Remember Mark and David Geier?
I wouldn't be surprised if regular readers may have forgotten about this father-son tag team of anti-vaccine lunacy and autism woo. After all, I haven't written about them since journalist Trine Tsouderos did her expose of their "Lupron protocol" for the Chicago Tribune nine months ago. Long time readers, however, will remember the Geiers. They were one of the very first autism-related topics I wrote about after joining ScienceBlogs four years ago, when I wrote about them in a little ditty I called Why not just castrate them? The reason that I gave my post the title I did was to express my shock at the Geiers' use of a powerful anti-sex hormone drug Lupron, which is most commonly used to reduce testosterone to castrate levels in men with prostate cancer or to shut down female sex hormones as a part of in vitro fertilization cycles so that the process is completely controlled by exogenously administered hormones, on autistic children. It is not called chemical castration for nothing. It's also used sometimes to treat precocious puberty, but that is a rare diagnosis in real pediatric endocrinologists' offices. Unfortunately, in the Geiers' office, it's a very common diagnosis, even in children who are clearly too old for the diagnosis.
Even more incredible is the rationale they use to justify their woo. Basically, they claim that testosterone forms "sheets" that bind to mercury (left in the brain by those evil vaccines, of course!) and that these "testosterone sheets" make mercury harder to chelate. By lowering testosterone levels, claim the Geiers in a feat of armchair science, they get rid of the testosterone sheets and make mercury easier to chelate. What they fail to mention is that the only time testosterone-mercury complexes have ever been observed experimentally involved dissolving equal parts of mercuric chloride and testosterone in benzene. Obviously, this is a condition never seen in living tissues, much less brains, although one wonders whether Mark and David Geiers' brains have been soaked in hot benzene.
Benzene or no benzene, there are apparently a lot of parents of autistic children out there who are either desperate enough or gullible enough or, more likely both, and the Geiers have no compunction whatsoever about taking advantage of that combination. In fact, I just learned that they are apparently advertising for their franchise. In an e-mail that's gone out to some "biomed" mailing lists (nicely forwarded to me by my spies), we find out that the Geiers are still at it:
For Immed. Release
February 15, 2010
PRESS RELEASE CONTACTS:
Mark R. Geier, MD, PhD, FACMG, FACE
Founder & Medical Director
Tel. : 301-989-0548
E-mail: mgeier@comcast.netWASHINGTON, DC - ASD Centers LLC is proud to announce its NEW web site: http://www.AutismTreatmentClinics.com as well as the opening of new treatment clinics in both Florida and Kentucky.
ASD Centers, LLC is committed to providing each patient with an exceptional level of care and attention. At the ASD Centers, LLC we are proud to be physician owned and operated.
Our dedicated staff works together as a team to provide high-quality comprehensive care.
Our compassionate and understanding doctors take pride in paying close attention to each patient's needs. ASD Centers is committed to:
a. Listening to the concerns of the parents of those who are not competent and/or unable to speak for each person we treat as well those patients who are able speak for themselves,
b. Clinically assessing and then addressing each of our patient's clinically identified medical issues and
c. Helping those who have a diagnosis of an autism spectrum, or related disorders, to recover from the underlying medical issues that produce the clinical symptoms of the diagnosed medical conditions for which we have clinically sound therapies.
Testing/Treatment Areas:
** Genetic Markers (DNA Fragile X Syndrome, Blood Chromosome, Chromosome Microarrays, DNA Rett Syndrome, Angelman/Prader Willi Syndrome)
** Mitochondrial Dysfunction (Carnitine, Lactic Acid, Ammonia, Hand Muscle-strength Testing)
** Hormone Imbalances (Total Testosterone, Free Testosterone, DHEA, DHEA-S, Andros- tenedione, Dihydrotestosterone, Total Estrogens, Estrone, Estradiol, ACTH, Aldosterone, Prolactin, FSH, LH)
** Oxidative Stress/Inflammation (Neopterin, Lipid Peroxides)
** Detoxification Pathways (Glutathione, Cystathionine, Homocysteine, Methionine)
** Immune System Function (Immune Deficiency Profile, HLA-Testing, Immune Complexes, Food Allergies, Celiac's Disease)
** Heavy Metals (Porphyrins, Blood Metals, Urinary Metals)
** Neurological Dysfunction (Brain MRI scans, Brain SPECT scans)
** General Health Status (Comphrensive Metabolic Panel)
## A significant portion of all the net revenues that are generated by the ASD Centers are donated to the non-profit 501(c)(3) Institute of Chronic Illnesses, Inc. and to the non-profit 501(c)(3) CoMeD, Inc., which are corporations dedicated to autism research and advocacy efforts.
