Now We’re Getting Somewhere!

I know; upon closer inspection this is pretty bad news about the evolution of BSE in America. But that’s just the thing – this proves there is an evolution to BSE in America and it’s happening right under our noses. No news isn’t good news in regards to BSE. Anything we can learn will bring us closer to finding the key to how this disease works so we can cure it in humans and animals.

I’ve felt all along that we must have missed something in researching prion disease over the last 250 years, likely something obvious and simple. There’s certainly a missing link with TSEs, which is why I’m glad when something like this comes out to shed some light on the disease and how we approach it.

Remember the feed ban that has been in affect in the U.S. since 1997? This is the feed ban the USDA refers to when it tells you American beef is safe from mad cow disease. It’s the feed ban that supposedly means cows aren’t being fed other ground up cows. (Our fantastic system of checks and balances on this is a whole other post). Every time a cow tests positive, it’s always too old to have been affected by the feed ban, because the cows have been age 12 or age 10 and must have contracted BSE before the feed ban went into affect. This is usually the point where U.S. agriculture secretary Mike Johanns tells you that American beef is safe.

In previous posts, I’ve talked about why no one in this country can ever categorically tell you that American beef is safe to eat. Johanns ought to be ashamed of himself in much the same way Phillip Morris should be ashamed of peddling cigarettes. Because when you peddle things that can kill people, people die.

Which brings me back to this new article. The last two cows to test positive for BSE in the U.S. have been found to have carried atypical strains of BSE. This is leading scientists to believe older cows such as these are susceptible to this atypical strain, feed ban be dammed. And we’re back to the drawing board.

This is why my license plate says “CURE CJD.” The cure is the answer. That’s what we have to work for. We aren’t sure how the disease travels through the body and onto the brain once it enters. We aren’t sure if the feed ban is working now. We aren’t certain that these people in the U.S. dying of CJD aren’t in fact victims of a U.S. BSE outbreak.

I have just been contacted by a relative of a 40-year-old woman who died of CJD. Yes, 40-year-olds, 25-year-olds, and 30-year-olds are dying of CJD in America. Since our feed bans and animal testing procedures are an obvious sham, the only answer to stopping this madness is really finding the cure of this disease.

Here’s a link to the article about this latest research into atypical strains of BSE:

http://www.rapidcityjournal.com/articles
/2006/05/31/news/local/news05.txt

Before you eat that next burger, remember that America only tests less than one tenth of one percent of the cows eaten in this country. (See Vicki Sutton’s article in a previous post for more on that).

The CJD Family Conference is in July

The CJD conference in Washington, DC in July will be attended by people from all over the globe and takes place from the 7th to the 9th with Capitol Hill visits set to take place on the 10th. For more information, please call the CJD Foundation at 1-800-659-1991. Registration is $150 and the conference takes place at the Washington Court Hotel.

Speakers include Dr. Pierluigi Gambetti, Dr. Robert G. Will, Dr. Claudio Soto, Dr. Gene Major, Dr. Richard Knight, Dr. Neil Cashman, Lt. Col. Terry Besch, Dr. David Kocisko, Dr. Michael Geschwind, Dr. James Sejvar, Don Simms, Dr. Muneto Ueda, Deanna Simpson RN, and more. Speakers will be representing the U.S., Canada, Japan, and the UK.

If you know of anyone who will be attending from Australia, please let me know! This blog is, after all, for networking.

As someone who has lost three family members (known) to this disease, I will be especially interested in hearing Don Simms speak about his son’s progress with pentosan polysulphate (PPS) treatment. I do not know if I carry the E200K gene, but must consider the treatment options available in the long run if I am to get this disease like my mother did. Though I wouldn’t favor PPS treatment if I were to fall ill today from CJD, I am interested in hearing more about what we do know about this drug. Maybe we can push for me research on PPS in both the UK and the U.S. Then maybe someday, it will be a consideration in my life.

I’ve been planning to attend the conference all year, but without a current full-time job, this is going to be understandably tricky. If I am able to attend, I will be interviewing as many people as possible for podcasts and articles to be posted here at CJDTalk.

Mother’s Day Is Upon Us

Many people are missing their mothers this Mother’s Day, self included, because of CJD. I have no mother to buy flowers for this year because there is no cure for this disease. I have no mother to talk to when I’m sad because there is no cure for this disease.

You know what kind of woman my mother was? She took care of her family. She worked hard, even on the day we took her our of her home for the final time and off to the emergency room to find out if she had M.S. or Parkinson’s Disease. She worked that day! She could hardly walk, but was sending e-mails to her office. Her coworkers knew something wasn't right with her e-mails to them.

My mother took care of her elderly parents. Her mother had Alzheimer’s disease and her father, for reasons I can’t understand, was unable to properly care for her. My mother took them to doctor appointments, doled out their meds and drove them to doctors. She handled their finances. She was always looking for information on Alzheimer’s disease because she wanted to know everything about her mother’s medical condition.

