Document Directory

02 Nov 00 - CJD - Third victim is linked to 'CJD cluster' village
02 Nov 00 - CJD - Third victim of vCJD linked to pit village
01 Nov 00 - CJD - Farm animals face new BSE checks
01 Nov 00 - CJD - First beef - now lamb to the slaughter?
01 Nov 00 - CJD - Hunt for link between two CJD cases on same street
01 Nov 00 - CJD - Ministers consider ban on eating lamb as BSE sheep scare grows
01 Nov 00 - CJD - Food agency urges mass screening of sheep for BSE
01 Nov 00 - CJD - Hindsight makes us no wiser, Lord Phillips
01 Nov 00 - CJD - Street's second CJD victim rarely ate beef, says father
01 Nov 00 - CJD - Ban all animal cannibalism, says food safety chief
01 Nov 00 - CJD - One BSE lamb could kill all sheep
01 Nov 00 - CJD - Scottish victim tortured by cruel disease
01 Nov 00 - CJD - Scrapie could mask a killer in sheep
01 Nov 00 - CJD - Tissue of greasy, grey paste
01 Nov 00 - CJD - Village alarmed by second CJD death
31 Oct 00 - CJD - Watchdog seeks stricter controls on animal feed
31 Oct 00 - CJD - Food watchdog calls for ban on 'animal cannibalism"
31 Oct 00 - CJD - 'mad cow' victims were neighbours
31 Oct 00 - CJD - BSE fears for UK lamb
30 Oct 00 - CJD - Reinjecting trust
30 Oct 00 - CJD - Kal's story
30 Oct 00 - CJD - Power obfuscates
30 Oct 00 - CJD - Scientists investigate possible CJD cluster



02 Nov 00 - CJD - Third victim is linked to 'CJD cluster' village

By Mark Wilkinson

Independent ... Thursday 2 November 2000


Fears that a cluster of variant CJD cases may have occurred in a former mining village grew yesterday withnews that a third victim had links with the area.

Sarah Roberts , 28, an accountant from Armthorpe, near Doncaster, died in September, nine weeks after being diagnosed with variant Creutzfeldt-Jakob disease, the human form of BSE. Her former neighbour Matthew Parker , 19, died of vCJD three years ago.

Now it has emerged that a third victim, Adrian Hodgkinson , 25, a former RAF policeman from Harrogate, visited Armthorpe regularly in the years before his death in February 1997. His mother, Betty, said: "Adrian came to Armthorpe every weekend between 1972 and 1986... He didn't know the other two victims but he had meals in the village and it's a possible link which has to be investigated."

Scientists who have already visited the relatives of Miss Roberts and Mr Parker will now explore connections with Mr Hodgkinson.


02 Nov 00 - CJD - Third victim of vCJD linked to pit village

By Paul Stokes

Telegraph ... Thursday 2 November 2000


A third victim has been linked to a former mining village that is at the centre of an inquiry into a possible cluster of deaths from the human form of BSE.

Adrian Hodgkinson , a former RAF corporal, ate roast beef dinners on Sundays at his grandmother's home in Armthorpe, Doncaster, South Yorks, for many years. In February 1997 he became the 16th person in Britain to die from vCJD when he was aged 24.

This week it was disclosed that two victims of vCJD - Sarah Roberts , 28, who died in September this year and Matthew Parker , 19, who died in March 1997 - lived in the same street in Armthorpe. Both attended the same local comprehensive school and had played together.

It is now known that Mr Hodgkinson was a regular visitor to his grandmother's house three streets from their homes in Wickett Hern Road. Experts from the CJD surveillance unit in Edinburgh are being called on to examine any links between the three deaths.

The issue was raised in the Commons yesterday by Rosie Winterton, Labour MP for Doncaster Central, who informed the House of Mr Hodgkinson's case. His father, Barry, 58, who was born and brought up in Armthorpe, called for an inquiry.

Adrian Hodgkinson, his father, mother Elizabeth, 56, and sisters Angela and Amanda visited Mr Hodgkinson's mother Vera in Armthorpe most Sundays for 14 years from 1972. Mr Hodgkinson said: "All five of us used to visit her most weekends. We always had a traditional Sunday roast beef dinner with Yorkshire pudding. Adrian was a big beef fan, he loved his meat.

"We never thought about the link with Armthorpe until news of this possible cluster arose. My mother lives there, many members of my family still live there and Adrian visited for years. The link is there. It could mean contaminated meat from a certain source was sold to all three families . We need to find out the link. It has to be jumped on quickly by the Government."

Adrian Hodgkinson, who served in the RAF Police, ate all meat products. He developed pins and needles in his fingers in March 1996 and died within nine months. His father said: "The doctor said if it wasn't for variant CJD, Adrian would have been the fittest man he had ever seen. But as the illness took hold he became depressed and after extensive tests a neurologist confirmed the disease. It was terrible to see him go downhill."

Matthew Parker's father, John Middleton, 46, said: "It is not a coincidence that Matthew and Sarah died. There is a connection in Armthorpe somewhere but we don't know where. It is up to the scientists to find out quickly."


01 Nov 00 - CJD - Farm animals face new BSE checks

James Meikle, health correspondent

Guardian ... Wednesday 1 November 2000


Britain's farm animals face new checks for BSE-like infections to guard against incurable diseases being passed to humans through meat, milk or other routes.

The independent food standards agency is recommending increased monitoring of sheep, tests on sheep intestines used for sausage casings and surveillance of deer raised for venison.

Research into whether animals such as pigs and poultry can carry diseases fatal to humans without showing outward signs is expected to start soon . The agency wants the use of recycled carcasses and blood for feed to be outlawed . The use of chicken feathers and manure in poultry feed is also being reconsidered. Fish farming practices are likely to be examined also .

Tests on cows' milk were announced by ministers in August but the whole research programme is likely to cost more than the £90m earmarked by government bodies over the next five years.

Around £140m has been spent since BSE was identified in 1986 but now other areas of the science research budget may have to be raided.

The agency is worried by slow progress in checking whether BSE has crossed from cattle to sheep - experiments on 200 sheep take up to two years at a cost of £20,000 for each animal. It says other biochemical tests should also be used to check the brains of dead sheep for BSE and that developing a test for live animals is a priority.

Although the presence of BSE in the 44m national sheep flock remains a theoretical possibility, the agency fears the industry could be almost wiped out if transfer were found to have occurred. The government is making contingency plans for a disaster with sheep, trying to identify flocks which appear genetically resistant to BSE-like diseases.

The agency said that most animal experiments take a long time. A spokesman explained: "We have to accept that decisions on the management of the epidemic and the protection of the public's health will continue to be based on an incomplete understanding of the science and will rely on expert judgments for years to come."

Further bans on farm feeding practices that turn animals into cannibals were also urged in a draft report from the agency on anti-BSE controls. The agency wants EU partners to introduce further feed controls and ensure that pro-cessed meat products exported to this country state whether they contain mech-anically recovered meat made from high-pressure machines forcing meat off bones - often used in products such as burgers.

Machine recovered meat from vertebral columns of cattle and sheep is banned .

Other MRM is not , although products made in such a way in this country have to carry labels . The agency has been told that the use of sheep intestines for sausages in this country is low.

The programme shows how seriously government bodies are taking the advice of the Phillips inquiry into BSE. BSE-like infectivity has not been found in experiments into cows' milk or poultry. Pigs have been infected experimentally by injection but not by feeding. Sheep have caught BSE after being fed infected cattle brain.

The agency is dismayed that a new cattle tracking system meant to ensure animals can be traced is not watertight. Up to 10% of "passports" are not properly filled in.


01 Nov 00 - CJD - First beef - now lamb to the slaughter?

James Meikle - health correspondent

Guardian ... Wednesday 1 November 2000


The possible existence of a sheep BSE equivalent has raised doubts over the future of the other red meat in British supermarkets. We're better informed this time, but it still could be a lottery .

