CJD CONFERENCE REPORT July 7-10, 2006 (cjd questionnaire)

[flatfish]

##################### Bovine Spongiform Encephalopathy #####################

Subject: CJD CONFERENCE REPORT July 7-10, 2006
Date: October 23, 2006 at 7:40 pm PST
The 4th Annual CJD Foundation Family Conference was held in Washington D.C. at the Washington Court Hotel on July 7-10, 2006. Grants from the CDC, Pall Medical, Oddessy Health Care and a record breaking attendance made this years’ event our most successful.


We began with an informal reception Friday evening which offered family members and scientists the opportunity to renew old acquaintances or begin new friendships. Meeting in this way gave our families the chance to share their stories of love and loss in an informal environment. Representatives from the Centers for Disease Control and Prevention, the National Institutes of Health, the Food and Drug Administration and the Department of Defense also attended as our guests.


Saturday morning opened with a Memorial Service at which 52 loved ones who had died of CJD were remembered. Each name was read as a flower was placed in a vase. The vase then remained at the front of the room during the entire conference. Many thanks go to Tracy Kedzierski, Ana Betro and Wanda Culp-Lias for creating such a beautiful tribute to those whom we miss. The day continued with ten presentations by the following scientists:

Bernardino Ghetti, M.D., Distinguisher Professor, Indiana University

Pierluigi Gambetti, M. D., Director, National Prion Disease Pathology Surveillance Center

Robert Will, M. D., Professor of Neurology, University of Edinburgh, UK

Neil Cashman, M.D., Brain Research Centre, University of British Columbia

Richard Knight, M.D., Director, National CJD Surveillance Unit, UK

David Kocisko, Ph.D., NIH Laboratory of Persisten Viral Diseases

James Sejvar, M.D., Neuroepidemiologist, CDC

Michael Geschwind, M.D., Ph.D. Memory and Aging Center, University of California

Gene Major, Ph.D. National Insititute of Neurological Disorders and Stroke

Joseph Cervia, M.D., FACP, FAAP, Pall Medical


For information about the specific presentations, please contact the CJD Foundation.


Our annual banquet was help on Saturday evening. Tom Sheridan, president of The Sheridan Group was our guest speaker. The CJD Foundation is most appreciative for Tom’s continued support and enthusiasm as he encourages us in the work we carry out on Capitol Hill.


Engraved crystal awards were presented to Tom and to Dr. Gambetti as a token of our gratitude for their dedication to our work.


Following her report on the work and life of the CJD Foundation, president Florence Kranitz was also presented with a gift for her leadership, passion and the tireless hours she has dedicated to the Foundation. Wanda Culp-Lias ended the evening with her own rendition of “We Shall Overcome”.


Sunday morning we introduced our Medical Education DVD, “Confronting CJD and Other Prion Disorders.” Florence explained the reasons this project was undertaken and how it has been used thus far. The DVD was shown to the conference participants. It can be viewed on line at http://www.smbs.buffalo.edu/cme/cjd/ .


Tracy Kedzierski followed with a report about the CJD Foundation Family Questionnaire which she works tirelessly at conducting.


Pat Lillquist, Ph.D., of the New York State Department of Health reported on the surveillance and education concerning CJD that is carried out in New York State.


Deana Simpson, RN, Founder and Director of CJD Insight offered an excellent presentation of the history of CJD and encouragement for those struggling with the reality of CJD.


Don Simms of Belfast, Northern Ireland, father of Jonathan, Belfast Northern Ireland shared the powerful story of the journey his family has taken over the last five years. Hos DVD presentation outlined the facts in a dramatic DVD rendition of his fight for the right to usepentosan polysulpahte as a treatment for his then 17 year old son diagnosed with variant CJD. Jonathan is still alive five years after treatment began making him the longest living CJD patient. A father’s commitment and a son’s struggle for life were vividly presented.


During lunch on Sunday there was a special meeting for family members coping with familial CJD. Eighteen people attended and were encouraged to share their stories, concerns, questions and hopes. Our thanks to Deana Simpson for moderating the meeting and to Dr. Gambetti for offering to attend and act as advisor to this group. At the request of all who attended, we are planning to include this event again next year. From this initial meeting it was decided that Deana would host an online support group twice a month for those affected by fCJD. She hosted the first very successful group last week.


