The authors find that while CAM is used by a significant minority of parents, it is a minority: 28% (896 out of 3173). Special diets are the most common (548 respondents, 17%). Various methodologies are listed below:
Characteristic N
Any CAM 896
Special diets 548
Gluten-free diet 249
Casein-free diet 289
No processed sugars 69
No sugars or salicylates 28
Feingold diet 14
Other specified special diet 293
Other CAM 643
Other vitamin supplements 413
Probiotics 274
Essential fatty acids 171
Digestive enzymes 116
Higher dosing vitamin B6 and magnesium 99
Chiropractic 77
Amino acids 59
Antifungals 58
Glutathione 33
Chelation 19
Hyperbaric oxygen 12
Acupuncture 10
Sulfation 7
Other specified CAM 173
Some of the most talked about methodologies are rarely used. Chelation, for example, had only 19 respondents or 0.6%. Hyperbaric oxygen, 0.4%. Previously, chelation had been reported as being used by about 7% of families. If these studies are comparable, this would indicate that chelation has dropped from low to very low in use by parents.
CAM usage is higher among the wealthy, whites, those with children with autism vs PDD NOS or Asperger syndrome, and higher among those whose children have gastrointestinal complaints and/or seizures. The authors note:
As with other CAM use, it will help to determine more about the potential synergistic effects of CAM with medical treatments as well as ways that CAM use may interfere with improvement in medical conditions.
BACKGROUND AND OBJECTIVE Children and adolescents with autism spectrum disorder (ASD) often use complementary and alternative medicine (CAM), usually along with other medical care. This study aimed to determine associations of ASD diagnostic category, co-existing conditions, and use of medications with use of CAM.
METHODS We used the Autism Speaks Autism Treatment Network patient registry, which collects information on CAM use, medical conditions, and psychotropic medication at enrollment. CAM was categorized as special diets versus “other” CAM; ASD was defined as autism, pervasive developmental disorder (PDD), or Asperger’s. Gastrointestinal symptoms, seizure disorders, sleep problems, and medication use were determined from parent report. Child Behavior Checklist (CBCL) scores were used to measure behavioral symptoms. Logistic regression was used to determine associations of diagnostic category, other medical conditions, and medication use with CAM treatments, controlling for demographic characteristics.
RESULTS Of 3413 subjects in the registry as of April 2011, 3173 had complete data on CAM use: 896 (28%) reported any use; 548 (17%), special diets; and 643 (20%), other CAM. Higher rates of CAM use were associated with gastrointestinal symptoms (odds ratio [OR] = 1.88), seizures (OR = 1.58), and CBCL total score >70 (OR = 1.29). Children with PDD (OR = 0.62), Asperger’s (OR = 0.66), or using medications (0.69) had lower rates.
CONCLUSIONS Children with ASD use more CAM when they have co-existing gastrointestinal symptoms, seizure disorders, and behavior problems. This study suggests the importance of asking about CAM use in children with ASD, especially those with complex symptoms.
Mark Geier has been discussed a great deal here on Left Brain/Right Brain. Including very recently on the topic of this article. Much of that discussion has recently centered on his belief that not only is autism caused by mercury, but that mercury somehow is bound to testosterone and that by reducing the amount of testosterone in the body one can reduce the amount of mercury and, thus in his flawed model, treat autism. Mr. Geier’s clinical practice was found to have been flawed as well and he lost his license to practice medicine in his home state of Maryland. He was licensed in multiple other states as well, including Missouri and Illinois. With the loss of his license in Maryland, other states have followed in license actions.
Hyperbaric Oxygen therapy (HBOT) has risen in recent years as an “alternative” therapy for many conditions, autism included. The logic behind HBOT is rather fuzzy. For example, there was some discussion of using HBOT to reduce oxidative stress a few years back. How increasing oxygen in the body would decrease oxidative stress was not clear. Some other discussions focused on oxygen perfusion. Basically, some studies have shown that some areas of the brain may be getting less oxygen in autistics than in non-autistics. The idea was that increasing the oxygen to those areas might result in some improvement in some measure or another.
This begs the question: are there areas of higher perfusion (hyperperfusion) in the brains of autistics? Seems an important question to pose when proposing increasing perfusion. But one can not find the term “hyperperfusion” in this review promoting HBOT and autism, for example. But the answer is, yes, people have measured hyperperfusion in autistic’s brains:
The areas of hypoperfusion and EEG focus were highly related in seven of 12 children, while the areas of hyperperfusion were highly related to EEG focus in six of 12 children. The areas of hypoperfusion were highly related to the focus observed on EEG, but were not always related.