My mother put my father through school in his late 40’s, working hard at her full-time job, looking after her high-school-age daughter and helping him with homework. That degree was hers just as much as it is his. And when my father couldn’t find work, she kept a roof over our heads.

She loved to laugh. She watched "Everybody Loves Raymond," "Frasier," and "Nick at Nite." She was a huge fan of Anderson Cooper. Her favorite foods were chocolate and coffee.

My mother was Super Woman, taken down by CJD a day after her 56th birthday. She faked it as long as she could until the ataxia (jerky muscle movements) and balance problems got the better of her. This was about a month before she died. I’ll never forget her screaming at me for no reason as her personality changed and I didn’t understand why. I’ll never forget her telling me she couldn’t recognize her own handwriting.

I most certainly will never forget one of her last sentences to my father, “I don’t want to be retarded.” She died about a week after saying that.

This blog is dedicated to all the families who don’t have a mother this Mother’s Day because of this awful disease. This blog is to encourage us all to keep their memories alive and to keep working for a cure so their deaths were not in vain. And this blog is also to encourage safer food in America, so other mothers, children, sisters, brothers, wives and husbands aren’t lost to this disease.

This weekend will not be easy for any of us.

It’s a Mad Mad World: US Pastures Threaten Human Health

The following article is one of the best I have seen about mad cow disease and food safety in America. It was written by my friend, Victoria Sutton and ran in the Paradise Valley Community College Puma Press. Looking at mad cow disease in this country from the inside, especially as a member of the media, is discouraging. I always see the same general and incorrect statistics and facts cited, along with glittering generalities.

Victoria’s article doesn’t contain any of this! She doesn’t give the bogus “1 in 1 million” statistic about CJD. Every newspaper article says only one in one million people are infected by CJD, which is untrue. Once you start working the numbers and factoring in the age of the patient, it becomes one in 9,000. Then when you add more factors, it is one in 7,000 – but that is going to have to be another post for another day.

Here is Victoria’s bio:

Sutton, Victoria, AAS Environmental Health & Safety Technology, BS, Life Sciences, Ecology and Organismal Biology, Arizona State University; 8-year volunteer/rehabilitator for Arizona Game and Fish (permit under US Fish and Wildlife); has been researching and presenting general disease, radiation and management strategy information involved with Chronic Wasting Disease since 2002 and has been researching and presenting comparisons between Chronic Wasting Disease and Mad Cow disease for over a year. Also included in research and presentation interests is the management and radiation of avian disease. Presentations have been made to hunters, upper division life sciences classes at Arizona State Univeristy and at the Arizona Game and Fish Symposium.

Now for the article:

It’s a Mad Mad World: US Pastures Threaten Human Health

If you can sit down and assimilate all of the public information lately on diseases, think of how many are related to animals. Avian Influenza (Bird Flu) and West Nile virus are two major ones. However, there is another very serious animal-related threat in our midst, and it mysteriously seems to be avoiding the press like we should be avoiding it ourselves. It’s called TSE, which stands for Transmissible Spongiform Encephalopathy, and it has several closely-related forms. One form of it is scrapie, which affects sheep. Another one is chronic wasting disease, which is spreading rapidly amongst deer, elk and even moose in the wild and on game farms. It’s also been found in mink and cats. If those still don’t ring a bell, think of a more familiar form: bovine spongiform encephalopathy (BSE), or Mad Cow Disease, and think of it as a real danger that’s in the US; grazing state lands and dotting landscapes. Could it also be on our grocery store shelves?

On March 13, 2006, a cow in Alabama tested positive for Mad Cow Disease. This was the third publicly announced case in the US. The United States Department of Agriculture’s (USDA) public response is that the animal was older and ingested feed made from rendered beef, including the spine and brain tissue which is thought to harbor the infectious agent, a protein called a prion. A law was enacted in 1997, one year after the Mad Cow epidemic in England, to prohibit the brain and spine from entering cattle feed, but this Alabama animal was claimed to be older than the law and it is inferred it contracted the disease prior to 1997. The USDA stated that the animal didn’t enter the food system; rather it was buried on the farm. Routine would dictate that all the animals in the herd that shared pasture, corrals and feed with the infected cow will be tested. Now if Mad Cow is supposedly spread to cattle because they ingested infected tissues, it could be thought that the Alabama cow wasn’t the only older cow to eat the infected feed. They are social herd animals and as many as possible are contained in one area, sharing food, soil, barns and pasture. There could have been many, many more that also ate it, became infected and entered the food system.


