Response to the release of Burzynski 2, Havanna Nights

March 14, 2013

On this week’s episode of the Virtual Skeptics, I replied to what was learned at the premiere of the new Burzynski movie. The text of my segment follows the episode.

This week, the new Burzynski movie premiered in San Luis Obispo, California. We largely knew what was going to be in the movie since a couple of trailers had been released, the patients who appeared had talked about the filming, and there was a sort of credulous review had appeared a few days ahead of time and I believe the director may have mentioned it on a PBS fundraising specual a few days earlier. So we had a pretty good idea of what our proxies should be looking for. We really wanted to see if certain people who had been filmed, like Amelia Saunders or Hannah Bradley appeared and especially what was said about them. We wanted lists of people who appeared, to see if we might be able to put together who said what. Most of these people’s stories are well known, and we doubted there would be anything new. Also our people took down key quotes that struck them as important, like “skeptics are hiding behind their BS free speech.”

This is my takeaway, after talking to the people who I know were there. We are wiggly little scumbags who are hateful and slimy. We ridicule the desperate and dying. Some of us are paid by big pharma. Others are deluded and think that we are doing good but are being misled. But make no mistake–and this was hammered home to me by everyone I talked to–we are to them pure evil.

One of my big concerns going into the movie was how I was going to be portrayed and whether or not I was going to receive death threats. That my family was going to receive death threats or that I was going to be harassed at work. I feared this because of a letter that, as you know, was sent to my employer promising that I would be featuring prominently in the Burzynski movie. Nobody asked me for my opinion or to give a statement or to respond or clarify; they went straight to my boss. Fine. I’ve had wacky people contact my employers in the past. I fully expect it to happen in the future. Clips of this show, episode 13, were included in the movie. This is the episode that was quoted in the letter on my university chancellor.

As it turned out, our faces were blurred, our names obscured, and our voices were altered. No real identifying information. Which, you know, I’m OK with. However, there are some problems here. 1) What was served by contacting my employer other than to scare me? How dare the filmmakers say that we’re terrorizing people when they are doing just that. 2) Someone asked me about a quote, “we’re coming for you, you little polish sausage you.” The thing is, the quote is patently absurd if my name is shown, something that everyone here jumped on, like I hoped you would during the original episode. That joking was not conveyed to the skeptics in the theater audience. This might be due to the fact that not only were we given scary voices but also that apparently every time we appeared scary music played in the background.

It’s clear that the reason I’m in the movie in the capacity I am, as chief bad guy, is because I’m on video talking about the Burzynski Clinic. And this leads me to another thing that Brian mentioned. That when we kind of appeared on the screen, they put up a title card type thing that said, “skeptical teleconference” or something like that, and that a woman at the end of the show, wanted to know, “How did you get this footage of these scheming skeptics?” Um….we publicize our show constantly? If you can’t have real clandestine drama, you might as well make it up. My favorite bit was a tweet that I got around this time where a new account who followed like 10 people I do said, “It’s really interesting when you talk about Burzynski on the show. Could you do that more?” Really, Eric? Do you think I’m two years old?

I am interested in ultimately seeing it. I’m asking that the producer send a review copy to the James Randi Educational Foundation so a proper review can be done.

Or you could screen it in Minneapolis. Next week works for me, Eric, if you’re free.

Another thing. News broke on the 7th of January in skeptical circles that the FDA was conducting an audit of the clinic. A patient in the movie apparently said that she had been receiving a brain scan when she heard that the Clinic was being investigated again. This means that material was added to the movie after the 7th of January. The Burzynski Birthday Fundraiser was announced by PZ Myers on the 6th. So there was more than enough time for the filmmaker to clarify exactly what was meant in that episode when I said that there was going to be a little present on his birthday. Skeptics evilly, and with malice aforethought, raised $14.5K dollars for St. Jude’s. We then challenged the Clinic to match us, and it didn’t. That the director did not mention this fact seems to me inexcusable, making us look like we are big meanos who hate babies and morality. This demonization is unfair and at the expense of the truth–if you ever read theotherburzynskipatientgroup blog you know whose side I’m on. If he used the video clip of us that he cited in his letter to my employer, about us bringing a “present” to Burzynski and knowing what it actually was without clarifying it, well, that just speaks to his regard for completeness and accuracy. No messiah should need such fudging. It suggests to me that he’s forcing evidence into a pre-existing narrative of persecution.

