reversals & such 2 (non-historical ‘fringe’ linguistics 21)

December 30, 2012

Hi again, everybody! I hope you’re all having a great festive season! All the best for 2013!

More on Reverse Speech:

Many of David Oates’ claims about RS are implausible on linguistic grounds, and he does not appear to have read more than superficially in the linguistic literature. And in fact the RS theory is prima facie implausible; it implies the existence of a major species-wide mental apparatus and a set of unconscious mental processes for which there is no other evidence and no persuasive explanation; and it arguably generates paradoxes with respect to the directionality of time.

Oates claims that the content of the messages produced in RS typically relates in a ‘complementary’ manner to that of the messages concurrently being produced in FS (albeit often couched in metaphors requiring analysis and elucidation). RS thus gives additional information to accentuate or strengthen the message of the associated sequence of FS. It may also reveal the speaker’s unconscious or unspoken thoughts, which may be in contradiction with their more conscious thoughts as expressed in FS. Oates believes that RS – being as it is unconsciously generated, free from conscious manipulation and indeed unperceived by the conscious mind – is always reliable as an indication of the speaker’s true opinions and attitudes; in other words, it is impossible to lie in RS, even while lying on the same issue in the equivalent sequence of FS.

Investigators, including trained phoneticians, typically find reversals much more difficult to hear in the absence of information about the corresponding FS, even after repeated listening. It might be granted that if RS were genuine some training might well be needed in order for it to be understood or even heard; but Oates himself, when questioned on this issue, is inconsistent, sometimes claiming that not only experience but training (by his organization) is required in order to hear RS reliably, but elsewhere stating that newcomers to the subject can immediately hear many cases of RS (perhaps after prompting, on which see below). The case for RS would be materially strengthened if several RS analysts could independently ‘find’ the same RS sequences, across a range of examples, without knowledge of the corresponding FS sequences.

Furthermore, the fact that many alleged reversals are supposedly couched in metaphors frequently renders interpretation difficult, even where the content of the FS is known.

Investigation of Oates’ claims is hindered by a number of obscurities in his discussion. The most important of these involves what appears to be a crucial methodological and theoretical inconsistency.

Oates and his followers seek to determine whether or not alleged cases of RS actually involve what he calls at different times ‘phonetic coincidence’, ‘coincidental reversals’ or ‘constants’, by which he means either a) the ‘accidental’ occurrence of very short sequences (typically single short words) which are (almost) the same in FS and RS (‘phonological palindromes’, such as dad) or b) cases in which the reversal of the FS sequence yields another equally possible sequence, so that there is a pair of corresponding forms, each of which is (approximately) the reversal of the other, such as say/yes. He accepts that in such cases the FS and reversed forms correspond consistently, and does not regard cases such as these as genuine examples of RS. (Oates suggest7 that there are some longer sequences such as Don’t regret (it/this) and I love my husband very much which also constitute phonological near palindromes but which he accepts as genuine RS sequences because of their length. However, these are not phonological near palindromes; the reversal of such an utterance is quite unlike the original.)

There are three major problems with Oates’ ideas at this point. Firstly, Oates is not consistent as to which sequences do and do not count as ‘phonetic coincidences’, ‘coincidental reversals’ or ‘constants’, treating very similar short expressions at times as belonging to this special category and at other times as genuine RS. Secondly, Oates’ explanation of the difference between cases of these two kinds is incoherent. His definition of ‘genuine RS’ involves reference to ‘the phonetic construction of the forward speech sounds as they were said in the instant they were captured on tape’; but this definition applies equally well to his ‘phonetic coincidences’ (etc.), and indeed to any reversal of a FS sequence.

Thirdly, Oates seeks to identify and exclude ‘phonetic coincidences’ (etc.) precisely because, if his general theory is to be deemed valid, he obviously has to claim that, in contrast with such cases, ‘genuine’ cases of RS are characterized by the occurrence of different reversed speech forms corresponding with the same FS form on different occasions. In other words, the very same FS sequence spoken by two different individuals, or spoken by the same individual on different occasions and when in different emotional states, may produce entirely different RS sequences. Oates needs to make this claim because he needs to argue that differences in the feelings and knowledge of different speakers uttering the same phrases (in the same accents), emotional shifts on the part of one speaker, or shifts in the style of the discourse, can be displayed through differences in the RS. However, this claim is quite implausible: there is nothing present in RS other than reversed FS sequences, which will obviously differ only to the extent that the FS differs. Certain differences of phonetic detail (including ‘supra-segmental’ effects such as intonation) might appear auditorily more salient in reverse than they do forwards; but this phenomenon could not account for the global differences between different reversals of the very same FS sequences which Oates often identifies. Neither could minor accent differences in FS have more than minor effects on the form of RS sequences.

In addition, if Oates’ distinction between ‘phonetic coincidences’ (etc.) and ‘genuine’ RS were accepted, evidence that a given FS sequence did not produce the RS sequence posited by Oates when reversed could be countered with the claim that there was no reason why it should produce the same RS sequence on different occasions. This obviously reduces the reproducibility of Oates’ investigations. Although there is no reason to accept Oates’ stance on this issue, careful replications of Oates’ experiments have used the recordings provided by Oates himself, so as to avoid such objections.

As ever, detailed references on request. More on RS next time!

Mark


This Week in Conspiracy (15 Dec 2012)

December 29, 2012

Goodeveninggoodeveninggoodeveninggoodeveninggoodevening goodeveninggoodeveninggoodevening and welcome to another episode of the Week in Conspiracy. Ours is a friendly environment where I compile the latest in conspiracy theory from around the web.

Honestly, I thought that the big news of the roundup would be the Oregon mall shooting (remember that?), but of course we had a rotten day in the States a few weeks ago, and we see people trying to make sense of it all. A LOT of confused and misleading information came out as the events in Connecticut were unfolding, and these will be the primary sources of the inevitable future conspiracy theories. I anticipate that the theories will come in the usual popular two varieties:

1) The shooter was brainwashed. This plot device allows conspiracy theorists to blame their preferred villain instead of the person who pulled the trigger. In fact, this one has already come out in a weird way. No you have no idea how weird this is. Stay with me. OK, so, Paul McCartney at the Sandy Relief Concert opened his set with Nirvana with “Helter Skelter,” which was the trigger for the shooter at the Sandy Hook School. QED. Some have floated the idea the shooter’s meds caused this. (Do they not see the natural correlation between people who are messed up in the head and psychiatric care?)

2) It’s (another) gun grab ploy by Obama. Dear Lord, hurry up, Obama! (Turns out the President is afraid the gummint is coming for his guns too!)

Mark at the Denialism Blog puts Mike Adams and his ilk over his knee, because the Health Danger wrote this.   Shepard Ambellas, uh, thinks that weaponized nuns pulled off the job.  Rush Limbaugh plugged the tired “Fast and Furious” angle.

I think that the most widespread conspiracy theory to have emerged is that the Colorado theater shooting and the Newtown massacre are somehow related to a financial scandal, and like a classic conspiracy theory, it relies on 1) superficial similarities between events and 2) arcane and irrelevant knowledge blown way out of proportion. But we’re also seeing a couple of anti-Israel conspiracy theories linked to this. Then there is this…odd timeline.

Elsewhere:

I think that if there were 3 Suns nearby, they would most likely be visible in other places too, and not just in China. (And that’s excluding the fact that we all be dead already.)

Secret documents (freely given) reveal that the vaccine denialist was never just a crazy person and was actually right all along, says denialist.

  • Merle Haggard is slipping. Here’s his anti-scary chemtrails anthem:

This Week in Mark Dice is a Horrible Person:

I stopped following him. He’s a pointless ass-clown.

Best Facebook update about the Sandy Hook shootings:

As much as I love a good conspiracy theory I please please ask my fellow conspiracy theorist friends to stop making yesterdays event into one! I beg of you !!!! I don’t wanna hear it really I don’t !!!!

Twit of the Week:

A level headed analysis of world events or hashtag abuse?