Using the simplistic logic of HBOT/autism promotors, one then is left with the question of whether could HBOT make seizure activity worse? I wouldn’t put too much weight on this question other than to point out that it isn’t 100% clear that there can be no downside to HBOT. The logic “there is hypoperfusion therefore HBOT should benefit” isn’t strong; the idea that “there are areas of hyperperfusion, therefore HBOT could have a downside” is also not strong. There are three other studies mentioning hyperperfusion and autism. And, I was interested to see that there are 350 hits for a search of hyperperfusion and epilepsy in pubmed. Compare this to 30 hits for autism and hypoperfusion.
Back to HBOT. There isn’t much science for HBOT, to be frank. Most of the momentum, at least in publications, is from one source: Dan Rossignol. An early paper: Hyperbaric oxygen therapy may improve symptoms in autistic children. by Dr. Rossignol was published in Medical Hypotheses–a pseudo medical journal. I believe Dr. Rossignol’s clinic in Florida provides HBOT.
While some uncontrolled and controlled studies suggested that HBO therapy is effective for the treatment of autism, these promising effects are not replicated. Therefore, sham-controlled studies with rigorous methodology are required to be conducted in order to provide scientific evidence-based HBO therapy for autism treatment.
Two recent studies (the one which is the focus of this article and another) have used a more randomized/blind methodology and one has looked at biomarkers considered important in HBOT and autism (cytokines). The results have not been encouraging.
Ten children completed 80 sessions of HBOT and all improved by 2 points on the clinician-rated CGI-I scale (much improved) as well as several parent-completed measures of behavior. The lack of a control group limits the ability to determine if improvements were related to HBOT.
and also:
“Although this study was limited by the small sample size and by the variable nature of cytokines, we found no evidence that HBOT affects cytokine levels or that cytokine levels were associated with behavioral changes”
So, if there is a benefit from HBOT, it isn’t due to changes in cytokines. Which HBOT doesn’t seem to affect.
Another somewhat recent study attempted a clinical trial as well Controlled evaluation of the effects of hyperbaric oxygen therapy on the behavior of 16 children with autism spectrum disorders. This study, out of the old “Thoughtful House” including Andrew Wakefield as an author found ” No consistent effects were observed across any group or within any individual participant, demonstrating that HBOT was not an effective treatment for the participants in this study. This study represents the first relatively large-scale controlled study evaluating the effects of HBOT at the level of the individual participant, on a wide array of behaviors.”
Finally, a study out in the past couple of months again attempts a randomized controlled study: “Hyperbaric oxygen in the treatment of childhood autism: a randomised controlled trial.” The study is out of Thailand. One factor of note is the attempt to do a real control using a “sham” air group. Obviously HBOT studies are complicated in that study subjects can easily detect the changes in pressure. Of note, HBOT in this case is 100% oxygen:
This study was a prospective, randomised, double-blind, controlled trial of HBOT at 153 kPa (1.5 ATA) with 100% oxygen for one hour daily, weekdays to a total of 20 sessions, versus a sham air treatment consisting of pressurised room air at 116 kPa (1.15 ATA) on the same schedule.
While some reports have used 100% oxygen at 1.5ATA, many have used either air or enriched air and sometimes lower pressure (1.3ATA). I.e. this study involves higher oxygen exposure than in many studies. Air is about 21% oxygen. So, a 1.5 atmospheres of pure oxygen is about 7.5 times the oxygen partial pressure in air. Many reports in early studies were about 1.3 ATA air or slightly enriched air. 1.3 ATA (atmospheres absolute) at 25% O2 is about 32% oxygen. For divers, these levels of oxygen are comparable to Nitrox or enriched air. One can get a higher oxygen level from a mask at 1 atmosphere. Which has been a critique of HBOT from the start. Early anecdotal reports from HBOT practitioners claimed that oxygen delivered by mask was not effective. Only high pressures gave whatever results were claimed. Which is counter intuitive to the simple explanations of how HBOT should work.
But, with both high pressure and pure O2, the Thailand study should provide clarity in these questions. Which begs the question, what are those results? The full paper is online and the abstract is below.
BACKGROUND:
Promising results with hyperbaric therapy for children with autism have been reported, but most involved the use of only mild pressure with oxygen supplementation. To date, there has been no randomised, blinded trial of 100% oxygen administered at hyperbaric pressure. This study evaluated the efficacy of hyperbaric oxygen therapy (HBOT).
