Relatives at inquiry recall trauma of deaths by mad cow disease
Relatives tell of UK CJD deaths trauma
CJD families call for care programme
Living agony of the CJD victim relatives
Families tell of BSE shock
Taiwanese eat raw brain from living endangered macaques
EU eases beef on bone restrictions
Blair stalls on food safety agency
Portugal blasts EU Commission ban of beef
BSE officials operated in secrecy, say watchdogs
October 26, 1998 By GERRARD RAVEN, ReutersLONDON - Relatives of Britons who died of the human version of mad cow disease spoke on Monday of the agony of watching their loved ones gradually lose their physical coordination, sanity and dignity. Giving evidence to a government inquiry into bovine spongiform encephalopathy, they recalled lives cut short because, doctors believe, the victims ate contaminated beef.
"He weighed 15 stone. At the time of his death, he was emaciated. He looked like a prisoner of war from Belsen," said Esther Beaney of her partner, Barry Baker, a forester who died in 1996 at the age of 30. Baker is one of 29 Britons who have so far died of a new variant of Creutzfeldt-Jakob disease, believed to be caused by eating beef from animals infected with BSE. Both ailments cause progressive wasting of the brain.
"Our once so clever young man could not find his way from his hospital room to the toilet which was directly opposite," said Frances Hall, whose son Peter died a few days before his 31st birthday.
Anthony Bowen, husband of Michelle, whose third child was born prematurely 22 days before she died in November 1995, told the inquiry he was still worried every day that his children would catch the disease through maternal transmission. "After we had come out of the Chapel of Rest, I was asked by a member of staff if I had touched Michelle," he recalled. "I said yes, I had kissed her goodbye. He made me wash my face and hands before we left the hospital."
Other relatives spoke of the agony of knowing their loved ones, almost all under 35, were ill but finding doctors baffled, first suspecting depression and only gradually realizing that the problem was neurological. New variant CJD is, one of them said, "a frightening, rapidly destructive dementia unlike anything this country has ever seen before." The inquiry that heard the chilling accounts is attempting to find out who was to blame for the BSE epidemic, which wreaked havoc on Britain's cattle industry in the early 1990s.
Later, David Body, the lawyer representing the families at the inquiry, told a news conference he would consider whether they should seek compensation from the government or other parties when the inquiry had produced its report. Body noted there was already a "no-fault compensation scheme" for farmers who had been paid $3.4 billion for loss of earnings and for having cattle slaughtered. "So far, the families have not been included in that," he said.
Former government ministers, eminent doctors and senior civil servants are also giving evidence at the long-running inquiry. None is likely to be able to predict how many more cases of the new variant of CJD will occur in Britain before new controls on the slaughtering of cattle finally stamp it out. Scientists have still to establish how long the disease can lie dormant before it starts to kill.
Brains, Served Fresh and Raw
Wall Street Journal 26 Oct 98 pg 1 by Peter Waldman Binung, Indonesia"...Along the docks of this remote port 1500 miles NE of Jakarta,... one captain of a big tuna trawler orders a dozen young crested black macaques -- an endangered species of primate -- delivered to his boat, alive.
The request is relayed over palm-studded hills to the village of Bingaguminan, on the edge of Tangkoko Nature Reserve. Trappers there trek days in the jungle refuge to bag the rare animals. To take baby macaques alive, mothers are shot. Aboard the trawler, galley hands bind the monkeys' hands and feet. Then, using sharp bamboo sticks, the Taiwanese puncture the babies' soft skulls. As the convulsions ebb, brains are served raw. Prices have tripled for monkey, but foreigners can't get enough," says a dockside chef here who deals in the legally protected macaques."
Disgusting, dangerous, illegal, and grotesquely immoral.
The affected species is Macaca nigra, sometimes called the Celebes or Sulawesi macaque. Indonesia also burned off an entire orangatan subspecies last year to create elite cattle ranches. Sort of like the Vail, Colorado ski run and the lynx only faster and more final. Macaques have played an important role in CJD research.
|For a full list and images what remains of the 234 primates, visit the Primate Gallery; or the Birmingham zoo for a description of their social structure: "Lives in groups of 5-25 individuals usually with an older male as leader. Each group has a well-defined social order where each member has a specific rank. Rank order can change with age or as animals join or leave troop. Males establish hierarchy based on outcome of competitive interaction. Offspring of dominant female tend to inherit high rank. Males take interest in infants; mothers continue to have interest in offspring throughout life. Communication by calls and visual cues; facial expressions well-developed."|
* Stumptailed Macaque Macaca artoides (I. Geoffroy, 1831) Assamese Macaque Macaca assamensis (M'Clelland, 1840) Formosan Rock Macaque Macaca cyclopis (Swinhoe, 1863) * Long-tailed or Crab-eating Macaque Macaca fascicularis (Raffles, 1821) * Japanese Macaque Macaca fuscata (Blyth, 1875) Macaca maura Macaca maura (F. Schinz, 1825) * Rhesus Monkey Macaca mulatta (Zimmerman, 1780) * Pigtailed Macaque Macaca nemestrina (Linnaeus, 1766) Celebes Macaque Macaca nigra (Desmarest, 1822) Macaca ochreata Macaca ochreata (Ogilby, 1841) Bonnet Macaque Macaca radiata (E. Geoffroy, 1812) Lion-tailed Macaque Macaca silenus (Linnaeus, 1758) Toque Macaque Macaca sinica (Linnaeus, 1771) * Barbary Macaque Macaca sylvanus (Linnaeus, 1758) Macaca thibetana Macaca thibetana (Milne-Edwards, 1870) Macaca tonkeana Macaca tonkeana (Meyer, 1899)
Reuters North America Mon, Oct 26, 1998 By Gerrard RavenLONDON - Relatives of Britons who died of the human version of madcow disease spoke on Monday of the agony of watching their loved ones gradually lose their physical coordination, sanity and dignity. Giving evidence to a government inquiry into Bovine Spongiform Encephalopathy (BSE), they recalled lives cut short because, doctors bel
ieve, the victims ate contaminated beef. "He weighed 15 stone. At the time of his death, he was emaciated. He looked like a prisoner of war from Belsen," Esther Beaney, whose partner Barry Baker, a forester, died in 1996 aged 30, told the inquiry. Baker is one of 29 Britons who have so far died of a new variant of Creutzfeldt-Jakob disease (CJD), believed to be caused by eating beef from animals infected with BSE. Both ailments cause progressive wasting of the brain.