So the Sunday roast is under threat again. Once it was beef; now it is lamb . The longstanding worries among government advisers on whether BSE has moved from cattle to sheep, first expressed more than four years ago, finally exploded into the public limelight yesterday as the Ministry of Agriculture admitted that slaughtering the 44m-strong national flock was among the options to be considered if the worst came to the worst.

Presumably any moment now then there will be contingency arrangements discussed with New Zealand and other major exporters to see if they could increase supplies to maintain demand while our farmers restocked. Supermarkets will no doubt also be considering alternative arrangements.

Should we be worried? Yes, in that the science of these horrible diseases is still so uncertain that every precaution now needs to be taken against infecting the population. But if BSE has transferred to sheep through cannibalistic feeding practices that meant sheep and cattle remains were fed to sheep and cattle, this probably happened years ago.

That means the sheep that caught it, if it existed, are long dead. But there remains the haunting possibility it has existed for years as a hidden, slumbering, but still infectious disease, masked by another infection which is not thought to have been dangerous to man.

The problem is that the way BSE seems to work when deliberately used to infect sheep in laboratory conditions means that few cuts would be "safe" to eat, unlike with cattle . Should lamb be banned in the absence of evidence that it is free from BSE? No. Such an approach could lead to many other foods disappearing from the shelves too.

At least consumers can now make up their own minds as they were unable to about beef for years, since chief medical officers and ministers sedated the public into thinking it was safe . Beef sales did drop after the link between BSE and deaths in humans was circumstantially established in 1996, but they have recovered as prices have fallen.

Are we simply greedy or more sophisticated about risk? Maybe the establishment is learning that the public can be trusted not to panic at every food alarm and as consumers we are finally learning the lesson of the BSE in cattle crisis that we should take an interest in our food, how it is fed, slaughtered and processed into food. And keep our fingers crossed.


01 Nov 00 - CJD - Hunt for link between two CJD cases on same street

By Terri Judd

Independent ... Wednesday 1 November 2000


"The rumour is that it was the school ," said a worried-looking housewife caught in the middle of the latest CJD cluster scare yesterday.

Two doors down, her neighbour was convinced it must have been a local butcher.

Wickett Hern Road - a neat development of Seventies brick houses in the Doncaster suburb of Armthorpe - may resemble thousands of other streets but in a nation with 85 confirmed cases of variant Creutzfeldt-Jakob disease, two victims have died only doors away from each other .

Six weeks ago Sarah Roberts, 28, died only two months after being diagnosed with the disease. In 1997, Matthew Parker, a young man who grew up a few hundred yards away and also attended Armthorpe School, lost his life to the human form of BSE. He was just 19.

Scientists from the National CJD Surveillance Unit in Edinburgh have begun investigating a suspected cluster of the debilitating illness. They have, as is their standard practice in all cases of vCJD, interviewed both Miss Roberts's and Mr Parker's families in an attempt to trace a link.

A cruel fact for the community that shops at the same food outlets and sends its offspring to identical schools is that the scientists have no answers. And most people yesterday talked of "shocked anger " at the double deaths on their doorstep.

The information chasm has been filled by rumours , which have cut a swift and insidious path across the carefully clipped lawns and into each tidy home.

"We are angry and shocked . It could affect the whole street. Everybody buys from the same butchers," said factory worker Alan Tingle, 53.

"I am disgusted with it all. It really brings it home when it is on your doorstep. My daughter went to the same school.

"Nobody has told us anything . We have been misled by the politicians. Someone wants sacking," he added.

Yet, as Dr John Radford of Doncaster Health Authority pointed out, there is no proof the disease emanated from a local butcher or the school. It might just be a coincidence.

"I don't believe in coincidences. There has got to be a connection," said Christopher Roberts, Sarah's older brother, yesterday. Almost daily his mother, Sheila, has called Matthew Parker's father, John Middleton, to jointly rack their brains as to any similarities.

Both Mr Parker and Miss Roberts overlapped at school between 1988 and 1990, but were of differing ages. The young man "liked his hamburgers", while Miss Roberts rarely touched beef. "We are just trying to find a link, but we haven't found anything," her mother said yesterday.

The 54-year-old telephonist watched her attractive, intelligent accountant daughter regress to the age of a tiny child in a matter of nine months. She died at midnight on 14 September, being cared for by her parents at home.

"We still have no answers and I think it will be quite a while before we do," Mr Middleton said.


01 Nov 00 - CJD - Ministers consider ban on eating lamb as BSE sheep scare grows

By Charles Arthur, Technology Editor

Independent ... Wednesday 1 November 2000


A complete ban on eating lamb and the slaughter of thousands or even millions of sheep might be imposed if BSE, or "mad-cow disease", is found to be widespread in the national flock, the Government said last night.

The move is part of a Ministry of Agriculture, Fisheries and Food contingency plan. Another is that only sheep from breeds genetically immune to BSE and related diseases would be allowed on sale. But that could still lead to thousands of animals being killed.

The plans emerged after a Food Standards Agency (FSA) working party said urgent action was needed to produce a test to find out if BSE had passed into sheep through infected feed. A report yesterday by the FSA team, headed by its chairman, Sir John Krebs, echoed the scientific advisory committee, which says BSE in sheep could be masked by scrapie, a disease similar to BSE but which does not seem to infect humans.

Sir John said: "Of the 40 million sheep in Britain, some 4,000 do succumb annually to another disease, scrapie, which appears not to have any human health risk. It is possible, however, that some of these animals are actually suffering from BSE. We simply do not know."

Only a few hundred scrapie cases are reported annually, but research shows that many more animals die while incubating the disease.

Sheep have been artificially infected with BSE in the laboratory. So far it has not been identified in farm sheep, but only 200 animals have been tested. The present test for BSE takes up to two years and costs more than £20,000 a time. The FSA called for a faster and more reliable test to be developed.

The issue is important because, unlike in cattle, BSE in sheep is not confined to specific organs and tissues such as the brain and spinal cord. Sheep with BSE would have to be destroyed, and no part of their carcases allowed into the human food chain. At present, the potentially most infective tissues - the brain, spine and various organs - are removed and not used.

A spokesman for the National Farmers' Union said farmers would have to face up to the "terrifying" prospect of entire flocks being destroyed if BSE was discovered in sheep.

BSE, which many scientists and the recent Phillips report suggest originated in cattle rather than being derived from scrapie, could have passed over to sheep through infected animal feed.


01 Nov 00 - CJD - Food agency urges mass screening of sheep for BSE

By David Brown, Agriculture Editor

Telegraph ... Wednesday 1 November 2000


A Mass screening campaign to determine whether BSE has spread to some of Britain's 40 million sheep should be carried out with "great urgency", the Food Standards Agency said yesterday.

The agency said that the presence of scrapie - a strikingly similar brain disease - in up to 10,000 sheep a year could be "masking" the presence of the cattle plague. BSE has been linked to the deaths of 81 people from new variant Creutzfeldt-Jakob disease (vCJD).

While BSE has been passed to sheep under laboratory conditions it has never been found to have occurred naturally. But agency experts are worried because so few tests have been carried out. "As a matter of great urgency there is a need to develop and apply a rapid screening method so that large numbers of sheep can be tested," the agency said in a review of BSE controls.

The agency supported a Ministry of Agriculture, Fisheries and Food scheme to eliminate the BSE and scrapie family of disease from sheep through selective breeding programmes but expressed concern that this would take 10 years or more to complete. It called for the project to be speeded up and for contingency plans to protect the public and the industry in the event of naturally occurring BSE being found in sheep.

The agency said sheep would have to be withdrawn totally from the market if BSE was found in them because trials had shown that the BSE agent penetrated more parts of the body than it did in cattle. This would make the precaution of removing and destroying specified high-risk materials ineffective.

