Wednesday, September 9, 2009

multi-state study of Creutzfeldt-Jakob disease Loma Linda University July 9, 1991

2001


Subject: CJD vs vCJD ('chosen ones') and why sporadic CJD will stay just that, 'unknown'...
Date: Sun, 18 Feb 2001 11:22:27 -0800
From: "Terry S. Singeltary Sr." Reply-To: Bovine Spongiform Encephalopathy
To: mhtml:%7B33B38F65-8D2E-434D-8F9B-8BDCD77D3066%7Dmid://00000208/!x-usc:mailto:BSE-L@uni-karlsruhe.de

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

Greetings All,

I hope you don't mind, but for the next few days i will pass along some documents i think some of you may find of interest. for those of you that do not wish to read, please just delete. some may even have these documents.

what i wish to try and show, is that some 20 years into this, and we are no further along in the science of TSEs, than we were 20 years ago, AND WHY.

i still believe 'in the bottom of my heart' that somewhere, in some place and time, either in a room, a walk in a park, or over the phone, somewhere it was said,

'this can/will never happen'

'it will stay unknown'

'only the chosen ones'

i believe that that this was collaborated between more than just one Country, and it was agreed,

'this can/will never happen'.

for now, i have no proof of this, but over time i am putting together documents between Country's that could show just this. As time goes by, more documents may appear. so, i feel the 'smoken gun' is out there, somewhere, and hopefully someone, somehow, will send this to me, as my biggest goal is to shove this sporadic CJD where it belongs, and i will leave that to your imagination...

i am going to show a series of letters dating back to 1991, from a death that occurred some years previously from a confirmed case of CJD. what i find strange is the correspondence between the victims spouse and the 'medical officials' and the importance of 'NOT' to mention the word Creutzfeldt-Jakob disease in a particular CJD study.

AS well, the questionnaire and the questions that are asked. MIND you this is in 1991, and today, where are we i ask??? WHY are we no further ahead??? i also find it odd, that this Family has still, in the year 2001, after participating in this study, have not had the results of the study they participated in, sent to them???

i still wonder to this day, why we and all the CJD families i have spoken with, why none of us were asked to fill out some sort of questionnaire in regards to the death of our loved ones and CJD and source??? (they must have all the answers)

then, i will pass research documents from the 'prion gods' starting in 1971. again, some of you may have these, and some of you may find this 'boring', so please just delete...

'oh what tangled webs we weave, when all we do is practice to deceive.'

Terry S. Singeltary Sr., Bacliff, Texas USA


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


July 9, 1991


Loma Linda University

A Seventh-day Adventist Institution

xxxxxxx

Dear xxxx:

Creutzfeldt-Jakob Disease Study Neuroepidemiology Section Department of Neurology, Rm 1580 School of Medicine Loma Linda, California 92350

July 9, 1991

The Department of Neurology of Loma Linda University is conducting a multi-state study of Creutzfeldt-Jakob disease to identify risk factors for this disease. This study is federally funded by a grant from the National Institute of Neuroiogic Disorders and Stroke (NINDS) of the National Institutes of Health (NIH).

We recently contacted the Texas Department of Health in Austin and according to their records xxxxx xxxxxx had Creutzfeldt-Jakob disease.

We would like for you to participate in this study of Creutzfeldt-Jakob disease. This research project may be of great benefit in preventing this disease. The success of this study depends upon your participation, which will involve signing a consent form (see enclosed consent form) to release the medical records of xxxx xxxxx and participating in an interview about xxxxx xxxxxx. This interview will be arranged at your convenience. Participation in this study is at no cost to you. If you agree to participate in this study, you are still free to refuse to answer any specific question.

In order to release the medical records of xxxx xxxxx, we need to know the name(s) of the hospital (s) where xxxx xxxxx was examined/diagnosed for Creutzfeldt-Jakob disease. Please fill out the enclosed hospital form indicating where xxxx xxxxx was examined/diagnosed for Creutzfeldt-Jakob disease.

