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From: TSS ()
Subject: Group to dispel myths of rare Creutzfeldt-Jakob disease CJD FOUNDATION AND THE UKBSEnvCJD ONLY MYTH AND QUESTIONNAIRE
Date: June 24, 2007 at 9:52 am PST

Group to dispel myths of rare Creutzfeldt-Jakob disease
CJD Foundation to raise awareness with DVDs, a seminar for nurses
By Tracy Wheeler
Beacon Journal medical writer
Creutzfeldt-Jakob disease is rare and horrifying -- a combination that often makes it misunderstood and mishandled.

The fear and confusion of CJD isn't limited to patients and their loved ones, though. Too often, medical professionals are swayed by myths and poor information as well.

The Akron-based CJD Foundation hopes to change that through informational DVDs and an upcoming seminar targeted at nurses.

``We want to raise awareness,'' said foundation director Florence Kranitz. The fear of infection ``sometimes gets in the way of patient care. There's a lot of misinformation about what is contagious and what is not contagious.''

Often referred to as a human relative of mad cow disease, CJD produces microscopic holes in the brain that lead to dementia, hallucinations, uncontrollable flailing of arms and legs and ultimately death, sometimes within weeks, usually within months.

In the United States, about 85 percent of cases occur for no known reason, while about 15 percent are inherited and a small number are caused by contaminated medical equipment. In the United Kingdom, another form of CJD -- known as variant CJD or v-CJD -- was linked to the ingestion of beef tainted with mad cow disease, or bovine spongiform encephalopathy.

snip...end full text ;

THE ONLY myths are the UKBSEnvCJD only theory,

and that sporadic CJD just happens without route and source as some would have us to believe.

and that the CJD Foundation really wants answers to route and source of sporadic CJD.

after my dealings with them on the CJD Questionnaire that they did everything in there powers NOT to have, and still not sure if everyone is receiving one, proves they did not, do not want answers as to route and source of the sporadic CJD agent. ...

i am reminded of a few things deep throat told me years ago;


The most frightening thing I have read all day is the
report of Gambetti's finding of a new strain of
sporadic cjd in young people.........Dear God, what in
the name of all that is holy is that!!!
If the US has different strains of
scrapie.....why????than the UK...then would the same
mechanisms that make different strains of scrapie here
make different strains of BSE...if the patterns are
different in sheep and mice for scrapie.....could not
the BSE be different in the cattle, in the mink, in
the humans.......I really think the slides or tissues
and everything from these young people with the new
strain of sporadic cjd should be put up to be analyzed
by many, many experts in cjd........bse.....scrapie
Scrape the damn slide and put it into
mice.....wait.....chop up the mouse brain and and
spinal cord........put into some more mice.....dammit
amplify the thing and start the damned
research.....This is NOT rocket science...we need to
use what we know and get off our butts and move....the
whining about how long everything takes.....well it
takes a whole lot longer if you whine for a year and
then start the research!!!
Not sure where I read this but it was a recent press
release or something like that:
I thought I would fall out of my chair when I read
about how there was no worry about infectivity from a
histopath slide or tissues because they are preserved
in formic acid, or formalin or formaldehyde.....for
God's sake........ Ask any pathologist in the UK what
the brain tissues in the formalin looks like after a is a big fat sponge...the agent
continues to eat the brain can't make slides
anymore because the agent has never stopped........and
the old slides that are stained with Hemolysin and
Eosin......they get holier and holier and degenerate
and continue...what you looked at 6 months ago is not
there........Gambetti better be photographing every
damned thing he is looking at.....

Okay, you need to know. You don't need to pass it on
as nothing will come of it and there is not a damned
thing anyone can do about it. Don't even hint at it
as it will be denied and laughed at..........
USDA is gonna do as little as possible until there is
actually a human case in the USA of the
nvcjd........if you want to move this thing along and
shake the earth....then we gotta get the victims
families to make sure whoever is doing the autopsy is
credible, trustworthy, and a saint with the courage of
Joan of Arc........I am not kidding!!!!
so, unless we get a human death from EXACTLY the same
form with EXACTLY the same histopath lesions as seen
in the UK nvcjd........forget any is
ALL gonna be sporadic!!!

And, if there is a case.......there is gonna be every
effort to link it to international travel,
international food, etc. etc. etc. etc. etc. They
will go so far as to find out if a sex partner had
ever traveled to the UK/europe, etc. etc. ....
It is gonna be a long, lonely, dangerous twisted
journey to the truth. They have all the cards, all
the money, and are willing to threaten and carry out
those threats....and this may be their biggest

Thanks as always for your help.
(Recently had a very startling revelation from a rather senior person in
government here..........knocked me out of my must keep
pushing. If I was a power person....I would be demanding that there be a
least a million bovine tested as soon as possible and agressively
seeking this disease. The big players are coming out of the woodwork as
there is money to be made!!!
In short: "FIRE AT WILL"!!! for the very dumb....who's "will"! "Will
be the burden to bare if there is any coverup!"

again it was said years ago and it should
be taken seriously....BSE will NEVER be found in the
As for the BSE conference call...I think you did a
great service to freedom of information and making
some people feign integrity...I find it scary to see
that most of the "experts" are employed by the federal
government or are supported on the "teat" of federal
funds. A scary picture!
I hope there is a confidential panel organized by the
new government to really investigate this thing.