The report also called for a total ban on feeding practices that turned farm animals into cannibals . Sir John Krebs, chairman of the agency, said there was evidence that controls in Britain were working. He said: "But because of so much uncertainty, the review suggests that current controls be retained and in some areas tightened."

The report urged tougher tests to determine the safety of sheep intestines used in sausage casings and to find out whether the BSE agent could be transmitted in milk . It also called for the use of more efficient tests to find traces of BSE in mechanically recovered meat.

Sir John said that consumers should be given clear information to enable them to choose whether to eat British or foreign meat. The National Farmers' Union of England and Wales said it welcomed any research to improve food safety.

The Co-op called yesterday for a total, Europe-wide ban on feeding animal products to farm livestock.


01 Nov 00 - CJD - Hindsight makes us no wiser, Lord Phillips

By Tom Utley

Telegraph ... Wednesday 1 November 2000


Six days on, the impression of the BSE report that most of us carry in our minds is of two sets of photographs in the newspapers. On one page, the young victims of vCJD, whose awful deaths caused unimaginable distress to their parents and those who loved them. On the opposite page, photographs of the ministers and officials who are criticised in the report. Most of us will have drawn a subconscious connection between the two sets of photographs: the people pictured on page six died because of the failings of the people pictured on page five. This impression will have been strongly reinforced by the Government's decision to award compensation to the families of the victims.

In fact, the connection is almost certainly false. Everything that scientists know about BSE and vCJD (which is very little indeed) suggests that those who have so far died of vCJD contracted the disease before anybody knew - or could have been expected to know - about the outbreak of BSE among British cattle.

It was not until December 1984 that cow number 133 fell ill at Pitsham Farm, near Midhurst, West Sussex, becoming the first known victim of mad cow disease. At the time, the case seemed to be isolated, and two years passed before it became apparent that many more cattle were infected. It is now thought likely, however, that the BSE epidemic may have begun, undetected and undetectable, in the early 1970s.

Nobody knows the incubation period for vCJD, and so we cannot say precisely when Pamela Beyless, Maurice Callaghan or any of the other victims contracted the disease. But the strong likelihood is that they first became infected before any of the "villains" named in the Phillips report had any reason to be aware that an epidemic of BSE was spreading through British cattle. To put it brutally, the chances are that most of those who have died of vCJD would have died no matter what the government had done. They would probably have died even if, at the very moment when cow number 133 first staggered and fell in Midhurst, an edict had been passed banning British citizens from eating anything but potatoes.

It is therefore nonsense to suggest that the people pictured on page five last Friday can be held in any way responsible for the deaths of those on page six. It is very easy to understand the feelings of the parents of the victims, who have suffered so much and who now want somebody else to suffer, somebody to blame. But when they rail against those criticised in the report, demanding resignations and compensation, they are railing against the wrong people.

I cannot claim this insight as my own. I owe it to having read an analysis of the report by Sir Richard Packer, who was permanent secretary of the Ministry of Agriculture from 1993 until this year and was praised in the report. But it seems to illuminate everything that is wrong with the report, with the way in which it was presented by the press and with the Government's reaction to it.

The report's greatest weakness is that, inevitably, it was written with the wisdom of hindsight. I should point out that, on the questions of BSE and vCJD, hindsight is not particularly wise. Even today, no link has been clearly established between the two diseases - and the report is just plain wrong when it says that it has.

Lord Phillips deserves credit, however, for having at least tried to judge all the actors in the drama in the light of what they knew at the time. He is also graceful in acknowledging that the BSE crisis landed the Ministry of Agriculture and the state veterinary service with an enormous workload, involving post-mortem reports on some 200,000 suspect cattle.

But despite his best efforts, Lord Phillips never quite succeeds, when he comes to apportioning blame, in shutting his mind to what he knows now (or, rather, what he thinks he knows now: that the BSE epidemic posed a severe risk to the health of the human population of Britain).

Take one example. In May 1990, the then agriculture minister, John Gummer, was informed that a cat had come down with feline spongiform encephalopathy. "It was not clear at the time whether there was any connection between BSE and the cat," says the report. "It was possible that cases of FSE had occurred in the past, but had never been diagnosed. Mr Gummer understood from Mr Meldrum [Keith Meldrum, then chief veterinary officer] that there was no likely connection between the cat and BSE. Mr Meldrum should not have given this reassurance, for it put the matter too high."

We can all see why Lord Phillips was interested in that cat. He saw it as the first real evidence that BSE could jump from one species to another. (In fact, there is still no evidence that it can, and we still don't have the foggiest idea how the cat caught FSE). But at the time, Mr Meldrum considered the evidence of a link between BSE and FSE, thought it unlikely and told the minister so. What was wrong with that?

And what if Mr Meldrum had told the minister that, in his opinion, the cat had caught FSE by eating infected beef? Should Mr Gummer then have introduced swingeing new restrictions on the sale of beef for human consumption, on the strength of one dead cat? Remember, he had an entire industry to consider, and the livelihoods of thousands of beef farmers.

This is Lord Phillips's worst shortcoming. He fails, again and again, to put himself in the government's shoes and to judge the balance of risk on the evidence then available. He is looking for faults (we cannot blame him for that, because that was his brief). But, in some cases, he finds them unfairly.

Anybody reading his report with an open mind will see that the government and the civil service behaved extraordinarily well from the start. They assessed the available evidence intelligently, and acted swiftly and decisively as soon as they saw a real risk to human health. That is a far more accurate impression of the report than the image of those two sets of photographs on pages five and six.


01 Nov 00 - CJD - Street's second CJD victim rarely ate beef, says father

By Paul Stokes

Telegraph ... Wednesday 1 November 2000


A Young woman who became the second person in the same street to die from variant CJD rarely ate beef, her father said yesterday.

Sarah Roberts, 28, was a happy, fit, normal fun-loving girl, said Frank Roberts, 56. "She did not eat junk food, rarely ate beef and chicken was her preferred meat," said Mr Roberts at his home in Armthorpe, Doncaster, south Yorks.

A link between her death in September and that of Matthew Parker, 19, three years ago is being investigated. Miss Roberts lived with her parents at their detached home at 21 Wickett Hern Road for 25 years while Mr Parker lived 200 yards away at No 43 for at least four years.

They played together with other children during this period and both attended Armthorpe Comprehensive School. Their families are thought to have used the same shops. Mr Roberts, a plumber, and his wife, Sheila, have contacted Matthew's father, John Middleton, since their daughter's diagnosis in July.

Mrs Roberts, 54, a hospital telephonist, said: "We want to know how our daughter died and if there is any possible link between Sarah's death and that of Matthew. We keep going over in our minds on how their paths crossed. The experts have questioned us about their living in close proximity so it may be significant."

After three passes at 'A' level, Miss Roberts worked as a trainee accountant at a hospital and then at a construction company. Through day release and home study she gained qualifications in management accountancy and was due to take her final examinations in the summer.

She became depressed early this year and as her condition worsened she was forced to give up work and driving. By June she had difficulty walking and could not be left alone. She was given a bed downstairs and suffered nightmares and hallucinations so badly that her parents slept in a bed alongside her.

Mrs Roberts said: "The nightmares were the worst. She would start screaming and crying in the night. They were screams of pure horror. I used to dash over to her bed and cuddle her. We knew there was no hope."

Mr Parker, a trainee chef, who was 6ft 8in tall, was said to have eaten up to four burgers at a time and drank milk by the pint . His father said: "Their deaths are not just a coincidence. There is a strong link. It's like trying to find a needle in a haystack."

Dr John Radford, Doncaster's director of public health, said: "People should remember that the exposure is likely to have occurred 10 to 15 years ago. The current risk to public health is nil or negligible from eating British beef."

Michael Breen, an Armthorpe councillor, considered two victims in the street as "astonishing ". He said: "Rumours are abounding such as did both Sarah and Matthew have school dinners? We just want some answers and nobody knows where to look."