METHODS:
Sixty Thai children with autism, aged three to nine years, were randomly assigned to receive 20 one-hour sessions of either HBOT at 153 kPa (1.5 ATA) or sham air at 116 kPa (1.15 ATA). Effects on behaviour were measured using the Autism Treatment Evaluation Checklist score (ATEC) and clinical improvement was measured with the Clinical Global Impression (CGI) system; in particular the clinical change (CGIC) and severity (CGIS) sub-scores. These were evaluated by parents and clinicians, both of whom were blinded to the actual exposure.
RESULTS:
The mean total ATEC scores by both parents and clinicians were significantly improved after intervention in both arms of the study compared to the score before intervention (P <; 0.001 in both groups by parents, P = 0.015 in HBOT group and P = 0.004 in sham group by clinician). There were no statistically significant differences in average percentage changes of total ATEC score and all subscales scores when comparing the HBOT and sham air groups, either by parents or clinicians. Changes in the CGI scores following intervention were inconsistent between parents and clinicians. For severity scores (CGIS), parents rated their children as more improved following HBOT (P = 0.005), while the clinicians found no significant differences (P = 0.10). On the other hand, for change scores (CGIC) the clinicians indicated greater improvement following HBOT (P = 0.03), but the parents found no such difference (P = 0.28).
CONCLUSIONS:
Children with autism who received 20 sessions of either HBOT or a sham air exposure had significant improvements in overall behaviour but there were no significant differences in improvement between groups. The inconsistent changes on CGI sub-scores between parents and clinicians are difficult to interpret, but no overall clinically significant benefit from HBOT could be shown. Both interventions were safe and well tolerated with minimal side effect from middle ear barotraumas.
Repeat for emphasis: “Children with autism who received 20 sessions of either HBOT or a sham air exposure had significant improvements in overall behaviour but there were no significant differences in improvement between groups”
Reports from parents and clinicians did not agree and the authors conclude “no overall clinically significant benefit from HBOT could be shown”.
HBOT is not cheap. A single “dive” can cost in the neighborhood of $100. Parents have purchased portable chambers which run in the $10-20k range (depending on model and whether new). And have modified these to provide O2 enriched air, outside the manufacturer’s specifications. There is a resale value in these chambers so far, so the net cost is not going to be as high. But, all told, there is substantial outlay of funds and time in HBOT. The science pro is shaky at best. And now there are two negative controlled trials.
These results will likely do little to dampen the enthusiasm for HBOT. All studies of HBOT and autism in clinicaltrials.gov are completed, so future data may not be forthcoming.
There is really no fun in writing about people whose lack of ethical standards harm disabled children. Seriously, it is painful. I know at least one autism blogger who quit in no small part because it was just too hard to keep writing about these topics.
Mark Geier is an M.D. and was licensed in multiple states (I’ve lost count of how many and which ones). His home base is Maryland. His license was suspended there and many other states have followed suit. David Geier holds no medical credentials and is charged with practicing medicine without a license in Maryland.
As noted above, most, but not all, states have followed suit with suspending Mark Geier’s license.
The St. Louis Post Dispatch writes (reminding me of which states Mr. Geier has been licensed):
Dr. Mark Geier has opened eight autism treatment clinics called ASD Centers across the country but is only allowed to practice at two of them — in St. Peters and Springfield, Ill.
Missouri and Illinois are among the last states to seek discipline against Geier, whose hormone therapy for children with autism has been called dangerous, abusive and exploitive by various medical boards.
In the last two years, his medical license has been revoked or suspended in California, Florida, Indiana, Kentucky, Maryland, New Jersey, Texas, Virginia and Washington.
Missouri, Illinois and Hawaii have filed complaints against Geier based on other states’ actions, but his license remains active in all three states. A disciplinary hearing in Geier’s case is set for Oct. 19 before the Missouri Board of Registration for the Healing Arts in Jefferson City
The Geier hypothesis is that mercury binds with testosterone in the brain, making it difficult to chelate. They prescribe Lupron to reduce testosterone. The idea would be laughable if it weren’t being used on humans (or any animal for that matter).
Briefly–the Geier’s cited a paper showing that in hot benzene,
(more details in Miscellaneous Mercury Nonsense), mercuric chloride and testosterone can be induced to form chemical complexes.
I had hopes that the Geiers had moved away from this idea, but they stand by it:
David Geier said Wednesday that “many peer-reviewed scientific studies” have been published that support the theory. All of the research articles cited on the ASD Centers’ website are co-authored by Mark or David Geier.