You need to watch your back........but keep picking at a buzzard to the just may
get to the truth!!! (You probably have more support than
you know. Too many people are afraid to show you or let
anyone else know. I have heard a few things myself...
you ask the questions that everyone else is too afraid to ask.)


> Tracy Kedzierski followed with a report about the CJD Foundation Family Questionnaire

> which she works tirelessly at conducting.

thanks tracy, glad it finally got done. we know how 'tirelessly' you must have worked ;-)

(what will they find out with this ??? )
Date: Thu, 07 Nov 2002 10:10:53 -0600
From: "Terry S. Singeltary Sr."

Greetings Voice,

i send this 'CJD Foundation Questionnaire' and ask the
group, what they suppose will be found out with this ???
with this questionnaire, in my opinion, they don't want
to know what/where the routes and sources of CJDs in the
USA are coming from. NO WONDER they said i was interfering
with there research, there research consist of _not_ finding
out anything other than how it was diagnosed. you folks
judge for yourself. maybe i'm just being an extremist as
some say??? then again, maybe not...TSS



Subject: Re: Tracie CJD Foundation
Date: Tue, 5 Nov 2002 15:09:29 -0500
From: "Tracie Kedzierski"
To: "Terry S. Singeltary Sr."
References: <>
<018601c284f7$27a04a80$0a64a8c0@newportrentalguide .com>
<000901c28502$fac15c00$0a64a8c0@newportrentalguide .com>


Oh no....I've gone and pissed you off (ha ha)
I just find it better to that nothing I write is
misinterpreted. It is very important to me that you understand the
conflict, the confusion, etc so can I call you or not? My dime ?

----- Original Message -----
From: "Terry S. Singeltary Sr."
To: "Tracie Kedzierski"
Sent: Tuesday, November 05, 2002 2:45 PM
Subject: Re: Tracie CJD Foundation

> either mail me your explination or forget the it...TSS
> Tracie Kedzierski wrote:
> > Terry,
> >
> > The only problem is that having it on our messageboard conflicts
> > with the information I have on our home page about the surveillance project
> > and the report form I send out to the families.-----it is confusing. In
> > fact..I'm sorry but we (The Foundation) have to pull it off. I need to talk

> > to you about this and share a number of goals the
> > "new" Foundation has Can I call you? Please email me your number....
> >
> > Tracie

> > Original Message -----
> > From: "Terry S. Singeltary Sr."
> > To: "Tracie Kedzierski"
> > Sent: Tuesday, November 05, 2002 1:34 PM
> > Subject: Re: Tracie CJD Foundation
> >
> >>hi Tracie,
> >>
> >>doing fine, thank you. about the questionnaire?
> >>by no means am i trying to step on Dr Gambetti's toes here.
> >>i think there is more to it than just reporting a case.
> >>we _must_ find the source and route of spordic CJDs, and
> >>i think a great deal of it will be from the medical/surgical
> >>arena. i just want a questionnaire made up for _all_ victims of
> >>human TSEs in the USA in _every_ state, and i want it reportable
> >>in _every_ state. i am turning the heat up. ****, i'm getting
> >>old and grey, i want to see it done before i die. will be sending
> >>this out to many media and papers and requesting them to turn the
> >>heat up on the Gov. you will be able to keep up with the ones
> >>coming through the voice and if i get some that have not come
> >>through the list, i will pass on to Dr. Gambetti if he likes.
> >>i respect Dr. Gambetti very much and would do nothing to hender
> >>his work or yours. i just think that this is too important of
> >>a matter not to have one. and i think by turning the heat up,
> >>getting to the media and pressing there buttons a bit, just
> >>might help this get done a bit faster... hope so anyway...
> >>
> >>kindest regards,
> >>terry
> >>
> >>Tracie Kedzierski wrote:
> >>
> >>
> >>>Hi Terry,
> >>>
> >>>How are you? I'm just curious about your Questionnaire ?
> >>> It just was posted on the Foundation's MessageBoard without any
> >>>introduction... and I was a bit concerned as it may cause some
> > confusion
> >>>with the Surveillance Project I'm doing via the Foundation for Dr
> > Gambetti.
> >
> >>>Could you let me know?
> >>>
> >>>Tracie

Greetings again Voice,

just what is the _new_ CJD Foundations goals with
a CJD Questionnaire that asks _no_ questions about soure/route
of the six variants of sporadic CJDs???

snip... full text ;


SEE history of the infamous cjd questionnaire that asked no questions for route and source ;

sporadic CJD, THE BIG LIE

FACTS often not spoke about ;


18 January 2007 - Draft minutes of the SEAC 95 meeting (426 KB) held on 7
December 2006 are now available.


64. A member noted that at the recent Neuroprion meeting, a study was
presented showing that in transgenic mice BSE passaged in sheep may be more
virulent and infectious to a wider range of species than bovine derived BSE.

