Wednesday, December 3, 2014

University of Texas looks for clues after 100 human brains are lost

updated ;

 Case of 100 missing brains in Texas takes odd twist

 100 missing brains found

 
The main bell tower at the University of Texas in Austin. The 100 brains that were missing from the Austin campus have been found at the University of Texas in San Antonio. (Harry Cabluck / Associated Press)

 
By Michael Muskal contact the reporter This article is related to: University of Texas at Austin

 
Like all good mysteries, the case of the 100 missing brains in Texas has taken a new twist..

 
First, word had come that about half of the 200 brains kept at a university research center had gone absent without leave. Then a professor said Wednesday they had been located – at another school.

 
Now this update: The brains were destroyed more than a decade ago.

 
The brains had mostly come from patients at a state mental hospital and were used for research, including the study of Alzheimer’s disease. Part of the cache is still stored at the Animal Resources Center at the University of Texas in Austin.

 
Earlier on Wednesday, a professor at the Austin school told reporters that the brains had been sent to the University of Texas in San Antonio. Hours later, that school denied receiving them, suggesting the brains might have gone to another, separate facility, the University of Texas Health Science Center in San Antonio. A spokesman there said they were investigating.

 
But before that investigation was completed, the mystery was solved.

 
“A preliminary university investigation has revealed that UT environmental health and safety officials disposed of multiple brain specimens in approximately 2002 in accordance with protocols concerning biological waste,” according to a statement from the University of Texas at Austin, where the story began.

 
The brains, which were received in the 1980s, were destroyed because they were not suitable for research.

 
“This occurred prior to the renovation of the Animal Resources Center, where the specimens had been stored in a secure location,” according to the school.

 
“We believe the workers disposed of between 40 and 60 jars, some of which contained multiple human brains, and worked with a biological waste contractor to do so safely,” the school said.

 
The story of missing brains had been driven in part by initial reports that one of the brains could have belonged to Charles Whitman, who climbed a tower on the Austin campus and killed 16 people in a deadly sniper attack. Whitman, a former Marine, was killed by police after his 1966 massacre.

 
“There is no evidence we ever received Whitman’s brain, “ spokesman Gary Susswein, told the Los Angeles Times.

 
Follow @latimesmuskal for national news.

 
Copyright © 2014, Los Angeles Times

 
UPDATE

 
1:20 p.m.: This post has been updated to report that the missing brains had been destroyed.

 
http://www.latimes.com/nation/nationnow/la-na-missing-brains-found-in-texas-20141203-story.html



From: Terry S. Singeltary Sr.
Sent: Wednesday, December 03, 2014 1:34 PM
Subject: University of Texas looks for clues after 100 human brains are lost
 

University of Texas looks for clues after 100 human brains are lost
 
Posted: 7:11 p.m. Tuesday, Dec. 2, 2014
 
By Ralph K.M. Haurwitz and Asher Price - American-Statesman Staff
 
Twenty-eight years ago, the Austin State Hospital transferred about 200 brains stored in jars of formaldehyde to the University of Texas for educational and research purposes. Now about half are missing, apparently including the brain of Charles Whitman, who went on a murderous shooting spree from the UT Tower in 1966.
 
“We think somebody may have taken the brains, but we don’t know at all for sure,” Tim Schallert, a psychology professor, said Tuesday.
 
His co-curator of the collection, Lawrence Cormack, also a psychology professor, said, “It’s entirely possible word got around among undergraduates and people started swiping them for living rooms or Halloween pranks.”
 
The mystery is explored in a new book, “Malformed: Forgotten Brains of the Texas State Mental Hospital.” Author Alex Hannaford traces the history of the collection, such as it could be determined, and photographer Adam Voorhes provides striking images of the 100 remaining brains.
 
“We are committed to treating the brain specimens with respect and are disheartened to learn that some of them may be unaccounted for,” UT said in a statement. “The university plans to investigate the circumstances surrounding this collection since it came here nearly 30 years ago. The brains that are now on campus are actively used as a teaching tool and carefully curated by faculty.”
 
Under a 1986 agreement with the state hospital, UT agreed to take “temporary possession” of the collection. The agreement called for the hospital to remove patient-identifying data to protect confidentiality as required by state and federal laws.
 
Nonetheless, it seems likely that Whitman’s brain was part of the collection. “It would make sense it would be in this group,” Schallert said, adding, “We can’t find that brain.”
 
Whitman’s rampage would eventually take 16 lives, including those of his mother and wife, whom he stabbed to death before climbing the Tower. His note requesting an autopsy to determine if he had a brain tumor confirmed just that, although it’s doubtful the pecan-sized growth had anything to do with his impulse to kill, some medical experts have said.
 
According to an article posted by KUT, a unit of UT, the state hospital amassed the collection of brains through the efforts of one of its physicians, Coleman de Chenar, presumably by harvesting them from patients at the psychiatric hospital who died in the 1950s, ’60s and ’70s. The hospital apparently had run out of storage space.
 
“I only had room for 100,” Schallert said of his psychology lab, which eventually was assigned the collection, so half of it was transferred to the basement of the university’s Animal Resources Center building.
 
“They are no longer in the basement,” Cormack said.
 
The 100 brains still in UT’s possession have been transferred to the Norman Hackerman Building, where they are being scanned with high-resolution magnetic resonance imaging equipment.
 
“These MRI images will be both useful teaching and research tools,” Cormack said. “It keeps the brains intact.”
 
Just how useful preserved brains can be “depends a great deal on how they were prepared, how well they have been preserved and maintained and how well the original donors were characterized,” said Vahram Haroutunian, who directs the Mount Sinai NIH Brain and Tissue Repository in New York. “How well were diagnoses made, how good are the records on them, can one go back and use the records to do more, to rediagnose using more modern standards for diagnosis?
 
Social media reaction: UT missing 100 human brains The missing UT brains were preserved in a solution of formaldehyde in water. That practice makes brain tissue suitable for various kinds of research, but frozen brains are better for genetic analysis, Haroutunian said.
 
About half of the 1,800 brains at the Mount Sinai brain bank are preserved in formalin, Haroutunian said. The other half are frozen.
 
The 1986 agreement said UT would receive autopsy reports relating to the collection.
 
“It would be tremendously helpful, but I don’t believe we have them,” Cormack said. “When Tim (Schallert) got involved, all that existed were the brains. There were no associated records” other than brief notations such as ‘Parkinson’s disease’ or ‘Alzheimer’s.’ There is no psychiatric information, and that is a tragedy. Whoever first got the autopsy reports may have put them somewhere and not told anyone. At this point that’s just a mystery.”
 
Questions about the collection began to emerge in 2011, when Voorhes, on assignment for Scientific American magazine, visited UT to photograph brains. Schallert showed him a glass cabinet filled with brains, in a closet shared with chemistry materials. Some of the brains were from people with Down syndrome or meningitis.
 
“It shocked me,” Voorhes said, that the brains had come through the mental hospital, given that some of those diseases are not treated as mental illness today. “I was shaken.”
 
He said he felt they were “very rare, very special and should be documented.” He contacted Hannaford, a friend, and they collaborated on the book.
 
As for Whitman’s brain, Cormack isn’t convinced it was ever in the collection. “Frankly,” he said, “to me it smells of urban legend.”
 
 
 
 
 
 
 
 
that’s one way to destroy any suspect CJD TSE prion disease brain, in a state that has the highest number of _documented_ mad cows, and nvCJD victims. ...just saying.
 
Please see; *** NIH Lacks Uniform Protection of Research Samples, Committee Leaders Say ***
 
From: TSS
 
Subject: Re: NIH says it will preserve CJD brains
 
Date: June 21, 2005 at 9:54 am PST
 
FOR IMMEDIATE RELEASE CONTACT: Press Office Tuesday, June 21, 2005 202-225-5735
 
*** NIH Lacks Uniform Protection of Research Samples, Committee Leaders Say
 
Few Safeguards in Place Despite Enormous Potential Value
 
WASHINGTON - The research and handling of human tissue samples at the National Institutes of Health (NIH) appears to be largely ungoverned and there is almost no accountability for damaged or lost samples, according to leaders of the House Energy and Commerce Committee.
 