That's nice. The Institute of Chronic Illnesses, as longtime readers may recall, is the Geiers' elusive institute, the institute through which the Geiers, using an institutional review board (IRB) packed with Geier cronies and headed by Mark Geier himself, "reviewed" the Geiers' Lupron "studies" and--surprise! surprise!--approved them as being ethical when clearly they were not. The conflict of interest was astounding, given that Mark Geier chaired the committee that was evaluating his own study. Even if the proposed study had a sound basis in science (which it did not), such an arrangement contravenes federal regulations and represents a conflict of interest that would make a big pharma executive blush. All the attention over the last couple of weeks has been on Andrew Wakefield, whose 1998 Lancet study was bankrolled by trial lawyers, who flouted research ethics by performing medically unnecessary invasive procedures on autistic children in the name of bogus "research," and who paid children £5 at a birthday party to let him draw their blood. However, compared to the Geiers, Andrew Wakefield seems almost ethical and reasonable. Almost.
The Geiers are also apparently a lot more entrepreneurial. Whereas Andrew Wakefield only has Thoughtful House, as this page on their website shows, in addition to their newest locations in Florida and Kentucky the Geiers have metastasized to many states, including Maryland, Illinois, New Jersey, Texas, Missouri, and Indiana. They're franchising like McDonald's. I looked at the staff who are heading up the Geier franchises and wonder ow they get away with it. Of all of them, only one (Dr. Georgia Davis, who really should know better but apparently doesn't) is a pediatrician. Otherwise we have a neuroradiologist (Dr. David A. Clayman), a "genetic counselor" (Dr. Mark Geier), and an OB/GYN (Dr. John L. Young). None of the rest are physicians, although one is a Ph.D. analytical chemist, who also really should know better, at least about the Geiers' claims about testosterone and mercury.
Of course, being a chemist, he may have no clue about the rest of the motherlode of autism woo on the Geiers' website. It's all there: "hormone imbalances" (i.e., allegedly precocious puberty and elevated testosterone levels), "detoxification" pathways, immune system "dysfunction," and, of course, "heavy metal toxicity." It's a veritable cornucopia of autism "biomed" woo. In any case, given the lack of expertise in endocrinology, I find it astounding that the Geiers can make the claim that they offer "assistance for patients diagnosed on the autism spectrum in the areas of genetics, endocrinology, neurology, psychiatry, internal medicine, nuclear medicine, radiology, and reproductive medicine."
So what we have here is, as Mike Stanton points out, a nasty little franchise, and that franchise is metastasizing. Even more dubious, as mentioned in the press release above, a "significant portion of all the net revenues" generated from the ASD Centers will be funneled into Institute of Chronic Illnesses, Inc. and CoMeD, Inc., the former of which lists Mark Geier as its President and David Geier as its Vice-President and the latter of which lists Geiers crony Lisa Sykes as its President and lists as its address 14 Redgate Court, Silver Spring, Maryland 20905, which happens to be Mark Geiers home. Ironically enough, this is the same address listed as the ICI's address too. Nice arrangement, eh? The money from ASD Centers is "donated" to the ICI and CoMeD, both of which are controlled by either the Geiers or their cronies. This money then goes into more dubious "research."
After reading this press release, I've concluded that there's one thing I fear, and that is that Andrew Wakefield will see what the Geiers have done and get the idea to franchise his Thoughtful House woo throughout the country. Before long we could have two major franchises pushing autism "biomed" throughout the country.
I think I just scared myself. Certainly parents of autistic children should be scared. Heck, all parents should be scared, because the promotion of anti-vaccine views through such franchises could result in lower vaccination rates for all and the return of vaccine-preventable diseases.
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Their behavior is unconscionable. No man would be able to look at theirself in the mirror, after doing what they do to innocent people on a daily basis.
There must be something that the FDA Office of Criminal Investigations http://www.accessdata.fda.gov/scripts/email/oc/oci/contact.cfm can do to shut these shysters down before they seriously hurt/rip off too many people. Lupron is after all a FDA regulated product.
@Paul Browne
Unfortunately, unless the Geiers are offering it for interstate sale as distributors and making claims that it is for the treatment of autism, FDA can't really do anything. FDA does not govern the "practice of medicine", which would include simply using an approved drug off-label. Lupron is not manufactured by the Geiers, nor, I believe, does the manufacturer make any claims regarding the use of Lupron to treat autism.
Now, the various state medical boards might have an interest in them, as well as states Attorneys General. Oh, and the IRS might be interested in their financial arrangements.
Orac wrote insolently:
How could I forget them when their name (German for "vulture") is so hilariously apt?
Dammit, blockquote fail. The "I wouldn't surprised ..." bit was supposed to be part of the quote.
I know this is a bit off-topic, but the USA Today (as Stephen Colbert likes to say) has an editorial up warning about the dangers of the anti-vaccine movement, along with an accompanying "opposing view" by Blaxill (actually it's really just another piece on the martyrdom of St. Andy). JB has already commented on the editorial itself. I encourage you all to go comment!
At the ASD Centers, LLC we are proud to be physician owned and operated.
Are the franchises then owned by the Geiers? Or are the contact people not the same people who "own and operate" them?
http://www.autismtreatmentclinics.com/Contact.html
The contact list shows people at some of the franchises who are not physicians. Again with the question--are these people not the owners/operators?
USA today story is here:
http://blogs.usatoday.com/oped/2010/02/debate-on-fighting-disease-our-v…
Link to the USA Today op-ed http://blogs.usatoday.com/oped/2010/02/debate-on-fighting-disease-our-view-vaccine-fearmongering-endangers-child-health.html
The comments on that USA Today page are truly depressing.