Shameless Smurf™ (@pansgrrl12/21/12, 6:08 PM Now the tyrants say “Let them eat genetically modified corn!” #Agenda21 #BilderbergGroup #NDAA #Monsanto #Corruption #GMO #Chemtrails

This one came from my other work, the Burzynski stuff. It just fell out of heaven, so I had to post it:

Jennifer @MadameBourdier @rjblaskiewicz @Malboury Anyway, the USA stole the A-bomb patent. France should steal back the cure for cancer. #Burzynski

Conspiracy theory of the Week:

  • William Tapley, the Third Eagle of the Apocalypse and the Co-Prophet of the End Times, continues to deconstruct “Gangnam Style”:

That’s all for now. I hope that we meet under happier circumstances next time.

RJB


reversals & such 1 (non-historical ‘fringe’ linguistics 20)

December 24, 2012

Hi again, everybody!

I turn here to another alleged phenomenon involving mysterious aspects of ‘normal’ language: ‘reversals’ and similar phenomena, including ‘Reverse Speech’ and special cases of ‘backward masking’.

Reverse Speech (henceforth RS) is a theory and an associated set of practices developed by David Oates and his followers. Oates, who has no background or qualifications in linguistics or other relevant subjects, is the ‘discoverer’ of RS. Oates began to develop his theory of RS in 1984, when he was managing a ‘half way house’ for ‘street kids’ in Berri, South Australia. He heard that an American evangelist was travelling through Australia preaching that rock and roll was ‘the Devil’s music’ and that if one played such music backwards one would hear strange, evil messages (see later). Oates found himself unable to refute these claims and eventually became convinced that backwards phrases existed not only in music lyrics (whether deliberately inserted or otherwise) but also in all human speech, and often quite spontaneously, with no deliberate insertion being required. He decided that these ‘reversals’ were systematic and of great significance; he and his then colleague Greg Albrecht produced the first book on RS. (Albrecht later claimed that Oates had ‘stolen’ his ideas.) Subsequently Oates produced a further book, and he and his followers have continued to publish on RS. By the mid-1990s there were many leaflets, articles and web-site entries produced by RS devotees, but many of these texts are naïvely expressed and argued, and the content is also rather repetitive.

Oates’ basic theory involves the claim that normal forward speech (henceforth FS), if heard in reverse, often yields short (1 2 seconds) sequences of intelligible syllables, at short intervals (often of only a few seconds). The RS sequences are supposedly accessed by simply recording a passage of FS and playing the tape in reverse. They represent genuine words or grammatically ‘correct’/normal phrases (normally in the same language as the FS; certainly in the language in which an adult speaker is thinking), mixed in amongst the ‘gibberish’ which one would expect to hear in reversed speech.

Oates believes that RS is another product of the important mental processes which generate normal FS. As the brain is constructing and delivering the sounds of speech, two messages are communicated simultaneously. One message (FS) is communicated forward and listeners hear and respond to it consciously, while the other (RS) is communicated in reverse and listeners hear and respond to it unconsciously. According to Oates, the existence of RS partly accounts for the apparent ability of human beings to obtain (sometimes) more information from a conversation or other interaction than is expressed in FS; in other words, it provides a physical basis for phenomena such as ‘intuition’ or ‘the sixth sense’. (Some of Oates’ supporters, such as Jim Stutt, argue that RS arose during the early history of Homo sapiens to compensate for the loss by most humans of active telepathic ability as language – in its FS form – became more important. (Compare the ideas of Julian Jaynes.)

Oates and his followers have applied the analysis of RS in various practical domains, some of them involving matters of great sensitivity and potential harm. If RS is not genuine, this work is valueless at best and quite possibly extremely damaging. The areas in question include child psychology, alleged cases of child molestation, other alleged criminal offences (this includes the ‘O. J. Simpson’ case) and the analysis and treatment of sexual and other personal problems and issues more generally. In addition, the RS enterprise has come to have an overtly commercial character. At one stage, one hour of tape analysis (typically involving much less than one hour of analysable tape) cost as much as $US125, or $US200 if performed by Oates himself.

As ever, detailed references on request. More on RS next time!

Mark


And I get email….

December 20, 2012

So apparently facebook has a feature that directs messages from people you’ve never been in contact with into a mailbox called “other”. If you look at the left-hand side of the screen under “messages,” the folder is in there. I had nearly 70 messages, and, let me tell you, I am a popular guy. (A shout out to Atlanta homegirl Angie Mattke who alerted me to this feature. You are sorely missed up here in the middle of the snowpocalypse!)

Apparently, in January of this year, I received a pair of messages from Pete Holcomb, who I don’t know:

  • Pete Holcomb

    I just read your article in the skeptical inquirer and posted to my page, and am willing to debate you point by point. I do not believe that Bland suffered the post hoc fallacy with Siverstien because he is offering a correlative fact in a causal chain of evidence. You then proceed to to suffer that fallacy somewhat in your ad hominim attack on Jones, because he was wrong about fusion therefore he must be wrong about 911. You never mention ockham’s razor once in the piece, or the fact that ours simply has more explanatory powe and better squares with observation and evidence. You are aware that there were plenty of mathematical proofs that Copernicus was wrong, but nobody believes that the sun spins around the earth. Gage in the beginning is citing Karl Popper’s black swan theory when he mentions the falsifiability of a scientific explanation and you seem to be confused about his point. Zionism and antisemitism are our Achilles heal and I think it is a distraction and you used it as a prolonged ad hominim attack. Regardless, we are winning this debate. I have a post on my wall of a squib blowing throw the corner of the north tower through solid concrete-how does compressed air do that? Have you seen Jonathan Cole’s experiments regarding Thermite on You Tube. How could you write for the ‘skeptical inquirer’ and not be aware of Karl Popper’s philosophy and his Black Swan theory?

  • Pete Holcomb

    You know I just called your bosses to complain. That is unacceptable to make the statement regarding Richards claim of falsifiable potentially of a scientific statement. He is obviously citing Karl Popper and you seem unaware of what he means. You simply have no business writing for such named magazine and be so uninformed as we are talking basic philosophy of science. You understand now why you are losing this debate? I have been involved in 911 truth since its inception and this constant lack of respect for the basic soundness and validity of our claims is what spurs us on. You are clearly lost here and have a sole purpose to run interference instead of engage in serious discourse. Like I said I am complaining to your bosses and will make you accountable for such a sorry lack of understanding.

I’m glad you enjoyed the article! How’s that new investigation coming? (By the way, nobody ever mentioned that someone had complained to my employer, so, well done.)

Here’s one that came to me in November, from Padz Evans from Petersburg, VA, apparently after I wrote something about Stanislaw Burzynski, the notorious cancer quack out of Houston.

Hey im sure you get this alot but im a fan of you ideas n the sense that i think your thoughts and beliefs are those of a fuck or fucking fucker that doesnt not posses the appropriate brian functionality to have a reliable or substantial opinion on matters that you cannot comprehend. I have one question for you and its really to satisfy my curiosity in how someone and feel such a way twords benificial activities that may cure cancer. My question is as follows.. how does cancers dick taste?

I’m glad you liked the article, Padz!

I was quite pleased to learn today that a complaint I sent to the ombudsman of PBS was quoted in Michael Getler’s column. It was about PBS putting up promotional material that seemed to be pushing a rather crummy and unconvincing straight-to-internet documentary on their website. Here’s the original letter:

I wanted to alert the viewer advocate about something that I saw on the PBS website and register a complaint. I notice that on the list of the most watched online videos at the PBS website that a 9/11 Truther video is currently very near the top. I understand that member stations maintain their independence, and that this is crucial to the mission. I do not see how it follows, however, that a video which is so misleading and factually inaccurate should be made available through PBS’s national website. It seems to violate basic program quality standards which PBS is known for. I am not advocating censorship, merely that PBS should examine the decision/process that led to this appearing on the national website and see if it aligns with the mission of public broadcasting to produce a better educated populace. I appreciate your attention to this matter.

Bob Blaskiewicz, Chippewa Falls, WI

Well, Jeff Sellars did not like what I wrote.

The individual is handicapped by coming face to face with a conspiracy so monstrous he cannot believe it exists. The American mind simply has not come to a realization of the evil which has been introduced into our midst. It rejects even the assumption that human creatures could espouse a philosophy which must ultimately destroy all that is good and decent…The conscientious citizen asks, “How can one be sure what the truth is?”…[We] must ascertain for [ourselves] what the facts are. [We] must accept nothing less than the facts— neither the majority version nor the minority version. [We] must view all the evidence until the face of truth is plain.
—President J. Edgar Hoover

Your cognitive dissonance is blocking your ability to accept Newtonian Physics. Building 7 collapses in 6-7 seconds at free fall speed. There’s nano sized thermite in the dust. www.RememberBuilding7.org

“Who is more foolish, the child afraid of the dark or the man afraid of the light?”