"Our once so clever young man could not find his way from his hospital room to the toilet which was directly opposite," said Frances Hall, whose son Peter died a few days before his 31st birthday. Anthony Bowen, husband of Michelle, whose third child was born prematurely 22 days before she died in November 1995, told the inquiry he was still worried every day that his children would catch the disease through maternal transmission.
"After we had come out of the Chapel of Rest, I was asked by a member of staff if I had touched Michelle," he recalled. "I said yes, I had kissed her goodbye. He made me wash my face and hands before we left the hospital."
Other relatives spoke of the agony of knowing their loved ones, almost all under 35, were ill but finding doctors baffled, first suspecting depression and only gradually realising that the problem was neurological. New variant CJD is, one of them said, "a frightening, rapidly destructive dementia unlike anything this country has ever seen before."
The inquiry that heard the chilling accounts is attempting to find out who was to blame for the BSE epidemic, which wreaked havoc on Britain's cattle industry in the early 1990s. Later, David Body, the lawyer representing the families at the inquiry, told a news conference he would consider whether they should seek compensation from the government or other parties when the inquiry had produced its report. Body noted there was already a "no-fault compensation scheme" for farmers who had been paid two billion pounds ($3.4 billion) for loss of earnings and for having cattle slaughtered. "So far, the families have not been included in that," he said.
Former government ministers, eminent doctors and senior civil servants are also giving evidence at the long-running inquiry. None is likely to be able to predict how many more cases of the new variant of CJD will occur in Britain before new controls on the slaughtering of cattle finally stamp it out. Scientists have still to establish how long the disease can lay dormant before it starts to kill.
PA News Mon, Oct 26, 1998 By Eileen Murphy and Alex RichardsonFamilies of victims of the human form of "mad cow disease" today told the public inquiry into BSE of their frantic search for answers as they watched their loved ones' health deteriorate. Fifteen relatives of some of the 29 recorded cases of new variant Creutzfeldt-Jakob Disease (CJD) were today giving evidence before the long running inquiry into BSE, being held in south London. They began by telling the inquiry about how they searched for answers when their relatives first became ill.
Frances Hall, from Durham, talked about her son, Peter, who died on February 8, 1996, nine days before his 21st birthday. Peter, who had been a vegetarian since the age of 15, began to show signs of illness shortly after he began studying for a degree in environmental studies at Sunderland University. Mrs Hall said: "He just appeared apathetic, he lost interest in his appearance, before that he had been a bundle of energy." She had been full of hope for Peter after he left home for the first time to begin his university studies, she said.
"As a mother you always congratulate yourself when you get your children through childhood without any major catastrophes, the future seemed bright." Mrs Hall said her son, who she described as a "home body" used to come home at three-weekly intervals. She said: "We noticed he was coming home more regularly and he was not so keen to go back."
Peter's GP initially diagnosed depression but his condition continued to deteriorate and he was eventually taken into hospital. Mrs Hall said after that his condition rapidly deteriorated. "He couldn't find his way to the toilet, that was within three weeks," she said. "It was obvious this was a serious condition, and that's when I first asked about CJD." She said her son had been a vegetarian for four years before he first showed signs of illness. "We watched a programme about intensive farming on the Saturday evening, and he got up on Sunday and refused to eat Sunday lunch."
Mrs Hall also said she had stopped buying beef five years earlier, when BSE in cattle first began hitting the headlines.
The inquiry also heard from David Churchill, a former fireman from Devizes, Wiltshire, whose son Stephen was Britain's first known victim of new variant CJD, which has been linked to eating BSE infected beef. Asked whether he felt the family had been given enough information about his son's illness, Mr Churchill said: "Being in the unique position of the first father to be affected by this as a family we feel there was a considerable lack of information available. "When we go back to the time of the diagnosis ... we were never given a specific diagnosis. "The only clue was when we saw our son's brain biopsy operating notes which said: `CJD?'."
Mr Churchill said the lack of information was very difficult for the family to cope with. "We found that very difficult and distressing. People need a label, they do need a diagnosis, both for the family and for the carers to be able to act on it." Stephen's sister, Dr Helen Churchill, who had been studying dentistry when her brother first fell ill, told the inquiry she had spent many evenings in her college medical library researching neurological disorders. She said the closest to the symptoms which Stephen was showing was CJD, but the textbook cases had all involved people in their 60s, 70s or 80s, and her brother was only 18 at the time.