"...represents a conflict of interest that would make a big pharma executive blush."
There's no such thing.
------------------------------------------------------------
At first glance, the list of disorders and tests is very impressive. Scary how something so questionable can look so legitimate on the surface.
And the whole "non-profit" angle just makes it even more disgusting. Even if they're shut down in the next few years, they'll get away with huge amounts of money.
If the chemist in question is Dr. Paul G. King, he is most certainly aware of the "autism woo" going on in this franchise. He is, after all, " the scientific advisor" (and senior font consultant) to CoMeDy.
Prometheus
I think the unfortunate autistic children should be more scared than their parents.
I'm staggered this sort of stuff is legal or tolerated anywhere in the developed world.
I am terrified for the next generation if these predators are not shut down. It is unbelievable that no laws can stop them! How is that possible???
It seems largely due to the strong presumption that parents are acting in the child's best interests. Large parts of the system assume that it's the parents who would act as whistleblower, so when the parents are being deceived by charlatans, things don't work as they should.
It's the same thing as Jay Gordon's argument that he can't possibly be committing malpractice by recommending that parents don't vaccinate, since the parents aren't filing complaints against him.
Giers are covering themselves by claiming it's all research and that "an institutional review board" passed on their research plan. of course, that the IRB was chaired by one of them and composed of their friends and employees doesn't matter. (to them) What it does is make it very difficult to actually shut them down, so long as they cling to non-profit status and shield themselves behind "we're just doing research". Now, if one of their suckers happens to have a child die while under their torture, that's different.
Distressing, isn't it ?
". . . opening of new treatment clinics in both Florida and Kentucky."
Uh, oh. Combined with legislatively mandated insurance coverage of applied behavior analysis (ABA)(http://www.kentucky.com/news/state/story/1141477.html), I foresee a bull market for the Geiers, should they get their treatments included, too.
Christ on a crutch, where the FUCK is the state medical board and licensing?
Two things here leap out at me:
1. That children are very likely being damaged by the shit being done to them by their own desperate parents and the evil shysters who take advantage of them (last I read, large doses of Lupron such as are apparently being given had a 30-40% complication rate, including cardiovascular disease and osteoporosis. Osteoporosis? At age 15? What. The. Fuck. People.)
2. The so-called medical regulation in America is just as broken as the rest of the medical system. There is just no way this should be happening on such an industrial scale and apparently unchallenged. Not in this era.
I feel ill.
My comment has been held for moderation. I suspect for the obscenity contained therein. I coudn't help it.
What is being done to children in the name of "curing" them makes me sick. This is like modern-day exorcism.
JB Handley has shown up in the USA TODAY comments
http://blogs.usatoday.com/oped/2010/02/debate-on-fighting-disease-our-v…
I couldn't help but chuckle a little that it says "JB Handley : (0 friends)"
Just wanted to comment, orac: you put 'genetic counselor' in quotes. One possible interpretation is that you don't believe this is a real field. A second possible interpretation would be that Grier is not a real genetic counselor. I'd like to hope that the latter is the correct interpretation of your text.
Genetic counseling (with one definition being assisting individuals in identifying and understanding the genetic basis of inherited diseases) is a real and respectable field (though subject, perhaps, to more abuse than many other fields). However, I believe the board that certified Grier as a genetic counselor (American Board of Medical Geneticists) has been superceded by a newer board (American Board of Genetic Counselors). While many ABMG certifications are for life, I'm not sure if this one is (the ABGC certification requires continuing education, for example).
and full disclosure- I'm married to a genetic counselor
It's the latter, Neuro. The Geiers claim to be many things, but they are not qualified to be most of them.
I still don't understand how they've gotten away with the fake IRB. Isn't there some kind of oversight for those sorts of things?
@Elaine
As far as the bogus IRB thing goes, they've run afoul of FDA regulations governing IRBs. The FDA can go after them for that. Penalties generally amount to disqualification of the IRB. Here is the relevant regulation.
IRB issues are among the hardest for the FDA to police, since the regulations were largely written before the rise of free-standing "research "organisations". The usual "club" that the FDA has is their ability to levy fines and to disqualify the organisation (originally expected to be universities and pharmaceutic companies) from future FDA-sanctioned studies.
That is sufficient to keep universities and pharmaceutical companies on the "straight and narrow" path, since they stand to lose a lot from an FDA ban. However, a free-standing research company could simply disband and reorganise under a different name, minus the one or two researchers who were "nailed" by the FDA, and be back in business within a month or two.
There are - of course - only a minority of free-standing research organisations that are breaking "the rules" in their research (although a larger number seem to be sailing quite close to the edge), but the FDA seems to be unwilling to spend the time and effort to go after them, partly because they are not (generally) researching new drugs.
From where I sit, the FDA seems to put its greatest effort into making sure that new drugs - new compounds that are going to be sold as drugs (as opposed to new compounds that are going to be sold as "dietary supplements") - are properly researched for safety and efficacy. Much of the research I see being done by free-standing research organisations is about new uses for already-approved drugs ("off-label" use) or "naturopathic" and "homeopathic" remedies (which have certain legal exemptions from FDA regulations).