Cognitive dissonance is invoked in the movie as a reason the whole country is wrong and why only the true believers are right. They do not, however, cover the topic of irony.

 

There were a number of birthday invites that I missed (which is probably why I’m such a social pariah), honest questions about things I’ve written, and other missives (as well as stuff so abusive that facebook automatically deleted it).

Ah, modern life on the Internet!

RJB


THE LAST VIRTUAL SKEPTICS EVER (19 Dec 2012)

December 19, 2012

Burzynski Patient Leslie Schmidt’s Story

December 18, 2012
  1. The diffuse pontine glioma is a recurring character in this web series, a serial killer whose name and M.O. we know, but who we just can’t get the jump on. In this case, again, Leslie’s first symptoms were a droopy eye and stumbling. According to her CaringBridge story (truly a wonderful resource for families undergoing treatment), Leslie began radiation and chemotherapy (Temodar) on the 28th of March.
  2. Leslie’s family seems surprised by how quickly her condition seems to deteriorate. They are eager to start treatment ASAP, and they are already shopping around for other treatments. Leslie’s mother, Mary, seems a little suspicious of doctors who are opting for an aggressive treatment that discounts long-term effects, a sort of fatalism the family seems not ready to accept:

    We know that the doctors think she will not be with us long and we are concerned that they may be “discounting” any long-term effects of the treatment. Although we have full confidence in her doctors, we would appreciate if anyone out there can give us any direction on this.
  3. The next entry in the journal comes from mid April, when Leslie is having surgery to sew shut her eye. There seems to be some damage to a badly healing scratched cornea. She wears an eye patch.
  4. At this time the journal reports: 

    Mike & Mary have been in contact with other families over the past few days that have kids with the same illness to determine what treatment & therapy choices they are making. We are looking into significant diet changes as well as some other alternative medicine options. We are also continuing to seek out clinical trials, but finding there are few choices, plus you have to meet eligibility requirements. These can range from having no treatment at all (which leslie wouldn’t qualify) or currently having a recurring problem. At this time, we feel that we should be “pro-active” and do something while the tumor is at least stabilized. 

    As I read this I suspect that the family is actually getting desperate. While it’s important, I’m sure, that a child is properly nourished during this treatment, I see so many people fighting this disease and turning to alternative medicine and then futzing with diet obsessively. Perhaps it gives a feeling of control, of doing something rather than sitting by. 

    Through April as the course of radiation nears an end, Leslie’s port seems to not be properly installed, not in a dangerous way, but in a way that might leave her open to yet another procedure, and she is getting weary of doctors.
  5. As the family celebrates Leslie’s last day of radiation on 9 May and her weaning off of the steroids, her mother Mary starts contemplating alternative treatments. She suspects that cancer thrives in acidic bodies, an alt med belief that seems common but seems implausible to me since all stomachs aren’t filled with cancer. If treating cancer were only so simple, we’d have discovered that long ago and there would be much higher survival rates.
  6. In early May, Leslie’s back in the hospital for an infection, and then again at the end of May, when Leslie is suddenly taken ill:

    While attending Camp Smile A Mile Family Camp, Leslie had to be taken by ambulance to the hospital on Saturday night. She was not feeling well initially and did not want to participate in any of the camp activities. Her Mom and Dad did not push her and gave her the option to go home but she really wanted to stay. They noticed that her legs were bothering her when she walked and that she began to have shortness of breath. As a result, they had her ambulanced to the hospital in Alexander City, AL. That hospital would not touch her due to the brain tumor so she was then ambulanced to Children’s Hospital in B’ham and did not arrive there until 4:00 am Sunday morning. Her oxygen level and heart rate were tested right away and her oxygen level was extremely low (in the low 80′s-which requires one to have oxygen given). Her heart rate was high and they think this was because of a fever. Her blood work showed no signs of infection which is why she was in the hospital last week. However, it did show that she was very anemic, so they are now giving her blood in hopes to correct that problem. 

    Leslie remains on intermittent oxygen into the next month, it seems. Her mother is excited when an MRI shows the effects the radiation had on the tumor, shrinking it as expected.  Soon Mary is talking about colon detoxification and Ph and nutritionists, not a good sign as far as evidence based medicine is concerned. Nonetheless, it seems that the parents are sort of forced to sail in uncharted waters here, as there are not any studies to give guidance about maintenance doses of their current chemo in children.  But then we see this:

    We are also still considering the Burzynski clinic in Houston if Leslie’s case is accepted, as the FDA has placed restrictions on who they can treat and who they can’t (based on the success rate of the “proven” therapies such as radiation/chemo) since they are in process of FDA approval for their treatment. As many of you know, the out-of-pocket expense for this would be substatial. If this ends up being the chosen route, you will probably see some things on the site about fund-raising!

    And this:

    ….but we also have her on Ruta 6 & CalPhos which is a homeopathic remedy and has shown success in brain tumor patients through a study done by a Dr. Banjeri in India in conjunction with someone at MD Anderson.
  7. This is in all likelihood the Prasanta Banjeri, who treated–in the most horrifying story I’ve yet encountered–Chase Sammut, a kid who had the same tumor as Leslie. They also start “visualization” exercises at the recommendation of their nutritionist.

    On the positive side, however, Leslie is well enough to take up karate classes again, which is good to hear. It seems that at some point in July the family got word that Burzynski would treat Leslie and they visited his office on July 26th, a few weeks after her 7th birthday:

    Here is a quick update on Mary and Mike’s visit to The Burzynski Clinic www.cancer.med in Houston today. They both feel very strong and hopeful about it and want to get Leslie there ASAP. It is very expensive and the cost up front will be around $30,000 and they will have 3 weeks after arriving to pay that fee. Then, in all, the treatment will cost up to $110,000 ($7000 a mth.)….if insurance does not cover it….which they do not expect it will. Leslie will have to have another MRI done in B’ham before her treatment starts at The Burzynski Clinic. She will need to be at the clinic 7 days after the MRI scan has been done. She will be at the clinic for 3 weeks and then go home with a pump (a little bigger than a cell phone) in a back pack and have to wear it most all of the time. It will be administered through her port. She will be able to take it off for 2 hrs a day (eg. for Karate class). This treatment will be done for about a year. 

    I’m guessing nobody at the Clinic mentioned that Burzynski was convicted of insurance fraud (and the conviction was upheld). I can’t imagine that insurance companies would like doing business with him or trust him. But he apparently exudes trust and concern:

    Mike and I both feel that this therapy will not hurt her since it is non-toxic and we would always wonder “what if” if we do not try it. We did not feel like we were being fed a “sales pitch” of any kind while we were at the clinic. They simply explained their treatment and let their cases speak for themselves. I almost expected Dr. B. to be sort-of an “untouchable” type of Dr., but found him to be very caring and down to earth, as the rest of the staff. Since I have designed medical buildings for over 20 years, I sort-of expected his office to be “state of the art” with a lot of “show”. We did not find that either. Although this may be a knock to my profession, I felt comfort in that they are not out spending a bunch of money trying to make things look fancy. Rather, their concern is treating patients to the best of their ability. Dr. B. is now also doing gene therapy which is a highly targeted cancer treatment to the specific genes involved. If antineoplaston treatment does not work for whatever reason, he indicated that gene therapy might be another option for Leslie. With gene therapy, they have seen cancer disappear very quicly. However, he wants to start her on antineoplastons first since he and his staff are much more experienced in this treatment. At this time, we are planning on starting Leslie on August 14th. One of us will be in Houston with her for 3 weeks to learn about administering the treatment at home and so they can get her regulated to the correct doseage. For the next 2 weeks (before we leave), we are getting the house ready to sell and will hopefully have it ready to show by the time we leave.

    There are so many warning signs in this statement. First, never once in my experience has a doctor ever cracked open a dossier of patient success stories for me. Hell, that’s so scummy not even drug sales reps do that! Parading success stories is the definition of a sales pitch. Secondly, the claim that ANP are non-toxic is ludicrous and unsupportable–you only need to look at the trips to the ER by the other patients on this site–and one can only wonder what weird definition of “informed consent” operates at the Burzynski Clinic. Lastly, Burzynski has that other miracle cure, his absurd “personalized gene-targeting therapy.” He sets the hook in deep and yanks hard, he does.

