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**agate** · 05-31-2026, 10:06 PM

flatfish, you have been posting about this calamitous disorder here diligently--I hope others are reading your posts. Even if there aren't hordes of readers, at least you'll have your information gathered here where you --and anyone else--can find it. Thank you for your continuing interest!

I'm just starting to read a book that deals with Creutzfeldt-Jakob disease and some other neurological diseases. It was published in 2006 and the author is D. T. Max. The title is The Family That Couldn't Sleep: A Medical Mystery. Wonder if you've read it or heard of it?

A very small point but the people who set up this board apparently missed a typo when they did the title for this forum. Isn't it Creutzfeldt-Jakob disease, not Creutzfeldt-Jakob's disease? Maybe whoever is in charge now would be willing to fix that, or maybe it's sometimes called that (with the 's)?

**flatfish** · 06-01-2026, 01:40 PM

Originally posted by agate View Post

flatfish, you have been posting about this calamitous disorder here diligently--I hope others are reading your posts. Even if there aren't hordes of readers, at least you'll have your information gathered here where you --and anyone else--can find it. Thank you for your continuing interest!

I'm just starting to read a book that deals with Creutzfeldt-Jakob disease and some other neurological diseases. It was published in 2006 and the author is D. T. Max. The title is The Family That Couldn't Sleep: A Medical Mystery. Wonder if you've read it or heard of it?

A very small point but the people who set up this board apparently missed a typo when they did the title for this forum. Isn't it Creutzfeldt-Jakob disease, not Creutzfeldt-Jakob's disease? Maybe whoever is in charge now would be willing to fix that, or maybe it's sometimes called that (with the 's)?

Thank you for the kind words.

old D.T. Max made a trip down here and interviewed me for a few days when he was writing that book.

i just made a promise to Mom way back when she was about to pass from hvcjd, confirmed, never forget, never let them forget, SHOW ME THE TRANSMISSION STUDIES! that was December 1997. here we are some, almost 3 decades later, here we are…

The Family That Couldn’t Sleep D.T. Max

Public Reaction and Sociopolitical Dynamics

As the issue unfolded, individuals like Terry Singeltary

publicized their concerns after losing family to CJD,

affirming their beliefs that infections were being concealed or

misunderstood. Meanwhile, other families scrutinized the

statistical anomalies linking clusters of CJD cases to

potential environmental factors. Janet Skarbek notably

investigated a pattern of cases connected to the Garden State

Race Track, further fueling public fear of concealed mad cow

infections.

Continuing Fear and the Movement Against

Inaction

The chapter closes by highlighting the persistence of the

Creutzfeldt Jakobins, who maintain skepticism about the

official stance on CJD cases, driving continued discourse on

food safety and public health in the face of uncertain prion

disease implications. Their motto, “Absence of evidence isn’t

evidence of absence,” underscores a growing movement

advocating for more rigorous investigation and transparency

about prion diseases and their potential impact on health.

snip…

3.Question

Why did Terry Singeltary become such a significant

figure in the dialogue surrounding mad cow disease and

CJD?

Answer:Terry Singeltary emerged as a prominent advocate

after losing his mother to a form of CJD. His personal

tragedy fueled his drive to investigate the links between mad

cow disease and human health. He utilized online platforms

to raise awareness and share information, fostering a

community of concerned individuals (Creutzfeldt Jakobins)

who believed that CJD cases were being misdiagnosed and

covered up.

snip…

4.Question

What role did the USDA’s testing policies play in public

confidence regarding beef safety?

Answer:The USDA’s testing policies, which were minimal

compared to European standards, contributed to public

doubts. Despite declaring beef to be safe, the small sample

size of tested cattle (only about one in a thousand) gave the

impression that rigorous safety protocols were lacking.

Consumers began to lose trust as reports surfaced about

contaminated practices and the powerful influence of the beef

industry on regulatory policies.

5.Question

How did the skepticism towards the USDA and the food

industry contribute to the Creutzfeldt Jakobins’movement?

Answer:The skepticism towards the USDA's assurances

about food safety, coupled with the government’s historical

failures to manage foodborne illnesses effectively, fueled the

Creutzfeldt Jakobins' advocacy. They believed that

negligence and corporate interests over public health were

endangering lives, leading to a collective movement that

demanded accountability and better health protections

against prion diseases.

snip…

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New York Times Magazine The Case of the Cherry Hill Cluster By D.T. MAX

Published: March 28, 2004

snip...

Skarbek did not know how to surmount this objection. But she was a go-getter. She wasn't about to give up on her cluster so easily. Fortunately, she was in contact with Terry Singeltary. She had seen his name quoted often on the Web in articles on C.J.D. and mad cow. Singeltary lost his mother to an extremely rare strain of sporadic C.J.D. in 1997. Soon after, he learned that a year earlier to the day, the mother of his next-door neighbor died of the disease. Since that time, he has become convinced that these sporadic cases are not sporadic at all, that mad cow is now a disease of humans in America. He said he believes that his mother was accidentally infected during surgery and the mother of his neighbor from taking nutritional supplements made from high-risk bovine tissue, which he calls ''mad cow in a pill.''

Singeltary has a sloping face and slicked-back hair. He is nearsighted, with small blue eyes. He looks like Lewis Carroll's White Rabbit. From his living room in Bacliff, Tex., he dominates the listservs and message boards of an online debate over sporadic C.J.D. -- the scientists who say it exists; the heartbroken family members who doubt it. Early, deep in his grief, he would sign his e-mail messages to scientists, ''I am the madson of a deadmom who died of madcow.'' Singeltary turned out to be helpful for Skarbek. He pointed her to a paper that was published in 2002 in the journal of the European Molecular Biology Organization by John Collinge, the premier prion researcher in England. Collinge argued that experiments conducted in mice suggest that infections with mad cow can sometimes look like sporadic C.J.D. Collinge accepted the implications: he recommended that ''serious consideration should be given'' to the idea that some of the more recent sporadic C.J.D. cases in Europe were in fact related to mad cow disease.

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Saturday, April 25, 2026

USDA Statement BSE Surveillance Information Center Update 2026

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APHIS USDA Captive CWD Herds Update by State March 2026

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Limited transmission of cervid prions to nonhuman primates provides insights into the zoonotic potential of chronic wasting disease

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WILDLIFE HEALTH COORDINATION AND ZOONOTIC DISEASE PREVENTION ACT S.4451 Chronic Wasting Disease CWD TSE Prion Singeltary Submission

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NATIONAL PRION DISEASE PATHOLOGY SURVEILLANCE CENTER CJD SURVEILLANCE TABLES OF CASES EXAMINED NPDPSC Last updated March 31st, 2026

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kind regards, terry

**agate** · 2026-06-03T15:26:43

Wow. I'm slow about getting through books and am only about a third of the way into this book but I'm planning to look into this post in more detail after I've moved forward in the book. Just now the author is going into the history, and he's going into the Fore tribe experience.

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