The fact that the Geiers were able to get papers published in third rate journals doesn’t make their ideas true. Or even feasible.
Mr. David Geier did not attend medical school. Neither did I but I will offer him this small bit of medical advice: Among other logical problems with your idea, the human brain is not the same thing as a beaker of hot benzene.
Point two: even if your idea held any merit, Lupron lowers the level of testosterone in the blood, it doesn’t break up these mythical mercury-testosterone complexes.
The Geiers are demonstrating a major problem with the medical license system in the U.S.. It took years to bring the Geiers to hearing. Now that Mark Geier has lost his license in his home state, he has moved to other “safe havens” to continue business? How is this right.
I recall a number of med students and premeds I knew while in college and grad school. The hoops they had to jump through to get their degrees and get licensed and start working seemed enormous. Now we see why: it’s so hard to stop someone from practicing.
Probably the most hotly debated topic in autism diagnosis and research this year has involved what changes may occur when the DMS-IV gives way to the DSM-5. The DSM is the Diagnostic and Statistical Manual of Mental Disorders and is used as a basis for determining diagnoses such as autism. There have been discussions (both online and elsewhere) claiming that the DSM is not only going to reduce the fraction of the population diagnosed autistic, but that it is designed to do so. People from many parts of the autism communities are concerned including autistics, parents and professionals.
A few studies have already been published, but more data are needed and welcome. This study focuses on “high functioning ” autistics. I need to get the paper to check the age ranges of the individuals in the study. So far there has been little or no data on autistic adults. That said, this study presents the result that of 498 autistics who currently meet the diagnosis criteria for autism (for research purposes), 93% of them will meet the criteria under the DSM-5.
Such a study can not explore how many who did not get a diagnosis under DSM-IV would get one with DSM-5.
Diagnostic and Statistical Manual (DSM-5) criteria for ASD have been criticized for being too restrictive, especially for more cognitively-able individuals. It is unclear, however, if high-functioning individuals deemed eligible for research via standardized diagnostic assessments would meet DSM-5 criteria. This study investigated the impact of DSM-5 on the diagnostic status of 498 high-functioning participants with ASD research diagnoses. The percent of participants satisfying all DSM-5-requirements varied significantly with reliance on data from the Autism Diagnostic Observation Schedule (ADOS; 33 %) versus Autism Diagnostic Interview-Revised (ADI-R; 83 %), highlighting the impact of diagnostic methodology on ability to document DSM-5 symptoms. Utilizing combined ADOS/ADI-R data, 93 % of participants met DSM-5 criteria, which suggests likely continuity between DSM-IV and DSM-5 research samples characterized with these instruments in combination.
Below is a list of papers listed in pubmed on the DSM-5 and autism. I’ve highlighted some of the abstracts (or parts of abstracts) which show the sorts of results which are causing concern within the communities.
The proposed DSM-5 criteria for Autism Spectrum Disorder (ASD) depart substantially from the previous DSM-IV criteria. In this file review study of 131 children aged 2-12, previously diagnosed with either Autistic Disorder or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), 63 % met the new DSM-5 ASD criteria, including 81 % previously diagnosed with Autistic Disorder and only 17 % of those with PDD-NOS. The proportion of children meeting DSM-5 differed by IQ grouping as well, with higher rates in lower IQ groups. Children who did meet criteria for ASD had significantly lower levels of cognitive and adaptive skills and greater autism severity but were similar in age. These findings raise concerns that the new DSM-5 criteria may miss a number of children who would currently receive a diagnosis.
Although it is still unclear what causes autism spectrum disorders (ASDs), over time researchers and clinicians have become more precise with detecting and diagnosing ASD. Many diagnoses, however, are based on the criteria established within the Diagnostic and Statistical Manual of Mental Disorders (DSM); thus, any change in these diagnostic criteria can have a great effect upon children with ASD and their families. It is predicted that the prevalence of ASD diagnoses will dramatically decrease with the adoption of the proposed DSM-5 criteria in 2013. The aim of this current study was to inspect the changes in prevalence first using a diagnostic criteria set which was modified slightly from the DSM-5 criteria (Modified-1 criteria) and again using a set of criteria which was relaxed even a bit more (Modified-2 criteria). Modified-1 resulted in 33.77 % fewer toddlers being diagnosed with ASD compared to the DSM-IV, while Modified-2 resulted in only a 17.98 % decrease in ASD diagnoses. Children diagnosed with the DSM-5 criteria exhibited the greatest levels of autism symptomatology, but the Mod-1, Mod-2, and DSM-IV groups still demonstrated significant impairments. Implications of these findings are discussed.
