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From: TSS (
Subject: The Contagion of Fear
Date: October 25, 2004 at 12:55 pm PST

The Contagion of Fear

October 25, 2004

The disease's fatal grip on the brain seems to come out of
nowhere, afflicting an otherwise healthy person and turning
him into an incoherent muddle. In Ulster County in upstate
New York, that was how death came to at least two people in
the last year. The rare brain malady called
Creutzfeldt-Jakob disease caused the death of one resident
in November 2003 and of a second this fall.

About one in a million people worldwide die from the
mysterious disease each year, and there is no medical
explanation for why the disease afflicts humans in its most
common form.

There has been a recent buzz in Ulster County about the
strange illness, but only within the small circles of the
victims' families.

Then the community discovered that a 60-year-old woman had
died in August from an illness that seemed similar to
Creutzfeldt-Jakob disease. The woman's family did not allow
an autopsy, so it cannot be determined if she had the
disease. But after comparing notes, people found out that
another person in nearby Dutchess County died of the
disease this year.

There have been other unusual deaths, including that of
another woman in Ulster County, Colleen Staccio, 46, who
died in August from a condition her doctors initially said
was Creutzfeldt-Jakob disease but whose autopsy showed
otherwise, and that of Richard Tobey, 59, who died of the
disease two weeks ago.

The community's response has gone from curious to downright

State health inspectors investigating the deaths said they
could not discuss specifics of the cases, citing privacy
concerns. They did say that they saw no risk to public

That has done little to ease public concern.

A state health investigator who looked into the deaths
agreed to speak with The New York Times to ease public
concern but insisted on anonymity. He said that, at most,
the deaths represented a "statistical anomaly."

The investigator said that the woman whose family refused
an autopsy had been sick when she moved to Ulster County,
that Creutzfeldt-Jakob disease had been ruled out in Ms.
Staccio's case and, most important, that none of the deaths
were the result of a form of Creutzfeldt-Jakob disease that
can be caused by outside factors like infected meat.

That form of the disease, called variant Creutzfeldt-Jakob
but more commonly referred to as mad cow disease, is what
brought the malady to public attention in the late 1990's.

Many people ate cattle in England infected with bovine
spongiform encephalopathy, and as a result came down with
the variant form of the disease. The cases caused a panic
around the world.

In the United States, there has only been one documented
case of someone dying from variant Creutzfeldt-Jakob, a
woman in Florida who had lived in England.

Despite the fact that there is little evidence of that form
of the disease here, the fear in Ulster County is that some
outside factor is causing the deaths. That is not the case,
state health officials said. They confirmed the deaths in
Ulster and Dutchess Counties and another case in nearby
Orange County.

But, they noted, every year in New York State, around 20
people die from what is called sporadic Creutzfeldt-Jakob
disease. The deaths in upstate New York are not considered
out of the ordinary, except that people are talking about

Because so little is known about the disease, the fact that
answers were hard to come by only added to the confusion.

"They're saying it's not a big deal, but I don't buy that
at all," said Jane Scordalakis, who was window-shopping
last week in Kingston, N.Y., where several of the victims
lived and were initially treated.

A staid, small city, Kingston is a community where
individuals often cross paths. "They said there were two
people in the hospital at the same time with this disease,
but that there is no correlation," Ms. Scordalakis said.
"How do they know that there is no correlation?"

Creutzfeldt-Jakob disease is caused by a misformed protein
- called a prion - in the brain. According to the World
Health Organization, roughly 85 percent of the cases of the
disease around the globe are sporadic, meaning people who
get the illness, typically those over 65, are exposed to no
known risk factors.

The disease can lie dormant for years, even decades, and
doctors do not know what sets it off. There are only a
handful of known prion diseases that afflict humans, and
all are fatal. Creutzfeldt-Jakob disease has been the
subject of serious medical study for the past 10 to 20
years, but the cases in Ulster County are typical of the
way the disease works.