So, as long as Geier and Geier don't try to develop a new drug, they will not attract the full scrutiny of the FDA. In fact, if they are simply trying to "make an old drug do new tricks", the FDA may not have any jurisdiction at all. Then it would be up to the state medical board (which is usually more interested in drug addiction and sexual abuse) or the state district attorney to prosecute them for using a questionable IRB. Don't hold your breath waiting for that to happen.
Prometheus
I changed my name from "Smarter Than You", meaning definitely smarter than Orac, to "Smarter Than All Of You". I did this because I came to realize that the majority of comments on Orac's blogs are written by idiots that know absolutely nothing about this subject. While people are out there trying diligently to figure out what is really going on with Autism and trying to help these children who are incredibly sick, all Orac's dumbass is doing is hiding behind his computer screen chopping these people at the knees while they are trying to run uphill. What a wastoid of a life! I have interviewed every person Orac has ever blogged about, all the way from Paul Offit to Mark and David Geier and everyone in between including the FDA, CDC, AAP, EPA, WHO, NIH, etc. etc. etc. Having done this I have talked to the actual source about every piece of science that exists in regards to vaccines and autism and I know each one of them upside down and sideways. Hey Orac, have you ever talked to or interviewed one person that you talk shit about. Maybe you should try this before you jump to your completely inaccurate account of the details and facts that you write in your blogs and mislead people. I am calling your bluff man and I see the only ones who follow your bullshit words are people who don't have minds of their own. I wonder how proud I would feel if all I did all day was google search and then try to act like I know everything. Try traveling the world for 6 years talking to everyone and their mom first and then maybe you might actually write with some accuracy for once.
And once again, I am not related to or associated with the Geier's or anyone else you have written about for that matter. I am just simply a person that knows about 1,000,000% more than you about this subject and noticed how inaccurate your blogs are. I'm sure your smart readers with half a brain have already determined this and stopped following you a long time ago. To everyone else, you are all idiots!
I'm wondering if there's any authority that they're accountable to as well. I'm from the UK so I don't know how it works in America, but is there a GMC equivalent they could be reported to? Given that their ethical standards would embarrass Andrew Wakefield, surely they must be in breach of some professional standard.
What's the med-blogging version of a Poe?
@28:
Unfortunately, he really is that much of a stupid liar. Or the most utterly brilliant Poe in history. The proper course in either case is to completely ignore him.
Elihphile: the equivalent would be the state licensing boards, but those are really only relevant if the person has an actual license. As far as I can tell, the Geiers do not. However, that shouldn't stop anyone from complaining to the state licensing boards about the various licensed physicians, etc who work with the Geiers.
@Arcale- I mostly figured so, but I can easily imagine how a bad genetic counselor might fall into wootopia and tarnish the entire profession.
I have interviewed every person Orac has ever blogged about, all the way from Paul Offit to Mark and David Geier and everyone in between including the FDA, CDC, AAP, EPA, WHO, NIH, etc. etc. etc. Having done this I have talked to the actual source about every piece of science that exists in regards to vaccines and autism and I know each one of them upside down and sideways.
And yet you come here with absolutely no trace of any actual knowledge allegedly gained from such interactions. All you did, in fact, was spend a lot of time explaining why you changed your handle. What does any of that have to do with the actual medical issues here?
Calli Arcale,
Mark Geier has a Maryland medical license which valid through September of this year. David Geier, of course, has no medical license.
Prometheus
*stage whisper* Hey Bee...
Should somebody maybe tell our friend 1,000,000% that the FDA, CDC, AAP, EPA, WHO & NIH haven't become people until recently? According to the Surprme Court?
Oh, but because that person is Smarter Than All Of You, I guess it knew...
*checks Smarter Than All Of You's hands*
...nope. It's not Sarah Palin.
Actually, it's the Office for Human Research Protections (OHRP), which is administered by HHS, that is responsible for regulating IRBs, not the FDA:
http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm
It should also be noted that almost certainly the only reason that the Geiers bothered to create their sham IRB is because reputable journals will not publish the results of human subjects research unless the investigator can show that it was approved by an IRB. Be that as it may, it's likely that another major reason that the Geiers can fly under the radar is that the OHRP concentrates primarily on human subjects research that is either funded by the NIH or other federal agencies or that is being done in order to win FDA approval of a new drug or device. That means universities and drug companies. Since the Geiers are doing "research" (it galls me to use that word to describe what they are doing with Lupron) that is neither federally funded, being done to win FDA approval, nor being done at a university or drug company, the OHRP is unlikely to act unless it gets a lot of complaints.
Kathleen Seidel documented the activities of the Geiers in 2006 in even more detail than I did. I don't know if the Geiers are still doing things that obviously unethical. it's possible that they've learned enough to take themselves and their cronies off their IRB, only to replace them with other anti-vaccine and pro-autism "biomed" woo type people in order to avoid the appearance of a conflict of interest while still stacking the deck in their favor. I don't know.