Our friends from “down under” were, as always, a welcome addition to the conference. Suzanne Solvyns, Carol Wilson and Mandy Newton offered a report on the activities of the CJD Support Group Network in Australia. They are growing considerably and are conducting more meetings in each state of Australia as well as hosting fund raising events.


Dr. Muneto Ueda, Chairman of the CJD Support Network in Japan attended this year’s conference for the first time and brought a group of four other Japanese colleagues with him. Dr. Ueda’s very comprehensive and moving presentation focused on the cases of iatrogenic CJD. In Japan the risk of iatrogenic transmission from CJD contaminated dura mater transplants is 1 in 100,000.


Ruthie George, volunteer Treasurer of the CJD Foundation reported on the “State of Affairs” of the Foundation. Her report included financials, statistics, fund raising events and other fund raising activities of the CJD Foundation.


Following a short break Linda Gregson, Executive Director of the CJD Foundation discussed grief work after a loss to CJD. Not only were symptoms of grief discussed but the common expectations during the first 3-4 years after a loss.


The formal conference concluded with an excellent Advocacy Training Session led by Rhonda Rutledge, a family member and Rick Dearborn, Chief of Staff for Senator Jeff Sessions, AL. Together they were able to help each of us understand the process of political advocacy, visits and provided tools to help make these visits successful. Monday morning many family members participated in visits to their representatives on Capitol Hill. From the evaluations, this day was very successful. For a list of the congressional requests, please go to CJD Foundation website home page and click on Advocacy and then Current Year.





http://www.cjdfoundation.org/conferencereport.htm




> 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 ;-)




Subject: [CJDVoice] CJD FOUNDATION QUESTIONNAIRE ???
(what will they find out with this ??? )
Date: Thu, 07 Nov 2002 10:10:53 -0600
From: "Terry S. Singeltary Sr."
Reply-To: cjdvoice@yahoogroups.com
To: cjdvoice@yahoogroups.com
CC: bloodcjd@yahoogroups.com

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

CJD FOUNDATION QUESTIONNAIRE

CONTINUED

[flatfish]

CJD FOUNDATION QUESTIONNAIRE

REPORT FOR DATA BASE OF PATIENTS WITH CREUTZFELDT--JAKOB DISEASE (CJD)
OR OTHER TRANSMISSIBLE SPONGIFORM ENCEPHALOPATHIES (TSE's)

Name of Patient*:
(not required; if provided, must be with express consent of family member)

Date form filled out: / / (mm/dd/yy)

Person filling out form:

Relationship of person filling out form to patient:

Location where patient died: State: County: City:

Location where patient resided: State: County: City:

Sex of patient: male female unknown

Race of patient: white African-American -- Asian/Pacific Islander
American-Indian/Alaskan Native Other (please identify:
Unknown

Patient's date of birth: (mm/dd/yy)

Age of patient at onset of symptoms:

Date of patient's initial symptoms: (mm/dd/yy)

Age of patient at time of death:

Patient's date of death: (mm/dd/yy)

Duration of illness: months

Was this case referred to the National Prion Disease Pathology
Surveillance Center at Case Western Reserve University in Cleveland,
Ohio? yes no unknown

If yes, by whom was this case referred?
Pathologist -- Neuropathologist -- Neurologist
Other Physician (please identify which kind:
Unknown

Who made initial diagnosis of CJD or other TSE?

Pathologist - Neuropathologist - Neurologist
Other Physician (please identify which kind: )
Unknown

Please describe the clinical neurological presentation of the illness
(list the symptoms or signs):


at onset of the illness:


during the course of illness:


Was an EEG (electroencephalogram) performed? yes -- no -- unknown

If yes,

how long after onset was the EEG performed?

how many times was the EEG performed?

can you indicate the results?

- slow periodic sharp waves (PSW)

- unilateral periodic sharp waves (LSW)

- not reported

- other

Was the cerebrospinal fluid tested for the 14-3-3 protein? yes - no -
unknown

If yes, what was the result? positive - negative - unknown

Was a brain biopsy performed? - yes - no - unknown

If yes, what was the result?_____positive for____

______negative for CJD and other TSE's

______unknown

Was an autopsy performed? yes - no - unknown

If yes, what was the result? _____positive for____

______negative for CJD and other TSE's

______unknown

Was the neuropathology of this case consistent with new variant CJD?
yes - no - unknown

What was the final diagnosis of this case?