    Leslie begins antineoplastons in mid-August


    Oh, when they start ANP, it seems that there is a fluid-filled cyst. I don’t know what it is at this point, but it seems to happen a lot at Burzynski’s Clinic and it seems to never be a harbinger of success. Now, it’s on the tumor not in the tumor. Perhaps it is a remnant of radiation? Don’t know:

    Dr. Burzynski noted a fluid filled cyst on the tumor that they will be watching closely throughout treatment. As the treatment starts working, additional fluid is common due to the tumor dying off and creating necrosis (dead tissue). This additional fluid has to go somewhere and it may gather in that cyst causing it to grow in size causing neurological symptoms. At some point, it may become necessary to aspirate the cyst. I don’t know for sure and did not ask today, but I believe this is an outpatient procedure. I have heard of this in numerous other DPG children, so I believe this is a common problem with this tumor although any procedure in this area of the brain stem is cause for concern. To reduce problems in this regard and to reduce swelling during treatment, they will be prescribing Decadron (steriods). Although we do not like this idea, it doesn’t appear that we can avoid it as natural anti-inflammatories may not be strong enough. As many of you know, we have been on a pretty strict diet since May. We are meeting with the Burzynski nutritionist tomorrow (I believe) to review their dietary recommendations to see how our diet may need to be adjusted for optimal results with their treatment. We understand that salt will be an absolute no-no, as increased sodium levels are a common side-effect of treatment.

    When Leslie has headaches and dizziness following the start of ANP, we get a sort of animistic folk-explanation for what is happening to her:

    Leslie did wake up with headaches and felt dizzy on Thursday. This is to be expected since the medication is going up and “attacking” the tumor. The body’s natural response to this is swelling. Therefor, they slightly increased her decadron to combat this reaction and she has been fine since.

    During the week of August 25, they report that they have bought Leslie a true cowgirl outfit, which is truly adorable:
  8. Notice the advertisement on that wall. (Grumble.) This is Ms Carla, one of the people taking care of Leslie. She takes Leslie to a Joel Osteen’s megachurch: 

    We attended Lakewood Church on Sunday with Ms. Carla from clinic.Although we were seated in the upper level, Carla spoke with an Usher who kindly escorted us down to the floor when it was time for prayer. They took us directly to Dodie Osteen’s line (Joel’s mother). Dodie laid hands on Leslie and commanded that the tumor “come-out”. 

    At least this treatment didn’t have any side effects.

    The family is trying to sell their house at this point. 

    On Sept 21, the family puts out an ecstatic blog post about her MRI:

    I’m going to go ahead and post the entire report prepared by Vestavia Imaging. I don’t know what some of this means, but I do know that it is good!!!

    “Again demonstrated in is a large infiltrating mass involving the right side of the pons and right middle cerebellar penduncle. There is a fairly large exophytic component to the lesion extending inferiorly into the subarachnoid space lateral to the right foraman of Luschka. The medulla is also involved in this infiltrating process. The fourth ventricle is displatced to the left. There is, however, no definite indication of hydrocephalus. The supratentorial structures have a normal appearance. Following administration of intravenous contrast material, irregular contrast enhancement is noted. The appearance of the lesion on post-contrast images suggest an aggressive tumor histology.

    “Comparison is made to study dated 8/9/06. In the interval side since the preceding study, the previously noted central necrotic portion of the tumor now has a more solid irregularly enhancing appearance. The overall anterior-posterior dimension of the lesion in the axis parallel to the right middle cerebellar penduncle appears decreased. This could be secondary to aspiration of the patient’s cystic or necrotic central component of the tumor. Correlation with surgical history is suggested. Careful search is made for evidence of drop metastases. There is no indication of seeding of the subarachnoid space at this time.

    “Impression: The pattern of contrast enhancement has become more irregular and the central necrotic or cycsic portion of the tumor has decreased in size. Has there been interval aspiration of the cystic or necrotic portion of the tumor?

    Ok, so there we have it. This Radiologist has no idea what type of treatment we have been doing, but he is asking if the tumor has been aspirated. So all of you understand, there have been NO aspirations on this tumor, at all…ever. Dr. Barbara (from Burzynski) called yesterday and said it was a good report, but she did not have the scans. Scans were overnighted to them yesterday and we should have their reading sometime today or tomorrow morning.

  9. On Oct. 30, we get some bad news, and it really does seem by now that the cyst is not a good sign.
  10. Written Oct 30, 2006 9:35am


    A Rough Weekend


    Hello, I just wanted to update on this weekend. We had a weekend filled with activities scheduled and very tired on top of it which did not help matters. While shopping on Saturday afternoon, I noticed Leslie was not walking as well and had less engergy. She rested the rest of the day and seemed to be ok on Sunday morning. However, she started the same symptoms on Sunday around noon and her speech started becoming slurred as well. We had started to taper her decadron down and it might be that we simply tapered too much. After speaking with the Dr.’s in Houston, we started her on IV decadron to get her feeling better. She is better today although still lethargic with some signs of symptoms. Today, the doctors prescribed a higher pill dose of decadron and we will decrease over the next few days to determine where she needs to be. I have her at home resting today.


    The symptoms could also be a sign of necrosis (dead tissue created from the treatments) taking up more space in the brain. We should know more after tomorrow’s MRI although we will not have Burzynki’s reading right away since a CD has to be overnighted to them.


    Please keep Leslie in your prayers as she goes through this phase. We have always expected there will be many ups-and-downs through this although it is still difficult when the downs occur.

  11. I mean, I’m just a putz on a PC with no medical training. But this necrosis thing, the tumor dying at the middle, seems to presage bad things always. As Dr. Gorski has explained, the pattern of a tumor dying in the center is more likely to be a result of a tumor outgrowing the blood supply. Otherwise, one would expect the thing to open lots of holes, like a vile swiss cheese, or shrink from the outside in. Are we seeing this pattern AGAIN? Why the hell is there nobody at the Clinic who seems able to deliver this news?! Maybe if we post enough of these, someone with authority will notice. 
  12. The tumor has grown, it seems, and the doctors in Alabama are going to put in a shunt to try and relieve some of the pressure. They talk to Burzynski:

    On that note, we did speak with Dr. Burzynski today regarding the latest scans. We had been told before that the tumor was larger, which obviously had us concerned. However, Dr. B. says we need to consider the “net” tumor size. The “net” tumor size is actually smaller. It is only larger because there is a lot of dead tissue around it and inside of it. This obviously causes the diameter to increase which is how it is being measured. This means that the medication appears to be doing it’s job because it has turned active tissue into dead tissue. He noted that some of the dead tissue could also be from radiated tumor that is taking time to “die off”. However, the dead tissue can also cause a host of problems of it’s own. The bottom line is that a lot of inflammation and irritation is occuring (which is fairly typical from what I can tell). What we must now pray for is for Leslie’s body to work in the most optimal way to rid itself of the dead tissue so that the inflammation and irritation will cease. As the body does this, Dr. B. says we hope to see the tumor collapsing on itself, creating a much smaller image on the next MRI. He described it like a blister on your skin. Over time, the body carries that liquid dead stuff away, then the skin collapses down eliminating the “mass” of the blister. This is sort-of like the same thing in Leslie’s head. The problem is, there is only so much room in a person’s head for this inflammation and swelling. This is why we must pray for her body to eliminate the dead tissue in the most efficient manner possible.

    The disease seems to be progressing but the family seems to interpret this as “getting better”, but the doctors in Birmingham seem to be willing to try to remove at least some of the tumor. Maybe that’s why they are hopeful:

    We returned home on Thursday afternoon and Leslie has been getting better each day. She gained some additional weight due to the increased steroid dose, so we believe her mobility is still not as good simply because of the added weight. Her eye movement is still not normal and the right eye is starting to turn inward. This is most likely an effect from the tumor rather than the hydrocephalus. 

    At the end of November, we hear:

    By Sunday night, her balance had declined significantly requiring her to be “cradled” to walk. In addition, she had almost no appetite and increased apathy. These are obviously very disturbing developments. We stopped the eye therapy on Sunday night to determine what was caused by decreased vision vs. tumor/swelling. On Monday morning, Burzynski prescribed an increased dose of decadron steroid, as it was most likely swelling. After 24 hours and no significant improvement, Burzynski told us to have a CT scan done and contact the neurosurgeon (Dr. Wellons) since this could be related to her ETV procedure clogging up. 