In a letter to NIH Director Elias Zerhouni, M.D., lawmakers said they were "extremely concerned" by "a fairly loose, ad-hoc approach" to the samples, which could hold significant potential for research to combat any number of illnesses or disease. The members of Congress are seeking extensive information detailing the scope of the samples and an estimate of those lost each year at NIH labs.
 
Committee Chairman Joe Barton, R-Texas, has said he will introduce legislation to reauthorize the NIH and hopes for House passage this year. The last reauthorization of NIH occurred in 1993.
 
The full text of the letter, signed by Chairman Barton, ranking member John Dingell, D-Mich., Oversight and Investigations Subcommittee Chairman Ed Whitfield, R-Ky., and subcommittee ranking member Bart Stupak, D-Mich., follows:
 
June 20, 2005
 
Dear Dr. Zerhouni:
 
The Committee on Energy and Commerce is investigating the adequacy of the National Institutes of Health (NIH) policies for maintaining research samples of human tissue.
 
Our interest in the NIH's maintaining of human tissue samples arises from concerns raised by a scientist at NIH ("NIH scientist"). She contacted the Committee staff about the problems she encountered in locating spinal fluid samples she and her colleagues had collected from over 30 patients with Alzheimer's disease.
 
The NIH scientist had previously worked at the National Institute of Mental Health (NIMH) with the Geriatric Psychiatry Group. She left the NIMH in 1997, and returned to NIH at another institute/center in August 2001. Prior to leaving the NIMH in 1997, she was the principal investigator on drug studies in which she and other colleagues collected spinal fluid from over 30 Alzheimer's patients. Approximately 20 ccs of spinal fluid were collected with each spinal tap. The NIH scientist left the NIMH before conducting these studies and did not use the spinal fluid samples. According to the NIH scientist, these spinal fluid samples were stored in appropriately backed-up freezers when she left NIMH in 1997.
 
Sometime in mid-2004, the NIH scientist, now at another NIH institute/center, asked her former supervisor at NIMH for these patient samples for a study she wanted to conduct. After several months, the former supervisor in January 2005 reported to the NIH scientist that his group would be able to produce 10 subjects total (before and after taps) with only 0.5 cc available for most of the subjects. The former supervisor and the NIMH have been unable to account for what happened to the rest of the spinal fluid samples.
 
The Committee staff has learned from NIH officials that the NIH has no uniform, centralized, and mandatory authority regulating the handling of human tissue samples. Some NIH laboratories keep a written record on the maintenance of these samples, but other NIH laboratories do not. Although there are explicit regulations defined in 42 C.F.R. 72.6 detailing the handling for hazardous biological materials and select agents, there is no explicit policy for the handling and accounting of human tissue samples. In addition, there is no formal inventory control or tracking system at NIH. If a freezer or other storage facility malfunctions and the human tissue samples become unusable, NIH laboratories are not required to account for the disposition of these samples. There is reason to believe that there are cases where NIH loses human tissue samples but has no record of what has been lost. Moreover, the lack of accountability leaves NIH wholly vulnerable to theft and diversion of valuable human tissue samples.
 
We are extremely concerned over what was described to Committee staff by NIH officials of a fairly loose, ad-hoc approach to controlling human tissue samples. These samples were collected under informed consent from human subjects who agreed to provide their tissue because they were told that the sample would be used for a particular purpose in the study, perhaps even used to look at the effects from a particular drug. Some of these samples are extraordinarily precious from a research standpoint because some patients who donated samples had a rare disease. For example, we note that the National Institute of Allergy and Infectious Diseases obtained blood samples from SARS patients as part of its immunological research of SARS and coronaviruses. In addition, NIH intramural researchers sometimes rely on obtaining human tissue samples from sources outside NIH for their laboratory work, or even in their work for Cooperative Research and Development Agreements with third parties.
 
NIH has an obligation to the human subjects and the outside scientific community to require an appropriate tracking system or protocol for all laboratories involved with collection and maintenance of human tissue samples. NIH officials acknowledged to Committee staff the importance of maintaining human research samples because for all published work, scientists are expected to provide access to other researchers to the human tissue samples for the purpose of reproducing the results reached in the scientist's reported study.
 
In light of the concerns about the current handling by NIH of human tissue samples, pursuant to Rules X and XI of the U.S. House of Representatives, please provide the following by no later than Tuesday, July 5, 2005:
 
1. The current total number of human tissue samples maintained at NIH, with a breakdown for each Institute or Center. The current total number of laboratories at NIH that maintain human tissue samples and the current total number of laboratories that have a tracking system accounting in place for the human tissue samples.
 
2. All records dated on or since January 1, 2002, in possession of NIH, including communications within each Institute/Center and each laboratory, relating to any distinct direction, instruction, or policy relating to the handling of human tissue samples.
 
3. All records dated on or since January 1, 2002, in possession of the NIH Office of Intramural Research or the NIH Office of Management Assessment relating to any closed investigation of an allegation relating to the handling or accounting of human tissue samples. Please also state whether there are any open investigations and, if so, which institutes or centers are under investigation.
 
4. The current total amount of expenditures for FY2005 by NIH for maintaining and repairing freezers or other storage facilities containing human tissue samples.
 
5. An estimate of the total number of human tissue samples lost each year at NIH laboratories, and an estimate of the number of human tissue samples lost each year at NIH laboratories because of freezer or storage facility malfunctions.
 
6. A description of any measures NIH is taking to reduce the number of research freezer or other storage facility malfunctions or breakdowns.
 
7. List the names of the ten rarest diseases for which NIH has human tissue samples, the name of the Institute and laboratory that has possession of these samples, and the specific measures currently being taken to track these samples.
 
8. All records relating to the CSF samples collected by the NIH scientist and others in a NIMH study on lithium in early Alzheimer's disease patients. Patient identifiers may be redacted.
 
Additionally, please provide the following:
 
9. Since January 1, 1995, has any official at NIH authorized the use of human tissue samples in possession of NIH to be used by any NIH employee in support of an outside activity?
 
10. Since January 1, 1995, has any official at NIH ever used human tissue samples that were in possession of NIH in connection with any of his or her outside activities?
 
Please note that, for the purpose of responding to these requests, the terms "records" and "relating" should be interpreted in accordance with the attachment to this letter. In addition, we are requesting that following production of the records to the Committee, you make available NIH employees for Committee staff interviews as requested by Committee staff.
 
# # #
 
 
Greetings,
 
>>>The research and handling of human tissue samples at the National Institutes of Health (NIH) appears to be largely ungoverned and there is almost no accountability for damaged or lost samples, according to leaders of the House Energy and Commerce Committee.<<<
 
SO, the loved ones to CJD human TSE deaths that went to the pain of submitting these samples for answers and science, are now to wonder if they even used them at all, and if they were just thrown out like some old used garbage. IF we would have known that, we would have rathered burried them with the deceased, in tact. This is all very disgusting and very disturbing...TSS
 
>>>7. List the names of the ten rarest diseases for which NIH has human tissue samples, the name of the Institute and laboratory that has possession of these samples, and the specific measures currently being taken to track these samples.<<<
 
RATHER interesting, but it would seem that human prion disease should be at the top of the list...
 