___CJD, probably sporadic

___Familial (hereditary) CJD

___Iatrogenic (by infection) CJD; please specify_______________

___Gerstmann-Strausster-Scheinker Syndrome (GSS)

___Fatal Familial Insomnia (FFI)

___Other

___Unknown


* I hereby give consent to the Creutzfeldt-Jakob Disease Foundation,
Inc. to use the above information, including name of patient if
supplied, in connection with activities to promote the research,
education and awareness of Creutzfeldt-Jakob Disease and related
transmissible spongiform encephalopathies.

-4-

END


================================================== ==


Greetings again CJD Voice,


NOW, compare to the CJD questionnaire i sent through,
and ask yourself why they ask me to remove this from
internet? better yet, ask yourself why the CJD Foundation
in fact did remove my questionnaire from their message
board? what is it they are so afraid of that we may find
out?

Subject: [CJDVoice] CJD QUESTIONNAIRE... updated version II...TSS
Date: Tue, 05 Nov 2002 12:52:52 -0600
From: "Terry S. Singeltary Sr."
Reply-To: cjdvoice@yahoogroups.com
To: cjdvoice@yahoogroups.com
CC: bloodcjd@yahoogroups.com


CJD VICTIM


CONTINUED

[flatfish]

Subject: [CJDVoice] CJD QUESTIONNAIRE... updated version II...TSS
Date: Tue, 05 Nov 2002 12:52:52 -0600
From: "Terry S. Singeltary Sr."
Reply-To: cjdvoice@yahoogroups.com
To: cjdvoice@yahoogroups.com
CC: bloodcjd@yahoogroups.com


CJD VICTIM

1. NAME______________________________________
STREET___________________________________
TOWN_____________________________________
phone____________________________________

A. What is the subjects SURNAME____________________________
B. What is the subjects status? ___________________________
(1=suspect/confirmed CJD, 2=hospital control (specify
diagnosis), 3=GP control).
C. If the subject is a (suspect) case, are they alive on the
day of interview?_____(yes or no or not applicable)
D. What is your (respondent's) name?_______________________
(first name, and surname)
What is the relationship to (subject)?________________
address__________________phone____________________ ____
E. DATE OF INTERVIEW__________________________
LOCATION OF INTERVIEW_____________________
F. NAME OF INTERVIEWER________________________

2. SUBJECT INFORMATION
A. SEX___________________
B. BIRTH DATE____________
C. BIRTH PLACE___________ (country, state, county, city)
D. ETHNIC ORIGIN_________
E. MARITAL*DOMESTIC STATUS__________________
(If the subject is female and is/has been married)
record the subjects maiden name if different from current surname.
F. PRESENT HOME ADDRESS_________________________
(ALSO, If deceased, last home address, before subject
became ill?)
G. Is/was subject right or left handed?__________________
F. How many years of full-time education?________________

3. PAST MEDICAL HISTORY
A. Has the Subject had dental treatment other than fillings:
e.g. extractions or root canal work?_________________
If yes, record a description of treatment; with dates;
Dentists name and address____________________________
B. Has the Subject ever had any operations, including eye
operations or stitching of wounds?___________________
(If yes, record the year, hospital and type of operation).
_____________________________________________
_____________________________________________
_____________________________________________
(record total number of operations)

For each type of operation record the number of such operations
undergone, the year of the first such operation and the year of the last
such operation. When no such operations were undergone record 0 for the
number of operations.