    By December 18, Leslie has had some more problems. I’m not seeing anything in here that looks like improvement, just a long decline. 

    I don’t have much “official” news, but it’s been a while since the last update so I want to let you know what’s going on. Late last week, Leslie’s balance and speech seemed to start declining more. The doctors increased her decadron again (we can’t seem to get it tapered off) and we have seen some improvement although the increased symptoms are still a big concern. Today, we decided with the doctors to have another MRI. This way, Burzynski will have a chance to read it before closing for the holidays. Plus, we will know where we stand and the doctors can to respond to the symptoms more accurately rather than “guessing” over the 2 – 3 things that could be happnening. We had the brain MRI this afternoon and will return in the morning for a complete spine MRI. I am overnighting the Brain MRI’s to Burzynski today and will drop off a CD to Dr. Wellons tomorrow. We are hoping this will all keep us out of the Children’s ER for hours on end over Christmas. Please pray that we can avoid this and enjoy a nice break over Christmas. We all really just need some quiet time. We realize that it won’t be easy either way, but being home is always better than being in the hospital.

    The family had a relatively uneventful Christmas, which is a deserved relief, but at the beginning of the year, we learn the tumor is STILL growing. 

    Unfortunately, the last MRI showed growth which I guess explains Leslie’s increase in symtoms. We have also been diligent about trying to get her off of steroids which is a factor as well. Based on our latest attempt, it appears that she will have to stay on some amount of steroids for the long-haul. Although Burzynski clinic says the ANP therapy is our best bet against this tumor, we have ordered an additional blood test that has been sent to California to determine if Leslie might be eligible for their (Burzynski’s) latest gene therapy treatment.

    Well, if the first insanely expensive not-a-treatment doesn’t work, try another insanely expensive treatment. That’s how they do it at the Burzynski Clinic, at least. 

    By January 9th, Leslie’s having a tough go, swallowing and speech are difficult, and she is suffering from paralysis on her left side. By the 30th, we hear this, despite no good evidence that this poor girl is responding:

    Leslie has been back on Burzynski’s antineoplaston (ANP) treatment for over a week now. The doctors in Houston are still hopeful that the increased tumor mass is actually more swelling and necrosis (dead tissue) rather than active tumor. The thought is that if we can get a handle on these things, then the mass will show decrease at some point. Obviously this is no small task, as swelling and necrosis are very serious issues.

  13. This is merely cruel. But it’s another $7,500 in Burzynski’s pocket, I suppose. In early February, Leslie is in the hospital with pneumonia.  She was back home by the 15th, but still in the thrall of Burzynski:
    She only had the November scan to compare, but we had another scan done in December which showed a 32% increase from the November scan. This being the case, we were pleased with the news on the MRI although symptoms seem to have increased which is a concern. We have overnighted a copy of the scans to Houston and should be speaking with Dr. Burzynski on the results tomorrow afternoon (fri.). to determine the best course of treatment from here.
  14. Leslie never rebounded. Her parents made the courageous decision to contact hospice and Leslie passed away peacefully early on February 20th.

    These stories of desperate parents working very, very hard for their children are depressing. I’m learning a lot about suffering through their stories. At no point in this narrative did I see anything that looked like meaningful improvement. I wasn’t there. But this line about how the cancer’s dying and THAT’S why your child is getting worse is such an evil one. It’s the same thing that I keep seeing over and over. We must find a way to put an end to this and get the attention of people in authority that this cannot continue. I do hope that former patients will see that there is a horrific pattern here and realize that they have every right to complain about the treatment they received. They will be helping future children by taking action.

    For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating toSt. Jude’s Children’s Research Hospital, who unlike Burzynski, charges nothing to treat sick children. 


channelled languages and similar phenomena 10 (non-historical ‘fringe’ linguistics 19)

December 16, 2012

Hi again, everybody!

If extraterrestrial aliens genuinely visit Earth, it is obviously possible in principle that they may be able to learn to use contemporary human languages, and indeed it is frequently reported that aliens have been able to learn and use the languages known by the witnesses, or other human languages ancient or modern. For example, Marc Tolosano reports a (single-witness) case where ‘ufonauts’ allegedly encountered in 1983 in France spoke French fluently (and claimed that their species was familiar with all human languages).

There is a sub-set of cases of this general nature which involve alleged contemporary extraterrestrial knowledge of unexpected human languages, notably ancient languages such as Latin and Greek. M.H. Edwards (see earlier) discusses several cases of this kind. Obviously, one possible explanation for such ability (if genuine) involves visits to Earth in ancient times and the subsequent transmission of the knowledge acquired at that time (or the retention of the knowledge by aliens with very long life-spans).

John Dean reports contact with aliens from various planets, notably one known as Korender. His account involves a common interplanetary language called Galingua, which, is allegedly the source of Latin by way of ancient contact, or else has a common ancestor with Latin. Galingua and the language of Korender are both spelled alphabetically (with thirty-nine wholly novel letters with names bearing no relation to their phonetic values) and ‘phonetically’ (presumably this means ‘phonemically’); in Korendian, however, pronouns and numerals (cardinal and ordinal) are apparently represented logographically, with single symbols, despite being polyphonemic. Dean offers (often using non-standard terminology) a brief summary of Korendian grammar (very regular but otherwise suspiciously Indo-European in character, with only a few intriguing features) and punctuation, and a vocabulary.

Paul von Ward ascribes special status and universal applicability to the devanagari script used for Sanskrit and to the language itself. Like many non-mainstream writers on Indian matters, he ignores/rejects what has been learned about the Indo-European origins of the language, and he implausibly interprets Sanskrit and its script as the ultimate ancestors of all later languages and alphabets, which have allegedly deteriorated and suffered from loss of phonetic range and expressive power. He attributes the invention of devanagari to ‘Advanced Beings’, extraterrestrial or inter-dimensional beings whose activities are reflected in myths around the world. Von Ward is more widely read in linguistics (as in some other disciplines) than most such promoters of ‘ancient astronauts’, but his ‘understanding’ of the subject is very uneven and idiosyncratic.

One example of alleged extraterrestrial knowledge of ancient human languages involves the work of Paul Potter, who upholds the veracity of the very strange ‘messages’ which well-known abductee Betty Andreasson (now Luca) reportedly received (over a long period) from alien entities. Those which are not in English are simply strings of words familiar or otherwise, drawn (often with some distortion) from Latin, Greek and other languages; most of them are Latin or Greek words or English/pseudo-English words based or apparently based on these languages. Where a word exists in inflected forms in the source language, the citation (dictionary) form is virtually always the one which appears here, and there is no grammatical structure. The sequences do not exemplify language in use; they are lists of words. Potter translates the ‘messages’, adding grammar as is convenient to his proposed message. It is not at all clear why aliens would communicate like this; if they knew Latin or Greek, they could surely write in these languages. Human fakers (who may not actually be familiar with Latin or Greek but who could easily possess dictionaries and a conversion table for the Greek alphabet) must be suspected.

There are in fact other cases involving UFOs where a string of the citation forms of words taken from a foreign language is presented as if it were a meaningful sentence. One such case arose in the Garden Grove abduction case of 1975, later acknowledged as a hoax. The sequence (allegedly channelled) was nous laos hikanō (early Greek: ‘mind’, ‘people’ as in we the people, ‘[I] come’). A gloss ‘I come in the mind of man’ was offered; but all three forms are citation forms, and the grammar has merely been added by the translator. (See Larson, 2002.) Another case involves what appears to be a single Modern Greek word (in Greek script) in the written material displayed on artefacts supposedly associated with the Roswell Incident/Alien Autopsy case. However, the word includes a common spelling error grounded in the ignorance of many less-educated native speakers about the origin of the form. This again suggests the possibility of fakery.