TSS
 
----- Original Message -----
 
From: "Terry S. Singeltary Sr." To:
 
Sent: Tuesday, May 31, 2005 5:15 PM
 
Subject: NIH says it will preserve CJD brains
 
##################### Bovine Spongiform Encephalopathy #####################
 
NIH may destroy human brain collection
 
By STEVE MITCHELL, Medical Correspondent | March 24, 2005 at 8:42 AM
 
WASHINGTON, March 24 (UPI) -- The National Institutes of Health may discard part or all of a rare collection that includes hundreds of human brain samples from patients that suffered from a disorder similar to mad cow disease -- unless another researcher or institution takes them on, United Press International has learned. Several scientists said the collection, which is held by the NIH's National Institute for Neurological Disorders and Stroke in Bethesda, Md. -- and includes brains and other tissue samples from people afflicted with the brain-wasting illness Creutzfeldt Jakob disease -- is irreplaceable and could even provide insight into treatments for the fatal disorder. Currently, there is no cure for CJD and patients typically die within a year after symptoms begin.
 
However, NIH officials in control of the collection's fate told UPI the remaining samples are of little scientific value and may be disposed of if researchers outside the agency do not claim it. That position stands in sharp contrast with CJD experts who thought the collection should be preserved.
 
"It's invaluable," said Dr. Paul Brown, former medical director of the NIH's Laboratory for Central Nervous System Studies, whose expertise is in CJD and mad cow disease (also known as bovine spongiform encephalopathy, or BSE).
 
The collection is badly in need of organization and no one is certain how many brains or other tissue samples it contains, said Brown, who worked with the collection since its inception in the 1960's until his retirement last year. There could be brains, blood, spinal fluid and various other tissues from 1,000 people or more, he said. Some of the specimens would be of scientific use today, he said.
 
"This collection has the unique value of stretching back to the beginning of when these diseases were discovered," Brown told UPI, noting that the first samples were obtained in 1963. "It would be as though you had in your hands the possibility of finding out when AIDS started."
 
Bruce Johnson, a former technician at the CNSS lab who worked extensively with the collection before he retired in 2003, told UPI he was told "in two years they (NIH officials)are going to destroy it, if nobody wants it."
 
Eugene Major, acting director of the basic neuroscience program at the NIH, said no specific timeframe had been established.
 
"We have not set a firm deadline date," Major told UPI. "We are working very hard with investigators that we know in order to be able to make sure that whatever we deem is valuable is potentially kept here." Some samples already have been determined not to have any research value and have been "removed and disposed of," he said.
 
Others samples have been given out to Dr. David Asher at the Food and Drug Administration and Pierluigi Gambetti at the National Prion Disease Pathology Surveillance Center in Cleveland, Ohio.
 
Major maintained the remaining collection was not particularly valuable for research. "Whatever had been collected here that has not already been distributed to responsible investigators who could use them really has very little remaining value," he said.
 
Neither Asher nor Gambetti returned phone calls from UPI, but Brown said he thought Asher had received only a dozen or two samples at most and Gambetti had not received much at all.
 
Neil Cashman, a brain-disease researcher at the University of Toronto's Center for Research in Neurodegenerative Diseases -- who has tried to obtain the collection from the NIH -- said it was priceless.
 
"It would be like destroying an art museum," Cashman told UPI. "There's all this information and insight that's locked up in these tissues and if it's destroyed it will be lost forever."
 
The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit organization consisting of more than 40 university and institute researchers from the United States, Canada, United Kingdom and France, also thinks the brain collection is invaluable.
 
"It is the opinion of the Board of Directors ... of The MIND Inc., that the ... brain bank should not be broken up nor destroyed," said Harry E. Peery, MIND's executive director, in a letter to UPI. "We believe that this collection is of inestimable research value and should be kept intact."
 
The institute, at the University of Saskatchewan in Saskatoon, applied for possession of the collection in early 2004, but received a letter from the NINDS indicating the fate of the collection had not yet been determined.
 
"We have heard nothing further since that time" and continue to be interested in acquiring the complete collection, Peery said.
 
CJD belongs to a group of rare, brain-wasting disorders that are little understood, incurable and fatal. This includes mad cow disease in cows, chronic wasting disease in deer and elk. The most infamous of these illnesses in humans is variant CJD, which people can contract from eating beef products infected with the mad-cow pathogen.
 
Although vCJD has infected more than 154 people worldwide, only one case has ever been detected in the United States -- in a Florida woman who is thought to have contracted the disease while living in the United Kingdom. However, the NIH brain samples have never been screened for vCJD -- something Johnson thinks is critically important.
 
"No one has ever looked to see if any American (in the collection) in the past had variant CJD," Johnson said. "You think it would be required that they do that. You think it would be a Congressional mandate that they test these brains: 'Let's see if we've got this disease in our country.'"
 
Johnson noted at least one brain in the collection he personally had examined -- from a French woman collected in 1971 -- showed evidence of possible vCJD infection, but the sample needed further study to be sure.
 
Other samples in the collection include the brains of patients who were only 16 years old when they were diagnosed with CJD. This would be unusual for sporadic CJD, because generally it strikes those over age 60. Variant CJD, on the other hand, typically occurs in patients in their 20s or younger.
 
"I thought it was absolutely vital (to test these brains)," Johnson said. "Maybe there's a dozen cases in there of variant CJD."
 
Major disagreed. "There's really no reason to do that," he said. "The effort it would take to screen those samples ... would not give us any new insights into variant CJD beyond what it is we already know."
 
Johnson said he was frustrated with the NIH administration's lack of interest in preserving the collection or testing for vCJD. "They don't understand," he said, "they honest-to-god don't understand what it's all about."
 
Patient advocates also objected to the possible destruction of the brains.
 
Terry Singeltary, whose mother died of a type of CJD called Heidenhain variant in 1997, said he is outraged and families of other CJD victims probably will be, too.
 
"A lot of these families went through a lot of heartache and a lot of trouble to get these brain samples to the NIH," Singeltary told UPI. "Now they're just going to discard them because they're not of scientific use? That's just asinine. That stuff is valuable information."
 
Graham Steel, vice-chair of the Human BSE Foundation in the United Kingdom, told UPI, "The potential loss of such important tissue samples would be a massive blow for TSE (the group of diseases that includes CJD and BSE) research in the United States. This should not be allowed to happen."
 
Singeltary noted there currently is no cure for these diseases. "If you don't have any answers yet, why would you throw these specimens away?" he asked.
 
He added that more sensitive tests are just becoming available and could help determine the origin of some of the CJD cases. "We've all been sitting around waiting for more sensitive tests to get validated because we want answers," he said.
 
"You know, it must be an embarrassment," Johnson said. "Some Senator is going to eventually say 'What is NIH doing about mad cow disease?' And people are going to scratch their heads and say 'not much'." He added, "What's going to happen (is) one of these senators or their wife is going to develop spontaneous CJD one day and ... there's going to be hell raised and they're going to ask, 'Why isn't NIH working on this?'"
 
--
 
 
 
Groups seek to save NIH brain collection
 
By STEVE MITCHELL, Medical Correspondent | April 1, 2005 at 4:48 PM
 
WASHINGTON, April 1 (UPI) -- Scientists, consumer groups and patient-advocates have embarked upon efforts -- including petitioning members of Congress and seeking storage space at a Canadian university -- to prevent the National Institutes of Health from destroying an irreplaceable collection of human brains from patients afflicted with a condition similar to mad cow disease. As United Press International reported last week, the NIH has begun shopping for a new home for its collection of brains, spinal fluid and other tissues from hundreds of patients around the world who died from Creutzfeldt Jakob disease -- an incurable, fatal, brain-wasting illness. The collection dates back to 1963 and the consensus among scientists in this field is it is invaluable for research and could provide insights that might aid in developing diagnostic tests, treatments or cures for CJD.
 
NIH officials, however, maintain the remaining samples in the collection -- stored in some 30 freezers by the National Institute for Neurological Disorders and Stroke in Bethesda, Md. -- are of little value and may be disposed of if researchers or institutions do not come forward to claim them.
 
Families of patients who died of CJD have reacted with outrage, concerned that the effort mounted to collect the brains in the first place has been all for naught. Several have contacted their respective members of Congress and urged them to step in.
 