CONCLUSION:
The proposed DSM-5 will result in far fewer persons being diagnosed with ASD. These results replicate findings from two previous studies, with older children/adolescents and adults. As a result of these new criteria, far fewer people will qualify for needed autism services.
CONCLUSIONS:
Proposed DSM-5 criteria could substantially alter the composition of the autism spectrum. Revised criteria improve specificity but exclude a substantial portion of cognitively able individuals and those with ASDs other than autistic disorder. A more stringent diagnostic rubric holds significant public health ramifications regarding service eligibility and compatibility of historical and future research.
One factor of alternative medicine is that it is impossible to make an informed decision on risks and benefits. Without data on either, all one has is anecdotes. This is especially troublesome, to me at least, when it comes to risks. What are the adverse events associated with a given alternative medicine treatment? This became clear when an industrial chelator was offered as a “supplement” and the proprietor of that business was quoted as telling his clients to report adverse reactions to him, avoiding the FDA.
The Autism Research Institute (ARI) has promoted alternative therapies for autism for some time, even maintaining a list of therapies with survey results claiming high effectiveness. They also maintain a page on adverse reactions. But without any emphasis on informing people about adverse reactions to alternative therapies.
Here is a quote from that page:
Unfortunately, before the drugs are prescribed to their children, parents are not usually informed of the possible dangers related to the drugs. ARI urges all practitioners to inform their clients about the possible adverse effects associated with every treatment or medication that they recommend to their clients.
Many individuals on the spectrum suffer from seizures, and most of the drugs commonly prescribed to these individuals may lower the threshold for having seizures. We have also listed those drugs that are associated with seizures along with a link.
If your son/daughter experiences side effects from receiving prescribed medications, please contact the FDA at: http://www.fda.gov/medwatch or call 1.800.FDA.1088 (1.800.332.1088).
In addition, parents can learn more about possible side effects, as well as benefits, associated with various treatments by reviewing the results from our parent treatment survey. The survey findings are based on over 26,000 responses, and include a large number of biomedical interventions, including drugs, nutritional supplements, and diet.
One is given the information about how to report a reaction from “prescribed medications”, but not for alternative therapies or supplements. Or so they present it. The page they link to isn’t the direct reporting site. Instead, one must follow a link on that page to https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm. There you are informed that you may “Click the BEGIN button to report serious adverse events for human medical products, including potential and actual product use errors and product quality problems associated with the use of:”
FDA-regulated drugs,
biologics (including human cells, tissues, and cellular and tissue-based products)
medical devices (including in vitro diagnostics) special nutritional products and cosmetics
emphasis added.
So, the same site where ARI sends people to report “side effects from receiving prescribed medications” can be used (and should be used) to report side effects from alternative therapies which are not prescribed. But parents are not encouraged to make such reports. Which, again, limits the public’s ability to estimate the risks involved with these therapies.
On the ARI page are links to adverse reactions (both ARI’s own discussions as well as links to external sites which publish accepted adverse reaction information) for various therapies. Will you learn about the “occasionally severe” skin reactions that occur with the chelator DMSA? No. Deaths from IV chelation? No. Will you hear about the autistic child who was a test case for the Autism Omnibus Proceeding who appeared to have significant adverse reactions to chelation? No. No one in the public would have heard about that were it not for the Omnibus.
ARI makes a major distinction between “Drugs” and “Biomedical/Non-Drug/Supplements” as therapies. Is this a valid distinction? ARI lists “Transfer Factor” as one of their “BIOMEDICAL/NON-DRUG/SUPPLEMENTS”, claiming that autistics “got better” 5.9 times more often than they “got worse”. But no data on what adverse reactions there are. No links. “Transfer Factor” is not a drug to ARI. It is worth noting that it was a drug to Andrew Wakefield. He attempted to patent Transfer Factor as a therapy and as an alternative to the standard measles vaccine.
The question of whether alternative therapies are presented such that one can make an informed decision is an important one. Raising the question is generally guaranteed to garner the reaction: “he’s anti-cure”, or “he’s against treating autism” or the like. But clearly the argument here is simple: are people being given the ability to make an informed decision about alternative medical treatments used for autism? The answer is simple as well: no. They are not.