Other UFO advocates also proclaim human languages (ancient or modern) as currently used by aliens. Often, the actual origin of the favoured language is said to be extraterrestrial (which would obviously require adjustment to accounts of the relevant human language ‘families’). The best current example is the Aetherius Society, founded by George King. The Society – like von Ward (see above) and other non-mainstream writers on India – ignores what has been learned about the Indo-European origins of Sanskrit, and regards it not merely as the ancestor of all human speech but as vastly ancient and the main lingua franca of a whole series of inhabited planets. They consider that it was ‘scientifically and metaphysically’ devised and is derived from fifty primeval sounds (which, by way of misconceptualisation, they confuse with the ‘alphabetic’ letters used to write the sounds of the language); these sounds themselves are derived from features of the Chakras (supposed energy vortices in the ‘subtle’ body of a human being).

The extraterrestrial ‘master’ Aetherius was extensively channelled by King, providing links with this complex inhabited universe and normally using King’s own Southern English English. The skeptical astronomer Patrick Moore exposed King’s claim that Aetherius/King could handle questions in any human language; the medium was nonplussed by very simple questions in Norwegian and even French.

As matters stand, the provisional skeptical conclusion on the reality of extraterrestrial languages (spoken and/or written) and on extraterrestrial knowledge of human languages must be that no known case is truly convincing.

As ever, detailed references on request. More next time!

Mark


channelled languages and similar phenomena 9 (non-historical ‘fringe’ linguistics 18)

December 10, 2012

Hi again, everybody!

Some reports of entire UFO-related languages involve alleged ancient visits to Earth by extraterrestrials; otherwise unknown scripts presumably encoding otherwise unknown languages of alien origin are described. For example, George Hunt Williamson reports that some Amerindian tribal peoples live close to rock faces (some of them known as ‘Rocks of Writing’) upon which mysterious ‘hieroglyphs’ are carved; they deny any connection with these symbols, regarding them as ‘timeless’. (Shades of the Bradshaw Paintings of Western Australia!) Williamson attributes the symbols to extraterrestrial entities who visited the area in ancient times. However, it is not in fact clear that these symbols are linguistic or even symbolic in character, still less that they are of genuinely mysterious origin.

One especially dramatic case of this kind (albeit ultimately lacking any corroboration) involves not written language but 716 grooved stone disks thirty centimetres in diameter, hardened with cobalt and displaying central holes, which were reportedly discovered in the Bayan Kara Ula mountain range in Western China in the period 1938-1962. It is suggested that these disks can be compared with vinyl records and may contain much data. The story presented recounts that a scholar called Tsum Um Nui (whose existence has not been confirmed) claimed that the grooves contained script and eventually announced a decipherment; the translation offered (the details were later disputed) indicated that the disks were artefacts of the inhabitants of an extraterrestrial spacecraft which landed in the area around 12,000 years BP and was unable to take off again. The oral legends of local tribes-people apparently referred to a massacre by their remote ancestors of small-statured, ‘ugly’ newcomers; this description was interpreted as referring to the aliens. The case was allegedly published in 1965 by Chi Pu Tei as ‘The Grooved Script Concerning Spaceships Which, as Recorded on the Discs, Landed on Earth 12,000 Years Ago’. This matter has been a ‘favourite’ among believers in extraterrestrial visits to Earth.

One Karyl Robin-Evans (1980), supposedly published posthumously, allegedly contacted a small-statured tribe known as the Dropa in the same general area. The Dropa believed that their ancestors were not human but had come from the Sirius system; after a crash-landing in the remote past which brought them to Earth, many were massacred, but the community was able to survive and eventually became the Dropa. This legend was interpreted as referring to the Bayan Kara Ula event. The story appeared suspicious to interested parties of all persuasions, and much later David Gamon (1995) admitted that he had been the hoaxer. It appears probable that the entire case is itself a hoax; but, in any event, if the disks ever existed they have now apparently disappeared, and further study is thus (at present) impossible.

Some other claims of this general type are even more extreme, for instance the utterly implausible claims (linguistic and other) surrounding ‘Mantong’, which (as I have recounted elsewhere) is said to be an ancient language/script reconstructed from the English names of the letters of the Roman alphabet and various short English words associated with these. The background story (often termed ‘the Shaver Mystery’) involves alleged subterranean humanoid but non-human beings known as the ‘dero’ (degenerate and wicked) and the ‘tero’ (good), the products of a disaster which occurred 20,000 years BP.

In like vein, Alexandre St. Yves d’Alveydre reported that the ancient ‘Vattanian’ language, along with an alphabet of 22 letters (suspiciously corresponding one-to-one with those featured in Indian, Hebrew, Roman and other human scripts), was revealed to him in 1885 by a race of beings living in the paradise of Agartha. The Vattanian vocabulary allegedly expresses archetypal notions and some of its words and concepts supposedly persist in human languages; there is, predictably, little attention to matters of grammar.

Some Latter-Day Saints sources continue to promote the veracity of the ‘Reformed Egyptian’ in their Book of Abraham and other texts associated with The Pearl of Great Price. Some of the texts are read as referring to other inhabited planets, which feature in LDS theology (notably, the supreme planet ‘Kolob’. When the early LDS leaders claimed that this was the language of the plates which an angel lent to them to be mystically translated, Egyptian had not yet been deciphered, but the small pieces of genuine Egyptian text presented in LDS sources were already known at the time and have subsequently been interpreted quite differently.

There are also cases where alien linguistic items are said to have been ‘borrowed’ into human languages (spoken and/or written) – or where humans themselves are said to be of extraterrestrial origin, which is reflected in some linguistic features. For instance, Brian Crowley and Anthony Pollock hold that the builders of the alleged monuments on Mars (such as the ‘Face on Mars’) were themselves human; the species initially evolved (contrary to all appearances) on Mars and only later migrated to Earth as local conditions worsened. They trace various names and other words, found in Welsh, Irish Gaelic, Egyptian, South American languages, etc., to a Martian language. Of course, as with channellers of ‘Atlantean’ and other such material, they are free to propose any forms which they believe might lie behind the human language data, claiming that their extraterrestrial sources provide corroboration.

As ever, detailed references on request. More next time!

Mark


Luna Petugine’s Story

December 8, 2012
  1. Following the initial diagnosis, eleven hours of emergency surgery took a hard toll on Luna and left her very weak on her left side and unable to swallow (she was fed through a tube after that). Conventional therapy was very hard on Luna, but in December 2008, the tumor had shrunk enough that the doctor could attempt surgery, and they went through a course of dangerous surgeries over the next few months, which Luna tolerated fairly well, according to her parents’ website.  But the tumor kept growing, and this made them desperate.
  2. They met with Anthony Michalski, their consultant in pediatric oncology at the Great Ormand Street Hospital. This interaction and the collaboration of the pediatric oncology department at GOSH was partially documented in the BBC 2 film, A Tough Line. When they review scans following her string of surgeries, the entire team–an entire room of specialists–agrees that the tumor, which is now compressing her brainstem is recurring and that the current treatment is not working. Michalski wants Luna to go on etopocide to prolong her life; a cure, while possible, would likely not be the ultimate outcome. They agree to go on the meds, but when no physician in the UK can offer them a cure, they find Burzynski on the Internet. 
    He tells them exactly what they want to hear. According to Luna’s website:

    There is no more treatment that can be done in the UK. We went home and cried for several days then we looked at Luna and thought hang on she’s not crying we cannot give up she has fought so long and hard and not a day passes that through all of this she hasn’t smiled. So we searched and searched asked questions and somehow found contact with another family who’s daughter had exactly the same disease and discovered there was something out there.

    A treatment call Antineoplaston therapy which has had amazing results in the US. We have to try this.


    The cost to meet the Doctor for assessment is £20,000 
    If Luna is accepted the treatment then costs £50,000 a year.

  3. In late May, and early June, Luna’s story was in the media, in The Sun, in the Watford Observer, and the Sunday Express as the family was actively raising money for Burzynski:
  4. At the end of July, 2011, the family arrived in the United States searching for a cure. By the end of August, back in the UK, they knew that they would be in Houston by September 12. 

    The traditional treatment seems to be having an effect, keeping the disease from growing. It is an “effective agent,” perhaps the best possible outcome at this point. Nonetheless, the family presses ahead fundraising for Burzynski. They raised £100,000 for Burzynski in a mere 8 weeks.