NEUROLOGIC (brain)_____________________________
EYE____________________________________________
ABDOMINAL______________________________________
ORTHOPEDIC_____________________________________
OTHER__________________________________________
TONSILS OUT?___________________________________
APPENDIX OUT?__________________________________
ever received an ORGAN TRANSPLANT, including corneal or bone
marrow transplant?_____________________________________
kidney, liver, and other_______________________
C. BLOOD TRANSFUSION__________________________
TRANSFUSION OF ALBUMIN OR IMUNOGLOBULIN________
BLOOD DONOR____________________________________
D. Has Subject ever been admitted to a
Hospital_______________________
E. Has Subject ever been to see psychiatrist (reason and
treatment)_____________________

F. MEDICATIONS, has Subject taken any medications regularly, (if
yes, record the date, name of the medication, the reason for taking it,
and route of administration) prompt for prescription drugs, including
insulin and type.
__________________________________________________ _____
__________________________________________________ _____
__________________________________________________ _____
Prompt for hormone therapy or nutritional supplements including
oral contraceptives and hormone replacement therapy:
__________________________________________________ _____
__________________________________________________ _____
__________________________________________________ _____
Prompt for homeopathic/herbal therapy:
__________________________________________________ _____
__________________________________________________ _____
__________________________________________________ _____
Prompt for eyedrops
__________________________________________________ _____

SUMMARY OF ABOVE RESPONSES; HAS THE SUBJECT BEEN
EXPOSED TO ONE OF THE MEDICATIONS OF BOVINE OR OVINE
ORIGIN, AND OR ANY DESICCATED ANIMAL ORIGIN?

G. Has Subject ever been tested for allergy using
needles?________________

H. Has Subject ever received a treatment involving a course of
injections?_______________________________________ ________________
(If yes, record year, name of therapy, frequency, reason)

I. Has Subject been VACCINATED?_______________________________
(If yes, give name of vaccine, and route.)

J. Has Subject ever undergone lumbar puncture or electrical
tests involving needles?__________________________________________ ______

K. Has Subject ever undergone acupuncture?____________________

L. Has Subject ever used drugs by needle?_____________________

M. Has Subject ever been tattooed, ear or body piercing of
anykind?______

4. FAMILY HISTORY PEDIGREE

(indicating years of birth and death) Subjects grandparents,
Subjects parents and parents siblings, Subject and siblings Subjects
children.

A. From the genealogy, record whether the Subject has been
married more than once? __________________________________________________ _

B. Have any of the BLOOD relatives of the Subject included in
the Pedigree above died with dementia (or remain alive with
dementia)?________________________________________ _________________

C. Have any of these individuals been diagnosed as having
Creutzfeldt-Jakob disease, and or any other T.S.E.?________________
(if so, give name, address, and apprx. date of illness)

D. CONFIRMATION OF FAMILY HISTORY OF CJD OR OTHER TSE'S

(1=definite 2=probable 3=possible 4=unable to confirm 5=not a
case)
__________________________________________________ _____________

E. Has Subject had social contact, through family, friends or
work, with someone else who developed CJD?_____________________________
(record the persons name and the apprx. date of illness.)

F. Confirmation of social contact with case of CJD?____________

G. FOR NON-U.K. cases only, Has Subject lived in or visited the
United Kingdom during the period 1980-1999?________________________
(if yes, record dat and duration of visits)

DIETARY HISTORY
A. Has Subject ever been a vegetarian for a period of 1 year or
more? (if yes), during what period was Subject vegetarian, and did the
Subject eat any meat or fish at all during this time?______________

B. Does Subject have a history of any other dietary
restrictions or eccentricities? (record apprx. dates and details of
restrictions:
__________________________________________________ _______
__________________________________________________ _______

C. How many years did Subject eat school
dinners?__________________
(give dates)

D. Has the Subject ever eaten animal food or pet
food?_____________________________________________ ___________
(If yes, record the types of food and dates)

E. How did/does the Subject like their steak
cooked?________________

(1=well done 2=medium 3=medium-rare 4=rare 5=did not eat steak)

F. How often does/did Subject cut or chop up raw red meat or
bones, in their work or in their home?_______________________________