All information supplied will be held in strictest confidence. All information will be pooled and no one person's answers will be identifiable, since code numbers and not names will be used in all analyses.

If you agree to participate in this study, please sign and complete the attached consent form and hospital form and return them to us. A self-addressed, stamped envelope is enclosed for your convenience.

If you have any questions about this study, please feel free to call us collect at (714) 799-2146.

Sincerely,

Carey G. Smoak, MSPH Project Coordinator ===================== Loma Linda University

A Seventh-day Adventist Institution

xxxx xxxx


Dear xxxxx:

Creutzfeldt-Jakob Disease Study Neuroepidemiology Section Department of Neurology, Rm 1580 School of Medicine Loma Linda, California 92350

October 21, 1991

Thank you for agreeing to participate in the Creutzfeldt-Jakob, disease study. Your participation in this important research project is greatly appreciated.

In the next few months we will be contacting you to arrange an interview about xxxx xxxxx. In order to prepare for the interview we need some information regarding xxxx xxxxx.

Please fill out the enclosed form and return it to us. A self-addressed, stamped envelope is enclosed for your convenience. It is very important that you return al1 of this information to us as soon as possible.

If you have any questions, please feel free to call us collect at (714) 799-2146.

Sincerely,

Zoreh Davanipour, DVM, PhD Principal Investigator Associate Professor & Director, Neuroepidemiology Section

Carey G. Smoak, MSPH Project Coordinator


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


Loma Linda University

A Seventh-day Adventist Institution

xxxx xxxxx

Dear xxxx xxxxx:


Creutzfeldt-Jakob Disease Study Neuroepidemiology Section Department of Neurology, Rm 1580 School of Medicine Loma Linda, California 92350

(714) 799-2146 October 30, 1991

Thank you for agreeing to participate in the Creutzfeldt-Jakob disease study. We are enclosing a summary of the questions that we will be asking you about xxxx xxxxx. All information will be kept confidential. Please think carefully about these questions. This list is provided so that you will have some time to compose your thoughts. Please keep this list for yourself; do not mail it back to us.

Please note that the interviewers are only performing the task of asking questions and do not have any knowledge about study methodology or the disease. In order to maintain high scientific quality of the data and to keep the interviewers unbiased during the interview session, it is absolutely necessary that you _do not use_ the word Creutzfeldt-Jakob disease. You may describe the illness that xxxx xxxxx had, but please _do not use_ the word Creutzfeldt-Jakob disease.

Should you wish to discuss with someone about Creutzfeldt-Jakob disease, please feel free to call us collect at (714) 799-2146 or (714) 799-2152. Thank you.

Sincerely, Zoreh Davanipour, DVM, PhD Principal Investigator Associate Professor & Director, Neuroepidemiology Section

Carey G. Smoak, MSPH Project Coordinator


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


Loma Linda University

A Seventh-day Adventist Institution

xxxx xxxxxx

Dear xxxxx:

Creutzfeldt-Jakob Disease Study Neuroepidemiology Section Department of Neurology, Rm 1580 School of Medicine Loma Linda, California 92350

November 11, 1991

Thank you for agreeing to participate in the Creutzfeldt-Jakob disease study. Your participation in this important research project is greatly appreciated.

I just wanted to remind you that I have re-scheduled your interview for xxxx xxx.

If you have any questions, please feel free to call me collect at (714) 799-2152.

Sincerely,

Carey G. Smoak, MSPH Project Coordinator


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


Loma Linda University A Seventh-day Adventist Institution

Creutzfeldt-Jakob Disease Study Neuroepidemiology Section Department of Neurology, Rm 1580 School of Medicine Loma Linda, California 92350

SUMMARY OF QUESTIONS

1. Ethnic, religious and educational background.

2. Lifetime occupational history (specific jobs? when? for how long?)

3. Animal contacts (animals, animal products and sick animals):

a. at work

b. during hobbies or sports (for example hunting, fishing...)

c. as pets

Any contacts with animals: such as sheep, goats, cows, pigs, horses, birds, fish, rodents, rabbits, deer, mink, monkeys, dogs, cats, etc. (types of animals? when? how often?).