Experts from the CJD surveillance unit in Edinburgh have been called in. A similar exercise is to be undertaken in Queniborough, Leics, where five people with connections with the village have died from the disease.


01 Nov 00 - CJD - Ban all animal cannibalism, says food safety chief

By Valerie Elliott, Consumer Editor

Times ... Wednesday 1 November 2000


A COMPLETE ban on the cannibalistic practice of feeding farm animals their own meat and bone meal was put forward yesterday by the Food Standards Agency (FSA).

At the moment there is a ban in Britain on feeding meat and bone meal to farm animals, but the proposals would extend this to blood, gelatin and tallow .

The new checks were put forward by Sir John Krebs, FSA chairman, who revealed his key findings into a review of BSE controls in Britain. He fears that without such a ban animals could be prone to new BSE-type diseases which could affect human health.

His proposals are to be discussed by a BSE stakeholders group, which includes meat industry representatives, tomorrow and must be ratified by the agency board next week before they are sent to ministers.

The FSA would like ministers to press for an EU-wide ban. It also wants tighter checks on animal feed to be introduced across Europe. At present the EU has banned the use of meat and bone meal in cattle and sheep, but not in pigs and poultry.

Sir John signalled that further controls in Britain could apply to the banning of feathers and chicken manure in poultry feed, and feeding fish waste to fish. But he first wished to seek the views of scientists on the Government's main BSE advisory committee, the Spongiform Encephalopathy Advisory Committee.

The food standards watchdog is determined to resist calls from the livestock industry to allow pig meat and bone meal to be fed to poultry.

The FSA also flagged up its concern about the difficulty of checking imports of mechanically recovered meat. MRM is the raw meat removed from bones at high pressure. It is used in cheaper burgers, sausages, pies and mince. The FSA called for more research for a test to detect MRM in meat products. Sir John admitted he had no idea how much was being imported, where it went or how it was sold. Last night the main supermarkets said MRM had been removed from their own-label goods. Tesco and Sainsbury said it was also banned from branded goods in their stores. Asda and Safeway were unable to list branded goods which might contain it.

It is understood that some products might be labelled "mechanically stripped", a process similar to mechanical recovery.

Sir John has made clear he does not wish to see any reduction in BSE controls and he believes cattle aged over 30 months must remain banned from the food chain.


01 Nov 00 - CJD - One BSE lamb could kill all sheep

By Valerie Elliott, Consumer Editor

Times ... Wednesday 1 November 2000


The Government is ready to order the slaughter of the country's entire population of 40 million sheep if BSE is found in lamb.

The Ministry of Agriculture, Fisheries and Food (MAFF) confirmed that under new emergency plans there could be a complete ban on people eating British-reared lamb and mutton .

The contingency plans, which are to be set out in a new report to Nick Brown, the Agriculture Minister, before Christmas emerged last night after calls from Sir John Krebs, the chairman of the Food Standards Agency, for a new screening programme to check whether sheep in Britain could be infected with BSE "as a matter of urgency".

A MAFF spokeswoman admitted last night that the draconian slaughter plan existed and officials were working on the assumption that if BSE were found in sheep the Food Standards Agency would declare all British sheep meat unsafe and impose its total ban in the food chain.

Another possibility, however, is that only meat from sheep genetically immune to BSE-type diseases would be allowed on sale. But even under this scenario millions of sheep would have to be destroyed.

Sir John suggested yesterday that a new test be developed as soon as practicable to check sheep entering the food chain in abattoirs. He was not satisfied with a current ten-year research plan which involved tests costing £20,000 for each sheep.

He emphasised, however, that there was no evidence of BSE in sheep and that for 200 years scrapie, a similar brain disease, had not posed a risk to human beings.

But in the aftermath of the BSE inquiry report by Lord Phillips, Sir John backed the need for further checks to ensure that scrapie, so similar to BSE, was not masking an epidemic in the flocks.

Concerns that BSE might exist in sheep and other animals were raised recently by Professor John Collinge, of Imperial College School of Medicine, who demonstrated that a sub-clinical but infectious form of BSE might exist in animals without them showing any symptoms.

Sir John also called for more testing on milk , pigs, poultry and even deer to check whether they could be vulnerable to a BSE-type disease. He said new studies were planned on milk from cows injected with high and low doses of BSE, and supported calls by the Spongiform Encephalopathy Advisory Committee, for new tests on pigs and poultry to check if they too could be vulnerable to a form of "mad cow" disease.

Sheila McKechnie, director of the Consumers' Association, said last night that it was the first time a Government agency was acting "with honesty and respect for the public on food safety".


01 Nov 00 - CJD - Scottish victim tortured by cruel disease

By Gillian Harris, Scotland Correspondent

Times ... Wednesday 1 November 2000


A Scottish man who died at the age of 28 was a victim of the human form of mad cow disease, it was confirmed yesterday.

David Antonio, 28, died at his parents' home in the Highlands after a nine-month illness. A post-mortem examination this week disclosed that he had suffered from vCJD.

Yesterday Brenda Steel, Mr Antonio's sister, criticised the Government for failing to offer support to the victims of vCJD and their families. "It is a horrific thing for someone to have to die from. Help and support just is not there. People do not know who to turn to," she said from her home in Alness, Easter Ross.

Mrs Steel, 37, said that in the latter stages of his illness, her brother needed 24-hour care. "At the time, you don't really have any anger. Our everyday life was just to care for David. Now, after he has gone, the anger starts.

"He should just never have had vCJD. No one should have caught it. People should have been told that there was a possibility that you could die from eating meat. David wasn't given that choice."

Mrs Steel said that until he fell ill last Christmas, Mr Antonio had been a lively young man with a busy social life. She said his illness began with mental problems. The family had no idea what was wrong until doctors at Aberdeen Royal Infirmary told them that he appeared to be suffering from vCJD. It was the first case that staff at the hospital had come across. The diagnosis was supported by the CJD Surveillance Unit in Edinburgh.

Once his condition deteriorated, and there was little more that doctors could do, Mr Antonio was returned to his family home.

His close-knit family, including his mother, Ellen, his three sisters, his brother and his brother-in-law, all helped to nurse him through his final months before his death in September.

The family is still struggling to come to terms with their loss. "We aren't really coping," Mrs Steel said. "Looking back and thinking, you realise what he went through. It is a horrible disease. It is like they are being tortured."

Mr Antonio was born in Orkney, where his father, John, still lives.


01 Nov 00 - CJD - Scrapie could mask a killer in sheep

By Anjana Ahuja

Times ... Wednesday 1 November 2000


The warning by the Food Standards Agency yesterday that BSE in sheep could be "masked" by scrapie could be crucial. The sheep disease shares many characteristics with BSE and variant CJD. All are caused by prions, which are defective brain proteins.

It takes only one deformed protein to initiate the disease, causing neighbouring proteins to become deformed. The three diseases turn brain matter into sponge, which is why they are termed spongiform encephalopathies. The symptoms across sheep, cattle and human beings are grimly familiar: dementia, loss of co-ordination, blindness and eventual death .

BSE, found in cattle, is suspected to have crossed the species barrier and caused vCJD in people, but scrapie is not thought to be capable of the same biological trick. That is why sheep are considered safe to eat. However, that conclusion rests on one crucial assumption - that sheep do not have BSE .

No trace of BSE has ever been found in sheep, but scientists now wonder if they have been looking hard enough. The trail of alarm began several months ago in the laboratory of Stanley Prusiner, the Nobel prize-winning scientist at the University of California credited with discovering prions. He injected mice with material from scrapie-infected sheep. Some of the mice developed symptoms very similar to BSE. The only explanation, Dr Prusiner concluded, was that the sheep material contained BSE prions alongside scrapie ones.