G. (For each of the following food items) How often did Subject
eat (food item)?
BRAIN_________________(specify animal which organ came from)
EYE___________________
TRIPE_________________
LIVER_________________
KIDNEY_______________
SWEETBREADS_________(pancreas)
ROAST LAMB, LAMB COPS, LAMB STEW, ROAST PORK, HAM,
BACON, ROAST BEEF, STEAK, BEEF STEW, MINCED BEEF, VEAL,
VENISON, CHICKEN, BURGERS, MEAT PIES SUCH AS PORK, VEAL,
AND HAM, STEAK AND KIDNEY, CHICKEN AND MUSHROOM,
***GOTS, MEAT SAUSAGES, BLACK PUDDING, HAGGAS, LIVER
SAUSAGE OR PATE', STEAK TARTARE (raw minced steak with raw egg)
carpaccio, CHEESE, COWS MILK (1=drinks milk/eats breakfast
cereal with milk, 2=only in tea/coffee, 3=NO)_______________________
__________________________________________________ __________
__________________________________________________ __________
__________________________________________________ __________
__________________________________________________ __________
__________________________________________________ __________

5. EXPOSURE TO ANIMALS:

CONTINUED

[flatfish]

5. EXPOSURE TO ANIMALS:
A. Did the Subject every HUNT, DRESS, AND EAT,
DEER____________________
ELK_____________________
SQUIRREL_______________
OTHER__________________
(if so, list location, and year, and list any specific organs
that the Subject may have considered to be a delicacy).

B. Did the Subject share a home with:
CATS________________
DOGS________________
FERRETS_____________

C. Has the Subject worked or stayed for more than one week on a
farm? (1=lived or worked, 2=stayed, 3=NO) If YES, did Subject work or
help with;

CATTLE______________
SHEEP________________
GOATS_______________
PIGS__________________
CHICKENS____________
MINK_________________
(If yes), did Subject participate in:
Treating cattle for Warble fly?______________
Dipping sheep?_________________________
Crop Spraying?________________________
(If the Subject took part in any of these activities), record
dates, places and details of the activity including agents
used; __________________________________________________ ______
__________________________________________________ ______
__________________________________________________ ______

D. Has the Subject used any of the following;
BONEMEAL__________________
HOOF AND HORN____________
DRIED BLOOD________________
MANURE____________________
(if yes, record the item used and dates)

E. Has Subject ever DISSECTED ANIMAL EYES, for example at school?
__________________________________________________ _______

6. RESIDENTIAL HISTORY (begin with the most recent residence and work
backwards)
From(dd/mm/yy) TO(dd/mm/yy) STREET TOWN COUNTY STATE
(include zip code).
__________________________________________________ ______
__________________________________________________ ______
__________________________________________________ ______
__________________________________________________ ______
__________________________________________________ ______
__________________________________________________ ______
__________________________________________________ ______
__________________________________________________ ______

7. OCCUPATIONAL HISTORY OF SUBJECT;
(begin with most recent occupation and work backwards)
FROM(dd/mm/yy) TO(dd/mm/yy) NAME OF EMPLOYER TOWN
DESCRIPTION OF WORK;
__________________________________________________ _______
__________________________________________________ _______
__________________________________________________ _______
__________________________________________________ _______
__________________________________________________ _______
__________________________________________________ _______
__________________________________________________ _______

A. Has the Subject ever worked in farming, the meat industry,
the pharmaceutical industry, or in a hospital?

B. Has the SUBJECT, their PARTNERS or PARENTS ever worked in the
following areas;

medical/pharmaceutical/nursing/dentistry_____________________________
animal laboratories______________________________________ ________
pharmaceutical laboratories______________________________________
other research laboratories______________________________________
animal farming___________________________________________ ________
veterinary medicine__________________________________________ ____
meat industry__________________________________________ __________
(BUTCHER'S/ABATTOIRS/RENDERING PLANTS, ETC) and or
(catering other occupation involving animal products, including
leather)?
__________________________________________________ ____
__________________________________________________ ____
__________________________________________________ ____
__________________________________________________ ____
__________________________________________________ ____


*** NOTE ***

please include venison/sheep/lamb and the bovine to any of the above
questions.

example=brain tanning deer/elk hide or any other topics
that pertain to transmission of TSEs

_________________________________________________

example=antler velvet nutritional supplements

_________________________________________________

_any_ nutritional supplements??? name/ingredients

_________________________________________________

example=elk/deer brains ie/scrambled, sandwich or otherwise

_________________________________________________

COSMETICS-ie facial creams, eye make-up etc.
name/brand/ingredients

__________________________________________________

MEDICAL-ENDOSCOPY WORK OF ANY TYPE

__________________________________________________

Terry S. Singeltary Sr.
P.O. Box 42
Bacliff, Texas USA 77518


================================================== =

CONTINUED***

[flatfish]