Any contacts with animal products: such as brains, eye balls, livers, kidneys, hearts, lungs, spinal cords, skin, wools, furs, stomachs, intestines, meats, muscles, spleens, lymphatics, etc. (types of animal products? when? how often?).

Any contacts with sick animals (including dogs, cats, laboratory animals, birds, large animals) with neurological problems or illnesses (types of sick animals? when? how often?).

Lifetime diet history, until July, 1988: Frequency of meat consumption? How often? Types of meat consumed: such as lamb; beef; sea food; processed meats like sausage, hot dogs, salami...; deer, rabbit; organ meats, etc. Any major changes in diet, such as becoming a vegetarian or being on weight loss programs. How was meat prepared/cooked (such as barbecued/grilled, smoked, fried, broiled, roasted/baked, raw, simmered, etc.)?

5. Major illnesses and causes of death among blood relatives.

6. Medical history:

We are interested in the following medical history for three time periods:

1) birth through age 14,

2) age 15 up to January, 1987, and

3) since January, 1987.

a. major diseases (such as cancer, heart disease, stroke, diabetes, neurological problems, mental problems, infections, etc.)

b. allergies (drug allergies, food allergies, hay fever, hives)

c. accidents and injuries

d. head trauma (when?, age?, how often?, nature of trauma, affected part, severity of trauma, x-rays taken,? CT scan done,? MRI/NMR done,? did loss of consciousness occur?, did loss of memory occur?)

e. other trauma besides head trauma (when?, age?, how often?, nature of trauma, affected part, severity of trauma, x-rays taken,? CT scan done,? MRI/NMR done,? did loss of consciousness occur?, did loss of memory occur?)

f. hospitalizations (reason for hospitalizations), surgeries (types of anesthesia used), sutures (stitches)

g. insects or animal bites or stings

h. eye examinations

i. glaucoma tests (frequency of tests; types of tests, such as: contact tonometry versus non-contact tonomerty/air puff method)

j. childhood illnesses, vaccinations

k. dental work (oral operations & root canal, types of anesthesia used)

7. Medical products:

We are interested in the following medical products for three time periods:

1) birth through age 14,

2) age 15 up to January, 1987, and

3) since January, 1987.

a. heart valve products if undergone heart surgery

b. eye products (contact lenses)

c. eye surgeries (cornea transplant)

d. suture material and collagen used in surgeries

e. hormones: thyroid, pancreatic (insulin and glucagon), human growth hormone, other pituitary hormones (oxytocin, vasopressin, gonadotropins, corticotropin, ACTH), adrenal and ovarian hormones (cortisone, epinephrine, estrogen), specific estrogen hormones called Premarin, Estrace or Estraderm (women only)

f. head, face, neck, brain or pituitary gland operation (when? how often?)

g. blood thinning (anticoagulant) and blood clot dissolving products (heparin, urokinase, alteplase, tissue plasminogen activator/TPA)

h. pancreatic enzymes (pancreatin, trypsin, chymotrypsin)

i. blood transfusions and red blood cell products, transfusions of platelet/plasma products

j. active & passive immunizations (vaccinations)

k. nutritional supplements (vitamins, minerals)

8. Lifetime residential history: where? when? how long? name of cities? zip codes? At each residence identify the source of drinking water: such as city water supply, private well, community well, bottled water. Identify pest control measures at each residence: such as ants, roaches, earwigs, spiders, termites, bees, yellow jackets, mice, rats, etc.

9. Lifetime travel history OUTSIDE of the U.S.A. (where? when? for how long?).

Thank for agreeing to participate in this interview. This page is enclosed for you to make any notes.