"The brains and brain tissue were sent to NIH in good faith for future research and destroying them is an outrage," Terry Singeltary, a patient advocate in Bacliff, Texas, wrote in a letter to Sen. Kay Bailey Hutchinson, R-Texas, and several other members of the state's congressional delegation. Singeltary's mother died of a type of CJD called Heidenhain variant in 1997.
 
Hutchinson's office did not return a call from UPI.
 
Eugene Major, who serves as acting director of the NINDS and is responsible for the fate of the brain collection, did not return a call from UPI.
 
"The patients these brains were taken from suffered greatly before they died of CJD," Heather Larson of Phoenix, whose mother succumbed to CJD last year at the age of 56, wrote in a letter to Arizona Republican Sens. John McCain and Jon Kyl, and Republican Rep. John Shadegg. "Their brains hold answers that can save human lives. Destroying the brains at Bethesda would greatly hinder the research being done to fight this disease and would cost many their lives."
 
The offices of McCain and Kyl did not return UPI's calls.
 
"The ravages of this disease, and the toll it takes not only on its victims but on family and loved ones, cannot easily be described to someone who has not witnessed it personally," Patty Cook of Kansas City, Kan., wrote in a letter to Kansas Republican Sens. Sam Brownback and Pat Roberts, and Democratic Rep. Dennis Moore.
 
"I urge you to do whatever you can to ensure these brains are not destroyed," added Cook, whose mother died of CJD in 1982.
 
Brownback's office did not return a call from UPI.
 
CJD belongs to a group of diseases -- called transmissible spongiform encephalopathies or TSEs -- that includes mad cow disease, chronic wasting disease in deer and elk, scrapie in sheep and several types of CJD in humans. There is no cure for CJD and it typically results in death within a year after the onset of symptoms.
 
Consumer groups also are concerned and are considering taking steps to ensure the brain collection will be preserved.
 
"This is outrageous," Michael Hansen, a biologist and senior research associate with Consumers Union in Yonkers, N.Y., told UPI. "Those brains are a critical resource for CJD science and they must be at a research facility."
 
Hansen added that his late friend, Joe Gibbs, the former chief of NINDS's Laboratory of Central Nervous System Studies, told him the brain of famed choreographer George Balanchine, who died of CJD in 1983, resides in the collection.
 
"How can we claim to be a scientific country if we're going to be throwing away an irreplaceable repository of the first evidence of these diseases?" asked Felicia Nestor, who serves as a consultant to Public Citizen.
 
There may be hope yet for the collection, however.
 
Neil Cashman, an expert on TSEs at the University of Toronto's Center for Research in Neurodegenerative Diseases, told UPI he has been attempting to drum up support for acquiring the collection with his colleagues at the University of British Columbia in Vancouver -- where he plans to move this summer.
 
"I'm trying to organize support for an official letter from UBC to NIH to request the collection," Cashman said.
 
The letter will probably go out in about a month, he said.
 
"The goal would be to make it a resource for the world and make the tissues available to scientists who had a reasonable request," he added.
 
Singeltary said he has heard from at least one other prominent scientist in this field who said they planned to contact the NIH and urge it to reconsider the fate of the collection.
 
One brain in the collection, that of a French woman who died in 1971, may help provide clues about the origins of variant CJD -- a condition similar to CJD that humans can contract from eating beef products contaminated with the mad-cow pathogen. The first recognized case of vCJD occurred in 1995 in the United Kingdom, but an NIH scientist said he tested the French woman's brain in 2000 and found signs consistent with vCJD -- not CJD.
 
French researchers currently are re-examining specimens from the case to determine if the woman was indeed infected with vCJD. If she was, it would suggest the disease began infecting people more than 20 years earlier than previously thought.
 
Cashman said the case underscores the value of the NIH brain collection.
 
"There is information locked up in these freezers that will be lost forever if this collection is destroyed," he said.
 
--
 
 
 
 
NIH sends mixed signals on CJD brains
 
By STEVE MITCHELL, Medical Correspondent | April 7, 2005 at 3:30 PM
 
WASHINGTON, April 7 (UPI) -- A National Institutes of Health official who told United Press International the agency might destroy its collection of brains from human patients afflicted with a condition similar to mad cow disease reportedly has told the head of a patient-advocate group the collection would be preserved. The official, Eugene Major, acting director of the basic neuroscience program at the NIH, has not responded to e-mail or a phone call from UPI seeking clarification of his remarks, and the official status of the collection remains unknown.
 
As reported by UPI on March 24, the collection is stored in freezers by the NIH's National Institute for Neurological Disorders and Stroke in Bethesda, Md. It contains brains and other tissue samples from hundreds of people who died from the brain-wasting illness Creutzfeldt Jakob disease, as well as tissues from an untold number of experimental animals.
 
The consensus of scientists in this field is the collection, which dates back to 1963, is invaluable for research and could even provide insight into treatments for the fatal disorder. Currently, there is no cure for CJD and patients typically die within a year after symptoms begin.
 
Florence Kranitz, president of the non-profit advocacy group CJD Foundation, told UPI she had "a very long conversation" with Major, in which he told her the remaining tissues in the collection would not be destroyed.
 
"He reassured me in no uncertain terms," Kranitz said, noting constituents of the foundation and other CJD advocacy groups had been expressing concerns to her the tissues would be destroyed.
 
Kranitz, who has personal reasons for wanting the collection preserved -- her husband died of CJD in 2000 -- said she plans to meet with Major at the end of April to discuss the issue further.
 
CJD belongs to a group of diseases collectively known as transmissible spongiform encephalopathies, or TSEs, that includes mad cow disease in cows, chronic wasting disease in deer and elk, and scrapie in sheep. All TSEs are incurable and fatal.
 
Major previously told UPI some samples already have been destroyed and others have been given to researchers at the Food and Drug Administration and the National Prion Disease Pathology Surveillance Center in Cleveland.
 
Major said the remaining collection "has very little remaining value" and could be destroyed if another entity does not claim them.
 
Bruce Johnson, a former NIH scientist who retired at the end of 2003, said he had been told the collection would be destroyed in two years if no one took the samples from the NIH.
 
In response to hearing that Major had failed to confirm to UPI the brain collection would not be destroyed, Patricia Ewanitz, who lives in Port Jefferson Station, N.Y., and is founder of the advocacy group CJD Voice, said, "The brain tissue might not be indispensable to the National Institutes of Health but it is absolutely necessary to the families who thought enough of science to donate the brains, brain tissue and blood in hopes of someday finding an answer to why their loved one died."
 
Ewanitz, whose husband died of CJD in 1997, added, "It now seems like such a joke."
 
Terry Singeltary, whose mother passed away from a type of CJD in 1997, said the NIH should use the samples for scientific research, not just store them in freezers.
 
Both Singeltary and Ewanitz said they would feel more reassured if Major verified in writing the collection will not be destroyed.
 
"I would go further and ask Major what he plans to do with them," Singeltary said. "If the samples are just going to sit up there and go bad, then they should give them out to researchers looking for cause and cure."
 
The revelation the NIH might destroy part or all of the collection sparked an outcry from patient advocates, consumer groups and scientists.
 
Advocates have been contacting their members of Congress, urging them to investigate and prevent the NIH from destroying the brains. Consumer groups also have gotten involved and scientists have taken steps to obtain the collection or have urged Major not to destroy the samples.
 
Felicia Nestor, who serves as a consultant to Public Citizen, told UPI she had contacted certain legislators and at least one was considering looking into the situation. Nestor asked the legislator's name be withheld.
 
Kranitz said Major also told her he plans "to advertise in professional neurological journals and by whatever means necessary to make it known" to researchers in the field the tissues are available.
 
Major previously said, however, that efforts to inform researchers of the availability of the collection were already underway and included informing NIH grantees. He added he had personally notified researchers at scientific meetings, but no TSE researcher contacted by UPI was aware of this.
 