Mr. Tobey was in relatively good health when he got sick
this past summer. At first, his daughter, Stacey Tobey,
noticed only little changes - the world seemed to be
getting fuzzier for her father.

"Basically, he progressed to where he couldn't eat,
couldn't swallow, couldn't speak," Ms. Tobey said. Doctors
were puzzled by his rapid deterioration. At first they
thought it might have been related to his sleep apnea, then
they thought he must have suffered a stroke.

In fact, the state health inspector said, reports of
symptoms that seem to suggest Creutzfeldt-Jakob disease
often turn out to be caused by strokes or the rapid onset
of Alzheimer's disease.

A biopsy confirmed that Mr. Tobey was indeed suffering from
Creutzfeldt-Jakob disease. He died less than three months
after he first started showing symptoms.

Richard Joseph Da Silva, 58, from Highland Mills in Orange
County, suffered in a similar manner before he died in May
of what his wife, Ann Marie Da Silva, said was listed on
his death certificate as Creutzfeldt-Jakob disease. Mrs. Da
Silva, contacted The New York Times after reading about the
cases in Ulster County. She was upset that the state health
officials had not gotten in touch with her to find out more
about Mr. Da Silva's death.

One senior state health official, who said he did not want
to be named because of patient privacy concerns, said
investigators rarely contact families in deaths involving
dementia, an effect of the disease. A New York State law
requires health inspectors to examine every death caused by
dementia - which means they examine hundreds of cases a
year. In the Health Department's division of chronic
disease, several people are devoted solely to this task.

When the department investigates deaths believed to have
been caused by Creutzfeldt-Jakob disease, it first
determines the actual cause of death and then decides if
there is a cluster of related deaths or just a geographic
coincidence. More often than not, officials said, it is a

For instance, in New Jersey, a series of deaths from
Creutzfeldt-Jakob disease in the Cherry Hill area in recent
years caused a stir after people started looking at the
death certificates and saw all sorts of perceived patterns.

Dr. Clifton R. Lacy, the New Jersey health commissioner,
said that a lengthy investigation found nothing out of the
ordinary, but that did not stop the public from worrying.

The New York health investigator who looked into the deaths
in Ulster County said, "Often the geographic patterns that
you see have no relevance."

But Mrs. Da Silva said, "I am just feeling very

She said she had read extensively about the disease and was
looking for any possible clues. For example, she said that
her husband had served in the Vietnam War. "He saw the
worst of the worst," Mrs. Da Silva said. "He did deal with
open brains, he was holding people's body parts."

Until the weeks before his death, Mr. Da Silva had been in
good health and had worked for years as a dean at Rutgers
University, Mrs. Da Silva said. Then, last spring, he
suddenly changed.

"He started shaking," Mrs. Da Silva said. "He just became
very frightened and he kept saying, 'There is like a glaze
over everything I am seeing.' ''

Mr. Da Silva died a few weeks later, on May 13, 2004.

Florence Kranitz, the president of the Creutzfeldt-Jakob
Disease Foundation in Ohio, said the frustration of
relatives of those who die from the disease was
understandable. "Sporadic C.J.D. is a very enigmatic form
of this disease and it seems to happen for no apparent
reason," she said. "This is a scary disease. It's one of
the most horrible on the face of the earth."

Mr. Tobey's widow, Barbara, said she got a crash course on
the disease. "I am very puzzled," she said. "I want more
answers as to what killed my husband."

But sometimes, health officials say, there are no answers.

Samme Chittum contributed reporting for this article.

In the Health Department's division of chronic disease,
>several people are devoted solely to this task.



One reason for this was the _inaccuracy_ in coding of cases correctly
certified as CJD Coding is carried out by staff who are not medically
qualified and it is not surprising that coding errors occur in the
processing of large numbers of certificates. In 1982, 12,000
certificates per week were processed at the office of population
censuses and surveys bu 15 coders and 6 checkers (Alderson et al.,
1983). The occurrence of both inter- and intra-observer coding errors
has been described (Curb et al., 1983) and the _inaccuracies_ of BOTH
certification and coding discovered in this study _support_ the
introduction of a more accurate system of death certificates and a more
detailed and specific coding system...