I changed my name from "Smarter Than You", meaning definitely smarter than Orac, to "Smarter Than All Of You". I did this because I came to realize that the majority of comments on Orac's blogs are written by idiots that know absolutely nothing about this subject. While people are out there trying diligently to figure out what is really going on with Autism and trying to help these children who are incredibly sick, all Orac's dumbass is doing is hiding behind his computer screen chopping these people at the knees while they are trying to run uphill. What a wastoid of a life! I have interviewed every person Orac has ever blogged about, all the way from Paul Offit to Mark and David Geier and everyone in between including the FDA, CDC, AAP, EPA, WHO, NIH, etc. etc. etc. Having done this I have talked to the actual source about every piece of science that exists in regards to vaccines and autism and I know each one of them upside down and sideways. Hey Orac, have you ever talked to or interviewed one person that you talk shit about. Maybe you should try this before you jump to your completely inaccurate account of the details and facts that you write in your blogs and mislead people. I am calling your bluff man and I see the only ones who follow your bullshit words are people who don't have minds of their own. I wonder how proud I would feel if all I did all day was google search and then try to act like I know everything. Try traveling the world for 6 years talking to everyone and their mom first and then maybe you might actually write with some accuracy for once.
Blah Blah Blah. And people have the nerve to say Doctors are cold,arrogant and unapproachable.
You wouldn't happen to be able to provide proof you're not just an A) Butthurt emotional troll (To coin a phrase used often in WoW), B) A lacky of Age of Autism/NaturalNews/Any other AltMed repository of rubbish that is oft debunked, or C) that you are who you truely say you are and have more than hearsay to back up your claims, would you? Of course not, you just chose to fume up and get frustrated at the fact that people wouldn't just take your word for it, and accept that these people are HARMING CHILDREN far more than they would possibly "benefit" (and I use that term laughably, as the only benefit they can prove is anecdotal at best). They're not trying to figure out what it causing autism - they're grasping at theoretical studies that have only demonstrated what they claim is causing autism when Testosterone and Methyl Mercury (PROTIP: Ethylmercury and Methylmercury aren't the same) are combined inside of a Benzene solvent.- and continuing to propigate the myth that Autism is caused by some nefarious interaction with vaccines and children. They're persuing the same dead roads that have been disproven time and time again, and subjecting children to unethical, questionable, and highly dangerous research under the guise of being approved by an IRB - an IRB RAN by the Greers. Now, I may just be a Paramedic and a Console Jocky, but in my limited amount of training, that's a major red flag. And I'm sure that, having "traveled the world for six years meeting every source of information on autism!" (Laughable quote, there), that you know that there are many more people than the Greers and Wakefield who persue legitimate autism research. Those are the real heros to me - the geneticists, psychology/psychiatrists, neurologists, neurochemists, and many others who are searching for the true causes of autistic developmental delay - the ones who dont treat their patients as guinea pigs and people who would be better off dead than living with autism.
Oh, and btw - Orac is a very gifted surgical oncologist and a cancer researcher. Debunking quacks is what he does in his little spare time for fun. I'm sure the people who are here on this earth because of him would agree. Why don't you interview them in your travels, Mr. Smarter.
"And once again, I am not related to or associated with the Geier's or anyone else you have written about for that matter. I am just simply a person that knows about 1,000,000% more than you about this subject and noticed how inaccurate your blogs are. I'm sure your smart readers with half a brain have already determined this and stopped following you a long time ago. To everyone else, you are all idiots! "
I doubt that. For the vitrol and black bile you seem to be throwing at everyone, you seem to have a very personal connection. Maybe you're the parent of a child with autism who's been lead down the road of sheep lead by the herders such as a Greer or JB Hadley, or maybe you're a fanboy of them. I don't know. But those of us with "Half a Brain" tend to see that what Orac and others blog about falls very much in line with Science.
i can see the conversation at the checkout of these new franchises:
"would you like fries with that chemical castration?"
@smarter than all of you:
you mention the "FDA, CDC, AAP, EPA, WHO, NIH"
have you also interviewed the MIC, KEY, MOU, and SE?
Totally unrelated, but Lupron is also used to prevent breast cancer and I heard recently that it has been suggested as a potential contraceptive.
For someone who's smarter than all of us, it's remarkable that the guy didn't address a single argument or provide a single data point that we could discuss. All he said is that he's smarter than all of us, asserted that Orac is just wrong, and expected us to simply believe him (presumably because he's smarter than all of us.)
I think he must have confused us for people who give a damn about firm unsupported assertions.
Mr./Ms. SmartyPerson sez: "I wonder how proud I would feel if all I did all day was google search and then try to act like I know everything."
To get a sense of this, go talk to Jenny McCarthy and she'll fill you in.
Thanks for the intelligent discourse. It makes me nostalgic for those wonderful days in third grade.
Of course if we were ACTUALLY smart, we would have completely ignored his rantings instead of all collectively turning into troll-bait and feeding his ego.
Just sayin'...
(For the record, I am aware of the irony of posting a comment admonishing people to stop posting comments about this issue. But I don't care!)
I just searched on the OHRP website, and it looks like the ICI IRB has been "deactivated".