Dr. Mark Geier is well known within the alternative-medicine and vaccine-causation segments of the autism communities. As a practitioner, Dr. Geier is probably best known for therapies purporting to treat autism through approaches claiming to work on removing mercury. The idea that mercury is involved in autism etiology is a failed hypothesis on it’s own. But Dr. Geier’s treatment ideas included a frankly incredible notion that mercury is bound in the body by testosterone, so, he hypothesized, by reducing the body’s production of this hormone, one could better remove the mercury. To reduce testosterone, Dr. Geier proposed (and prescribed) drugs such as Lupron. It is not a bad idea–it is a series of bad idea. Very bad ideas.
These ideas are so poor in concept that it is difficult to get insurance companies to pay for Lupron for reducing mercury in the body. In an apparent move to avoid this difficulty, Dr. Geier diagnosed autistic children with precocious puberty. Dr. Geier’s methods were lacking and due to this and other factors, Dr. Geier’s license came under suspension in his home state of Maryland.
Dr. Geier was licensed in many states. When a doctor faces disciplinary action in his home state, he is supposed to report those actions to other states where he holds a license. As Catherina reports in Bad month for the Geiers: Mark R. Geier’s medical license suspended in Florida, Dr. Geier appears to have failed to inform Florida in a timely manner. The full decision is linked on the Just the Vax site, and also can be found here.
Indiana also made a further step, going beyond mere suspension to actually revoking his license in that state. The revocation comes because he failed to appear before the board regarding his suspension, thereby defaulting on any appeal to their decision. The final order, dated July 5, 2012 further imposed a $5 fee and a fine of $3,000.
Further reading about the “Lupron Protocol” can be found at Neurodiversity.com, where Kathleen Seidel’s thorough reporting was the first to expose many of the questionable practices.
If I understand correctly, Dr. Geier remains licensed in both Illinois, Missouri and Hawai’i. However, he faces more charges in his home state of Maryland.
Missouri notes the fact that Dr. Geier has faced license suspension in other states. His license is up for renewal there Jan 31, 2013. In Illinois, his license is active, with a notation that he has not been “ever disciplined”. His license comes up for renewal there July 30, 2014. His Hawai’i license is “current, valid and in good standing” and valid through 01/31/2014.
—
by Matt Carey
(note, the last paragraph was added shortly after this article was published)
I thought that AutismOne might actually reconsider their promotion of giving bleach to disabled children.
Paint me naive again.
I thought that perhaps the Age of Autism blog would stay away from this, allowing it to sink into the past. The best I’ve seen so far is a non-pology from Kim Stagliano:
“AofA isn’t endorsing the protocol or slamming it – just providing perspective via one of our wonderful contributors.”
About par for the course.
While I am naive, I will say that I did expect that there would be a core of MMS users who would not take kindly to the discussion. And in this I am not surprised. Apparently, “investigative journalist” Kelly Stone has submitted a response to Todd Drezner’s Huffington Post article The Curious Case of Autism and MMS. I assume this is intended for the Huffington Post to publish. If so, Ms. Stone may be in for disappointment.
Todd Drezner’s “A Curious Case of Autism Exploitation”
By Kelly Stone
Investigative Journalist
In it Ms. Stone takes the attack on Mr. Drezner right away
Signature contributor to the Huffington Post, Todd Drezner, takes ‘blogging for dollars’ to a whole new level with his latest post on Autism. Drezner’s online column is little more than a clever marketing effort for his self-directed documentary, “Loving Lampposts: Living Autistic”.
Yes. It’s all supposedly about Mr. Drezner making money from his movie “Loving Lamppoosts“.
As an aside, Ms. Stone seems to have difficulty with the concept of what a director is in film-making. The term “self-directed” is very odd in this context.
After introducing and attacking Mr. Drezner, Ms. Stone then takes on attacking Emily Willingham, Ph.D..
Willingham, known elsewhere as “Daisy May Fatty Pants” is a contributor to “A Thinking Person’s Guide to Autism”. – According to the Child Health Safety blog, Willingham is a “self-professed scientist with selective blindness to basic observations”. All too à propos, Drezner and Willingham team up in their petition to denounce chlorine dioxide therapy as “child abuse”, a sobering case of irony given it could be the very thing its signers have been looking for.
Ms. Stone, investigative journalist, is welcome to do just a little more digging than the junk blogs she’s read and discover that Emily Willingham is much more than a “self-professed” scientist. A simple google search (which I assume Ms. Stone did, then ignored the results) will quickly get one to http://www.emilywillinghamphd.com/. Her biography includes:
I have been a dedicated writer since about 1972 and practicing science since 1996. My background, as I say in cover letters, includes a bachelor’s degree in English and a PhD in biological sciences, both from The University of Texas at Austin, with a completed postdoctoral fellowship in pediatric urology at the University of California, San Francisco. Throughout, my focus was vertebrate development and genetics, specifically how gonads and penises develop. Talking about my work has always carried a frisson of the risque.