  5. They report to their consultant in the UK after their trip that Burzynski told them that he has 30% of patients have a good reaction, using the clinically substandard metric of “stable disease”  a substitute for “success” that no other researchers find acceptable (especially when he has mentioned there might be a cure!). According to a site review at Burzynski’s clinic
    “Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”
  6. After this consult in the UK, Luna’s doctor remarks, 
    “But what you hear quite a lot is, ‘how do you know that he or she is going to be ‘the one [who has a successful 'miracle' treatment]? … And the phrase that makes my heart sink is ‘We’d never forgive ourselves if…’. Actually, it’s not about them forgiving themselves. It’s about them doing the best for their child. And the focus should be what’s happening for the individual child rather than parental emotions. It’s tough because it’s so understandable [...] that you are going to do everything in your power to hunt down the last chance of cure, but where that becomes a futile exercise is a difficult call, a difficult line. ” 
    This is the point that an ethical, concerned doctor takes away from a professional lifetime of caring for children, something that Burznyski seems to have never considered. (It apparently doesn’t fit his business model.) 
  7. Here is a photo of a physician watching parents walk away from a treatment that is working as he’d hoped: http://pic.twitter.com/EQ1vEIQK
  8. On October 10, this photo was uploaded to facebook:
  9. I have so many photos in front of this…tomb that it’s hard to imagine. They really are at death’s door.
  10. One week later, on October 17, the message goes out:
    Little Luna is currently in hospital and not too well. Our thoughts are with all of you xxxxx
  11. So quickly does Luna’s condition deteriorate it’s difficult not to think about how quickly Rachel Mackey nosedived after starting ANP and how groggy she was. 
  12. Once Luna was on the Burzynski treatment, her sodium level went insanely high. Her REAL physician’s reaction to this news, which was captured on film by the BBC, tells the whole story about what a horror antineoplastons are:
  13. Here’s a doctor hearing that Burzynski’s ANP treatment had put Luna in the emergency room with a sodium level of 178. http://pic.twitter.com/TjzNXKQ0
  14. This is much the same deadly side effect that nearly put Adam McArthur into a coma. That Luna is in a sorry state is immediately apparent. She is chugging water incessantly throughout the clip and slobbering uncontrollably. No matter what a Burzynski supporter says, this is a toxic treatment.
    (I should note that this disturbing film is really important to understand the horrible choices that parents are forced to make. I recommend it, lest you think anyone can take writing about these issues glibly. You can’t.) 
  15. By February of this year, the ANP has proved to have been a resounding failure. Burzynski, just like with Adam McArthur, tries to get them on his ridiculous “gene-targeted” therapy; it’s basically a Chemo Colatta, apparently mixing drugs that have not been tested together, but don’t take my word for it:
    Luna and her family have been talking to Doctors in the US at the Clinic, who have agreed it is unsafe to put her back on the Anteneoplaston Therapy because her tumour is so close to her brain stem. They have however suggested they put her on a treatment called Gene Targeted Therapy. This is where they take a sample of the tumour and in a lab test it’s genetics and test what drugs will work against it. Then then will give those drugs to Luna. The family are very excited because they knew the Anteneoplaston could eventually be too much for Luna, with possible fatal consequences and of course they are desperate to cure her. The Gene Targeted Therapy is having amazing results in adults so we pray it will do the same for Luna. We now need to continue to fund raise so the family can start the treatment and carry on with it. Any fund raising ideas please email us via the website. Thank you x

    From this point on, it is uncertain to me what their relationship with Burzynski is. They seem to have continued fundraising but were working with doctors in Boston. 
  16. In early March, Luna’s mother appeared in a strange article on the typically useless HuffPo, apparently convinced that breast implants had caused her daughter’s cancer:
  17. The announcement goes out on the 25th of June:

    It is with a heavy heart that we write this update. Despite battling against all the odds over the last 3 years it saddens us to tell you Luna is losing her battle. Lucy and the family took her back to GOSH on Friday after she appeared to be deteriorating in front of their eyes. A CT scan gave the devastating news that not only had the tumour grown but that it now appears inoperable and beyond treatment. The family have been told to take Luna home and cherish the time they have left with her. The picture here shows Luna, her siblings and cousins enjoying a family day for their Popsies birthday. The family continue to show unprecedented strength and dignity throughout and we have nothing but admiration for them – especially Luna x
  18. They carried their daughter very, very far. Her father ran a damned marathon for her. These parents did everything that their instincts told them to do.
  19. On August 8, 2012, the sad, sad news came that Luna had died:

    On behalf of Lucy and Mario It is with great sadness that we share with you that our Beautiful Luna fell asleep very peacefully with mummy and papa holding her tight to become a shinning star, and we thank her for all the wonderful memories she leaves with us, and thank you from the bottom of our hearts for all your support and love you have shown us in everything that you have done.

  20. On the 16th, the family–and the whole community that sprang up around her—said farewell to their daughter. 
  21. Her family has continued to memorialize their daughter, and I do hope that they continue to press Parliament for more funds for brain cancer research. 

    To learn about legitimate clinical trials, please visit clinicaltrials.gov. To help children receive top-notch, free cancer care, please donate to St. Jude’s Children’s Hospital

Adam McArthur’s Story

December 7, 2012
  1. This is an especially sad story. His wife tells the story about the first days, waiting outside while Adam was in the operating room. The surgery was successful and the doctor suggested it was “possibly a mid-grade [glioma].” In three days, Adam had sprung back:

    That’s when we started researching like crazy.  Regardless of what the result was, we were going to go alternative.  Adam definitely did not want chemo or radiation, and the more research we did, the more comfortable we felt with that decision.  

    If the tumor recurred, Adam’s prognosis was probably very bad. They made (generally healthy) lifestyle changes and stopped using cell phones, hoping to ward off a return of the cancer. They also got in contact with the Burzynski Clinic, who are completely incapable of making any promises. Apparently, by the end of January, they were planning to go to Houston.
  2. Their first consultation with the Burzynski Clinic was on the 6th of February of 2012. The parents were not available and missed 2 of their children’s birthdays during that trip. They rented a Chevy HHR, left the kids with the grandparents, who were in from the UK, and drove down to the clinic. And then they were hit with the bad news, and an interesting look at what goes on inside the Burzynski Clinic (emphasis added):
  3. Dr. Szymkowski met with us to discuss Adam’s medical history and confirm the details of his brain cancer.  She also briefed us on the two possible approaches that Dr. Burzynski would take in Adam’s case.  The first case scenario is his patented antineoplaston therapy.  To qualify for that therapy, you have to apply to the FDA for special permission, and show that the cancer is “persistent” after using traditional therapy.  Well, we assumed that this approach would not be appropriate, simply because the tumor has been removed and hasn’t had time to become what could be considered “persistent“.  We then got to meet the man himself!  The meeting lasted less than 10 minutes.  He briefly explained that he would most likely be using a “gene targeted” approach to treat Adam’s cancer.  [...]  One of the medications is sodium phenylbutyrate, which is one of Dr. Burzynkski’s signature medications.  We were definitely excited about that one, because obviously we can only get that here.  After being shuffled around a bit more, we were then sent to the financial coordinator.  She showed us the fee chart that we had already received in our information packet.  So, no surprises there.  But… then she starts lis[t]ing the medications that Dr. Burzynski has prescribed for Adam, which are not included in the treatment costs.  Sprycel… $8,314.80.  Votrient… $3,098.40. (emphasis added)
    The family found that the cost would be in the area of $25,000 a month
  4. Clearly these patients were being told that Burzynski would be treating these patients. Legally, this is very interesting since the entire premise of the TMB withdrawing their complaint against Burzynski in October was that Burzynski was not directing treatment.