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


Loma Linda University

A Seventh-day Adventist Institution

Creutzfeldt-Jakob Disease Study Neuroepidemiology Section Department of Neurology, Rm 1580 School of Medicine Loma Linda, California 92350

Neurology Research Center 11175 Mt View Ave, Suite O Loma Linda, CA 92354 909-799-2152 909-799-2149 (fax)

March 21, 1994

xxxx xxxxx

Dear xxxx,

Thank you for participating in the Creutzfeldt-Jakob disease study. Your participation and interest in this important research project are greatly appreciated.

The research project on Creutzfeldt-Jakob disease is progressing very well. We have met and even exceeded our goal of interviewing 100 families who had a relative with Creutzfeldt-Jakob disease. In fact, we have interviewed 119 families who had a relative with Creutzfeldt-Jakob disease. Moreover, we have interviewed 105 control subjects (i.e., non-demented subjects) and are in the process of finding additional control subjects and interviewing them to compare the data with the individuals who had Creutzfeldt-Jakob disease. We expect to complete this research project in a couple of years and then we will analyze all of the information that we have collected. Once research results become available we will share the information with you and your family, if you so indicate on the enclosed form. Of course, no identifying information on any subject will be released.

In the near future we may be contacting you to gather more information on just a few items about your relative who had Creutzfeldt-Jakob disease. For completeness of the data and the success of this scientific research we need you to verify the information on the following page and return it to us in the enclosed self-addressed, stamped envelope.

If you have any questions please feel free to call us collect at (909) 799-2152. Thank you.

Sincerely Yours,

Zoreh Davanipour, DVM, PhD Principal Investigator & Director, Neuroepidemiology Section

Carey G. Smoak, MSPH Project Coordinator

TSS


############ http://mailhost.rz.uni-karlsruhe.de/warc/bse-l.html ############



HISTORY OF USA QUESTIONNAIRE ;


http://cjdquestionnaire.blogspot.com/




Friday, September 4, 2009

FOIA REQUEST ON FEED RECALL PRODUCT 429,128 lbs. feed for ruminant animals may have been contaminated with prohibited material Recall # V-258-2009


http://madcowfeed.blogspot.com/2009/09/foia-request-on-feed-recall-product.html



Saturday, August 29, 2009

FOIA REQUEST FEED RECALL 2009 Product may have contained prohibited materials Bulk Whole Barley, Recall # V-256-2009


http://madcowfeed.blogspot.com/2009/08/foia-request-feed-recall-2009-product.html



Sunday, September 6, 2009

MAD COW USA 1997 SECRET VIDEO

SEE ANOTHER VIDEO THAT SHOWED IN CANADA, BUT NOT USA, ABOUT ANOTHER USA TSE COVER-UP

MORE BRAINS NOT TESTED PROPERLY, key brain parts missing. ...


http://madcowusda.blogspot.com/2009/09/mad-cow-usa-1997-video.html



SEE THIS DAMNING VIDEO AT BOTTOM OF ;

Monday, July 27, 2009

U.S.A. HIDING MAD COW DISEASE VICTIMS AS SPORADIC CJD ?


http://creutzfeldt-jakob-disease.blogspot.com/2009/07/usa-hiding-mad-cow-disease-victims-as.html



Wednesday, September 9, 2009

Co-existence of scrapie prion protein types 1 and 2 in sporadic Creutzfeldt-Jakob disease: its effect on the phenotype and prion-type characteristics

sCJDMM1-2 should be considered as a separate entity at this time.

Thank you very much !

SEE FULL TEXT ;


http://cjdusa.blogspot.com/2009/09/co-existence-of-scrapie-prion-protein.html




Creutzfeldt-Jakob Disease Surveillance in Texas


http://cjdtexas.blogspot.com/




TSS

Friday, November 30, 2007

CJD QUESTIONNAIRE USA CWRU AND CJD FOUNDATION

##################### 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 theUSA 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 folksjudge for yourself. maybe i'm just being an extremist as some say???

then again, maybe not...TSS


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 IslanderAmerican-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 Foundationin 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


1.



