Jennifer Mendelsohn recently reported a piece for Medium about @TrappedAtMyDesk, a presumed online cancer hoax which received a great deal of attention at Buzzfeed, Jezebel, and other viral-hypey websites as a real story--but no attention as an almost-certain hoax, once that became more clear.
"A video recently went viral claiming to be based on the tweets of a woman dying of a brain tumor," Jennifer tells Boing Boing. "My reporting shows there is almost no possibility it's real." Read the rest
Here's some of the branding used by Boobies Rock. Seems legit.
Adam Cole Shyrock, noted douchebag.
In Colorado, a scamming sonofabitch charged with collecting about $2 million through sales of breast-cancer-awareness merchandise, none of which helped breast cancer charities, has been sentenced to 14 days in jail. We wrote about this dirtbag back in 2012
, when the Illinois state attorney general began investigating his cancer-scam activities.
The Denver Post today reports that Adam Cole Shyrock was jailed for running a new scam in violation of a court order. He wrote a $36,000 check on a frozen Wells Fargo bank account to a T-shirt manufacturer to make t-shirts for "I Heart This Bar," a new scheme purporting to raise money for college scholarships. Man, some people never learn. Snip:
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Photo courtesy USA Today
Science blogger Orac has a detailed update on the latest in the story of a man accused of being a cancer quack Stanislaw Burzynski, whom the FDA and Texas Medical Board have recently slapped.
If you're unfamiliar with Burzynski, start with Liz Szabo's USA TODAY expose, "Doctor accused of selling false hope to families." Read the rest
As regular readers of this blog know, I have cancer, and I believe the law should show no mercy to people who exploit cancer patients and their loved ones. While it's hard to imagine that someone could be so heartless, there are people in the world who profit from our fear, and the lack of education around science and evidence-based medicine. The result of this cruelty: our suffering and death.
One doctor who has been long the target of such "false hope" concern is Stanislaw Burzynski, of "antineoplaston" fame. The Houston-based provider was recently featured in a major investigative takedown in USA Today reported by health journalist Liz Szabo.
Today, Skeptic and pro-science crusader Robert Blaskiewicz shares news of thehoustoncancerquack.com, a new online campaign calling for a congressional investigation into the Burzynski Clinic, and an examination of why the FDA's reviews of their operations have led to little more than hand-slaps. Why is this guy still in business?
Robert Blaskiewicz writes:
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Doctors behind three new studies and an editorial on the question of whether daily multivitamins make us healthier say: no, they don't. After reviewing available evidence and conducting new trials, one set of authors wrote, “We believe that the case is closed -- supplementing the diet of well-nourished adults with (most) mineral or vitamin supplements has no clear benefit and might even be harmful.”
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Here's a guide to the charities the Boingers support in our own annual giving. As always, please add the causes and charities you give to in the comments below!
Electronic Frontier Foundation
Could there be a year that's more relevant to the EFF? As Edward Snowden has made abundantly clear, there is a titantic, historic battle underway to determine whether the Internet is there to liberate us or to enslave us. EFF's on the right side of history, and I figure giving them all I can afford is a cheap hedge against the NSA's version of the future. —CD
CC continues to make a difference -- this year, they released the 4.0 version of their flexible licenses, a major milestone. More than anyone else, CC has reframed the way we talk about creativity and copyright in the Internet era, providing practical, easy-to-use tools to make it possible for creators and audiences to work together in a shared mission of creating and enjoying culture.—CD
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Stanislaw Burzynski, an internist, has treated patients with experimental, unapproved cancer drugs at a clinic in Houston. (Photo: Michael Stravato for USA TODAY).
An extensive investigative story in USA Today finds experts questioning why the FDA allows Stanislaw Burzynski, a doctor in Houston, Texas, to continue to sell his "alternative cancer treatment" to vulnerable patients and their families.
Burzynski calls his miracle drugs "antineoplastons," and first synthesized the sodium-rich compounds from blood and urine "collected from public parks, bars and penitentiaries." They haven't been approved by the FDA, but he has also "prescribed them as a treatment for AIDS, lupus and other conditions."
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The Arizona Republic has found a large cohort of elderly and retired people who claim to have been abused by TSA staff at Phoenix's Sky Harbor airport. The passengers claim that they were required to remove their prostheses (particularly prosthetic breasts worn by cancer survivors), and that their objections were met with threats and hostility.