Also giving evidence was Gerard Callaghan whose brother Maurice died from new variant CJD. Mr Callaghan said that the first time he heard CJD mentioned was from his sister, a nurse. He said the family spent a lot of time carrying out their own research as they tried to find out what was causing Maurice's rapid deterioration. He said: "As a family we were quite capable of researching and reading the literature and myself and my sister did that. I felt compelled to do that, we knew Maurice was suffering from a degenerative neurological illness but they didn't know what sort of illness it was." Mr Callaghan said his brother's symptoms seemed to fit CJD although at the time that was thought to only affect older people and Maurice was 30 at the time.
Mr Callaghan said: "CJD was being discussed from within the family. We pushed and pushed for some sort of diagnosis. "We didn't accept the situation where we were just kept hanging on and so we continued to push for a diagnosis. "I think Maurice's GP would admit he was out of his depth, he didn't really know what was going on."
Anthony Bowen said his wife Michelle, who died from new variant CJD, began showing signs of illness in 1993, but was initially diagnosed as suffering from depression. He said: "The first signs were when she started not functioning around the house, and being very depressed."
Further witnesses described how they saw the early symptoms of new variant CJD in relatives. Beryl Rimmer, the grandmother of 20-year-old victim Vicky Rimmer, who died in November last year, described how she watched the youngster deteriorate before her eyes. Mrs Rimmer, who brought up her granddaughter from birth, told the inquiry that she first noticed a change in Vicky's behaviour in 1993, when the youngster was still attending school, aged just 15.
She said: "Vicky was one of those girls who was so full of life and energy. But then she changed dramatically. She was very moody but I just thought it was teenage rebellion. "She was losing weight and falling down. She would walk into the house and leave the door wide open. She was also suffering from loss of memory." In a statement to the inquiry, Mrs Rimmer said that Vicky was initially diagnosed as suffering from a nervous disorder but this was then changed a number of times. She said: "I was told that Vicky was going to die but I didn't know what was wrong with her." By September 1993 her granddaughter had gone blind and slipped into a coma. She remained in the coma for four and a half years until her death at the end of 1997.
Mrs Rimmer added that after her granddaughter was diagnosed as suffering from new variant CJD one doctor told her to keep quiet about it. She said: "I couldn't believe what I was hearing. His reply was: `Think of the economy, think of the EEC'. "My reply was: `For God's sake this is a child's life.'
"I think the way I was treated was unbelievable in the extreme. I had to fight for the truth all the way through Vicky's illness. I am angry and bitter that Vicky lost her life because of what I believe is man's greed in feeding cattle with feed that was contaminated with BSE.
John Williams, the father of 29-year-old new variant CJD victim Alison, described how his active and sensitive child became withdrawn and distrustful before succumbing to the degenerative brain disease. Mr Williams, from Caernarfon, said he noticed a change in Alison in 1987. "On many occasions Alison retired to her bedroom and sat there for hours by herself. It appeared she completely lost her confidence and lost interest in life. "She showed a terrible distrust of people, even people who we had known for years." After her mother's death Alison suffered a minor nervous breakdown and was diagnosed as suffering from acute depression.
Mr Williams said his formerly placid daughter began having temper tantrums, complaining of pain in her limbs and suffering memory loss. Her condition deteriorated and in 1995 she was admitted to a local hospital where she was treated for suspected CJD. Her father told the inquiry that from February 12, 1996, his daughter was blind and in a coma until she died, just five days later.
Christopher Pearson told the inquiry that his wife Anna was originally thought to have a thyroid problem and he was told by doctors that when her behaviour began to deteriorate that it could be the result of the side effects of the drugs that she was taking. Mr Pearson, from Canterbury, Kent, said: "I was thinking `they will get it right, they will give her the right drugs and she will be back to normal'." Mrs Pearson had been taken from the Kent and Canterbury Hospital to St Thomas' in London.
Mr Pearson said: "It all came crashing down when she was transferred from St Thomas' to Queens Square and was taken to intensive care and the doctor said it is not looking good." Mr Pearson said that doctors then asked if they could carry out a brain biopsy on his wife. He said: "They got the results back and told me `unfortunately it is CJD, there is nothing we can do.' I knew what the implications were. Doctors said `you do realise it is terminal. There is nothing we can do.'"
Mrs Pearson's father Clifford Grice told the inquiry how he and his wife had been told of their daughter's illness. Mr Grice said: "We were called in to see one of the doctors and he made no bones about it. He told us it was CJD. I do not need to tell you how shattered we were. "I think that although we had been hearing something about it for a year or two, we had not grasped the full enormity of it. "I asked if there was anything that we could do, was there anywhere that we could go. Could we get better treatment in Switzerland or the United States, for instance? "I think that shows how little we knew."
The father of nvCJD victim Alison Williams told how medical experts refused to accept that his daughter was dying from the human form of BSE. Engineer Mr Williams said that as his daughter's health deteriorated she was sent to a neurologist. He said the consultant told him that he believed Alison was suffering from Huntington's Disease but was perplexed that it had affected someone so young. Just a few months later other medical staff would tell him they were 90% sure that Alison was suffering from nvCJD.