    Bullshit. And this is going on even as his lawyers are arguing in court that he is not responsible for the “decisions” that his doctors make, an excuse that actually persuaded a judge! I wish I were more familiar with the workings of law, as I suspect that such behavior is as ethical as perjury. The family then became aware of the serious side effects of these chemo cocktails that Burzynski was proposing, contrary to the hippy-dippy natural side-effectless hype that his supporters parrot:

  5. At home we started talking.  I did some online research into the drugs, and really didn’t like what I was reading.  Side effects like “severe or like-threatening liver damage”, and “may cause you to develop a hole in the wall of your stomach or intestine”.  My favorite one was, “may cause abnormal passage in the body”.  Abnormal passage?  So, not only would we have to spend $25,000 a month for the drugs, but Adam might develop a whole host of other problems as a result. 
  6. The family had initially decided against any chemo treatment, but (surprise, surprise) when they announce this to the Clinic, the doctors tell them that they have found lesions on the MRI, which makes Adam a potential candidate for one of the 60  bogus ANP trials that never seem to get finished or result in any meaningful publications.
    The family is about to back away from the therapy and, and only after that threat to Burzynski’s bottom line does the Clinic bother to inform them that there are more lesions in Adam’s brain:
  7. Dr. Sano was very nice, and said she would certainly repect our wishes.  However, since they found lesions in Adam’s brain this morning, it looks like the cancer may have returned and therefore the drugs would really be necessary.  I nearly dropped the phone.  Lesions?  Already??!!  It just wasn’t posssible.  The doctor explained that due to the change in circumstance, she would need to meet with Dr. Burzynski and discuss what he wants to do next, and she asked us to go to the waiting room where she could talk to us face-to-face.
  8. Boy, Texas Medical Board, it sure looks like he is directly managing patient care, doesn’t it? And that doctors working under him defer to his judgment instinctively, doesn’t it? I wonder whose signature is on those records? That would be very interesting to know. 
  9. And we were totally honest with [Dr. Sano].  We can’t afford the meds.  We just can’t do it.  She told us that it was now possible that Dr. Burzynski might want to put Adam in the clinical trial.  Now he had a “persistant” tumor, and there was something measurable.  If he was given permission by the FDA to receive the antineoplaston treatment, now there was material they could measure and watch it shrink.  This is essential to be considered for the trial.  [...] (emmphasis added)
    Later that evening, they receive a phone call:
    Dr. Burzynski is putting Adam forward for the trial.  He is going to receive the antineoplaston therapy.  The therapy we have read about from the beginning.  The real reason we came here.  She doesn’t know anything about the financials, which we’ll have to work out with the counselor tomorrow.
  10. So, the Burzynski Clinic is doing a wallet biopsy, the only procedure that they are any good at. The McArthurs went ahead with ANP. They are desperately looking for supernatural signs that what they are doing is right, and they find them everywhere.
  11. On the 15th of February, they received news that the FDA would abet another patient’s entry into a trial:

    Adam’s approved!!!!!  Tomorrow morning Adam has an appointment at a Houston clinic to have his catheter fitted, then Friday he gets hooked up to the antineoplastons. [...]Also, we’ve been told that Adam’s sodium intake has to be meticulously watched, and his fluid intake and excretion carefully monitored.  I’ve been told, “If you can’t wake him up in the morning, get him straight to the hospital.”  Fluid can accumulate in the body or brain and cause complications. (emphasis added)
  12. As always, even the ANP can have dramatic and potentially lethal side effects, no matter what you hear. 
  13. And, WOW, when you look at the status of all those lesions that Burzynski’s group found on the MRI, it looks like their status/existence was not completely certain:

    We also had an appointment with the radiologist which was a bit depressing as well.  We were misinformed before.  The current tumor was NOT there immediately post-surgery.  The post-surgery MRI shows a clear cavity.  But, 6 weeks later there was definitely a “suspicious” enhancement within the cavity.  It’s no bigger than a pea, but it’s probably a recurring tumor.  There’s a small chance it might be nothing, only time will tell.  I don’t know why, but that news really got me down.
  14. Are you paying attention, Texas Medical Board? That needs to be clarified. 
  15. Although Adam had drank 11 liters (yes that’s right) of water, he had excreted 12 liters.  His weight had dropped by 2 pounds, so Dr. Barbara explained that he is probably dehydrated.  She recommended that we only increase the dosage by 20ml on Saturday just to be on the safe side, but to keep an eye on his fluid intake and weight.  So, Adam has been drinking and eating like a champ and polished off a massive dinner last night.  He drank even MORE water this morning to make sure his weight was back up.  He still came up a bit short on his fluid totals (intake was 12 liters, but output was 13 liters), but weighed in at a much healthier 155lbs. this morning.  But, the substitute doctor wasn’t happy.  She thinks that Adam is retaining water.  What??  He excreted more than he took in.  He can’t possibly be retaining water.  What the heck is he retaining?  His weight gain can be easily explained by the mountain of penne bolognaise I forced him to eat last night.  But, she refused.  No increase in dosage. 
  16. So who’s really in charge of the patients at the Burzynski Clinic?

    The other good news is that Adam is at his target dose.  Dr. Burzynski himself has been reviewing Adam’s case, and for mixed gliomas the dosage can be lowered and still be effective.  Adam is NOT on any steriods and has not suffered any fatigue at all.  This is nothing short of miraculous.  Many patients have ended up in wheelchairs because of the debilitating fatigue.  And everyone has to take Decadron to keep cranial pressure down.  Adam hasn’t needed any.  Everyone is really pleased with how well Adam is doing so far.  And Dr. Burzynski has a prediction… he believes that Adam’s tumor will be gone within 2 months, and after 8 more months of maintainance treatment, it should never recur.  I LOVE that prediction. (emphasis added)
  17. Since I started exploring extraordinary claims, I have noticed that people are willing to pay almost anything for 1) hope and 2) flattery.
  18. In March, after Adam and Vanessa have returned home, they received the results of their first MRI after treatment began:
  19. We just received a call from Dr. Barbara.  The radiologist still has to do a few more measurements, so he cannot say for sure if the tumor has shrunk.  However, there is considerably “less enhancement” in the tumor.  This means that there is less activity, and the tumor is showing up less dense on the MRI than before.  That explains why it is so difficult to see in the image.  All good news!!!  Dr. Barbara said, “Geeve Aatum beeg hug frum mee and goa celebrate!” 
  20. I’m no doctor, but it just doesn’t sound like the tumor is shrinking. And this seems to be confirmed in the May 12th update, when it is revealed that the tumor has grown 20% in the last 8 weeks. (The progress of the disease, as is often the case w/ Burzynski, seems independent of the ANP dosage.):

    The MRI showed that the tumor that had shrunk by 40% 8 weeks ago, has now increased in size by 20%.  There is also another lesion that has remained unchanged.  [...] The tumor seems to be affected by the treatment, but apparently this dosage level just isn’t going to cut it.  So, Dr. Barbara has decided to increase Adam up to the maximum dosage.  To put it bluntly, this sucks.  It sucks on so many levels.  
  21. Soon he is up to drinking 12 liters of water a day! By the end of May, the family’s finances have gotten so bad that Amanda starts talking about it on the website.
  22. On June 11th, we get a report that looks like someone at the Burzynski Clinic nearly gets Adam killed (they never find out who it was…apparently they don’t put things like “calls to patients” in patient files at the Clinic or something) when they call saying that his blood work is bad, setting off a chain of events that leads to him nearly slipping into a coma.
  23. On the 22nd of June, the MRI shows that Adam’s tumor is “stable,” which is a “success” at Burzynski’s Clinic, but it is a loose interpretation of “success” that no other researchers find acceptable. According to a site review of Burzynski’s clinic: “Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”
  24. By August it seems that the tumor is growing again, and we get the sad news in one of the most bare moments I’ve seen since I’ve started this project:

    It’s 5:00 in the morning, and I just can’t sleep.  Adam and I have been talking, holding hands in the dark.  The bedroom is actually dark for the first time in 6 months.  And completely silent.  The whooshing of the pump is gone, as is the pump’s bright display that used to cast a glow around the whole room.  It’s over.  We received a call yesterday that shocked both of us to the core.  Adam’s lesions have grown since the last MRI 8 weeks ago, and there is now a third lesion.  The treatment didn’t work.  It’s worked for so many others.  It is the one treatment that gave us any hope of Adam seeing the boys grow up.  He probably won’t ever get to meet his grandchildren.  He probably won’t see his boys get married or finish school.  He may not ever get to hear Finlay say “Daddy”.
  25. What is all the more galling, that after failing to help Adam in any meaningful way, the Clinic suggested that he come back and start a NEW course of treatment:

    We don’t know what we are supposed to do next.  We have discussed a few options, but they all look so awfully wrong.  The Burzynski clinic is encouraging us to come back to Houston so he can start gene-targeted therapy.  It just feels wrong.  First of all, we need to come up with $30,000 to start the other treatment, not to mention all the expenses of going down there.  It makes both of us nauseous just thinking of going back to that place and starting over.  The monthly cost of the treatment is over $20,000.  And it has a much lower rate of success than the antineoplastons. 
  26. They eventually moved on to another therapy. I wish them the best.
  27. For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.

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