I’ve seen Ms. Willingham’s publication list. It is impressive. Which is just one point of many which can be used to say: Emily has the chops to call herself a scientist. Frankly if you don’t follow her writing, I’d recommend you do. (Thinking Person’s Guide to Autism and Biology Files are two good places to see her work).
Ms. Stone, investigative journalist, moves into defending MMS. First she pulls a quote from a US Patent. Notably, I only find references to this patent on (a) patent search sites and (b) MMS sites. Ms. Stone appears to have not done much investigation.
Here is her discussion of the patent:
However, based upon clinical research, a 1993 U.S. Patent (No. 6086922) states the following facts about sodium chlorite and chlorine dioxide:
“It is therefore quite unexpected that, with an intravenous administration of an appropriate chlorite matrix in the appropriate concentration, HIV viruses can be directly combated in the blood… The chlorite matrix solutions of the present invention also do not exhibit adverse effects such as severe cytotoxic damage and the like, typically associated with highly toxic chemicals which are administered intravenously [i.e. vaccines]. The chlorite matrix solutions of the present invention further are capable of inactivating the HIV virus to thereby inhibit infection of undamaged cells.”
Wow! Did you read that? Chlorine dioxide, via sodium chlorite (aka “MMS”), is effective at “combating”, “inactivating”, and “inhibiting” HIV, without any “adverse effects”. Why doesn’t your doctor know about this? I have a few ideas, but let’s put that aside and stick with the facts.
Let’s put that sentence from the patent back into context, shall we. And emphasize a few points while we do:
However, the use of chlorite solutions for parenteral administration typically was not thought to be possible because of their extraordinary toxicity.
It is therefore quite unexpected that, with an intravenous administration of an appropriate chlorite matrix in the appropriate concentration, HIV viruses can be directly combatted in the blood, demonstrated by the rapid and strong decrease of the viruses detectable in the blood.
First notice that the [i.e. vaccines] was added by Ms. Stone or someone else. Second, notice that the inventor notes that these solutions have “extraodinary toxicity”, but by chosing the “appropriate concentration” they can find a solution which they think is viable.
Appropriate concentration. Sounds a lot like “dose makes the poison”, right?
How does one chose the “appropriate concentration” of MMS? By upping the dose until the subject is obviously sickened. From the MMS handout for AutismOne
Weird things can happen when we begin using MMS
The immune system wakes up and sometimes we find the body detoxing an old cold, flu or rash. It is common to find that the child gets a fever. This is good.
There is so much pseudo-science in that statement it is difficult to imagine someone presenting that with a straight face. No evidence that the fever is due to “detoxing an old cold” or the other nonsense.
Ms. Rivera even has a slide devoted to “Fever Therapy with MMS”, essentially telling parents to dose their kids until they have a fever reaction.
One need only do a simple internet search for MMS and nausea to see that this is a common and expected reaction to MMS. Some people try to paint this nausea as a “good sign” as well.
Back to Ms. Stone. And the patent she cites to defend the use of Chlorine Dioxide. Here’s another section of that patent:
A significant inhibition of a new infection is found in vitro even at concentrations of 5 micro-mo1/l, whereas a concentration of 150 micro-mo1/l brings about a practically complete inhibition. However, concentrations of more than 100 ,micro-mo1/l can, over a prolonged period of time, lead to cytotoxic damage. Thus, concentrations of from 10 to 100, preferably of from about 40 to 80 and especially of 50 micro-mo1/l are preferred.
So, the dose described in the patent is chosen to avoid cytotoxic damage. They can’t reach the concentrations needed for complete inhibition of HIV due to this limit.
Apparently, investigative reporter Kelly Stone didn’t read the full patent as she makes the blanket statement:
OK, so sodium chlorite and chlorine dioxide are relatively safe to use intravenously, but what about oral ingestion, is that safe? A very good question; one Drezner might have thought to research.
I guess it depends on your definition of “relatively safe”.
When considering the value of this patent, keep this in mind. There’s an old saying: patents don’t have to be correct, they have to be novel. (think of Andrew Wakefield’s vaccine patent for an example of an idea which wouldn’t work but was patented). When was the last time, or only time, you heard someone talk about treating HIV patients with IV bleach?
If you are like me, the answer is never. The invention appears to have never been used. Well, never used except to defend MMS.