"My GP turned round and said that it was a tragedy and Alison would only have a life expectancy of three to 12 months and even that would be horrific. "Alison was at home and we had lots of problems with her. She knew me and could smile but she had become incontinent and would walk downstairs partially dressed or totally in the nude. We would try to feed her and she would attempt to bite you."
In the last few weeks of her life Alison was taken to her GP who told her she would never recover. Her father told the inquiry he believed his daughter had understood the tragic warning. Alison was then moved to a unit for young people suffering from terminal illness where she did in February 1996.
But the inquiry heard that even after her death the neurologist who had wrongly diagnosed Alison's illness refused to admit his mistake. Mr Williams said: "Before her death the neurologist turned round and said it was not CJD. He only accepted Alison had died of CJD three weeks after the post-mortem."
Sun, Oct 25, 1998 By Eileen Murphy, Consumer Affairs Correspondent, PA NewsThe public inquiry into the BSE outbreak will today hear from the families of those who have died from the human form of "mad cow" disease call for improved care for victims. The hearings, which began in March, will hear harrowing details from families who watched their loved ones die from the effects of the degenerative brain disease linked to infected meat.
Fifteen relatives of some of the 29 recorded cases of new variant Creutzfeldt Jakob Disease will recount how family members lost their memory, lashed out at their own children and suffered black depressions as the incurable disease took hold. The families want a national care programme to be introduced for victims to ensure that they receive proper care as the illness progresses.
Dorothy Churchill, the mother of Britain's first and youngest victim of the disease, 19-year-old Stephen, spoke of her hopes for the inquiry. She said: "In a strange way we have always considered ourselves fortunate to have been at the beginning of this tragic outbreak. "In our opinion we didn't feel that the medical profession handled it very well. We felt so isolated and after Stephen's death we were definite that we didn't want other families to feel the same."
She and husband David set up the Human BSE Support Group to offer advice and information to other victims' families and began a campaign for the public inquiry to be launched. Dorothy continued: "This inquiry is the culmination of so much work. We want the truth. We don't want a cover-up or to find a scapegoat. This will be a big day for all the families.
"What we want now is a care programme put in place for future victims. This is a fast-moving disease and plans should be in place for people's care. "An example of that is our case where our son's wheelchair didn't actually arrive until three days after he died."
Sun, Oct 25, 1998 By PA News ReportersThe public inquiry into the BSE outbreak will today hear from the families of those who have died from the human form of "mad cow" disease call for improved care for victims.
:: BSE -- Bovine spongiform encephalopathy -- was first diagnosed in November 1986. Since BSE emerged, scientists and consumers have been haunted by the thought that it could be transmitted to humans.
:: Described as the human form of BSE, Creutzfeldt-Jakob Disease is also a poorly understood condition that attacks the brain, leaving it full of holes like a bath sponge.
:: Victims display symptoms of dementia, rapidly declining to a state where they cannot walk, talk or look after themselves, as their brain degenerates into a sponge-like state.
:: There is no cure and death normally occurs about six months after the onset of the disease.
:: Scientists think CJD is transmitted via an infectious protein called a prion, but the precise mechanism behind the disease is unknown.
:: Some victims contracted the disease by being treated with infected extracts from human pituitary glands to boost growth or aid fertility.
:: CJD can lie dormant for 30 years before symptoms show, but human victims cannot infect one another, so sufferers are thought to pose no risk to their carers.
:: The discovery of a new strain of CJD which seemingly attacked much younger victims alerted scientists to the possibility of a link with eating meat infected with BSE.
:: After years of Government assurances that there was "no conceivable risk" in eating beef, Stephen Dorrell, the then Secretary of State for Health, told the House of Commons there was a possible link between BSE and CJD in March 1996.
:: Even then the Government had not drawn up plans to protect the public if the link was prove, former Chief Veterinary Officer Keith Meldrum told the inquiry last week.
:: So far 29 people have died form the new variant. All had unusual symptoms of depression and anxiety and had suffered from the disease at least a year before dying.
:: There is still no consensus on the scale of the CJD threat. Some have warned of an epidemic on the scale of Aids and HIV, with up to 500,000 new victims early in the next century. Others suggest the number of cases will remain very small.
Tue, Oct 27, 1998 By Eileen Murphy, Consumer Affairs Correspondent, PA NewsFamilies descended on a small conference room in south London this week to bear witness to the devastating personal price they have paid in the BSE crisis. Gerard Callaghan, who had paid a poignant eulogy to his dead brother Maurice in his statement to the inquiry, spoke only of his family's quest for answers and told the inquiry team that there was little anger among those left behind. But they also spoke of the ravages that new variant Creutzfeldt Jakob Disease had wreaked on their lives.
Esther Beaney, whose long-term partner Barrie Baker died of the disease - linked to eating BSE-infected meat - recounted how she watched him degenerate into a snarling, aggressive beast who frightened his own children with violent mood swings and bizarre behaviour before his body succumbed to the illness. After one day's evidence she could take no more and was led away in tears from the round table where the witnesses sat.
Also missing on the second day was Anthony Bowen whose wife Michelle began showing advanced symptoms of the disease while pregnant with their second daughter. He also could not face the prospect of going into more detail about the way that the disease had attacked his wife's mind and body before her death. But in his statement a glimpse of the painful legacy of her death is clear to see. Describing Michelle as a "confident, outgoing and intelligent young mother" he recalled how the butcher's shop assistant began acting strangely two years before she died. He detailed the progression of the illness which left a heavily-pregnant Michelle scraping the skin from her shins and feet as she suffered delusions.