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The New York Times speaks to experimental music composer Fred Ho about his “Sweet Science Suite,” which follows the life and work of boxer Muhammad Ali. Mr. Ho, 56, has advanced colorectal cancer
. “I’m hoping to be well enough to do the solos in the second movement,” he says. “But I don’t know. Right now I’m so weak and tired that I can only practice 10 minutes a day. But I’m still keeping up my chops.” Read the rest
National Cancer Institute headquarters, Bethesda, Maryland.
Harold Varmus, director of the National Cancer Institute, sent this email today to "NCI staff, grantees, advisors, reviewers and others," warning of increasingly damaging effects the ongoing federal government shutdown will have on cancer research and treatment at NCI. Even worse than the litany of known, present harm, is this grim prediction: the damage won't end when the government reopens.
A copy of this email was provided by a Boing Boing reader who was one of the recipients:
I am writing to keep you abreast of the ways in which the National Cancer Institute (NCI) and its extramural and intramural research programs have been --- and are likely to be --- affected by the current shutdown of the federal government. And I am also writing to ask for your help in responding to the difficult situation that we are likely to face when the government is reopened. Read the rest
Michelle Langbehn. Photo: Natural Grace Photography, via Washington Post
Michelle Langbehn has a rare form of cancer that affects about 1% of U.S. cancer patients. She was diagnosed in April 2012, shortly after giving birth to her daughter. She was 29.
She spoke to the Washington Post about how the government shutdown has affected her. The short version: she can't get the life-saving treatment she needs; a clinical trial that provides an option in a case where other more well-established treatment protocols have failed.
The Washington Post's Sarah Kliff explains:
After nine months of chemotherapy, she and her doctor began looking into other potential treatment options, including a trial at the National Institutes of Health. Langbehn began filling out the paperwork to apply last month. Things were going well until late September, when she got a call from the NIH: If the government shut down, the trial would not accept new patients. Now, she is among an estimated 200 patients turned away each week from clinical trials there. Langbehn has started a petition asking the government to re-open the treatment option.
“This was not supposed to happen. Nobody wanted the shutdown to happen," says Langbehn. "If I had a message, it would be that lives are at stake.” Read the rest
Maddie Major, 8, has leukemia. Image: A still from the CBS news report.
Maddie Major has leukemia. She's 8 years old, and she's had it recur four times. The clinical trial she now needs, having exhausted all other options for treatment, cannot be approved by the FDA because the FDA has been shut down, along with the rest of the federal government.
“I am completely blown away by how callus and how carelessly they’ve just kind of used us as their pawns to push their own agenda,” says her mom. From a Baltimore CBS TV affiliate's report:
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NIH Clinical Center [Wikipedia]
The ongoing federal government shutdown in the United States affects national health services in ways you may not realize, including cancer treatment activities at the National Institutes of Health, and disease outbreak detection programs at the Centers for Disease Control and Prevention.
For as long as the shutdown continues, the National Institutes of Health will turn away about 200 patients each week from its clinical research center, including children who have cancer. All existing patients at NIH will be treated, but no new patients will be admitted, and no studies.
NIH director Francis Collins explains how the slow-motion political disaster affects the nation's federal medical research facilities in this WSJ interview (paywalled).
He told the Journal that about 200 patients per week who would otherwise would be admitted to NIH's Clinical Center in Bethesda, Maryland, to participate in clinical trials will be turned away for as long as the shutdown lasts. That number includes an estimated 30 children per week, most of whom are cancer patients.
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Far more people have cells that briefly behave in cancerous ways then ever actually develop cancer. Most of the time, those cancerous cells are destroyed before they can do any real damage, and scientists can see evidence of this by looking at echoes of past battles with the immune system. If you've had chicken pox, some of the immune cells that fought off that disease will stick around, ready to more-quickly mount a response against a repeat attack. The same seems to be true with certain kinds of cancers. Scientists found immune cells in healthy people that appear to be primed to attack leukemia
— leftover remnants of the body's previous, successful skirmishes. Read the rest
In the Washington Post today, a story about an interesting problem in oncology: obese patients sometimes don't get enough chemo
for their body weight. And when an insufficient dose is given, this increases the risk that cancer will continue to progress, and kill the patient. [HT: Steve Silberman
] Read the rest