>Florence Kranitz, the president of the Creutzfeldt-Jakob Disease
>Foundation in Ohio, said the frustration of relatives of those who
>die from the disease was understandable. "Sporadic C.J.D. is a very
>enigmatic form of this disease and it seems to happen for no apparent
>reason," she said.

RIGHT! and as long as this foundation and others continue to ignore the
science, the agent will always be sporadic without any route and source.
as soon as the cdc came through the back door of the CJD Foundation
you could see the writing on the wall, all sporadic. what better way than
to have all diangosed cjd be sporadic, than to have one central surveillance
unit over riding any atyical TSEs in humans diagnosed by any other doctor.
how many times has this happened already? yep, just my 2 bits worth ...
the bse/nvCJD only theory should be trashed once and for all...

BSE prions propagate as either variant CJD-like or sporadic CJD-like
prion strains in transgenic mice expressing human prion protein

THE new findings of BASE in cattle in Italy of Identification of a
second bovine amyloidotic spongiform encephalopathy: Molecular
similarities with sporadic Creutzfeldt-Jakob disease

Characterization of two distinct prion strains
derived from bovine spongiform encephalopathy
transmissions to inbred mice

Adaptation of the bovine spongiform encephalopathy agent to primates
and comparison with Creutzfeldt-Jakob disease: Implications for
human health

In an experimental study of the transmissibility of BSE to the pig,
seven of 10 pigs, infected at 1-2 weeks of age by multiple-route
parenteral inoculation with a homogenate of bovine brain from
natural BSE cases developed lesions typical of spongiform

THE recent discoveries of previously unidentified strains of
Scrapie such as 221C44 and the Nor9845;


UK Strategy for Research and
Development on Human and Animal
Health Aspects of Transmissible
Spongiform Encephalopathies


WHEN in fact, the findings from Marsh and the findings at
MISSION, TEXAS support even further evidence that there
are further strains of TSE in the USA besides that one
accidentally documented BSE case in Washington on
Dec. 23, 2003;

In Confidence - Perceptions of unconventional slow virus diseases of
animals in the USA - Report of a visit to the USA - April-May 1989 - G A H
Wells [head of England's main veterinary lab]

Evidence That Transmissible Mink Encephalopathy
Results from Feeding Infected Cattle

THE exact same thing that happened in the uk is happening in the usa,


20 year old died from sCJD in USA in 1980 and a 16 year
old in 1981. A 19 year old died from sCJD in
France in 1985. There is no evidence of an iatrogenic
cause for those cases....

cover-up of 4th farm worker ???


now story changes from;

SEAC concluded that, if the fourth case were confirmed, it would be
worrying, especially as all four farmers with CJD would have had BSE
cases on their farms.


This is not unexpected...

was another farmer expected?

4th farmer, and 1st teenager

2. snip...
Over a 5 year period, which is the time period on which the advice
from Professor Smith and Dr. Gore was based, and assuming a
population of 120,000 dairy farm workers, and an annual incidence
of 1 per million cases of CJD in the general population, a
an individual in the general population to develop CJD. Using the
actual current annual incidence of CJD in the UK of 0.7 per
million, this figure becomes 7.5 TIMES.

3. You will recall that the advice provided by Professor Smith in
1993 and by Dr. Gore this month used the sub-population of dairy
farm workers who had had a case of BSE on their farms -
63,000, which is approximately half the number of dairy farm
workers - as a denominator. If the above sums are repeated using
this denominator population, taking an annual incidence in the general
population of 1 per million the observed rate in this sub-population
is 10 TIMES, and taking an annual incidence of 0.7 per million,
that in the general population...