If BSE does exist in sheep, why has it not been noticed before? It is possible that the number of BSE prions in sheep's brains are too low to be picked up by current screening methods. Scientists have suggested it may be possible for sheep to harbour BSE without showing symptoms; it is also plausible that sheep apparently suffering from scrapie were, in fact, infected with BSE. This is potentially a nightmare - that sheep meat pronounced safe to eat by scientists is in reality a silent vehicle for BSE.

Worryingly, laboratory tests have shown that BSE prions can survive the rendering process that turns sheep carcasses into animal feed.


01 Nov 00 - CJD - Tissue of greasy, grey paste

Staff Reporter

Times ... Wednesday 1 November 2000


Mechanically recovered meat is an ingredient of cheaper brands of sausages, pies, patés, kebabs, burgers and ready meals . The scrapings are removed from bones which are put through apparatus resembling a giant washing machine. Every shred of tissue is stripped off in a greasy, grey porridge or slurry-like paste. It can be treated with preservatives to keep bacteria at bay, textured with emulsifiers and thickeners to make it firm or chunky, coloured to make it look pink and lean, and incorporated in any food in which the meat is no longer readily recognisable. That includes tinned meats, meat pastes, cheap "minces" , and even recipe dishes such as stews, curries or casseroles.

In one test, 91 per cent of consumers asked to try "mince and onion" made with mechanically recovered meat failed to realise that it was made with chicken, not beef or lamb. Minute examination of food labels is necessary to ensure that such meat is not present.


01 Nov 00 - CJD - Village alarmed by second CJD death

By Paul Wilkinson

Times ... Wednesday 1 November 2000


Two people who lived in the same former pit village - at one time only 100 yards apart - have died of variant Creutzfeldt-Jakob disease, fuelling fears of a cluster of cases.

The deaths are being investigated by experts from the government-backed surveillance unit who are trying to find a possible link.

Sarah Roberts, a 28-year-old accountant, died in September, only nine weeks after her illness was diagnosed . Matthew Parker, 19, died from vCJD three years ago. As children, both attended the local comprehensive school and played with their friends in fields near their homes in Armthorpe, on the outskirts of Doncaster.

Scientists from the CJD unit at Edinburgh University have visited the relatives of both victims, whose deaths are the only ones from vCJD in the Doncaster area.

Miss Roberts, who died on September 14, never knew that she had vCJD. By the time that a specialist had confirmed her condition, she was too ill to understand. Short-term memory loss meant that she had even forgotten about the tests that doctors had carried out. Instead her parents concentrated on making her final days as full and peaceful as they could.

This time last year she was a bright young woman on the verge of a successful career, preparing for her accountancy exams. When in January she complained of depression her parents put it down to her impending finals and a break-up with her boyfriend.

They first suspected something was seriously wrong in March. Her father, Frank, 56, a plumber, said: "She would not admit she was down, but she was not herself."

She went to Doncaster Royal Infirmary complaining of pains in her legs, but was referred to her GP. As her condition worsened, she was forced to give up work and driving. Her parents asked their GP if it was ME, but he ruled it out. They were referred to a consultant neurologist, but, on being told that there was a two-year wait, paid for a private consultation. On July 13, after four days of tests, they learnt the truth.

Mr Roberts said: "I drove home with Sarah and my wife, Shelia, from the hospital in a trance. We couldn't even cry because we didn't want to show Sarah we were upset. She never asked what was wrong with her and we just kept telling her we were waiting for the results of her tests. She was so frightened, we didn't want to upset her any more. We never dreamt it would be CJD because of what happened to Matthew. We didn't think such a rare disease could strike twice."

Near the end she suffered nightmares and hallucinations. Her mother said: "She would start screaming and crying in the night. They were screams of pure horror."

Mr Roberts added: "We're mystified as to what caused our daughter's death. We feel as though she was murdered. Until January she was a happy, fit, normal fun-loving girl and didn't eat junk food."

Her parents said that she rarely ate beef, preferring chicken. They have since contacted Matthew Parker's father, John Middleton. He said: "It's not just a coincidence, it's a strong link. The experts are trying to find a connection, but it's like trying to find a needle in a haystack."

He described his son, a 6ft 8in trainee chef, as "a hearty beef eater" who often ate four burgers at a session and drank "pints" of milk a day.

Michael Breen, a parish and district councillor, said: "Nobody wants to talk about this in the open in the village. It's as touchy a subject as Aids, but people are worried."

Dr John Radford, Doncaster Health Authority's director of public health, said: "We are treating this seriously, but people should remember that the exposure is likely to have occurred 10 to 15 years ago."

An Orkney-born labourer who died in September was a victim of vCJD, it was confirmed yesterday after a post-mortem examination this week. David Antonio, 28, died at his parents' home in the Highlands after a nine-month illness. Yesterday his sister, Brenda Steel, 37, criticised the Government for failing to offer any support. "It is a horrific thing for someone to have to die from. People just do not know who to turn to," she said from her home in Alness, Easter Ross.


31 Oct 00 - CJD - Watchdog seeks stricter controls on animal feed

Staff and agencies

Guardian ... Tuesday 31 October 2000


The government's food watchdog has today called for a ban on meat and bone meal in animal feed as part of a series of measures to prevent a repeat of the BSE crisis.

It would mean extending the current ban on feeding recycled remains to cattle, sheep and goats to all other animals, including poultry and fish.

Blood, poultry offal meat, feather meal and tallow are still legally permitted by-products which can be used to feed farm animals.

A report from the food standards agency (FSA) says that "intra-species recycling" - a euphemism for cannibalism - could theoretically amplify a new spongiform encephalopathy disease such as BSE.

It also advises ministers to reject calls from farmers to allow meat and bone meal to be fed to poultry. The report suggests that recycling animal blood, gelatine and tallow in animal feed be stopped.

The recommendations are contained in a draft review of the current BSE controls.

"The evidence is that the current UK controls, which are based on the precautionary approach, are working. But, because of so much uncertainty, the review suggests that current controls be retained and in some areas tightened," said FSA chairman Sir John Krebs.

Supermarket firm Co-op called for a Europe-wide ban on the feeding of animal waste to farm animals claiming that consumers find the practice "abhorrent".

"This type of feeding practice is tantamount to cannibalism and must be stamped out if governments want to eliminate potential safety risks and restore consumer confidence in meat," said a spokeswoman.

At the height of the BSE crisis, the last government banned the feeding of mammalian meat and bone meal to cattle but stopped short of outlawing all animal by-products.


31 Oct 00 - CJD - Food watchdog calls for ban on 'animal cannibalism"

By Elisabeth Duke

Independent ... Tuesday 31 October 2000


The Food Standards Agency, Britain's food health watchdog, has thrown its weight behind a complete ban on animal feeding practices which feed animal products back to animals.

It has called for the move as one of a number of safety measures recommended to prevent a repeat of the BSE disaster and would mean extending the current ban on feeding recycled remains of cattle, sheep and goats to all other animals including poultry and fish.

The FSA has also advised ministers to reject calls from farmers to allow meat and bone meal to be fed to poultry. All recycling of animal blood, gelatine and tallow in animal feed should also be stopped, the agency said.

The recommendations are contained in a draft review of the current BSE controls ordered by the Government from the FSA, the new food health watchdog.

FSA chairman Sir John Krebs said: "The evidence is that the current UK controls, which are based on the precautionary approach, are working. But, because of so much uncertainty, the review suggests that current controls be retained and in some areas tightened.

"The review is still subject to further consultation and discussion by the FSA board. Even after the review is concluded, the Food Standards Agency will continue to reassess the situation to ensure the public is afforded the highest levels of protection."

The report says "intra-species recycling" - a euphemism for cannibalism - could theoretically amplify a new spongiform encephalopathy disease such as BSE in a species.

The report also makes recommendations on new research. It says as a matter of "great urgency" there is a need to develop a rapid screening method to test sheep for BSE.

Sheep have suffered from a similar disease, scrapie, for about 200 years but there is no evidence that this is harmful to humans.