Other work presented suggested that BSE and bovine amyloidotic spongiform
encephalopathy (BASE) MAY BE RELATED. A mutation had been identified in the


3:30 Transmission of the Italian Atypical BSE (BASE) in Humanized Mouse

Models Qingzhong Kong, Ph.D., Assistant Professor, Pathology, Case Western
Reserve University

Bovine Amyloid Spongiform Encephalopathy (BASE) is an atypical BSE strain
discovered recently in Italy, and similar or different atypical BSE cases
were also reported in other countries. The infectivity and phenotypes of
these atypical BSE strains in humans are unknown. In collaboration with
Pierluigi Gambetti, as well as Maria Caramelli and her co-workers, we have
inoculated transgenic mice expressing human prion protein with brain
homogenates from BASE or BSE infected cattle. Our data shows that about half
of the BASE-inoculated mice became infected with an average incubation time
of about 19 months; in contrast, none of the BSE-inoculated mice appear to
be infected after more than 2 years.

***These results indicate that BASE is transmissible to humans and suggest
that BASE is more virulent than classical BSE in humans.***

6:30 Close of Day One

Diagnosis and Reporting of Creutzfeldt-Jakob Disease
Singeltary, Sr et al. JAMA.2001; 285: 733-734.

vCJD in the USA * BSE in U.S.
15 November 1999


U.S. Scientist should be concerned with a CJD epidemic in the U.S., as

2 January 2000

MARCH 26, 2003

RE-Monitoring the occurrence of emerging forms of Creutzfeldt-Jakob disease
in the United States

Email Terry S. Singeltary:

I lost my mother to hvCJD (Heidenhain Variant CJD). I would like to comment
on the CDC's attempts to monitor the occurrence of emerging forms of CJD.
Asante, Collinge et al [1] have reported that BSE transmission to the
129-methionine genotype can lead to an alternate phenotype that is
indistinguishable from type 2 PrPSc, the commonest sporadic CJD. However,
CJD and all human TSEs are not reportable nationally. CJD and all human TSEs
must be made reportable in every state and internationally. I hope that the
CDC does not continue to expect us to still believe that the 85%+ of all CJD
cases which ar sporadic are all spontaneous, without route/source. We have
many TSEs i the USA in both animal and man. CWD in deer/elk is spreading
rapidly and CWD does transmit to mink, ferret, cattle, and squirrel monkey
by intracerebral inoculation. With the known incubation periods in other
TSEs, oral transmission studies of CWD may take much longer. Every
victim/family of CJD/TSEs should be asked about route and source of this
agent. To prolong this will only spread the agent and needlessly
exposeothers. In light of the findings of Asante and Collinge et al, there
should be drastic measures to safeguard the medical and surgical arena from
sporadic CJDs and all human TSEs. I only ponder how many sporadic CJDs in
the USA are type 2 PrPSc?

Copyright © 2003 Published by Elsevier Ltd.

Tracking spongiform encephalopathies in North America
Xavier Bosch
Available online 29 July 2003.
Volume 3, Issue 8, August 2003, Page 463

"My name is Terry S Singeltary Sr, and I live in Bacliff, Texas. I lost my
mom to hvCJD (Heidenhain variant CJD) and have been searching for answers
ever since. What I have found is that we have not been told the truth. CWD
in deer and elk is a small portion of a much bigger problem."


CJD CASES TRIPLED, with phenotype of 'UNKNOWN' strain growing. ...

There is a growing number of human CJD cases, and they were presented last
week in San Francisco by Luigi Gambatti(?) from his CJD surveillance

He estimates that it may be up to 14 or 15 persons which display selectively
SPRPSC and practically no detected RPRPSC proteins.