"I was never informed," said Laura Manuelidis, an expert on these diseases and section chief of surgery in the neuropathology department at Yale University. She said the first she had heard of the situation was in UPI's March 24 report.
 
Manuelidis also said she contacted Major, expressing interest in the specimens, but so far has not received a response.
 
"I sent a letter to (Major) on (March 25) about our interest in these specimens, but he has not replied," she told UPI in an e-mail.
 
Neil Cashman, a TSE expert at the University of Toronto, who said he was not aware the samples might be destroyed, has lobbied colleagues at the University of British Columbia -- where Cashman is scheduled to move to this summer -- to help draft a letter requesting the collection.
 
The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit organization consisting of more than 40 university and institute researchers from the United States, Canada, the United Kingdom and France, requested the collection in January, 2004. So far, the institute has not been informed of a decision by the NIH.
 
Asked if Major had told him whether the collection would be preserved, MIND Executive Director Harry Peery said, "We have heard nothing further from Eugene Major or anyone else at the NIH regarding the brain collection."
 
--
 
 
 
NIH says it will preserve CJD brains By STEVE MITCHELL
 
WASHINGTON, May 31 (UPI) -- The National Institutes of Health apparently has reversed its position on the fate of an invaluable collection of brains from people afflicted with a condition similar to mad cow disease, saying in a letter to a U.S. senator it will not destroy the collection.
 
An NIH official had told United Press International previously that the brain collection, which consists of samples from hundreds of people who died from the brain-wasting illness called Creutzfeldt Jakob disease, could be discarded if another entity does not claim them.
 
That sparked an outcry from patient-advocacy groups, consumer watchdogs and scientists, and the agency now appears to have backed away from that course.
 
"All the brains and other tissues with potential to help scientists learn about CJD are, and will continue to be, conserved," Story Landis, director of the National Institute of Neurological Disorders and Stroke, which oversees the brain collection, wrote in a May 10 letter to Sen. John Cornyn, R-Texas.
 
Cornyn had inquired about the status of the collection in April.
 
Last March, Eugene Major, acting director of the basic neuroscience program at the NIH, told UPI the useful portions of the collection had been doled out to scientists and the remaining samples had "very little remaining value" and could be destroyed.
 
Landis could not be reached for comment Tuesday. NINDS spokesman Paul Girolami told UPI he had been unable to locate her.
 
Scientists think the collection, which dates back to 1963, is invaluable for research on CJD and similar diseases and could even provide insight into treatments. There is no cure for CJD and patients typically die within a year after symptoms begin.
 
"Absolutely, the collection is worth keeping," Bruce Johnson, a former NIH scientist who said he had been told the collection would be destroyed in two years if no one took the samples from the agency, told UPI.
 
The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit organization consisting of more than 40 researchers from several countries, offered to take the collection off of NIH's hands more than a year ago and so far has not heard anything from the agency, Harry Peery, MIND's executive director, told UPI.
 
CJD belongs to a group of incurable and fatal diseases collectively known as transmissible spongiform encephalopathies, or TSEs, that includes mad cow disease in cows, chronic wasting disease in deer and elk, and scrapie in sheep.
 
Variant CJD, or vCJD, is a relatively new TSE, which people can contract from consuming beef products infected with the mad cow pathogen.
 
Despite Landis' assurance the collection will be preserved, some family members of the patients who donated their brains to the NIH are still skeptical. This is because the wording Landis used in the letter leaves open the possibility that some brain samples are being destroyed.
 
"The tissues that are discarded are those that have either decayed to an extent that renders them no longer appropriate for research or those for which we do not have sufficient identification," Landis wrote.
 
"Which ones" are being destroyed? asked Terry Singeltary, who is involved with several CJD patient groups.
 
"With a system like this, they could destroy whatever and whenever they wanted, for whatever reason they wanted," Singeltary, whose mother died of CJD in 1997, told UPI.
 
"It's a perfect excuse to discard some suspicious tissue resembling vCJD or some atypical TSE related to animal TSEs in the USA," he added.
 
Although the collection includes samples from CJD patients as young as 16 that could make them candidates for possible vCJD, the brains have never been screened for evidence of the disease. The only confirmed vCJD case in the United States occurred in a Florida woman who is thought to have contracted the disease in England.
 
Johnson said he along with renowned CJD expert Paul Brown were in the process of sorting through the samples to match them up with patient identification documents until they both retired. Some of the samples may prove impossible to identify, he said, but he and Brown are the only ones familiar enough with the collection to organize it and neither has been asked back by the agency to aid in the identification process.
 
Steve Mitchell is UPI's Medical Correspondent. E-mail: sciencemail@upi.com
 
Copyright 2005 by United Press International. All Rights Reserved.
 
 
 
=====================
 
JOHN CORNYN TEXAS UNITED STATES SENATE WASHINGTON, DC 20510-4305
 
April 26,2005
 
Mr. Terry Singeltary
 
P.O. Box 42
 
Bacliff, Texas 77518
 
Dear Mr. Singeltary:
 
In response to your recent request for my assistance, I have contacted the National Institutes of Health.
 
I will write you again as soon as I receive a reply. I appreciate having the opportunity to represent you in the United States Senate and to be of service in this matter.
 
Sincerely,
 
JOHN CORNYN United States Senator JC:djl
 
===============
 
JOHN CORNYN TEXAS UNITED STATES SENATE WASHINGTON, DC 20510-4305
 
May 18, 2005
 
Mr. Terry Singeltary
 
P.O. Box 42
 
Bacliff, Texas 77518
 
Dear Mr. Singeltary:
 
Enclosed is the reply I received from the Department of Health and Human Services in response to my earlier inquiry on your behalf. I hope this will be useful to you. I appreciate having the opportunity to represent you in the United States Senate. Thank you for taking time to contact me.
 
Sincerely,
 
JOHN CORNYN United States Senate JC:djl Enclosure
 
DEPARTMENT OF HEALTH & HUMAN SERVICES
 
National Institutes of Health National Institute of Neurological Disorders and Stroke
 
NINDS Building 31, Room 8A52 31 Center Dr., MSC 2540 Bethesda, Maryland 20892-2540
 
Phone: 301-496-9746 Fax: 301-496-0296 Email: sll22c@nih.gov
 
May 10, 2005
 
The Honorable John Cornyn United States Senator Occidental Tower 5005 LBJ Freeway, Suite 1150 Dallas, Texas 75244-6199
 
Dear Senator Cornyn:
 
Your letter to the National Institutes of Health (NIH) forwarding correspondence from Mr. Terry S. Singeltary, Sr., has been forwarded to me for reply. Mr. Singeltary is concerned about the preservation of Creutzfeldt-Jakob disease (CJD) brain samples that have been maintained by the National Institute of Neurological Disorders and Stroke (NINDS) Intramural Research program for many years. I am sorry to learn that Mr. Singeltary's mother died of CJD and can certainly understand his desire that any tissues that could help investigators unravel the puzzle of this deadly disease are preserved. I hope he will be pleased to learn that all the brains and other tissues with potential to help scientists learn about CJD are, and will continue to be, conserved. (The tissues that are discarded are those that have either decayed to an extent that renders them no longer appropriate for research or those for which we do not have sufficient identification.) The purpose of gathering these brains and tissues is to help scientists learn about CJD. To that end, some of the NINDS-held samples are distributed to investigators who can demonstrate that they have a compelling research or public health need for such materials. For example, samples have been transferred to NIH grantee Dr. Pierluigi Gambetti, who heads the National Prion Diseases Pathology Surveillance Center at Case Western Reserve University in Ohio and works with the Centers for Disease Control and Prevention to monitor all cases of CJD in the United States. Dr. Gambetti studies the tissues to learn about the formation, physical and chemical properties, and pathogenic mechanisms of prion proteins, which are believed to be involved in the cause of CJD. Samples have also been transferred to Dr. David Asher, at the U.S. Food and Drug Administration, for use in assessing a potential diagnostic test for CJD.
 