However, BSE is thought to be derived from scrapie, and scientists have shown that under laboratory conditions it can infect sheep as well as cattle .

New research should also be conducted to assess the possibility that cattle and sheep may carry BSE without showing symptoms, said the FSA.

Scientists recently demonstrated the theoretical possibility that a sub-clinical form of BSE exists .

The report also calls for a study to establish once and for all whether BSE can be transmitted in milk, and tests on sheep intestines used for sausage casings .

The report said that for the time being the rule which compelled farmers to slaughter and destroy all cattle over 30 months old should remain in force, but envisaged its eventual abolition if certain conditions were met.

A decision to announce the year of birth of animals that need not enter the over-30 month scheme should be taken no earlier than January 2002, said the report.

The FSA pointed out that the problems of cross contamination of animal feed were likely to occur in other countries . It urged the EU Commission to take action, especially in countries with a known risk of BSE.

The Co-op supermarket has also called for a Europe-wide ban on the feeding of animal waste to farm animals. Bosses claim consumers find the practice "abhorrent" and are calling for a change in the law.

At the height of the BSE crisis, the last government banned the feeding of mammalian meat and bone meal (MBM) to cattle but stopped short of outlawing all animal by-products.

But while most British farmers continue to support a voluntary ban on such products going into animal feed, producers elsewhere in Europe routinely use tallow, blood and feather meal to feed their animals , with much of the resulting meat ending up on British plates .

Co-op spokeswoman Wendy Wrigley said: "This type of feeding practice is tantamount to cannibalism and must be stamped out if governments want to eliminate potential safety risks and restore consumer confidence in meat.

"In the wake of the BSE crisis, which we now know can be largely blamed on animal waste being fed back to farm animals, we and our customers are dismayed at the way the regulations still pick and choose between acceptable and unacceptable feed ingredients like blood and bone meal.

"The obvious solution for animal waste is to ban the lot whilst ensuring the new rules apply evenly throughout the EU."


31 Oct 00 - CJD - 'mad cow' victims were neighbours

By Thomas Harding

Telegraph ... Tuesday 31 October 2000


An investigation has been launched after it emerged that two people who lived on the same street may have both died from vCJD.

Matthew Parker , 19, of Armthorpe, Doncaster, south Yorkshire, died from the human form of "mad cow" disease three years ago. Tests have begun to determine whether his neighbour, Sarah Roberts , 28, who died last month, fell victim to the same illness.

Experts from the CJD surveillance unit in Edinburgh have travelled to Doncaster to explore links between the two victims. Mr Parker's father, John Middleton, said: "This does not look like a coincidence. There has to be a connection." Mr Parker lived at 21, Wickett Hern Road, Armthorpe. Miss Roberts, an accountant, lived at 43.

Dr John Radford, of Doncaster Health Authority, said an investigation was underway. He said:."They may have used the same butcher, they lived in the same street, but to blame particular food outlets is wrong at this time. We need to understand the disease and understand the food histories of these people as much as we can."

A spokesman for Trent Region of the National Health Service confirmed the cause of Mr Parker's death as vCJD, but said investigations into the second case were continuing.


31 Oct 00 - CJD - BSE fears for UK lamb

Staff Reporter

Times ... Tuesday 31 October 2000


A complete ban on the consumption of UK lamb could be imposed if sheep were found to be suffering from mad cow diseases, the Government said today.

The drastic move is one contingency plan being considered by the Ministry of Agriculture, Fisheries and Food (Maff) in the event of a confirmed outbreak of BSE in the national flock.

Another possibility is that only meat from sheep genetically immune to diseases such as BSE would be allowed into butchers and supermarkets.

Even under this plan, however, thousands if not millions of sheep would probably have to be slaughtered and destroyed .

Unlike its effect in cattle, BSE in sheep does not confine itself to specific organs and tissues , such as the brain and spinal cord. As a result, sheep with BSE would have to be completely destroyed and no part of their carcases allowed into the human food chain.

The Maff contingency plans emerged as a Food Standards Agency working party recommended urgent action to deal with the possibility of BSE infecting sheep.

A report from the FSA team, headed by the agency's chairman, Sir John Krebs, warned that BSE in sheep could be "masked" by a similar disease, scrapie. Scrapie has affected sheep for more than 200 years but has never proved harmful to people. bovine spongiform encephalopathy (BSE) on the other hand is believed to have caused variant CJD in humans, which has claimed more than 80 lives since it emerged in 1996.

However, scrapie and BSE are so similar that some experts fear they could be confused. Sheep showing symptoms of scrapie may really have BSE.

A Maff spokeswoman said today: "Our officials have been charged with producing a first draft of a contingency plan by December, and they hope to present it to ministers then. "Although it is too early to talk about details, they are looking at two possible scenarios should BSE be confirmed in the sheep flock, which will rely on advice from the FSA.

"The first is that the FSA takes the view that it is unsafe to eat UK sheep meat so there has to be a total ban. The second scenario is that we look at the possibility that sheep with a particular genotype are safe to eat."

However, the spokesman stressed that although both possibilities were being considered, no final decisions had been taken yet.

A spokesman for the National Farmers Union said farmers would have to face up to the "terrifying " prospect of entire flocks being destroyed if BSE was discovered in sheep".

"The NFU would be letting sheep farmers down, and farmers would be letting themselves down, if they did not contemplate this worst-case outcome," he said.

Since 1998, confirmed cases of sheep with scrapie have been compulsorily slaughtered. But although only a few hundred cases are reported each year, recent research has suggested that between 4,000 and 10,000 of Britain's 40 million sheep annually become ill with scrapie.

Under laboratory conditions, sheep have been artificially infected with BSE. So far the disease has not been identified in farm sheep, but only 200 animals have been tested. The current test for BSE, which involves injecting suspect tissue into mice and seeing if they become ill, takes up to two years and is prohibitively expensive at more than £20,000 per sheep.

At an FSA news briefing in London today, Sir John said whether or not sheep were contracting BSE was an unanswered question. "We simply do not know," he said. "Of the 40 million sheep in Britain, some 4,000 do succumb annually to another disease, scrapie, which appears not to have any human health risk.

"It is possible, however, that some of these animals are actually suffering from BSE."

He said a new method of rapid screening using biochemical markers was needed. This could be used either to test all sheep diagnosed with scrapie, or for the random testing of all slaughtered sheep.

The Ministry of Agriculture has launched a plan to breed scrapie and any related diseases such as BSE out of sheep using genetically resistant rams . But the FSA said this would take ten years or more to complete and more urgent action was required.

The report made it clear that if BSE was shown to be in the national flock, only sheep clearly demonstrated to be free of BSE and kept separate from others that were not could be allowed to be used for human consumption.

Sir John acknowledged that under these circumstances there would have to be a mass slaughter programme.

The NFU stressed the reality that no trace of naturally occurring BSE had ever been found in sheep. But a spokesman agreed that "draconian " measures would have to be taken if the national flock turned out to be infected. He said: "Of course it's a terrifying scenario, but a much more terrifying scenario is not to do something and unleash a new wave of disease on humans."

The FSA report also called for a complete ban on farm feeding practices that turn animals into cannibals.

In reality, this would mean extending the current ban on feeding recycled meat and bone meal to livestock so that it included blood, gelatin and tallow .

The report said "intra-species recycling" - a euphemism for cannibalism - could theoretically amplify a new spongiform encephalopathy disease such as BSE in a species.

On Thursday the draft recommendations will be considered by the FSA's "stakeholders" - co-opted representatives from industry and consumer organisations - at a public meeting.