July 13, 2004

IG Audit Finds Multiple Flaws in Mad Cow Surveillance Plan
Rep. Waxman raises questions about the effectiveness and credibility of
USDA's response to mad cow disease, citing an audit by the USDA
Inspector General that finds systemic deficiencies in the Department's
surveillance plan and new evidence that USDA misled the public in the
wake of the detection of an infected cow in Washington State.

- Letter to USDA

IG Draft Audit

May 13, 2004

Failure To Test Staggering Cow May Reflect Wider Problems
Rep. Waxman raises concerns that the recent failure of USDA to test an
impaired cow for BSE may not be an isolated incident, citing the failure
of USDA to monitor whether cows condemned for central nervous system
symptoms are actually tested for mad cow disease.

- Letter to USDA

FDA Statement

May 4, 2004

Media Inquiries: 301-827-6242
Consumer Inquiries: 888-INFO-FDA

Statement on Texas Cow With Central Nervous System Symptoms

On Friday, April 30 th , the Food and Drug Administration learned that a
cow with central nervous system symptoms had been killed and shipped to
a processor for rendering into animal protein for use in animal feed.

FDA, which is responsible for the safety of animal feed, immediately
began an investigation. On Friday and throughout the weekend, FDA
investigators inspected the slaughterhouse, the rendering facility, the
farm where the animal came from, and the processor that initially
received the cow from the slaughterhouse.

FDA's investigation showed that the animal in question had already been
rendered into "meat and bone meal" (a type of protein animal feed). Over
the weekend FDA was able to track down all the implicated material. That
material is being held by the firm, which is cooperating fully with FDA.

Cattle with central nervous system symptoms are of particular interest
because cattle with bovine spongiform encephalopathy or BSE, also known
as "mad cow disease," can exhibit such symptoms. In this case, there is
no way now to test for BSE. But even if the cow had BSE, FDA's animal
feed rule would prohibit the feeding of its rendered protein to other
ruminant animals (e.g., cows, goats, sheep, bison).

FDA is sending a letter to the firm summarizing its findings and
informing the firm that FDA will not object to use of this material in
swine feed only. If it is not used in swine feed, this material will be
destroyed. Pigs have been shown not to be susceptible to BSE. If the
firm agrees to use the material for swine feed only, FDA will track the
material all the way through the supply chain from the processor to the
farm to ensure that the feed is properly monitored and used only as feed
for pigs.

To protect the U.S. against BSE, FDA works to keep certain mammalian
protein out of animal feed for cattle and other ruminant animals. FDA
established its animal feed rule in 1997 after the BSE epidemic in the
U.K. showed that the disease spreads by feeding infected ruminant
protein to cattle.

Under the current regulation, the material from this Texas cow is not
allowed in feed for cattle or other ruminant animals. FDA's action
specifying that the material go only into swine feed means also that it
will not be fed to poultry.

FDA is committed to protecting the U.S. from BSE and collaborates
closely with the U.S. Department of Agriculture on all BSE issues. The
animal feed rule provides crucial protection against the spread of BSE,
but it is only one of several such firewalls. FDA will soon be improving
the animal feed rule, to make this strong system even stronger.




No mad cow results for nearly 500 cows

By Steve Mitchell
United Press International
Published 8/11/2004 11:23 AM

WASHINGTON, Aug. 11 (UPI) -- The U.S. Department of Agriculture failed
to test for mad cow disease or collect the correct portion of the brain
on nearly 500 suspect cows over the past two years -- including some in
categories considered most likely to be infected -- according to agency
records obtained by United Press International.

The testing problems mean it may never be known with certainty whether
these animals were infected with the deadly disease. Department
officials said these animals were not included in the agency's final
tally of mad cow tests, but the records, obtained by UPI under the
Freedom of Information Act, indicate at least some of them were counted...


-- Steve Mitchell is UPI's Medical Correspondent. E-mail Copyright © 2001-2004 United Press International

AS long as you don't want to find a mad cow, you will not find one.

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