Mr Bowen knew then that she was dying and allowed doctors to deliver his premature baby son but, as other witnesses testified, the nightmare did not end with his wife's death in 1995. He said: "I live with the prospect that my son may succumb to new variant CJD by virtue of maternal transmission. This is another aspect of the Government fiasco about which nobody is talking or advising on. I could still lose my three children to nvCJD. I need something to be done now. I need some answers now."
Many of the deceased represented at the inquiry were aged 30 and under. When such young patients fell victim to a degenerative brain disorder which left them incontinent, wheelchair-bound and even in a coma, there was nowhere for them to go and the medical and caring professions had no idea how to cope. But most criticism was reserved for the Government's handling of the BSE crisis. As Gerard Callaghan explained why he would not eat beef, despite assurances that it was now safe, he said: "I just don't trust them. These are the same people that said it was safe when my brother was dying."
After an emotional two days the families left London with assurances that their views would be taken on board. But for many there are still massive hurdles to cross. For the Churchill's an inquest into son Stephen's death. For Anthony Bowen the fight to have CJD recorded on his wife's death certificate and for all the families the prospect of bringing legal action against the Government for their loss.
Tue, Oct 27, 1998 By Eileen Murphy and Alex RichardsonRelatives of the victims of the human form of mad cow disease were today continuing to tell their harrowing stories to the public inquiry investigating the BSE outbreak. Fifteen relatives of people who died from new variant CJD - which has been linked to eating BSE infected meat - are giving evidence to the long running inquiry at a government office block in South London.
Today Beryl Rimmer, from North Wales, told the inquiry how her granddaughter Victoria Rimmer began to feel ill in the spring of 1993. Mrs Rimmer said Victoria's illness began with periods of apathy and tiredness and as she began to deteriorate rapidly she also noticed rapid weight loss. Victoria was first diagnosed as suffering from Huntingtons disease, and later doctors thought that a measles virus had attacked her brain. In September 1993 doctors at the Liverpool hospital where Victoria was being treated called in specialists from the National CJD Surveillance Unit in Edinburgh and Mrs Rimmer was told her granddaughter could be suffering from spongiform encephalopathy.
Mrs Rimmer said the words had meant nothing to her and she had asked the doctor to write the name of the disease down for her. She told the inquiry: "I drove home to Wales and telephoned my GP. "He said 'What have they diagnosed?' I couldn't say it so I spelled it out to him. "There was a deathly silence and I said, 'Haven't you heard of it?' and he snapped back 'Of course I've heard of it, it's mad cow disease'."
A few days later Mrs Rimmer returned to the hospital in Liverpool to meet a team of doctors including specialists from the Edinburgh unit. She was told doctors were 98% certain her granddaughter was suffering from new variant CJD. At the end of the meeting Mrs Rimmer claimed the consultant said to her: 'I think you have got more intelligence than to go to the press'. "I said 'What do you mean?', he said 'Think of the economy, think of the EEC'."
In 1996 Victoria underwent a spinal fluid test and Mrs Rimmer was told she was not suffering from CJD after all. But six days after she died, on November 21, 1997, aged 20, the CJD unit telephoned Mrs Rimmer and told her Victoria had died from CJD.
Yuksel Hassan, from South London, told the inquiry how his daughter Gulcan, who he described as "the perfect child" had started to show signs of illness in March 1994 when she was 16-years-old. Gulcan's condition went downhill rapidly and by the end of the year she found it difficult to walk by herself. Mr Hassan said: "She was in a wheelchair, she had slowed down more and was unable to speak now. "Her pain was getting worse and she was crying every five minutes."
Mr Hassan said his daughter was diagnosed as suffering from CJD after a brain biopsy in the summer of 1995. He said: "One day my wife and I were called to go to the hospital and one of the doctors told us the news. "They told us 'It's mad cow disease', we had never heard anything about it before. "They told us my daughter was the second and the youngest victim."
Mr Hassan told the inquiry that he and his wife nursed Gulcan at home until shortly before her death at a specialist hospital on May 23 1997. The family of Britain's first victim of new variant CJD told the inquiry of their fight to have an inquest investigate his death.
Dorothy Churchill, whose 19-year-old son Stephen died of the disease in 1995, one of 29 victims of the disease. Mrs Churchill, who has already told the inquiry how she watched her son - an outstanding student who had dreamed of an RAF career - succumbed to the vicious brain disease, said that she and her husband had won their fight not only for an inquest but also for the public inquiry into how the disease spread to humans.
Sitting next to her husband David, Mrs Churchill, who runs the National CJD Helpline, said that after Stephen had died the death certificate failed to record any mention of CJD despite it being confirmed to Stephen's parents that he had died from the disease. She said: "We eventually had the death certificate changed. When we were told it was CJD we thought there should be an inquiry and we went to the coroner."
She said that this had happened after the government admitted a link between BSE in cattle and the deadly new strain of degenerative brain disorder in humans. "We said as a family that we didn't believe Stephen had died from natural causes."
Eventually Home Secretary Jack Straw intervened and earlier this year the family, who live in Devizes, Wiltshire, were told an inquest will be held later this year in Chippenham into their son's death. Gerard Callaghan, from Belfast, said his family had been distressed with the way they were treated after the death of his brother Maurice from new variant CJD.