Page 2 - The Honorable John Cornyn
 
in closing, we know that donating organs and tissue from loved ones is a very difficult and personal choice that must often be made at the most stressful of times. We at the NINDS are grateful to those stalwart family members who make this choice in the selfless hope that it will help others afflicted with CJD. We also know the invaluable contribution such donations make to the advancement of medical science, and we are dedicated to the preservation of all of the tissue samples that can help in our efforts to overcome CJD.
 
I hope this information is helpful to you in responding to Mr. Singeltary. Sincerely,
 
Story C. Landis, Ph.D. Director, National Institute of Neurological Disorders and Stroke
 
==================================
 
TSS
 
a.. see re-NIH to destroy brain samples and tissues
 
TSS
 
#################### https://lists.aegee.org/bse-l.html ####################
 
 
 
 
the cjd body snatchers
 
 
2014
 
*** Confirmed Variant Creutzfeldt-Jakob Disease (variant CJD) Case in Texas in June 2014 confirmed as USA case NOT European ***
 
Sunday, November 23, 2014
 
*** Confirmed Variant Creutzfeldt-Jakob Disease (variant CJD) Case in Texas in June 2014 confirmed as USA case NOT European ***
 
The completed investigation did not support the patient's having had extended travel to European countries, including the United Kingdom, or travel to Saudi Arabia. The specific overseas country where this patient’s infection occurred is less clear largely because the investigation did not definitely link him to a country where other known vCJD cases likely had been infected.
 
 
Monday, November 3, 2014
 
USA CJD TSE PRION UNIT, TEXAS, SURVEILLANCE UPDATE NOVEMBER 2014
 
National Prion Disease Pathology Surveillance Center Cases Examined1 (October 7, 2014)
 
***6 Includes 11 cases in which the diagnosis is pending, and 19 inconclusive cases;
 
***7 Includes 12 (11 from 2014) cases with type determination pending in which the diagnosis of vCJD has been excluded.
 
***The sporadic cases include 2660 cases of sporadic Creutzfeldt-Jakob disease (sCJD),
 
***50 cases of Variably Protease-Sensitive Prionopathy (VPSPr)
 
***and 21 cases of sporadic Fatal Insomnia (sFI).
 
 
Tuesday, November 04, 2014
 
The pathological and molecular but not clinical phenotypes are maintained after second passage of experimental atypical bovine spongiform encephalopathy in cattle
 
 
We report a case of a 33-year-old female who died of a prion disease for whom the diagnosis of sFI or FFI was not considered clinically. Following death of this patient, an interview with a close family member indicated the patient's illness included a major change in her sleep pattern, corroborating the reported autopsy diagnosis of sFI.
 
 
sporadic FFI or nvCJD Texas style ???
 
 
Creutzfeldt-Jakob Disease Surveillance in Texas
 
 
Sunday, July 11, 2010
 
CJD or prion disease 2 CASES McLennan County Texas population 230,213 both cases in their 40s
 
 
CJD TEXAS 38 YEAR OLD FEMALE WORKED SLAUGHTERING CATTLE EXPOSED TO BRAIN AND SPINAL CORD MATTER
 
URGENT, PLEASE NOTE ;
 
>>> Up until about 6 years ago, the pt worked at Tyson foods where she worked on the assembly line, slaughtering cattle and preparing them for packaging. She was exposed to brain and spinal cord matter when she would euthanize the cattle. <<<
 
 
 
7 hours ago 0 Likes Like Reply Share flounder Flagflounder Guest Rank 2515 CJD NE TEXAS CLUSTER
 
Creutzfeldt-Jakob Disease in Northeast Texas
 
J.A. Rawlings,*1 K.A. Hendricks1, O.M. Nuno1, D.A. Brown1, D.A. Evans2, Texas Department of Health, 1Austin and 2Tyler, Texas Creutzfeldt-Jacob Disease (CJD), a transmissible spongiform encephalopathy, is caused by prions composed of proteinaceous material devoid of nucleic acid. CJD occurs sporadically (generally 1 case/1,000,000 population per year) in older patients (average age of 65) and is characterized by rapidly progressive dementia, accompanied by severe muscle spasms and incoordination. Death usually occurs within 3 to 12 months (average 7 months). CJD activity in Texas, which has a population of nearly 19 million, appeared to be typical. The statewide death rate for 1995 and 1996 was just under 1/1,000,000. In April of 1997, the Texas Department of Health became aware of an increased number of possible CJD cases in a 23-county area of NE Texas with a population of just over one million. After review of medical and pathology records, four patients were identified with definite classic CJD and three were identified with probable CJD. Dates of death for the eight patients were from April, 1996 through mid-July 1997. The patients were from 46 through 65 years of age; four were male and three were female. A case-control study to identify risks for CJD in NE Texas has been initiated. http://www.jifsan.umd.edu/tse/Rawlings.htm
 
7 hours ago 0 Likes Like Reply Share
 
 
 
MAD COW DISEASE AKA BOVINE SPONGIFORM ENCEPHALOPATHY BSE typical and atypical
 
*** Singeltary reply ; Molecular, Biochemical and Genetic Characteristics of BSE in Canada Singeltary reply ;
 
 
Tuesday, August 12, 2014
 
MAD COW USDA TSE PRION COVER UP or JUST IGNORANCE, for the record AUGUST 2014
 
 
Thursday, October 02, 2014
 
[Docket No. APHIS-2013-0064] Concurrence With OIE Risk Designations for Bovine Spongiform Encephalopathy
 
 
Saturday, August 14, 2010
 
BSE Case Associated with Prion Protein Gene Mutation (g-h-BSEalabama) and VPSPr PRIONPATHY
 
 
2009 UPDATE ON ALABAMA AND TEXAS MAD COWS 2005 and 2006
 
 
10,000,000+ LBS. of PROHIBITED BANNED MAD COW FEED I.E. BLOOD LACED MBM IN COMMERCE USA 2007
 
Date: March 21, 2007 at 2:27 pm PST
 
RECALLS AND FIELD CORRECTIONS: VETERINARY MEDICINES -- CLASS II
 
PRODUCT
 
Bulk cattle feed made with recalled Darling's 85% Blood Meal, Flash Dried, Recall # V-024-2007
 
CODE
 
Cattle feed delivered between 01/12/2007 and 01/26/2007
 
RECALLING FIRM/MANUFACTURER
 
Pfeiffer, Arno, Inc, Greenbush, WI. by conversation on February 5, 2007.
 
Firm initiated recall is ongoing.
 
REASON
 
Blood meal used to make cattle feed was recalled because it was cross- contaminated with prohibited bovine meat and bone meal that had been manufactured on common equipment and labeling did not bear cautionary BSE statement.
 
VOLUME OF PRODUCT IN COMMERCE
 
42,090 lbs.
 
DISTRIBUTION
 
WI
 
___________________________________
 
PRODUCT
 
Custom dairy premix products: MNM ALL PURPOSE Pellet, HILLSIDE/CDL Prot- Buffer Meal, LEE, M.-CLOSE UP PX Pellet, HIGH DESERT/ GHC LACT Meal, TATARKA, M CUST PROT Meal, SUNRIDGE/CDL PROTEIN Blend, LOURENZO, K PVM DAIRY Meal, DOUBLE B DAIRY/GHC LAC Mineral, WEST PIONT/GHC CLOSEUP Mineral, WEST POINT/GHC LACT Meal, JENKS, J/COMPASS PROTEIN Meal, COPPINI - 8# SPECIAL DAIRY Mix, GULICK, L-LACT Meal (Bulk), TRIPLE J - PROTEIN/LACTATION, ROCK CREEK/GHC MILK Mineral, BETTENCOURT/GHC S.SIDE MK-MN, BETTENCOURT #1/GHC MILK MINR, V&C DAIRY/GHC LACT Meal, VEENSTRA, F/GHC LACT Meal, SMUTNY, A- BYPASS ML W/SMARTA, Recall # V-025-2007
 
CODE
 
The firm does not utilize a code - only shipping documentation with commodity and weights identified.
 