Check out what cropped up in my backyard:
Great Plains Lab - Vaccine Injury Treatment
Bonus: The Director (and owner) claims to have personally spoken to Andy Wakefield and refer to the Lancet redaction as a "witch hunt". Apparently the level of cognitive dissonance allows for the simultaneous "development" of new therapies and the immediate profits reaped from duping families desperate for hope that their loved one will be "cured".
Shameful, simply shameful.
Yeah. Cos most breast cancers proliferate in the presence of estrogen. Lupron strongly inhibits the estrogen.
As a contraceptive? Estrogen is an integral part the ovulatory cycle; inhibiting it would disrupt the process. But why take a contraceptive that also demolishes your libido???
@26 ... not to mention, if you follow back far enough, it is the same idiots year after year. I am not sure what is lacking in their lives, but the truth is not what they are interested in. It is funny how they attack you with the SAME stupid 'come backs' they accuse other 'stupid' people (anyone who disagrees) of using. I just come to laugh at them, and hold out a little glimmer of hope that some might actually wise up over the years.
Welcome to the Monkey House
Prometheus @ 33:
Ugh; so one of them actually has "earned" the legitimacy of the medical profession? Well, at least that gives Virginia's medical board something they can (and should) strip from him.
@39 & 45:
Lupron would be useful against estrogen-receptor positive breast cancer, of course, but not other forms of breast cancer.
I have had a thought. The next time I see someone pull out the "pharma shill" gambit, I'm gonna ask them how much Abbott Laboratories is paying the Geiers to hawk their drug for a market that a) doesn't need it and b) is getting higher doses than are normally recommended. Abbott is aware of what the Geiers are doing, and IIRC, has been rather blase about the whole thing. Officially distancing themselves, without actually putting them down or otherwise discouraging them from selling this drug for them.
1. @Neuro- The scare quotes around "genetic counselor" are probably because it looks like Sonny Geier just kind of gave himself that title, when it is actually a legitimate and crucial job which normally requires education on at least an MS level.
2.
I don't think it could have been put any better.
@36Chance
Amen
Well, they could always switch to a newer, different type of hormone woo. Autism: Oxytocin Improves Social Behavior of Patients, French Study Finds
And sirhcton @17: Legislatively mandated insurance coverage of ABA? Why do the insurance companies need to pay for that? Can't the parents pay for ABA if they want it? I think it was on this blog that I read that autistics just have a developmental delay not developmental stasis. In that case, it seems hard to justify paying for ABA.
@51: Honestly, oxytocin for autism really isn't woo. It's unproven, and would probably be unethical to use at this point in time, but it has enough plausibility that we shouldn't call it woo until and unless it gets tested further and fails.
I'm a software engineer, so I can't really judge the plausibility of oxytocin, but I get the feeling that it's been a bit overhyped (and oversimplified) in the collective consciousness. The average layperson now things "oxytocin = attachment hormone" when in fact it's much more complicated than that. I can't judge it's plausibility, but to me, it has the hallmarks of being misunderstood by the public to make such a use seem much more plausible than it really is. That makes my skeptical antennae twitch, and makes me really want some science.
Ed Yong has a solid story on the new oxytocin findings. The penultimate paragraph reads:
May I ask you for positive suggestions for improving the prevention and treatment of autism?
I agree that most current biomedical treatments are unproven and could be viewed skeptically until there's an opportunity for good studies.
Yes, parents are desperate for anything offering hope. Part of this desperation stems from the poor response of the insurance industry, the medical community and the government agencies which should be funding studies of the above and other modalities of treatment.
Continued disdain and ridicule of others' attempts to help is easy and, quite frankly, it's "shooting fish in a barrel" and not worthy of any more of your energy.
What are your positive thoughts about the prevention and treatment of children with autism?
Best,
Jay
@Scientizzle
AoA has a story up. I posted a comment there and cross posted to Silenced by Age of Autism.
@Jay
As far as prevention go, we can't really address that until we know what is causing autism, wouldn't you say? That is being researched pretty actively.
As to treatment, there are treatments out there that have some demonstrable efficacy. They aren't silver bullets; they take a lot of effort and work, but they are out there. The problem is that parents want the quick fix. They want easy answers. Unfortunately, there aren't any. Yet.
Insurance coverage needs to be reformed. Financial and emotional support need to be offered to parents, while balancing the undue influence capacity of monetary support (e.g., financial aid acting as an incentive to get an autism diagnosis, etc.). Quite frankly, the support network for autism sucks, and there is still a lot of misunderstanding. So that also suggests improvements in education about autism - what it is and what it isn't.
Jay,
Are you serious? Do you REALLY mean to argue that unproven (and even proven false) quackery without even a plausible mechanism of action should be offered if there are no better alternatives? Let's be honest here. There's not a single "biomedical" treatment that's any more supported than sprinkling randomly-chosen herbs over the victim's head. And they're mostly much more dangerous, and uniformly far more expensive.
Taking money from desperate parents for risky "treatments" that some quack has made up out of thin air cannot possibly be considered anything other than grossly unethical fraudulent malpractice. Completely independent of whether there are proven treatments available.