He said: "When you contrast between the period just before Maurice's death and the 72 hours afterwards the comparison is stark. "Maurice enjoyed dignity and respect at the hospice and we can never praise it enough. "We had agreed to a post mortem and had been promised it would not impact on the family arrangements and we would have a normal burial. "All those promises were broken within 72 hours."
Mr Callaghan said the problems began when they tried to register his brother's death and were told the authorities would not accept dementia as the cause of death for a 30-year-old man.
He said: "There followed what can only be described as a bizarre catalogue of events. "We had phone calls from the Belfast coroner, the senior neurologist involved and at one stage the Home Office, family priest and the police were involved. "At one stage the priest threatened to take Maurice's body to the church early to prevent the body being impounded."
Mr Callaghan said when the family arrived at the cemetery for his brother's burial they found the grave had been dug to a depth of ten and half feet, and had been lined with lime. He said: "My interpretation was that they'd punished my brother.
"It was a medieval burial, how dare they line my brother's grave like t
hat." He said that the experience of the funeral had made it harder for the family to come to terms with Maurice's death. In a voice shaking with emotion he told the inquiry panel: "It's important for the family that we air these very important issues. "We have, as a family, talked about moving on. "We are still stuck at a lime-filled grave and we can't move on."
The inquiry then heard from Christopher Pearson who said he had given permission for a post mortem to be carried out on his wife Anna after she died from new variant CJD at the Kent and Canterbury Hospital on February 1, 1996. Mr Pearson said he agreed to a post mortem being carried out in London on the understanding that it would not affect the family being able to view his wife's body after she was brought back before cremation. But when Mrs Pearson's body was returned to the funeral home, Mr Pearson said he was contacted by the funeral director who said his wife had been placed inside a body bag which could not be opened. He said: "I remember feeling so cheated that I couldn't spend a small amount of time with my wife."
Clare Callaghan told the inquiry that more should be done for parents worried their children could contract CJD. Mrs Callaghan was pregnant with her second daughter Aiose while her husband Maurice was dying from the disease, and said she was also speaking on behalf of Anthony Bowen who gave evidence yesterday but was too upset to return to the inquiry today. Mr Bowen's wife Michele was pregnant with the couple's son Anthony while she was dying from new variant CJD.
Mrs Callaghan said: "We live with constant worry every day, wondering what is going to happen to our children, especially for Anthony with maternal transmission. "It's not just while this inquiry is going on, we live with this every day and I feel not enough is being done to help parents like us. "We have watched it once before. I couldn't bear to go through it again, it's too devastating."
Through tears, Mrs Callaghan told the inquiry she thought there should be a counselling service available for people in her position. She said: "My daughter was three when my husband died, she's six now and I still don't know what to tell her when she says, `How did my daddy die?'"
Mrs Callaghan said more work needed to be done on finding an early test for CJD which might help reduce the worries of parents for their children. She said: "An early diagnosis is very important, and I know that Anthony feels the same. He constantly watches his child. "If they fall one day, you think `Oh my God, is this the start of it?'"
David Churchill, said he was disappointed that the specialist CJD surveillance unit, based in Edinburgh, did not have any contact with his family until after his son Stephen's death. He said medical protocol meant the unit could only become involved with a case once it was called in by the doctors treating the patient.
He said: "Our feeling as a family is that, had the neurologist approached Edinburgh, had there been better communication between the hospital in London and Edinburgh, there is a potential that the whole discovery of a new disease could have been moved forward by three months."
Chair of the inquiry Lord Justice Philips thanked the families for attending and re-living events surrounding the deaths of their loved ones. He assured them that the inquiry would make every effort to be thorough and live up to their "high hopes". He added that the inquiry panel would pay close attention to the shortcomings in care provision for CJD sufferers which the families' evidence had uncovered.
Thanking them for their courage he warned that one question the inquiry would not be able to answer was why it was their loved ones had "had this awful fate fall upon them." He said: "We here had very much in mind that it could have been one of our children. I have certainly asked myself if I would have been capable of the courage that so many of you have shown."
Wed, Oct 28, 1998 By Geoff Meade, European Editor, PA NewsThe European Commission today cleared the way for the government to lift the ban on British beef on the bone. EU officials said Brussels no longer requires all UK beef to be de-boned as a prerequisite for lifting the worldwide trade blockade on exports. But de-boning will still be demanded for exported beef - and with Germany still leading objections to resuming full export trade, an end to the world-wide ban is still months away.
The Commission said its recommendations to EU veterinary experts no longer included insistence that all British beef for domestic consumption must be de-boned. But a Commission spokesman warned that opposition still remained among some member states to a full resumption of British beef exports. Exports have already resumed for beef from Northern Ireland, thanks to the province's comprehensive computer checking system monitoring cattle at high risk from BSE. But the export ban from England, Wales and Scotland remains in place pending the introduction of similar computer monitoring.
The government's hopes of an end to the ban now rests with a proposal already under consideration by experts. It would allow resumption of exports of beef from animals born after August 1, 1996 - the date when a ban on feeding meat and bonemeal to livestock first came into effect. However, German consumers remain the most sensitive to the prospect of beef from a BSE-infected country returning to the market place - and a new Commission move to stop the spread of BSE in Portugal will do nothing to help Britain's case.