References:

PZ Myer’s announcement of the Houston Cancer Quack
http://scienceblogs.com/pharyngula/2013/01/06/lets-make-houston-cancer-quack-burzynski-pay/

The Virtual Skeptics episode that appears in the movie:
http://www.youtube.com/watch?v=IK-yF8w6nLo

RJB

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Sleep Paralysis or Folk-Tale Motif

March 10, 2013

Consider the following hypothetical situation: a young woman is asleep in bed. She awakes but cannot move. She senses a malevolent presence near her. The being comes closer, pressing on her chest with a great weight. Now consider the following “real” account:

…Sarah came every night and sat upon some portion of the body [of her sister], causing great pain and misery. (Sidney S. Rider, “The Belief in Vampires in Rhode Island,” qtd. in Bell)

What was happening to the nameless sister? Was Sarah really a vampire attacking her in the night? Or was the poor girl suffering from sleep paralysis, perhaps exacerbated by sadness over her sister’s death? Or was it something else?

Many skeptics would immediately say that it’s a case of sleep paralysis, perhaps accompanied by hypnagogic or hypnopompic hallucination. During sleep paralysis, the brain is conscious or on the verge of wakefulness, but the body remains locked down. In addition to the paralysis, the sufferer may experience vivid and frightening hallucinations. These frequently involve an impression of a presence, often hostile. The dreamer may also feel as if he or she is suffocating.

Sleep paralysis is extremely common. Many people will experience it at least once in their lives. Some people experience if with some regularity. The experience can be terrifying and the hallucinations can seem very real. Many people swear that they are awake, and, in a sense, they are–more or less.

The experience of sleep paralysis varies over time and according to cultural expectation. In medieval and Renaissance Europe, people experienced demon attacks as they slept. The word “incubus” comes from the Latin “incubare,” to lie upon. While this may suggest the sexual nature of incubi, it probably originally referred to the feeling of oppression. According to the Oxford English Dictionary, the earliest use of of “incubus” in English is from Laȝamon’s Brut: there is a very numerous race–

heo beoð ihaten ful iwis

incubii demones.

ne doð heo noht muchel scaðe:

but hokerieð þan folke.

monine mo on sueuene:

ofte heo swencheð. (Brut, Cotton Caligula A 9, ll. 15782-7. Ed. Frederick Madden, 1847)

They are known, indeed, as incubus demons. They don’t do much harm, but they deceive people. They often afflict men in dreams.

It goes on to say the incubi “know” women and lead children astray.

Fuseli, The Nightmare. Wikipedia

Fuseli, The Nightmare. Wikipedia

In eighteenth-century Serbia, vampires visited their victims at night:

In addition, the haiduk Jowiza reports that his stepdaughter, by name of Stanacka, lay down to sleep fifteen days ago, fresh and healthy, but at midnight she started up out of her sleep with a terrible cry, fearful and trembling, and complained that she had been throttled by the son of a haiduk by the name of Milloe, who had died nine weeks earlier, whereupon she had experienced a great pain in the chest and became worse hour by hour, until she finally died on the third day. (Visum et Repertum, tr. and qtd. in Barber 16)

Since the second half of the 20th century, the assailants have often been aliens, bent on abduction and examination.

About 18 years ago I had gone to bed just like any night. I do not take drugs or drink. I went to sleep and some time during the night I felt something crawling up on me. It started at my lower legs and was crawling up to my chest. I could not open my eyes. It felt like it was some kind of hoffed animal. I wanted to move but could not. I was thinking what the heck is this what is happening. It semed to last for a few minutes then the weight of this thing was gone. I then could open my eyes and there was nothing. (phenomenalog.com)

In some cases, sleep paralysis has been suggested to sufferers, but they reject the notion:

A woman named Ruth told me that the crucial event for her had been a nighttime episode in which she’d felt terror, been unable to breathe, and heard footsteps. I asked her if she thought the symptoms could have been related to sleep paralysis. “no–because, see, I wasn’t asleep when it happened. I was on the couch watching David Letterman.” (Clancy)

Are we, as skeptics, justified in dismissing all these stories as sleep paralysis? No doubt we often we are. Many instances almost certainly can be explained by sleep paralysis, and it seems likely that stories of night hags and night demons originated with the phenomenon of sleep paralysis, but the stories are so prevalent that they’ve moved from the world of physical phenomenon to the realm of folk tale motif.

A folk motif is a recurring and recognizable element in traditional narratives. For instance, a cruel stepmother is a motif that appears again and again in folk tales. Another is the supernatural being who helps the hero or heroine perform chores. In the 1930s, Stith Thompson published his monumental six volume Motif-Index of Folk Literature. Entry F471 deals with dream demons. F471.1 is the Nightmare or Alp which “presses person in dream.” There follows a long list of sources. F471.1.5 concerns

Persons who at night become nightmare. Those who are born on a Thursday and christened on a Sunday must at certain times (on Thursdays) press someone or something.

