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Putting a Community Face to a Misunderstood Disease
January 10, 2004 League City News by th LCN Health & Science Editor
We were lucky in the endeavor because the Bayside Area is home to a renowned expert in the field. Terry Singeltary, publisher of many articles about Creutzfeldt-Jakob Disease, directed us to numerous websites, as well as share his own personal connection with C.J.D. with the loss of his mother.
According to a recent article released by the Associated Press:
"The news is full of concern that people can develop the brain disease by eating food products from cattle with mad cow disease. But that's not what causes most cases of CJD.
Only about 150 cases of the human disease linked to mad cow, known as "variant" CJD, have been counted worldwide since it was first formally described in 1996. (The majority of those cases are in the United Kingdom.) But every year, about 250 people in the United States alone are diagnosed with classic CJD, a disease known for 80 years.
Though both forms of CJD are rare and always fatal, they do differ in several ways in the age of their victims, the speed in which they kill, and the initial symptoms.
The cause of classic CJD is unknown 85 percent of the time. The remaining cases are either caused by inheriting a genetic mu- tation or acquired through medical procedures that used contaminated equip- ment or tissues.
The classic version typically strikes people in their 60s and 70s; half the patients die by age 68.
The variant kind is a young person's disease, with half its victims dying by age 28.
Symptoms also tend to play out differently in the two kinds of the disease. In variant CJD, the early symptoms tend to be mostly psychiatric problems, like depression, withdrawal and anxiety, and patients often complain of pain or numbness or a pins-and- needles sensation.
In classic CJD, early symptoms are usually neurologic, like trouble standing or walking prop- erly, involuntary jerking and speech abnormalities, along with an erosion of mental abilities. Even- tually, patients become unable to move or speak and they typically enter a coma before death.
One other difference is that classic CJD kills much faster. The variant form takes about 14 months from the first symptoms to kill half its victims. The classic form takes just six months, and it kills about 90 percent within a year.
"It's a dreadful disease," in part because one can see the loss of mental abilities "almost from day to day," said Dr. Richard Johnson of the Johns Hopkins University School of Medicine."
However, Philip Yam, who has been writing and editing for Scientific American since 1989 and is currently the magazine's news editor, has his first book, "The Pathological Protein Mad Cow, Chronic Wasting, and Other Deadly Prion Diseases" published in 2003.
Philip Yam referred to Terry, "that Singeltary, over the years, has provided unacknowledged help to reporters around the globe, passing on files to such big-time players as The New Tork Times, Newsweek, and USA Today.
His networking with journalists, activists, and concerned citizens has helped medical authorities make contact with suspected CJD victims.
He has kept scientists informed with his almost daily posting of news items and research abstracts on electronic newsgroups, including the bulletin board on www.vegsource.com and the BSE-listserv run out of the University of Karlsruhe, Germany.
His combative, blunt, opinionated style some- times borders on obsessive ranting that earns praise from some officials and researchers but infuriates others especially when he repeats his conviction that "the government has lied to us, the feed industry has lied to us all over a buck."
As evidence, Singeltary cites the USDA's testing approach, which targets downer cows and exam- ined 19,900 of them in 2002.
To him, the USDA should test 1 million cattle, because the incidence of BSE may be as low as one in a million, as it was in some European countries.
That the U.S. does not, he thinks, is a sign that the government is really not interested in finding mad cows because of fears of an economic disaster.
"Singeltary got into the field of transmissible spongiform encepha- lopathy in 1997, just after his mother died of sporadic CJD. She had an especially aggressive version, the Heidenhain variant, that first causes the patient to go blind and then to deteriorate rapidly.
" She died just ten weeks after her symptoms began. Singeltary, who said he had watched his grand- parents die of cancer, considered her death by CJD to be much, much worse: "It's something you never forget." Her uncon- trollable muscle twitching became so bad that it took three of us to hold her one time," Singeltary recalled. "She did everything but levitate in bed and spin her head."