Following the outbreak of 67 cases of "mad cow disease" since the start of this year, Commission officials are proposing tough new controls on beef from Portugal. The government still hopes a deal to remove the British beef ban can be agreed at talks in Brussels in December - more than two and a half years after the trade blockage was first imposed in response to consumer fears about the spread of BSE.
Wed, Oct 28, 1998 By Dominic Hayes, Parliamentary Staff, PA NewsThe Prime Minister today sidestepped a Labour backbench call for action to create the Food Standards Agency to be included in the Queen's Speech programme for the coming parliamentary session. He said at question time that establishing the agency was a "commitment by the Government which we intend to honour and carry out". But he added that the legislative programme would be put together "taking account of all the various issues that there are there". He rounded on Conservatives who jeered at this response, calling them "the party of BSE and E.Coli".
Mr Blair was replying to Labour's Doug Naysmith (Bristol NW), who asked him to confirm the FSA was still on the agenda despite "rumours and speculation emanating from so-called informed sources". The Prime Minister said: "Establishment of a Food Standards Agency is a commitment by the Government which we intend to honour and carry out but of course you will know that we have to put our legislation programme together taking account of all the various issues that there are there.
"However, we remain committed to doing it and committed to doing it as quickly as possible and of course the reason why we are having to set up an independent Food Standards Agency - we all know why - is because the party of BSE and E.Coli never took the decisions necessary, but we will."
Wed, Oct 28, 1998 By Amanda Brown, Environment Correspondent,PA News.A top health and nutrition expert today warned the Government against any delay in setting up a Food Standards Agency in the wake of the BSE crisis.
Professor Philip James, of the Rowett Research Institute in Aberdeen, who originally proposed a FSA to ministers, spoke out against a hold-up at a Lords select committee. He said consumer trust "is one of the most difficult things to achieve," and urged more public openness.
Professor James's call came amid speculation the Prime Minister may not include the new watchdog in the forthcoming Queen's Speech on November 24, because he wants to clear the decks for planned Lords reform and cannot afford any logjam in the busy Parliamentary programme. Consumer and green lobby groups have been pressing for a new agency to boost confidence in food production and retail standards. The current row over genetically modified foods has highlighted the problem, along with BSE and the huge increase in food poisoning cases.
The Professor added: "If you are going to establish trust in the public mind it is quite difficult, because everyone complains the media gets it wrong. "But I think you have to have a mechanism in play ... if it doesn't come, I think you will run into trouble. "You have to get away from the traditional British view that "I am the expert and you don't know what you are talking about" That is a crazy way of going about it. "We need a process which effectively begins to allow a debate in a more public way. "It won't solve the problem because everything I have learned since my report, implies the need for an integrated process. Throughout the world, other organisations are coming to the same conclusion."
But he underlined the "real danger," if the Bill is not in the next Parliamentary session especially with "all this heat and discussion about genetically modified organisms and BSE. There are at least a dozen big issues." Professor James said the whole thing should be opened up to consumers and to technical experts. Former Conservative MP Lord Jopling said if the FSA was not in the forthcoming session, it may not be on the statute book until three and a half years after the general election.
Reuters World Report Wed, Oct 28, 1998LISBON - Portugal on Wednesday blasted as "exaggerated" a European Commission call for a global ban on its beef exports over mad cow fears. "It is a measure that warrants the profound disagreement of the Portuguese government and which I consider wrong, exaggerated and out of proportion," Agriculture Minister Luis Capoula Santos said.
The minister spoke to journalists after the Commission announced in Brussels that it would recommend a nine-month ban on beef exports, with foreign sales of live cattle being blocked for 18 months. The embargo, similar to that imposed on Britain in 1996, was being imposed after EU inspections had show a lack of controls over animal feed, European Farm Commissioner Franz Fischler said in Brussels.
The number of notified new cases of bovine spongiform encephalopathy (BSE) in Portugal this year approach 60. It is one of the few European countries in which the incidence of the disease is still rising. As word of a possible EU ban leaked out earlier this week, Capoula Santos warned that Portugal would lodge a vigorous appeal against any embargo. The government recently presented the Commission with a new plan to erradicate the disease.
Capoula Santos said that while some failures in the previous system had been detected, they were similar to shortcomings revealed in 13 of the European Union's 15 member states. He said that the cases now emerging in Portugal were those of cows infected by the sickness five or six years ago before Portugal had any erradication programme.
Portugal says that it is not a high-risk country in terms of the incidence of the disease, compared with Britain, which is fighting to lift an EU ban on its beef exports. Portugal has so far reported some 160 cases of BSE in cattle against about 175,000 cases in Britain. Portugal is not a major beef producer and exports only a very small portion of its output, mostly to Spain, which has already closed its border to imports under unilateral health measures allowed by EU law.
Comment (webmaster): This is bad news that Portugal is feigning anger and going to a denial mode, rather than cleaning up its mess. Apparently the EU has reason to believe a a large number of cases went unreported via a corrupted inspection service and that the disease may also have become independently established there through feed-back of rendered animals. The true scale of the epidemic will probably never be acknowledged; Portugal shows no sign of adopting screning for pre-clinical animals. Like Britain, the only thought is economic loss to cattle and dairy producers.
Oct. 28/98 Reuters Andrew OsbornBRUSSELS -- The European Commission on Wednesday recommended a worldwide ban on exports of Portuguese beef and live cattle in response to a rise in the number of cases of mad cow disease.