E281.2 tells of a “Ghostly horse [that] enters house and puts hoof on breast of sleeper.”

According to Carl Lindahl, John McNamara and John Lindow in Medieval Folklore, the assaults of the mara, nightmare or night hag

were always connected with a feeling of anxiety and suffocation. The mara was believed to oppress and weigh her victim down when tormenting and riding it. There is also an undercurrent of latent sexuality more or less manifest in the mara traditions.

Jan Louis Perkowski, professor of Slavic languages, has published extensively on Slavic folklore. He has collected numerous tales of suffocating demons. For instance, Canadian Kashubs speak of the mwəra or succuba. He describes it as “a night spirit which suffocates its sleeping victims” (34). Among the accounts he records:

The succuba chokes. They said that it was a child who was not baptized properly. This person walks at night and chokes others.

They said that when people went to sleep it choked them.

Succuba–They are unbaptized children who died before they were baptized. They come to a person and they choke a person in the night….

A succuba is that which chokes people. She could crawl through a keyhole. Someone said that, while a succuba was choking them and then they grabbed, sometimes it was like a ball of wool and then it disappeared.

My brother Frank also caught one. A succuba, nightmare, also choked him. He had to sit up and not go to sleep on the pillow, so that it would come to him. He said that a man all matted with hair came to him, and he caught it.

The succuba had to be a person. It would come and choke you at night. Sometimes it was a neighbor. (Perkowski 35-6)

Demons, night hags, witches, ghosts, vampires and now aliens. All have attacked and suffocated victims in the night. It seems odd that we label all of these cases “sleep paralysis.” The Wikipedia entry on sleep paralysis has a section on “Folklore,” listing folktales from all over the world. A New York Times article attributes all sorts of folklore to sleep paralysis, as does a Skeptical Inquirer article by Susan Blackmore. Were all the victims suffering from sleep paralysis? Probably not. I have no doubt that sleep paralysis served as the origin of the motif, but the motif has grown beyond the physical phenomenon. It’s become a part of the story of beings that attack in the night, and it’s been a part of the story for a very long time.

This is not to say that people who tell stories of a great weight on their chests are lying or adding that element to the story because they think they should; however, the experience has become an expected element. We know that cultural expectations shape perception and memory. For instance, it has been suggested that some of the elements of Betty and Barney Hill’s alien abduction accounts were subconsciously based on science fiction television programs and movies. Certainly, the Hills’ story has influenced other accounts of alien abduction.

The very fact that experiences that would have once been perceived as demon attacks are now interpreted as alien visitations suggests just how much cultural expectations influence perception.

To return to the case of Sarah the vampire and her sister: this story is one of the earliest of the New England vampire cases. It concerns Stukeley “Snuffy” Tillinghast and his fourteen children. His daughter Sarah died of consumption, followed by several other family members. The bodies were exhumed. Only Sarah’s was found to be undecayed. Her heart was removed and burned. The deaths ceased (after one more).

The story of the Tillinghast family was recorded nearly a hundred years after the events described, in Sidney S. Rider’s 1888 article, “The Belief in Vampires in Rhode Island.” Folklorist Michael Bell researched the stories and found some information that corroborated Rider’s story: Tillinghast did have fourteen children, and several, including Sarah, died of consumption in 1799. There were also discrepancies: Rider says half the Tillinghast children died, but, in fact, only four or five died. Rider also says Sarah was the oldest child; she was actually the tenth. Enough of the story was corroborated that it is plausible the bodies were exhumed and that Sarah’s heart was burned.

However, there are elements of Rider’s story that are pure folklore and cannot be true. Some of these folkloric elements involve dreams. At the beginning of the story, paterfamilias Snuffy dreams that he has an apple orchard (which he did) and that exactly half of it died. This dream is presented as an omen of the death of exactly half of his children. Aside from problems of interpreting a dream as an allegorical prediction–or postdiction–the dream simply isn’t accurate: Snuffy lost plenty of children, but not half.

And then there are the sleep paralysis dreams. We’ve seen that an unnamed sister dreamed of Sarah sitting on her body. This was a “continual complaint” that occurred every night until the sister died.