I don't think there is a "prevention" for autism except for giving the MMR vaccine (rubella in utero is one known cause of autism).
As far as treatment, Dr. Jay, you really need to get to know the qualified speech and language pathologists, and the occupational and physical therapists in your area. I am surprised that you as a pediatrician have never heard of these very important specialists. Try reading up about them at http://www.aota.org/ and http://www.asha.org/.
I would also suggest that you familiarize yourself with the special education specialists in the many schools in Southern California. These include many skilled educators who work with autistic and other disabled children everyday.
Several of the universities in your area have active research programs on autism (I am out of permissible links, but one Studies to Advance Autism Research and Treatment (STAART) program is at UCLA). There are experts there that could help with your education. Another expert is at UC San Diego, Laura Schreibman. You should read her book The Science and Fiction of Autism.
Given what we know so far (it is genetic) the only sure way to improve prevention would be to give every engineer a vasectomy/tubal ligation with their degree and every man over 40 a vasectomy since their is correlation with the age of the father.
Since this is unacceptable and would change society for the worse, we should be listening to the neurodiversity advocates. Many people find the idea of "autism prevention" highly offensive since it devalues autistic individuals.
A few cases of sever autism is probably the price we have to pay for the unique contributions that high functioning autistics can make. I find the concept that everyone should be "normal" very abhorrent.
I am listening to something about gays in Uganda on CBC Radio One as I type this and I can see an analogy between the old idea that homosexuality was a mental illness or worse and the idea that all autistic people need to be cured.
@51: As to why the insurance companies need to pay for ABA, because the legislature would say they have to. Please look at http://www.kentucky.com/news/assembly/story/1141615.html, which I should have included in my first post. The article mentions how intense and expensive ABA is, but does not examine if it is actually effective. As well, Autism Speaks is pushing this, too, as the second article mentions.
@52: I did a little looking around and it does seem like there is some plausibility to the oxytocin autism findings. Looks like there was a study published in the fall about epigenetic changes affecting the expression of the oxytocin receptor gene.
Study Surprise Yields New Target for Assessing Genes Linked to Autism
Genomic and epigenetic evidence for oxytocin receptor deficiency in autism
If it turns out autism is more of an epigenetic thing than a genetic DNA thing, I'm thinking that could really complicate the effort to find a cause because of the potentially large number of environmental things that might cause epigenetic changes. But, even without being able to figure out the prevention piece right away, the epigenetic findings could really help with developing treatments, especially thinking in terms of personalized medicine.
"Could be viewed skeptically" is wildly understated. Seriously, Dr. Gordon, if Pfizer were to market a treatment with the level of safety & efficacy data for most of these âbiomedicalâ treatments, would you be so milquetoast about it? If so, it's a remarkable double standard.
There is much work to be done in overhauling medical care, and insurance companies are certainly part of the problem. On the research end, there is quite a lot of good work going on, and many government agencies seem to be important (more or less) functional components. Education strategies are still developing and everyone could stand to gain from a greater scientific rigor applied to developing educational methodologies that can help students and parents of broader physical & mental capacities. One thing that would help would be to allow some re-prioritization of research resources (a zero-sum game, generally) towards the most promising and plausible interventions and away from implausible/unsupported modalities and quit flogging the dead horse of a vaccine-autism link.
Whether one has only virtuous intent or not is completely beside the point when one's words and actions have demonstrably negative effects. This is painfully obvious. If what you're actually seeking, Dr. Gordon, is "positive suggestions for improving the prevention and treatment of autism" then you would do your part more adequately by no longer endorsing (explicitly or tacitly) scientifically unsupported (and/or discredited) treatments and antivaccine rhetoric. The first step in improving the lives of autistics and their parents should be to dispel the notion that there must necessarily be something/someone to âblameâ for a child that is âdamagedâ. Step two should be to disabuse the parents of the unsupported claims (and flat-out lies) regarding the etiology of autism and their purported treatments and âcuresâ. A frank discussion should be had about developmental delay versus developmental stasis and what reasonable expectations should be maintained for a childâs progression.
I think the vast majority of skeptical/SBM bloggers & commenters Iâve seen initially respond with reasoned counters to claimed misinformation. As that fails, and frustration sets in, sometimes the tone degrades; however, to quote Thomas Jefferson: âRidicule is the only weapon which can be used against unintelligible propositions. Ideas must be distinct before reason can act upon them.â I, for one, will continue to heap âdisdain and ridiculeâ upon those who reject scientific evidence in favor of conspiracy theories, fear-mongering, and pseudoscience.
There is much more to learn about the genetics of autism (with heritability estimates that have reached 90%, though this is likely an overestimate PMID: 17033636) and the heterogeneity within autism spectrum (which can be partly characterized by variable associated "minor physical anomalies" PMID: 18626481).
More work is needed to determine whether there is a real increase in the prevalence of ASDs (possibly a small one, IMO, due in large part to increasing average parental age PMID: 20143326), what (if any) environmental triggers exist, how they interact with genetics, and whether this is avoidable.