European Agriculture Commissioner Franz Fishler told a news conference that the European Union executive sought to bar exports of live cattle for 18 months, while banning meat exports for up to nine months. He said, "The main elements are...an embargo on the export of live animals and a limited export ban on meat and other products," adding that the measures were part of a package required to stop the BSE crisis.
The number of notified new cases of bovine spongiform encephalopathy (BSE) in Portugal is close to 70 so far this year and likely to rise to 100 by December, said Gerry Kiely, Fischler's spokesman, adding it was the alarming increase in the incidence of BSE that forced the Commission to act.
Portugal is not a major beef exporter. It sold just 3,000 tonnes in 1997, most of it to Spain which has already closed its border under unilateral health measures allowed by EU law. But the move is another blow to Europe's beef industry, still reeling from Britain's mad cow scare, which resulted in the EU banning its worldwide exports in March 1996.
The proposed ban rekindles fears that the scourge of BSE is not yet over. Only last week, a fourth case was reported in the Netherlands, while Belgium and France also had new notifications in recent weeks. The Commission's recommendation will be put to a committee of EU vets on Friday which, officials said, was expected to endorse the plan. The measures will not enter into force until a majority of the 15-nation EU's farm ministers vote for the package. They are next due to meet on November 23-24.
Lisbon recently presented the Commission with a new plan to eradicate the disease and has stressed it is not a high-risk country in terms of the incidence of the disease, compared with Britain, which is still fighting to lift an EU ban on its beef exports. Portugal has so far reported some 160 cases of BSE in cattle against about 175,000 cases in Britain.
Other measures in the Commission package included a total ban on the use of meat and bone meal in animal feed and the removal of so-called specified risk material such as spinal cord from abattoirs. Fischler pressed for the embargo after EU inspections in May and September revealed serious failings in Portugal's controls over animal feed.
The Commission said it would help Portugal foot the bill for implementing the measures. "We have agreed a proposal to take into account some of the economic implications. As soon as investment is undertaken (to fight the spread of BSE) we will consider helping them," said Fischler.
Wed, Oct 28, 1998 By Eileen Murphy, Consumer Affairs Correspondent, PA NewsConsumer groups today told how ministers and officials responsible for public health warnings during the BSE crisis operated in an atmosphere of secrecy as they maintained that beef was safe. But they were eventually forced to change their minds - a turnabout described today as "too little, too late".
The public inquiry investigating BSE heard that "flawed" official claims and predictions underestimated the extent of the problem in the UK's cattle herds. Consumer watchdogs were made to sign the Official Secrets Act and told to disregard the views of anti-Government scientists who were sounding alarm bells.
Groups involved in a panel set up by the Ministry of Agriculture, Fisheries and Food (MAFF) today gave evidence to the inquiry. A joint statement from Dr John Beishon, the former director of the Consumers' Association, and his former assistant Derek Prentice detailed how relations between the CA and MAFF broke down as concern over BSE grew.
Mr Prentice said: "Our recollection is that CA first became aware of the BSE issue late in 1987. We were, however, already concerned at the attitude of the Government in general and MAFF in particular in relation to a number of food safety issues." In the case of an earlier salmonella outbreak, he claimed that Government advice appeared to blame consumers for risks and "completely failed to address the real cause of the problem, namely the farming and industry practices at the time."
He added: "The official responses were, in our view, too little and too late. In our opinion the attitude of some of the civil servants seemed to border on contempt for consumer organisations. "We found there was a total lack of openness at MAFF which had a regime that regarded even the most trivial piece of information as confidential or even secret." Mr Prentice disclosed that on some occasions officials asked consumer groups to sign the Official Secrets Act before attending meetings.
Another witness, Suzi Leather, sat on MAFF's panel from its inception in 1990 until 1995. She described how the then Agriculture Minister Nicholas Soames would criticise the views of scientists who were sceptical about the Government's line on BSE and blame "irresponsible" media coverage for creating the crisis.
She said of the attitudes within MAFF at the time: "It seemed as if beef had almost symbolic value for ministers. Certainly they wanted to believe that beef was safe. "A situation was being created in which it was impossible to voice criticism without being labelled unpatriotic." The inquiry, which has been sitting in south London since March, will go on to hear evidence from former ministers in power at the time of the crisis.
Tue, Oct 27, 1998 By Eileen Murphy, Consumer Affairs Correspondent, PA NewsThe inquiry into the BSE crisis will today hear a consumer watchdog group criticise Government handling of the issue. Sheila McKechnie, director of the Consumers' Association, will present a statement to the inquiry detailing how her organisation was critical of the way the Government handled food scares as far back as the salmonella outbreak in the 1980s, and continues to campaign for an independent food agency.
In her statement to the public inquiry, which has been sitting since March this year, the director said the CA had been in constant discussion over food safety issues with the Government but expressed concern in 1994 when it appeared that less restrictions may be placed on beef herds.
The CA also contacted the agriculture minister John Gummer in 1990 to voice concern about the safety of animal feeding stuffs and sent detailed recommendations to a Parliamentary Select Committee.
She said: "The submission detailed a raft of new measures which the CA considered appropriate for a truly precautionary approach in view of the possible implications if BSE could be transmitted to humans. "Many of these suggestions were dismissed at the time as unnecessary and were then introduced in later years."
The inquiry will also hear how a CA survey in 1996, just after the possible link between infected meat and a human form of BSE was announced by Government, showed that 71% of people considered the Government had withheld information regarding the risks associated with BSE.