[Docket No. FSIS-2006-0011] FSIS Harvard Risk Assessment of Bovine
Spongiform Encephalopathy (BSE)

[Docket No. 03-025IFA] FSIS Prohibition of the Use of Specified Risk
Materials for Human Food and Requirement for the Disposition of
Non-Ambulatory Disabled Cattle



Sporadic creutzfeldt-jakob disease in two adolescents (sCJD, the big lie)
Date: May 28, 2007 at 7:58 am PST


(Adopted by the International Committee of the OIE on 23 May 2006)

11. Information published by the OIE is derived from appropriate
declarations made by the official Veterinary Services of Member Countries.
The OIE is not responsible for inaccurate publication of country disease
status based on inaccurate information or changes in epidemiological status
or other significant events that were not promptly reported to then Central

Audit Report
Animal and Plant Health Inspection Service
Bovine Spongiform Encephalopathy (BSE) Surveillance Program ≠ Phase II
Food Safety and Inspection Service

Controls Over BSE Sampling, Specified Risk Materials, and Advanced Meat
Recovery Products - Phase III

Report No. 50601-10-KC January 2006

Finding 2 Inherent Challenges in Identifying and Testing High-Risk Cattle
Still Remain

Report to Congressional Requesters:
February 2005:
Mad Cow Disease:

FDA's Management of the Feed Ban Has Improved, but Oversight Weaknesses
Continue to Limit Program Effectiveness:


January 2002 MAD COW DISEASE Improvements in the Animal Feed Ban and
Other Regulatory Areas Would Strengthen U.S. Prevention Efforts GAO-02-183

OIE BSE RECOMMENDATION FOR USA, bought and paid for by your local cattle
dealers i.e. USDA

Date: May 14, 2007 at 9:00 am PST

What Do We Feed to Food-Production Animals? A Review of Animal Feed
Ingredients and Their Potential Impacts on Human Health

Date: May 24, 2007 at 6:59 am PST

The Economic Impact of B.S.E. on the U.S. Beef Industry: BY NOT TESTING TO

Date: May 6, 2007 at 3:05 pm PST


Date: May 9, 2007 at 6:43 pm PST


Scrapie Agent (Strain 263K) Can Transmit Disease via the ORAL Route after
Persistence in Soil over Years

Date: May 16, 2007 at 10:01 am PST

Colorado Surveillance Program for Chronic Wasting Disease Transmission to

Date: Wed, 4 Apr 2007 16:22:22 -0500


Sent: Monday, April 02, 2007 2:37 PM


HUMAN and ANIMAL TSE Classifications i.e. mad cow disease and the UKBSEnvCJD
only theory

TSEs have been rampant in the USA for decades in many species, and they all
have been rendered and fed back to animals for human/animal consumption. I
propose that the current diagnostic criteria for human TSEs only enhances
and helps the spreading of human TSE from the continued belief of the
UKBSEnvCJD only theory in 2005. With all the science to date refuting it, to
continue to validate this myth, will only spread this TSE agent through a
multitude of potential routes and sources i.e. consumption, surgical, blood,
medical, cosmetics etc. I propose as with Aguzzi, Asante, Collinge, Caughey,
Deslys, Dormont, Gibbs, Ironside, Manuelidis, Marsh, et al and many more,
that the world of TSE Tranmissible Spongiform Encephalopathy is far from an
exact science, but there is enough proven science to date that this myth
should be put to rest once and for all, and that we move forward with a new
classification for human and animal TSE that would properly identify the
infected species, the source species, and then the route. This would further
have to be broken down to strain of species and then the route of
transmission would further have to be broken down.

Accumulation and Transmission are key to the threshold from subclinical to
clinical disease, and of that, I even believe that physical and or blunt
trauma may play a role of onset of clinical symptoms in some cases, but key
to all this, is to stop the amplification and transmission of this agent,
the spreading of, no matter what strain. BUT, to continue with this myth
that the U.K. strain of BSE one strain in cows, and the nv/v CJD, one strain

in humans, and that all the rest of human TSE is one single strain i.e.
sporadic CJD (when to date there are 6 different phenotypes of sCJD), and
that no other animal TSE transmits to humans, to continue with this
masquerade will only continue to spread, expose, and kill, who knows how
many more in the years and decades to come. ONE was enough for me, My Mom,
hvCJD, DOD 12/14/97 confirmed, which is nothing more than another mans name
added to CJD, like CJD itself, Jakob and Creutzfeldt, or
Gerstmann-Straussler-Scheinker syndrome, just another CJD or human TSE,
named after another human. WE are only kidding ourselves with the current
diagnostic criteria for human and animal TSE, especially differentiating
between the nvCJD vs the sporadic CJD strains and then the GSS strains and
also the FFI fatal familial insomnia strains or the ones that mimics one or
the other of those TSE? Tissue infectivity and strain typing of the many
variants of the human and animal TSEs are paramount in all variants of all
TSE. There must be a proper classification that will differentiate between
all these human TSE in order to do this. With the CDI and other more
sensitive testing coming about, I only hope that my proposal will some day
be taken seriously.

My name is Terry S. Singeltary Sr. and I am no scientist, no doctor and have
no PhDs, but have been independently researching human and animal TSEs since
the death of my Mother to the Heidenhain Variant of Creutzfeldt Jakob
Disease on December 14, 1997 'confirmed'. ...TSS

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