Doctors originally diag- nosed Alzheimer's disease, but a post-mortem neuro- pathological exam dem- anded by Singeltary revealed the true nature of death.
Classifying a disease as "sporadic" is another way for doctors to say they don't know the cause. Normal prion proteins just turn rogue in the brain for no apparent reason. The term "sporadic" is often part- icularly hard for the victims' families to accept, especially when the patient was previously in robust health.
Maybe it was something in the water, they wonder, or in the air, or something they ate, the same questions CJD researchers tried to answer decades
BSE Cont. on page 10
ago. The names "sporadic CJD" and "variant CJD" also confuse the public and raise suspicions that U.S. authorities are hiding something when they say there have been no native variant CJD cases in the country.
Singeltary suspected an environmental cause in his mother's demise, a feeling reinforced a year later when a neighbor died of sporadic CJD. For years, the neighbor had been taking nutritional supp- lements that contained cow brain extracts.
"The FDA needs to review clinical studies on the safety and efficacy of dietary supplements. Organisations such as Public Citizen and the American Medical Assoc- iation are already taking steps to achieve these changes.
"However, they face immense opposition from groups such as the National Nutritional Foods Association, the American Herbal Association, and the Council for Responsible Nutrition.
"To overcome such resistance, consumer organisations, health-care providers, and government agencies need to approach this subject in unison. The public needs to be able to assess the risks and benefits of dietary supp- lements before consuming them.
Health-care providers and the more than 100 million Americans who consume these products should encourage the FDA to treat supplements with the stringent regulations it enforces on pharmaceutical products."
Animal ingredients of Nutritional Supplements by only ONE company;
Standard Process Co.
bovine EYE PMG Extract, veal bone PMG Extract, bovine liver powder, vaccuum dried porcine stomach, vacuum dried bovine adrenal, vacuum dried bovine kidney, bovine adrenal, vacuum dried BOVINE BRAIN, bone meal,vacuum dried veal bone.
vacuum dried bovine prostate, bovine liver powder, vacuum dried bovine kidney, bovine orchic glandular extract, bovine liver fat extract.
bovine liver powder, Adrenal, Desiccated TM, Vacuum dried bovine adrenal.
bovine liver PMG Extract, vacuum dried bovine adrenal, bovine kidney
PMF Extract, bovine thymus Cytosol Extract, bovine liver powder, bone meal, vacuum dried bovine kidney, veal bone meal.
bovine lung PMF Extract, bovine adrenal PMF Extract, bovine liver fat extract (yakriton), bone meal, vacuum dried bovine kidney, vacuum dried veal bone.
Bovine liver PMG Extract, bovine liver powder, veal bone PMF Extract, bovine spleen PMF Extract, vacuum dried bovine and ovine spleen, bovine thymus PMF Extract, bovine thymus Cytosol Extract.
Bovine Heart PMG Extract, veal bone PMF Extract, bovine liver powder, vacuum dried porcine duodenum, bovine adrenal Cytosol Extract, vacuum dried bovine and ovine spleen.
WASHINGTON (Reuters Health) Mar 16 2001 - The nation's largest dietary supplements industry group has issued new guidance to manufacturers amid concerns that some alternative health products containing bovine mate- rials pose a risk of transmitting bovine spongiform encephalopathy (BSE) to humans.
The guidance, published by the National Nutritional Foods Association (NNFA), encourages manufacturers to eliminate all neuro- logical bovinematerials from their products. Consumption of brains and spinal cords from cows infected with BSE are widely believed to be the source of new variant Creutzfeldt-Jakob disease (vCJD) in humans.
We hope that the above data informs, but not overwhelms, the reader. For the technically literate there are numerous articles and links available via. www.google.com searching for mad cow disease. If you have any questions for
Terry Singeltary write or e-mail firstname.lastname@example.org and we will forward them to him.
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