and the progressive loss of all physical functions. The authorities say they have no idea how many more people will fall ill. Current predictions are that the disease could strike as few as several hundred people or as many as 136,000.
Nor is it clear why some cases so far have been isolated, and others have appeared in regional clusters. In addition to Armthorpe, there are unexplained clusters of victims in Glasgow and in Queniborough, a village in Leicestershire. But pinpointing a cause and determining the connections requires poring over mountains of surgical, dental and medical records and asking the survivors to recall details about their dead children's lives more than a decade ago.
Among the questions being asked by the C.J.D. Surveillance Unit, a government agency in Edinburgh, are what the victims ate and how frequently they ate it, where the family bought meat, how often they went to fast-food restaurants, and how much they relied on cheaper meat products. Authorities are also investigating where meat sold by the village's stores, and served in its restaurants, came from.
"It's very difficult to gather that information," said Ian Carpenter, a spokesman for the Doncaster Health Authority, which has jurisdiction over Armthorpe. "You're talking about every cow that came into abattoirs which served Doncaster. Where did they come from, what were they fed, where did the meat go then?" In some cases, records don't exist anymore; in other cases, abattoirs and butchers that served the area in the 1980's have closed.
Matthew lived on the same street as 28-year-old Sarah Roberts, who died in September, and both went to the local elementary school. But Miss Roberts was five years older than Matthew, and their paths didn't necessarily cross much. Adrian Hodgkinson, who was 25 when he died in 1997, lived outside the village but often visited his grandmother, who lived near Sarah and Matthew's families, for Sunday lunches that tended to include beef.

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