30 Oct 00 - CJD - Reinjecting trust

Leader

Guardian ... Monday 30 October 2000


Even since publication of the BSE inquiry report just four days ago, events have moved on. The youngest victim of vCJD, the human form of BSE, 14-year-old Zoe Jeffries , died on Saturday. The oldest, a 74-year-old unnamed man, was confirmed as a vCJD victim on Friday. Until now, the age span of victims has been between 15 and 54. As our health correspondent, James Meikle, noted on Saturday, the death of the old man would seem to support the conclusion of Lord Phillips, chairman of the inquiry, that the BSE infection of the national herd began in the 1970s, not the 1980s. If so, do scientists have to think again about the potential risk to human health? Just how exposed were people who ate infected meat in the 1970s, long before any control measures to combat BSE, were introduced? Does the death of Zoe Jeffries, who became a victim aged 12, mean contaminated meat was getting into the human food chain, despite the controls that were applied in 1989?

Reassessment will follow both deaths but particularly the older victim's. Even before Zoe's death, there were worrying signs that BSE was entering the human food chain after the 1989 controls were put in place. The Phillips report pointed to three dangers: the delay in banning the mechanically recovered meat process until 1995; the failure to enforce new safety procedures in slaughterhouses until 1995; and cross contamination of feed, both at the factory where beef offal was allowed in pig and poultry feeds, and at the farm.

Other reassessments are being made on the use of beef sources in the 1970s for some vaccines and cosmetics.

What is Joe Public to make of all these reviews? Here is an opportunity for the health and agriculture secretaries, plus even more importantly their officials, to demonstrate that a new era has begun. Whatever happens to the freedom of information bill in parliament, let them signal that the secrecy and false messages with which Whitehall attempted to sedate the British public for most of this epidemic, are over. From now on, let the public be treated both openly and honestly. As Phillips noted, only in this way can public confidence begin to be restored in government warnings. If ministers, or chief medical officers, don't know, let them say so. Let paragraph 1301 be reproduced and placed above Whitehall desks: "We believe that food scares and vaccine scares thrive on a belief that the government is withholding information. If doubts are openly expressed and publicly explored, the public are capable of responding rationally."

There are three fronts on which ministers should move quickly. First on risk assessments. These range from a few hundred projected deaths from vCJD to 136,000 . The specialists should not be blamed for such a wide variation, there are so many unknowns. Some earlier estimates, when links between BSE and vCJD were first established, talked of millions. What is needed is an update , in light of Phillips, of the latest estimate on risk. By all means put them in perspective, so the public are better able to gauge them. Second, contingency planning: Phillips found it was far from adequate. Some are now proceeding (see today's story on new blood procedures in surgery). But what plans have health and social services drawn up in case vCJD deaths reach the projected death a day? They have averaged 10 a year in the last five, but already reached 25 this year. Third, reassessments by scientists: precisely what is being reassessed, by whom and when will they be ready? Ministers must guarantee publication, no matter how inconvenient or embarrassing the results.


30 Oct 00 - CJD - Kal's story

Staff Reporter

Guardian ... Monday 30 October 2000


In December 1999, Karen Beavon, also known as Kal, complained of a bad back. Soon she became confused and disoriented, but it was six months before she was diagnosed with nvCJD. Her husband Nigel kept this diary of her last days

December 1999

Karen complains of a bad back. We see a doctor and begin consultations with a chiropractor. Karen constantly feels down and we talk of putting off another IVF attempt until she feels better. Kal begins taking antidepressants but didn't want to take them over the Christmas period because of the side effects.

January 2000

Karen continues to complain of her bad back and is very distressed by it. She works for only three days this month. She constantly phones me at work because she feels so down, alone and anxious. I get a phone call to say she has collapsed, rush home and call out the doctor; he gets her admitted to the Princess of Wales hospital at Bridgend. They carry out various tests on her to no avail and she is discharged but must return for further tests. She has a CAT scan whilst in hospital but nothing is found.

We arrange for Karen to see a counsellor, as she continues to feel down and that everyone is against her. The talks help at first but then the panic attacks begin to take over.

February

Karen's depression continues. We are constantly visiting the doctors and Karen talks to her counsellor. Unfortunately there is no improvement, Kal is taking antidepressants but they don't suit her and she suffers from side effects. The doctor changes the medication and tries to find a drug that suits her.

The panic attacks and anxiety get worse and life between us begins to get fractious. Kal continues with her visits to try to ease her back pain.

March

The confusion starts to become really bad. Kal is up and down to the loo all night and gets lost returning to the bedroom, and it's only next door. She tries to get into bed either via the wardrobe or by trying to climb through the wall. Life is very stressful and Karen's mum moves in with us to help me look after her.

I begin to sleep in the spare room as Kal keeps me up all night and I have to get up at 6.30am to get ready for work. We find that the osteopath is not helping Kal's back; we seek help for Kal from someone who specialises in Chinese medicine, at the Centre for Natural Medicine in Cardiff. He finds it difficult to treat her, as he has to fight with the effects of the anti-depressants that Kal is taking.

April

The confusion is at its worst. Karen has started to lose her sense of balance and cannot walk unaided. The antidepressants aren't working and the doctor prescribes another one: it must be the fourth or fifth we have tried. Reading the literature that is supplied with the dopethin, one of the side effects is confusion. I ask the doctor about this and I am reassured that this will wear off as the body adjusts itself to the medication. It doesn't and Kal is readmitted to the psychiatric unit at the Princess of Wales Hospital just before Easter. Karen's mum and I are asking for help trying to cope with Kal but to no avail; we so desperately need help and no one is listening.

Kal spends four days in hospital and is assessed in a 60-minute interview with the psychiatric team. I am not impressed as they (I'm informed) did not consult the nursing staff about Kal. She is discharged and the team inform me that Kal's problem is behavioural and not psychiatric. I ask for help yet again but no one listens to me. Kal is showing signs of loss of balance and cannot walk unaided and I have to help her walk from the interview room.

A social worker visits Kal whilst she is in hospital and talks to her mum. She informs her that she was really disappointed with Kal as she was not making any sense when she interviewed. I'm livid and cannot believe that the social worker could be so insensitive to Kal and our needs.

We have no further contact from her and are left to cope on our own again. At home I have to remove fuses from electrical appliances and hide all medication from Kal as she is not capable of looking after herself any more. She has left the hairdryer running and placed it on the carpet, switched electric blankets on for no reason and once, when left for five minutes, was found by a neighbour wandering around the village.

May

This is as bad as it gets. Karen is really bad, the confusion is dreadful, the bad back continues and we are all very stressed. We have to feed Karen, shower her and help her in everything she does. She is hypersensitive to touch and finds any form of contact painful. She can hardly walk and we feel that she is aware that there is something seriously wrong with her. We constantly try to reassure her, that we will find out what is wrong and that she will get better.

We are still trying to cope on our own but now we are receiving disability living allowance and sick pay; this helps a bit. Money is starting to become very tight. I'm helping Kal's mum with her travelling expenses, as she is a pensioner. I sold my sports car earlier in the year and that money is keeping our heads above water; we can probably last until Christmas, and then we will have to sell the house. I just hope that nothing happens at work so that I lose my job.

Karen's mum is finding it extremely difficult trying to cope as Kal is just too much for her to handle. I know I find it difficult enough and feel so guilty going off to work and leaving Kal's mum to look after her. She has had a rough time over the past few years. Firstly her husband died unexpectedly, and then she had breast cancer followed by hepatitis. I worry about her being poorly again and the cancer reappearing.

Karen is very ill and the confusion manifests itself in many different ways. She is convinced we have Australians staying with us and keeps looking for them, making them cups of tea and trying to get meals ready for them. It is very distressing seeing her struggle to make several cups of tea, some of which turn out to be cold water, others just have a teabag in, and still others are empty.

Some days she asks me to take her home as she doesn't like being in Australia, and talks about the baby we spent so long trying for. I spend hours on end trying to explain to Kal that we live in a bungalow and do not have an upstairs. I show her the loft to prove we do not have an upstairs and she becomes very upset.

Karen has become very aggressive to both her mum and myself; she has attacked me on several occasions. She hallucinates constantly and talks to her father who, as far as she is concerned, is here in the house with us.