Subject: Re: Tracie CJD Foundation
Date: Tue, 5 Nov 2002 15:09:29 -0500
From: "Tracie Kedzierski"
To: "Terry S. Singeltary Sr."
References: <3DC730DF.8010308@wt.net>
<018601c284f7$27a04a80$0a64a8c0@newportrentalguide .com>
<3DC80F1A.3090808@wt.net>
<000901c28502$fac15c00$0a64a8c0@newportrentalguide .com>
<3DC81FCA.1040403@wt.net>

Terry,

Oh no....I've gone and pissed you off (ha ha)
I just find it better to speak...so 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 ?

Tracie
----- 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???

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
year.......it is a big fat sponge...the agent
continues to eat the brain ......you 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 action........it 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
downfall...

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 chair........you 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
US!
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
them.......like a buzzard to the bone...you 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.)

================================================== ==============


greetings again voice,

then i remind everyone to read this;

'As implied in the Inset 25 we must not assume that transmission
of BSE to other species will invariably present pathology typical
of a scrapie-like disease.'

http://www.bseinquiry.gov.uk/files/y...1/04004001.pdf




TSS



http://www.google.com/search?num=30&...SS&btnG=Search



http://www.google.com/search?svnum=3...Search+the+Web



http://www.ask.com/web?q=cjd+questio...rc=1&o=0&l=dir



http://www.vegsource.com/talk/madcow...ges/91823.html



http://www.fda.gov/OHRMS/DOCKETS/AC/...3923s1_OPH.htm



http://www.fda.gov/ohrms/dockets/doc...-0417-EC-2.htm



http://www.vegsource.com/talk/madcow...s/9912344.html



http://www.vegsource.com/talk/madcow...s/9912306.html




TSS

#################### https://lists.aegee.org/bse-l.html ####################

[ainee]

G'day TSS,
I comend you on your never ending battle to get heard. I know we are comming from different angles - you had a family member die from CJD - while it was myself who had horrific symptoms similar to CJD, experimented with a simple treatment used in the successfull treatment of sheep (and other animals) with PEM, a neurological disease in livestock, which has similar symptoms to CJD.
I survived, and am trying to get heard. I've no such luck so far.

re; Your 2002 Questionnaire -
(I filled one out on the cjdvoice site in 2005 - no-one listened)

Exposure to animals -
I've lived on the land all my life - worked with animals, especially sheep, dipping, drenching, working in the shearing sheds for years handling wool (which can carry toxic chemicals in, forever). I also sprayed noxious weeds with highly toxic chemicals. I had a high rate of Cadmium detected in a medical test. I wonder where I could have got Cadmium from.

My symptoms were like those of Listeriosis - my test was clear - doc did say that I may have had something in the past. I had delivered many dead lambs from ill sheep for years - yes, I could have been in contact with Listeriosis in the past - but in 2001, I was suffering and displaying symptoms similar to our sheep - give or take a few and put into human terms.

The only things which you forgot to mention in the Questionnaire - injury and/or toxins.
Several CJD case studies of those who'd died from CJD, had falls or accidents, injuring their head or spine, prior to displaying any symptoms. This information I believe has been overlooked.
I found in my research, that injury to the head and spine, can cause damage to the carotid body (in the neck) and can cause an imbalance of carbon dioxide and oxygen to the brain. So no oxygen and more toxin - means death to the brain.

Our sheep got their brain wasting/decaying disease from eating toxic plants - there was no contact with anything to do with CJD.
But the toxin destroyed the sheep's brain - just like CJD does in humans, regardless of how humans acquire it or what CJD variety it is.

Similar symptoms - why not similar treatment?

* You must keep pushing -
- I certainly will keep pushing

*Don't even hint at it as it will be denied and laughed at -
- yep, I'm laughed at - but has anyone else experimented with a simple sheep treatment and reversed horrific neurological symptoms?

* You ask questions that everyone else is too afraid to ask -
- and I give my information which is ignored by many - But like you, I will never give up trying to get heard by someone who is interested.
One day someone may put 2 and 2 together.

ainee.