So it went on. One after another sickened and died until six were dead, and the seventh, a son, was taken ill. The mother also now complained of these nightly visits of Sarah. These same characteristics were present in every case after the first one. (Rider qtd. in Bell)

Seven people, six siblings and their mother, dreamed every single night that Sarah visited them and pressed on them. Each of them had these dreams until they died or, in the case of the mother, recovered. These dreams, though they sound like sleep paralysis, cannot be explained by any real physical phenomena. It is not plausible that the family could have shared so many hypnopompic hallucinations. Like the prophetic dream, these dreams belong to the realm of folklore, not neurology.

This case is extreme and was no doubt intentionally embellished by a professional writer. Nonetheless, we should keep in mind when we hear tales of alien abduction that folklore may be at play as well as sleep paralysis.

ES

REFERENCES:

Barber, Paul. Vampires, Burial, and Death: Folklore and Reality. New Haven: Yale UP, 1988.

Bell, Michael E. Food for the Dead: On the Trail of New England’s Vampires. Middletown, CT: Wesleyan UP, 2001. Kindle ed. N.p.

Blackmore, Susan. “Abduction by Aliens or Sleep Paralysis?” Skeptical Inquirer May/June 1998.

Clancy, Susan A. Abducted: How People Come to Believe They Were Kidnapped by Aliens. Cambridge: Harvard UP, 2005. Kindle ed. N.p.

Kristov, Nicholas D. “Alien Abduction? Science Calls It Sleep Paralysis.” New York Times 6 Jul. 1999.

Lindahl, Carl, John McNamara, and John Lindow. Medieval Folklore: A Guide to Myths, Legends, Tales, Beliefs and Customs. Oxford UP, 2002.

Perkowski, Jan Louis. Vampire Lore: From the Writings of Jan Louis Perkowski. Bloomington, IN: Slavica, 2006.

Thompson, Stith. Motif-Index of Folk-Literature: A Classification of Narrative Elements in Folktales, Ballads, Myths, Fables, Mediaeval Romances, Exempla, Fabliaux, Jest-Books, and Local Legends. Rev. ed. Bloomington: Indiana UP, 1955.


Virtual Skeptics (Show 29, 6 March 2012)

March 6, 2013

RJB


Burzynski Movie to Air on Public Television? Get a physician on during pledge breaks!

March 3, 2013

On March 7th, PBS station CBT12 in Colorado is going to air the hagiographic Burzynski: Cancer is Big Business. CBT12 is notorious for using conspiracy theories to raise money at pledge time. It’s a cheap tactic. Last year, they aired the AE911 Truth movie during pledge week. It’s lucrative. Most conspiracy theorists, while they openly distrust mainstream media outlets, seem to yearn for the respectability that comes from being broadcast on them. And when their stories appear on CPT12, and I say this because the station continues to push this garbage, it seems that the conspiracy theorists reward the station.

I have come to expect the exploitation of ignorance on the part of CPT12. When it’s a truther movie, well, it makes PBS look bad, but that’s about it. But this movie has led so many people into Burzynski’s clutches, gotten so many patients entangled in his unpublishable trials and quack “gene therapy”, that I can say with a high degree of confidence that CPT12 is BANKING ON ITS VIEWERS’ LIVES.

Worse, at the breaks in the film, Eric Merola, the guy who contacted my employer in December, will be appearing alongside a spokesperson for the clinic to talk to the station’s fundraising director. This is unacceptable. Nonetheless, CPT12 has taken down misleading alt med propaganda before, so it is worth taking a strong stand and lobbying that they follow precedent and take this down.

Most importantly, one should contact Colorado state legislators who are also cancer survivors and alert them to this upcoming travesty, including state senator and esophageal cancer survivor Rollie Heath (rollie.heath.senate@state.co.us(303) 866-4872, fax: (303) 866-4543) and state representative and breast cancer survivor Dianne Primavera (dianne.primavera.house@state.co.us(303)-866-4667).

You might also contact the station, and demand that they either change their schedule or have an independent physician appear with Burzynski’s toadies. You know, because it’s a medical issue and a movie director and PR guy can’t add anything meaningful to the discussion.

Shari Bernson (she’s the host between breaks)
Director of Development
sbernson@cpt12.org

Willard “Wick” D. Rowland, Jr
President & CEO
wrowland@cpt12.org

Station:  (303) 296-1212
Toll-Free:  1-800-727-8812
Fax:  (303) 296-6650

Also, please register a complaint with the PBS ombudsman about the movie being aired at all and this weird little station’s repeated tarnishing of the name of public broadcasting:

http://www.pbs.org/ombudsman/feedback.html

We are making only reasonable, responsible requests. PLEASE follow through and contact the station and the PBS ombudsman.