RECALLING FIRM/MANUFACTURER
 
Rangen, Inc, Buhl, ID, by letters on February 13 and 14, 2007. Firm initiated recall is complete.
 
REASON
 
Products manufactured from bulk feed containing blood meal that was cross contaminated with prohibited meat and bone meal and the labeling did not bear cautionary BSE statement.
 
VOLUME OF PRODUCT IN COMMERCE
 
9,997,976 lbs.
 
DISTRIBUTION
 
ID and NV
 
END OF ENFORCEMENT REPORT FOR MARCH 21, 2007
 
 
Sunday, December 15, 2013
 
*** FDA PART 589 -- SUBSTANCES PROHIBITED FROM USE IN ANIMAL FOOD OR FEED VIOLATIONS OFFICIAL ACTION INDICATED OIA UPDATE DECEMBER 2013 UPDATE ***
 
 
Singeltary Response to USDA, and USDA
 
RESPONSE TO SINGELTARY ON HARVARD BSE RISK ASSESSMENT
 
Owens, Julie
 
From: Terry S. Singeltary Sr. [flounder9@verizon.net]
 
Sent: Monday, July 24, 2006 1:09 PM
 
To: FSIS RegulationsComments
 
Subject: [Docket No. FSIS-2006-0011] FSIS Harvard Risk Assessment of Bovine Spongiform Encephalopathy (BSE) Page 1 of 98
 
 
FSIS, USDA, REPLY TO SINGELTARY
 
 
Tuesday, December 2, 2014
 
UK EXPORTS OF MBM TO WORLD Bovine Spongiform Encephalopathy BSE TSE Prion aka Mad Cow Disease
 
USA, NORTH AMERICA, MBM (or any potential TSE prion disease) EXPORTS TO THE WORLD (?) [protected by the BSE MRR policy] $$$
 
 
Monday, December 1, 2014
 
Germany Bovine Spongiform Encephalopathy BSE CJD TSE Prion disease A Review December 1, 2014
 
 
 
 
Chronic Wasting Disease CWD
 
Tuesday, November 04, 2014
 
*** Six-year follow-up of a point-source exposure to CWD contaminated venison in an Upstate New York community: risk behaviours and health outcomes 2005–2011
 
 
Singeltary submission ;
 
Program Standards: Chronic Wasting Disease Herd Certification Program and Interstate Movement of Farmed or Captive Deer, Elk, and Moose
 
DOCUMENT ID: APHIS-2006-0118-0411
 
***Singeltary submission
 
Docket No. 00-108-10 Chronic Wasting Disease Herd Certification Program and Interstate Movement of Farmed or Captive Deer, Elk, and Moose; Program Standards
 
>>>The CWD herd certification program is a voluntary, cooperative program that establishes minimum requirements for the interstate movement of farmed or captive cervids, provisions for participating States to administer Approved State CWD Herd Certification Programs, and provisions for participating herds to become certified as having a low risk of being infected with CWD<<<
 
Greetings USDA/APHIS et al,
 
I kindly would like to comment on Docket No. 00-108-10 Chronic Wasting Disease Herd Certification Program and Interstate Movement of Farmed or Captive Deer, Elk, and Moose; Program Standards.
 
I believe, and in my opinion, and this has been proven by scientific facts, that without a validated and certified test for chronic wasting disease cwd, that is 100% sensitive, and in use, any voluntary effort will be futile. the voluntary ban on mad cow feed and SRMs have failed terribly, the bse mad cow surveillance program has failed terribly, as well as the testing for bse tse prion in cattle, this too has failed terrible. all this has been proven time and time again via OIG reports and GOA reports.
 
I believe that until this happens, 100% cwd testing with validated test, ALL MOVEMENT OF CERVIDS BETWEEN STATES MUST BE BANNED, AND THE BORDERS CLOSED TO INTERSTATE MOVEMENT OF CERVIDS. there is simply to much at risk.
 
In my opinion, and the opinions of many scientists and DNR officials, that these so called game farms are the cause of the spreading of chronic wasting disease cwd through much negligence. the game farms in my opinion are not the only cause, but a big factor. I kindly wish to submit the following to show what these factors are, and why interstate movement of cervids must be banned. ...
 
snip...see full text and PDF ATTACHMENT HERE ;
 
 
 
Sunday, June 23, 2013
 
National Animal Health Laboratory Network Reorganization Concept Paper (Document ID APHIS-2012-0105-0001)
 
***Terry S. Singeltary Sr. submission
 
 
Friday, November 22, 2013
 
Wasting disease is threat to the entire UK deer population CWD TSE PRION disease in cervids
 
***SINGELTARY SUBMISSION
 
The Scottish Parliament’s Rural Affairs, Climate Change and Environment Committee has been looking into deer management, as you can see from the following press release,
 
***and your email has been forwarded to the committee for information:
 
 
 
Friday, November 22, 2013
 
Wasting disease is threat to the entire UK deer population
 
 
Sunday, July 21, 2013
 
Welsh Government and Food Standards Agency Wales Joint Public Consultation on the Proposed Transmissible Spongiform Encephalopathies (Wales) Regulations 2013
 
*** Singeltary Submission WG18417
 
 
Saturday, July 07, 2012
 
TEXAS Animal Health Commission Accepting Comments on Chronic Wasting Disease Rule Proposal
 
Considering the seemingly high CWD prevalence rate in the Sacramento and Hueco Mountains of New Mexico, CWD may be well established in the population and in the environment in Texas at this time.
 
 
Tuesday, July 10, 2012
 
Chronic Wasting Disease Detected in Far West Texas
 
 
Monday, February 11, 2013
 
TEXAS CHRONIC WASTING DISEASE CWD Four New Positives Found in Trans Pecos
 
 
Thursday, October 03, 2013
 
*** TAHC ADOPTS CWD RULE THAT the amendments __REMOVE__ the requirement for a specific fence height for captives ***
 
Texas Animal Health Commission (TAHC)
 
October 3, 2013
 
 
Transmissible Spongiform Encephalopathy TSE Prion Disease North America 2014
 
Transmissible Spongiform Encephalopathy TSE Prion Disease have now been discovered in a wide verity of species across North America. typical C-BSE, atypical L-type BASE BSE, atypical H-type BSE, atypical H-G BSE, of the bovine, typical and atypical Scrapie strains, in sheep and goats, with atypical Nor-98 Scrapie spreading coast to coast in about 5 years. Chronic Wasting Disease CWD in cervid is slowly spreading without any stopping it in Canada and the USA and now has mutated into many different strains. Transmissible Mink Encephalopathy TME outbreaks. These Transmissible Spongiform Encephalopathy TSE Prion Disease have been silently mutating and spreading in different species in North America for decades.
 