As an aside–another of the arguments has been, “of course Big Pharma would downplay this. They can’t patent it and make money off of it”. Then why did Oxo Chemie of Switzerland patent this?
In her attempt to paint Todd Drezner as a profit-driven Ms. Stone quotes from Mr. Drezner’s documentary:
“Autism is a gift disguised as a dilemma”, a profound take-away from Drezner’s documentary; but rest assured Drezner’s film isn’t a “gift” to the Autism community. No, you’ll have to buy the DVD, or have a paid Netflix account to watch it.
That’s exactly the kind of propaganda the medical-industrial complex can really get behind. Build your world around Autism! Accept it, don’t fix it! To quote the documentary, “You ‘cure’ hams… and ‘treat’ people.” This is the standard medical line. There’s no money in curing, only in perpetual treatment… well, that and selling DVDs.
Actually, you can see the segments she discusses online. And in those segments you can see that the comments are not made by Mr. Drezner. “Autism is a gift disguised as a dilemma” and “You ‘cure’ hams… and ‘treat’ people.” are quotes from Sharisa Kochmeister, autistic adult featured in Loving Lampposts.
It’s rather a stretch for the author to claim that Ms. Kochmeister is somehow involved in profiting from the lack of an autism cure.
This article is already rather long so rather than go on point by point in response to Ms. Stone’s attack, I’ll skip to the end of her piece:
Much unlike Drezner, we will be contacting the parents of the children that have reportedly made significant improvements using MMS, and we are currently collecting case by case clinical data showing MMS does what those singing its praises claim.
The thought crossed my mind; who’s underwriting Drezner, someone with ties to the FDA or Big Pharma? In a huge effort to not allow myself to be given over to absolute speculation like Drezner, I will wait and report my findings when they become factual.
Surprised by this conclusion? Both the “we have anecdotes” claim and the “pharma shill” gambit, with the “I’m more open minded because while I am attacking him, I’ll reserve final judgement until I have evidence” approach.
Would that she applied the same reasoning to MMS. As in waiting for evidence. Not anecdotes, evidence. How about at least something speaking more to biological plausibility. Again, paint me naive. The website she works for has already defended MMS using the anecdote defense.
Ms. Stone writes for the US~Observer. My strong suspicion is that her article will end up there with a complaint that even the Huffington Post wouldn’t take her article. But, we are talking about the Huffington Post. I’ve been caught being naive before.
Todd Drezner, who brought us the wonderful film “Loving Lampposts”, has a new article up at the Huffington Post: The Curious Case of Autism and MMS.
I’m going to say something radical, something that may shock you. Brace yourself. Are you ready? Here goes:
It’s not a good idea to make children drink bleach.
If you’re not familiar with the autism community, you may wonder why my statement would ever be considered controversial. Unfortunately, in the autism community, where there are disagreements about everything, even this seemingly straightforward statement causes arguments.
It’s worth a read and a comment. Even though it is painful to read.
Emily Willingham and Jennifer Byde-Myers created a Change.org petition No bleach enemas to “cure” autism in children! Right now there are over 1,700 signatures to that petition. If you haven’t signed yet, consider doing so now.
Just because this is exactly the same chemical as bleach doesn’t mean Emily should call it bleach! This is because of reasons. And quantum mechanics. And I trust that Jim Humble would never lie to desperate parents just because he’s selling this product for a profit! Enough of the medical establishment and their “science” and their “first, do no harm.” We want pointless feel-good actions that take advantage of our sadness and our scientific illiteracy!
Stop the fearmongering. Just because sodium chlorite bleaches through oxidation and is grouped with other chlorine bleaches that operate in a similar fashion (i.e. chlorine dioxide, chlorine, and calcium hypochlorite does not make it a bleach. That tits industrial manufacturer’s label it as such also means nothing. I regularly drink inappropriately named acidic drain cleaners to relieve constipation. That the public health agencies all over the world recognize MMS’ risks as poisoning, renal failure, reduction of the ability of the blood to carry oxygen, abdominal pain, nausea, vomiting, and diarrhea doesn’t mean they know what they are talking about. To prove it, I volunteer myself along with everyone to sign this petition for a public demonstration where each person will consume a gallon of undiluted sodium chlorite without any deleterious health effects. Then, they will have to accept it as evidence of our correctness.
And this even with people promoting the petition. It seems safe to say that MMS does not have a broad base of support.
I can not recall anything which has been touted as a method to “recover” children from autism has ever been publicly rejected by groups promoting so-called “biomedical” approaches. But here’s a chance to step up to the plate.
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