According to the USDA, “FDA's 1997 animal feed ban rule has proven effective at keeping BSE out of the human food and animal feed supply.” The USDA also states that 652,697 cows have been tested for the disease since June 2004. The nation has about 95 million cattle. The number of cattle tested so far is less than 1%. It does not seem likely that such a low percentage of tested animals would warrant that the feed ban has ‘proven’ program effectiveness, and nothing in science is ever considered ‘proven.’ On March 14, 2006, the USDA announced plans to scale back testing, despite the fact a cow had tested positive in Alabama the day before. The new number of tested animals will be less than 1 tenth of 1 percent. It is estimated that 1 million cattle worldwide have been infected. It seems that the USDA position is that if it’s not found, it’s not a problem, and efforts are ensuring that it will not be found via decreased testing.


The TSE in cervids (deer, elk and moose), chronic wasting disease, is very similar to Mad Cow Disease and has prompted a frenzy of current research. There are some comparisons that can be made in terms of the treatment of the diseases. Cervids contract the disease without ingestion and positive cases are higher in larger groups. Cattle are intentionally kept in large groups. It has also recently been noted that the TSE in cervids has been found outside of the brain and spine and in other parts of the body, including glands, the stomach, liver, pancreas and muscle tissue. The USDA states that risky cattle body parts include the brain and spine, whereas the prion has been found in most tissues of cervids. The USDA allowed the infected Alabama animal to be buried on the farm, and the TSE in cervids is persistent in soil and may be contracted through that environmental route.

So exactly what can happen if a person is infected by a TSE? The disease is called Variant Creutzfeldt Jacob (pronounced ya-cob) Disease, or vCJD. CJD can also occur naturally and is called sporadic or genetic CJD. Like Mad Cow Disease and Chronic Wasting Disease, all CJD forms are degenerative disease of the brain, producing sponge-like holes in the tissues. Also like the TSEs in animals, it is fatal and without a cure. It causes memory loss, lack of coordination, shakiness, incontinence, muscle stiffness and the inability to speak. These symptoms are very similar to those found in a patient suffering from Alzheimer’s Disease, and it has posed great concern for many because it seems that now CJD may be misdiagnosed as Alzheimer’s.

According to Dr. Colm A. Kelleher, author of Brain Trust: The Hidden Connection Between Mad Cow and Misdiagnosed Alzheimer's Disease, reports in medical journals state that approximately 5-13% of vCJD cases were misdiagnosed by physicians as Alzheimer's disease. According to the Alzheimer’s Association, it is estimated that 4.5 million people suffer from the disease. If 5-13% of these patients have vCJD, that number amounts to between 225,000 and 585,000 potential misdiagnoses. According to the science journal, Med-Research America (2005) 64, the number is in fact higher and is thought to be 5-30%.

The USDA states that the prevalence of Mad Cow Disease and the risk of contraction is very, very small, and that there is no evidence that people in the US will or have contracted it. Why would there be evidence? If a person is under the care of a physician for an ailment and dies from it, such as Alzheimer’s Disease, autopsies are not required and if a family wants one performed, it is very expensive. How would vCJD be discovered? According to Dr. Kelleher, the CDC does not require reported numbers on Alzheimer’s Disease, sporadic CJD, or variant CJD. The possibility of vCJD existing isn’t even tabulated by our disease authority.

There are many countries that have banned US beef, including Japan. According to a Japanese news source, Asahi (February 2006), “[Japan] government officials hinted at a further delay in resuming U.S. beef imports following a disturbing report by the U.S. Department of Agriculture that 20 sickly cattle were processed for human consumption. The animals in question had difficulty walking, which is considered an indicator of bovine spongiform encephalopathy (BSE). Although such cattle, known as "downers," were processed while Japan banned imports of U.S. beef, the U.S. government's report brings into sharp focus American laxity toward BSE, sources said.”

The bottom line is that science doesn’t know yet how TSEs are spread, but science knows that it does in more than one way, not only through ingestion. Science cannot yet state that cattle absolutely contract it without ingestion, but they can’t say it can’t happen, either. The unknown would seem to be a huge risk factor for the USDA and the Beef Industries, and if it’s not a risk for the government or for corporations that stand to lose everything if Mad Cow Disease is found more often, it should be considered a huge risk for us as consumers and as people who want to live long healthy lives.

If this is a concern for you, the only current solution is to drop beef from your diet. Watch the labels on other processed foods, and buy lamb and rice for your pets. The United Kingdom is reporting that dogs are contracting degenerative brain disorders, too. Until more is known, the unknown is a risk. To reduce the risk, buy your beef and dairy from a whole foods store and make sure it is free pasture and organic. These animals are typically healthier and less crowded than large-operation beef cattle.

The USDA was questioned on the comparisons and risk research currently conducted on Mad Cow Disease and Chronic Wasting Disease. The agency was also questioned as to why there is no information on their homepage, usda.gov, about the Alabama cow. The USDA did not comment. If the agency does comment, an update will appear in the May edition.

My apologies

I have been extremely sick/busy this past week. I never wanted the blog to go that long without an update!