NAME______________________________________



STREET___________________________________



TOWN_____________________________________


phone____________________________________



A. What is the subjects SURNAME____________________________


B. What is the subjects status? ___________________________

(1=suspect/confirmed CJD, 2=hospital control (specifydiagnosis), 3=GP control).C. If the subject is a (suspect) case, are they alive on theday 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 subjectbecame 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 eyeoperations 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 operationsundergone, the year of the first such operation and the year of the lastsuch operation. When no such operations were undergone record 0 for thenumber 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 aHospital_______________________


E. Has Subject ever been to see psychiatrist

(reason andtreatment) _____________________




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 eye drops


__________________________________________________




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 ofinjections?


_______________________________________



(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 any kind?____



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 inthe 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 theUnited 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 petfood?


_____________________________________________


(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:



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), recorddates, places and details of the activity

including agentsused;


__________________________________________________


__________________________________________________


__________________________________________________



D. Has the Subject used any of the following;


BONE MEAL__________________


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 TOWNDESCRIPTION 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 thefollowing 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


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

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" S


ent: 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 message board 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 Message Board 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 witha 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 at least a million bovine tested as soon as possible and agressively seeking this disease. The big players are coming out of the wood work 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 agreat 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/yb/1991/01/04004001.pdf




TSS



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




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

http://cjdusa.blogspot.com/




CREUTZFELDT JAKOB DISEASE MAD COW BASE UPDATE USA


http://cjdmadcowbaseoct2007.blogspot.com/



USA NOR-98 SCRAPIE UPDATE AUGUST 31, 2007 RISES TO 5 DOCUMENTED CASES

http://nor-98.blogspot.com/



MADCOW USDA the untold story

http://madcowusda.blogspot.com/



Wednesday, February 04, 2009


Creutzfeldt-Jacob disease presenting as severe depression: a case report


http://creutzfeldt-jakob-disease.blogspot.com/2009/02/creutzfeldt-jacob-disease-presenting-as.html



A case-control study of sporadic Creutzfeldt-Jakob disease in Switzerland: analysis of potential risk factors with regard to an increased CJD incidence in the years 2001-2004



http://creutzfeldt-jakob-disease.blogspot.com/2009/02/case-control-study-of-sporadic.html



Sunday, August 10, 2008
A New Prionopathy OR more of the same old BSe and sporadic CJD



http://creutzfeldt-jakob-disease.blogspot.com/2008/08/new-prionopathy-or-more-of-same-old-bse.html



Sunday, March 16, 2008
MAD COW DISEASE terminology UK c-BSE (typical), atypical BSE H or L, and or Italian L-BASE



http://bse-atypical.blogspot.com/2008/03/mad-cow-disease-terminology-uk-c-bse.html


HUMAN and ANIMAL TSE Classifications i.e. mad cow disease and the UKBSEnvCJD only theory JUNE 2008



snip...



Tissue infectivity and strain typing of the many variants Manuscript 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. ...



snip...



http://cjdmadcowbaseoct2007.blogspot.com/2008/06/human-and-animal-tse-classifications-ie.html



Elsevier Editorial System(tm) for The Lancet Infectious Diseases Manuscript Draft Manuscript Number: Title: HUMAN and ANIMAL TSE Classifications i.e. mad cow disease and the UKBSEnvCJD only theory Article Type: Personal View Corresponding Author: Mr. Terry S. Singeltary, Corresponding Author's Institution: na First Author: Terry S Singeltary, none Order of Authors: Terry S Singeltary, none; Terry S. Singeltary


Abstract:


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 2007.
snip...


see full text 31 pages ;



http://www.regulations.gov/fdmspublic/ContentViewer?objectId=090000648027c28e&disposition=attachment&contentType=pdf



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