The USDA, FDA, et al have assured us of a robust Triple BSE TSE prion Firewall, of which we now know without a doubt, that it was nothing but ink on paper. Since the 1997 mad cow feed ban in the USA, literally tons and tons of banned mad cow feed has been put out into commerce, never to return, as late as December of 2013, serious, serious breaches in the FDA mad cow feed ban have been documented. The 2004 enhanced BSE surveillance program was so flawed, that one of the top TSE prion Scientist for the CDC, Dr. Paul Brown stated ; Brown, who is preparing a scientific paper based on the latest two mad cow cases to estimate the maximum number of infected cows that occurred in the United States, said he has "absolutely no confidence in USDA tests before one year ago" because of the agency's reluctance to retest the Texas cow that initially tested positive.
 
see ;
 
 
The BSE surveillance and testing have also been proven to be flawed, and the GAO and OIG have both raised serious question as to just how flawed it has been (see GAO and OIG reports). North America has more documented TSE prion disease, in different documented species (excluding the Zoo BSE animals in the EU), then any other place on the Globe. This does not include the very likelihood that TSE prion disease in the domestic feline and canine have been exposed to high doses of the TSE prion disease vid pet food. To date, it’s still legal to include deer from cwd zone into pet food or deer food. Specified Risk Material i.e. SRM bans still being breach, as recently as just last month.
 
nvCJD or what they now call vCJD, another case documented in Texas last month, with very little information being released to the public on about this case? with still the same line of thought from federal officials, ‘it can’t happen here’, so another vCJD blamed on travel of a foreign animal disease from another country, while ignoring all the BSE TSE Prion risk factors we have here in the USA and Canada, and the time that this victim and others, do spend in the USA, and exposed to these risk factors, apparently do not count in any way with regard to risk factor. a flawed process of risk assessment.
 
sporadic CJD, along with new TSE prion disease in humans, of which the young are dying, of which long duration of illness from onset of symptoms to death have been documented, only to have a new name added to the pot of prion disease i.e. sporadic GSS, sporadic FFI, and or VPSPR. I only ponder how a familial type disease could be sporadic with no genetic link to any family member? when the USA is the only documented Country in the world to have documented two different cases of atypical H-type BSE, with one case being called atypical H-G BSE with the G meaning Genetic, with new science now showing that indeed atypical H-type BSE is very possible transmitted to cattle via oral transmission (Prion2014). sporadic CJD and VPSPR have been rising in Canada, USA, and the UK, with the same old excuse, better surveillance. You can only use that excuse for so many years, for so many decades, until one must conclude that CJD TSE prion cases are rising. a 48% incease in CJD in Canada is not just a blip or a reason of better surveillance, it is a mathematical rise in numbers. More and more we are seeing more humans exposed in various circumstance in the Hospital, Medical, Surgical arenas to the TSE Prion disease, and at the same time in North America, more and more humans are becoming exposed to the TSE prion disease via consumption of the TSE prion via deer and elk, cattle, sheep and goats, and for those that are exposed via or consumption, go on to further expose many others via the iatrogenic modes of transmission of the TSE prion disease i.e. friendly fire. I pondered this mode of transmission via the victims of sporadic FFI, sporadic GSS, could this be a iatrogenic event from someone sub-clinical with sFFI or sGSS ? what if?
 
Two decades have passed since Dr. Ironside first confirmed his first ten nvCJD victims in 1995. Ten years later, 2005, we had Dr. Gambetti and his first ten i.e. VPSPR in younger victims. now we know that indeed VPSPR is transmissible. yet all these TSE prion disease and victims in the USA and Canada are being pawned off as a spontaneous event, yet science has shown, the spontaneous theory has never been proven in any natural case of TSE prion disease, and scientist have warned, that they have now linked some sporadic CJD cases to atypical BSE, to atypical Scrapie, and to CWD, yet we don’t here about this in the public domain. We must make all human and animal TSE prion disease reportable in every age group, in ever state and internationally, we must have a serious re-evaluation and testing of the USA cattle herds, and we must ban interstate movement of all cervids. Any voluntary effort to do any of this will fail. Folks, we have let the industry run science far too long with regards to the TSE prion disease. While the industry and their lobbyist continues to funnel junk science to our decision policy makers, Rome burns. ...end
 
REFERENCES
 
Sunday, June 29, 2014
 
Transmissible Spongiform Encephalopathy TSE Prion Disease North America 2014
 
 
Scrapie
 
*** why do we not want to do TSE transmission studies on chimpanzees $
 
5. A positive result from a chimpanzee challenged severly would likely create alarm in some circles even if the result could not be interpreted for man. I have a view that all these agents could be transmitted provided a large enough dose by appropriate routes was given and the animals kept long enough. Until the mechanisms of the species barrier are more clearly understood it might be best to retain that hypothesis.
 
snip...
 
R. BRADLEY
 
 
1: J Infect Dis 1980 Aug;142(2):205-8
 
Oral transmission of kuru, Creutzfeldt-Jakob disease, and scrapie to nonhuman primates.
 
Gibbs CJ Jr, Amyx HL, Bacote A, Masters CL, Gajdusek DC.
 
Kuru and Creutzfeldt-Jakob disease of humans and scrapie disease of sheep and goats were transmitted to squirrel monkeys (Saimiri sciureus) that were exposed to the infectious agents only by their nonforced consumption of known infectious tissues. The asymptomatic incubation period in the one monkey exposed to the virus of kuru was 36 months; that in the two monkeys exposed to the virus of Creutzfeldt-Jakob disease was 23 and 27 months, respectively; and that in the two monkeys exposed to the virus of scrapie was 25 and 32 months, respectively. Careful physical examination of the buccal cavities of all of the monkeys failed to reveal signs or oral lesions. One additional monkey similarly exposed to kuru has remained asymptomatic during the 39 months that it has been under observation.
 
snip...
 
The successful transmission of kuru, Creutzfeldt-Jakob disease, and scrapie by natural feeding to squirrel monkeys that we have reported provides further grounds for concern that scrapie-infected meat may occasionally give rise in humans to Creutzfeldt-Jakob disease.
 
PMID: 6997404
 
 
Recently the question has again been brought up as to whether scrapie is transmissible to man. This has followed reports that the disease has been transmitted to primates. One particularly lurid speculation (Gajdusek 1977) conjectures that the agents of scrapie, kuru, Creutzfeldt-Jakob disease and transmissible encephalopathy of mink are varieties of a single "virus". The U.S. Department of Agriculture concluded that it could "no longer justify or permit scrapie-blood line and scrapie-exposed sheep and goats to be processed for human or animal food at slaughter or rendering plants" (ARC 84/77)" The problem is emphasised by the finding that some strains of scrapie produce lesions identical to the once which characterise the human dementias"
 
Whether true or not. the hypothesis that these agents might be transmissible to man raises two considerations. First, the safety of laboratory personnel requires prompt attention. Second, action such as the "scorched meat" policy of USDA makes the solution of the acrapie problem urgent if the sheep industry is not to suffer grievously.
 
snip...
 
76/10.12/4.6
 
 
Nature. 1972 Mar 10;236(5341):73-4.
 
Transmission of scrapie to the cynomolgus monkey (Macaca fascicularis).
 
Gibbs CJ Jr, Gajdusek DC.
 
Nature 236, 73 - 74 (10 March 1972); doi:10.1038/236073a0
 
Transmission of Scrapie to the Cynomolgus Monkey (Macaca fascicularis)
 
C. J. GIBBS jun. & D. C. GAJDUSEK
 
National Institute of Neurological Diseases and Stroke, National Institutes of Health, Bethesda, Maryland
 
SCRAPIE has been transmitted to the cynomolgus, or crab-eating, monkey (Macaca fascicularis) with an incubation period of more than 5 yr from the time of intracerebral inoculation of scrapie-infected mouse brain. The animal developed a chronic central nervous system degeneration, with ataxia, tremor and myoclonus with associated severe scrapie-like pathology of intensive astroglial hypertrophy and proliferation, neuronal vacuolation and status spongiosus of grey matter. The strain of scrapie virus used was the eighth passage in Swiss mice (NIH) of a Compton strain of scrapie obtained as ninth intracerebral passage of the agent in goat brain, from Dr R. L. Chandler (ARC, Compton, Berkshire).
 
 
 
Thursday, July 31, 2014
 
*** EFSA Scrapie reduction unlikely without effective breeding programme
 
 
Self-Propagative Replication of Ab Oligomers Suggests Potential Transmissibility in Alzheimer Disease
 
Received July 24, 2014; Accepted September 16, 2014; Published November 3, 2014
 
 
Singeltary comment ;
 
 
Terry S. Singeltary Sr. P.O. Box 42 Bacliff, Texas USA 77518 flounder9@verizon.net
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