When I take her out in the car she gets very anxious and tries several times to climb out when travelling at 70mph. She says to me that she knows that there is something seriously wrong and that she is dying. I tell her that we will make her well again soon.

I don't know what to do. I find myself quietly crying in bed, scared I will wake Kal's mum, worrying her unnecessarily. The final straw comes one Sunday morning after a particularly difficult weekend; Kal is convinced that I'm trying to murder her and desperately wants to know when and how. She is not concerned about dying but wants to know how I'm going to do it.

Our GP calls on Karen and arranges for her to go back into the psychiatric unit at Bridgend. When we arrive they are appalled at her deterioration. The staff and patients are really good with Kal and look out for her. We ask for a neurologist to look at Kal and a consultant from the University Hospital in Cardiff sees her. He wants her to have a MRI scan but as Kal is claustrophobic it's going to be difficult. Kal's bladder is not working properly and she has a catheter inserted to relieve the distress. We have still had no contact from social services.

We are told to expect a visit from the mobile scanner. We wait for two weeks, and they finally bring the mobile scanner down to her and try the scan with her under sedation but she becomes agitated and they have to abandon the attempt. The next step is to transfer Kal to the Heath Hospital and scan her whilst she is under general anaesthetic but we have to wait for a bed and a slot in the MRI scanners' schedule. It turns into another two-week wait.

When the scan is finally done it becomes obvious to the medical staff that Kal has a serious problem: the doctors inform me of their suspicions. I'm devastated but given a little bit of hope: they say they may be wrong.

A specialist team is called from Edinburgh and they visit a week later. In the meantime I've told them that I do not want Kal's mum to know of their fears as I do not want her worrying unnecessarily. The team from Edinburgh arrives: they are 99% certain that Kal is suffering from new-variant Creutzfeldt-Jakob disease and that we are in the final stages. The only way of being 100% certain is by brain biopsy or post mortem, but we don't want Kal to have a biopsy as she is under enough stress as it is. Kal's elder sister is with us and she helps me look after her mum.

The next day I travel to the Midlands to see my parents to give them the awful news, then I drive back down and go straight to the hospital to see Kal. She is lying on her bed, sees me and bursts into tears. In a lucid moment she asks me how am I coping. The next day, in another lucid moment, she tells me that she loves me too. It is the last thing she ever says to me; she begins to deteriorate rapidly.

She becomes blind, deaf and incontinent; she loses the ability to speak; all we can do now is to make her as comfortable as possible until the end. It comes all too quickly.

- Karen died on July 15. She was 37 .


30 Oct 00 - CJD - Power obfuscates

Hywel Williams

Guardian ... Monday 30 October 2000


Forget the platitudes about 'Whitehall secrecy'. The BSE crisis revealed ancient political truths

Who and whom are still the only political words that matter. Who does what to whom? Who has authority? Who are the victims and who the beneficiaries? The questions cut across the ideologies - the conventional credal divisions of left and right. They also lead us to a few universal truths of government.

The victims are a clear enough category in the BSE tragedy - and they are now joined by 14-year-old Zoe Jeffries who died of variant CJD on Saturday. Lord Phillips's cautiously worded report has irritated the commentators and deprived us of a few convenient scapegoats to name and shame before moving on to the next subject. But the response to the report has been as revealing - and even more platitudinous - as the report itself.

The public "right to know" has been invoked and our hoary old explanatory friend, the "Whitehall culture of secrecy" , has made a traditional appearance. But in the process a few inconvenient truths go missing.

When government fails it is a combination of the personal and the systemic, the temperamental and the structural. And nowhere more so than here.

Government is naturally gnostic. People become ministers because they want to know secrets. The idea that government is full of secrets dies hard - even in age of instant information and increasing access. Most government is dull. But the insecure Ministerial Ego Erectus needs the fantasy of a private access to the state secret to compensate for its amphibian condition. Behind the rise of that ego lies a slimy trail of conventional crawling and compulsive creeping.

Sometimes a genuine secret does arrive. But instead of gratifying the ego it isolates and disables. Which is what happened in the case of successive agriculture ministers. The dilemma which confronted them from John Macgregor to Nick Brown was a genuine one - and its disabling power owes more to public attitudes than to ministerial turpitude.

Whatever its origins as a disease, BSE and CJD were hardly the result of secrecy. Uniquely among European governments the British variety is subject to a remorseless press scrutiny. The question of a link between the animal food chain and the human disease - if speculative to begin with and then officially denied - was ventilated for years before its confirmation.

Ministers and government scientists had to deal with British public opinion which now claims three rights: the right to know everything, the right to panic and the right to be reassured. When it comes to public health we expect a level of paternalism which reflects the nationalisation of health as a subject of concern. We have also become prone to waves of periodic hysteria from the death of Diana to the march of fuel protesters.

Who here had the genuine authority to warn? Politicians are "good all-rounders" not specialists and the idea of a "political science" is always a fantasy. So, ministers relied on scientists and science in our culture has an unique authority. It is supposed to be objective and universal in its truths - rather than the fallible, human affair it is in reality. Today's exalted truth of the laboratory can become tomorrow's exploded hypothesis.

Scientists are just like any other group of professionals - likely to be swayed by their own hierarchies of loyalty to research grants, companies, departments and colleagues. In the case of BSE ministers relied on one particular group of scientists - those sponsored by the government.

But the problem with the civil service is not that it is forked-tongued but that it speaks with a Pentecostal profusion of tongues. At the bottom of each ministerial submission will be seen a number of possible courses of action - all graded in terms of likely outcomes. The important thing is that the official is covered and can reply retrospectively that each likelihood was assessed. If the course of action chosen was disastrous then at least an alternative was available to the minister.

Fearful of public panic and hearing some Eurosceptic nonsense on Bully Beef Britannia, the line of least resistance was taken. The reality of risk was deemed too hard and adult a message. Hindsight and knowledge has converted that line to the "wrong line to take". It would be easier and simpler if "science spoke" with undiluted authority from the beginning. But it did not and could not.

BSE shows the tensions between one world which is dying away and another which has only half emerged. On the one hand there's the stiff old collegiality, the traditions of ministerial responsibility, the desire to bind everyone in. The self-preservative chums charter dictates that: "It doesn't matter what the line is as long as we're all agreed".

On the outside there's the raw instability of opinion before which all governments retreat to an oligarchic shell. This is especially true of democratic ones subject to the power of a mass franchise which they fear and only pretend to understand.

BSE will recur in other forms as this tension between oligarchy and knowledge becomes more acute in our democracy. After Lord Phillips's irritatingly rational tones we can at least detect the nature of the crisis when its next example arrives.


30 Oct 00 - CJD - Scientists investigate possible CJD cluster

Helen Studd

Guardian ... Monday 30 October 2000


Experts from the CJD surveillance unit in Edinburgh are investigating whether two people in the same street might have died from the human form of BSE.

Matthew Parker , 19, of Armthorpe, Doncaster, in South Yorkshire, died from new variant CJD three years ago. Tests have begun to determine whether his neighbour, Sarah Roberts , 28, who died last month, fell victim to the same illness.

The cluster of probable vCJD deaths has caused scientists to rethink links between the disease and specific areas . They are already investigating six cases in Leicestershire , four of which have been closely associated with the village of Queniborough.

If an autopsy proved Miss Roberts died from the illness this would be the second cluster of deaths to emerge since the disease was identified. Miss Roberts, an accountant, and Mr Parker lived in the same road and attended the same school.

Mr Parker's father, John Middleton, said: "This does not look like a coincidence. There has to be a connection somewhere."

John Radford of Doncaster health authority confirmed that scientists had travelled to Doncaster to investigate links. "They may have used the same butcher _ but to blame particular food outlets is wrong at this time. We need to understand the disease and understand the food histories of these people as much as we can," he said.