I think thereâs plenty of room to improve the epidemiology of ASD comorbidities as well as the diagnosis and treatment of other ailments within ASD patients to improve standard of living and facilitate science-based behavioral/pharmacotherepeutic interventions for cognitive and social traits.
Finally, I think the important sociological horizon is the eventual treatment (medically and culturally) of mental disorders not as character flaws or a deficit in oneâs humanity, but as variations within the continuously and broadly variable human condition. This is an outcome that will require continual vigilance against outdated notions regarding mental status as dependent upon some internal or external moral force; progress in this arena will undoubtedly impact everything from insurance coverage to educational opportunities.
Jay Gordon @ 55:
Prevention is a tricky one; at this point, there are few known causes of autism which are actually preventable. Prenatal rubella is one of the few. One recent study suggests that the rise in autism rates may be partly explained by increasing maternal age. (Interestingly, the same study found that paternal age wasn't as important as previously thought.) Perhaps that's the angle we really want to go after, but it'd be a tough nut to crack. How do we encourage people to have their children younger? We'd be talking major social changes, really. It's not uncommon to be unmarried at 30 nowadays, so lowering maternal age is not going to be easy. (And we wouldn't want to mandate a maximum age of motherhood, either, both because it's not an absolute correlation and because it gets into a very hot issue: the right to reproduce.)
There is also some evidence that autism may not be as maladaptive as we think, so perhaps eliminating it would have consequences we don't expect. Severe autism, yes, that's debilitating, but the rise in autism has come in the form of more functional individuals. Is it something to do with modern society, that makes their quirks more problematic for them? Or what? Again, not easy to solve.
But some resolution for that may come from my answer to the second part of your question. What are my positive thoughts for the treatment of autism?
Autistic children, at all points on the spectrum, are capable of learning. It is astonishing how effective the human brain is at learning. The process literally shapes the brain, because the brain develops partly in response to external stimuli. For autistic people, this process does not go as smoothly as for normal people. But it does still occur, so logically, it should be possible to modify teaching methods to fit however they *do* learn. It's possible someone will even come up with a drug or a gene therapy that assists in this process, but at present, I only see symptom relief stuff -- so, an autistic child with ADD will improve better if they get stimulant medication to relieve the ADD symptoms, for instance, or an autistic child with gut problems will improve better if they get treatment for the gut problems (because gut problems are very distracting and can even lead to nutritional problems). In both cases, the treatment (medication or otherwise) isn't really helping with the autism; it's just removing the distractions that get in the way of the child trying to learn. Which is very important, don't get me wrong.
Ultimately, I think the most important thing for all autistic children to receive, no matter where they are on the spectrum, is therapy from experts who understand autism. They need to learn how to manage their feelings, to understand the people around them, and to be understood in turn if they are to be independent later in life. This is true regardless of what other interventions the child receives, and the earlier such therapy starts, the better -- less to unlearn that way.
I think the biggest key to that is the public school system. I've had mixed luck with the medical community, but fabulous results from my local school district. But districts vary widely; one just 15 miles away is notoriously poor in its special ed, basically just making sure the students won't cause too many problems with respect to No Child Left Behind rather than actually striving for what's best for the child. This is something that needs strong, unified political action at state and maybe even federal levels, because I think the biggest tragedy is that a great many autistic children will receive no therapy of any kind unless their parents have the money to pay for it. Yet this therapy amounts to education, and our country has a guaranteed right to education until age 18 (or completion of 12th grade or equivalent, whichever comes sooner).
That may be true. However, some practices are hazardous, and many will delay the parents seeking behavioral/speech/occupational/etc therapy for their children. Plus, some of us here are science geeks, and we just like to discuss the state of the evidence in any case. ;-)
Dr. Jay, there is more interesting reading at The Early Course of Autism.
Jay Gordon,
Working to educate people about quacks such as the Geiers who harm children with ineffective and dangerous treatments such as chelation and chemical castration would be a great way to help improve the quality of life for autistic children. Thank you for your time, concern troll.
Callie, I almost wonder if we live in the same place.
@Jay Gordon
In addition to the excellent comments above, I would like to add a certain ironic thing.
I've spoken in the past to Dr. Zosia Miedzybrodzka at the University of Aberdeen, who has done (and published) research into causes and potential treatment targets of autism, and she expressed a great deal of frustration at how much her research has been slowed by all the hoops they now have to jump through in order to justify even blood samples from children being kept for research purposes. The extra added layers of bureaucracy and extra need for justification have been driven by several high-profile cases of tissue samples from children for research being obtained and/or kept unethically. The irony here is, one of those culprits was Andrew Wakefield. Because of his malfeasance (to be fair, he wasn't the only one, he was just one of a few, but he WAS one of a few) genuine research has been hampered.
Thank you for some excellent suggestions. I do, of course refer to language specialists, OTs and PTs and have many children in special education classes. I was looking for your insight and I appreciate your comments Todd.
Militant, your neurodiversity point of view is much appreciated and highlights my need to be more sensitive. I appreciate your patience in responding. Callie and Chris, thganks.
Best,
Jay
Jay -- you are very welcome. I really appreciate your reaching out to people who historically have disagreed quite vocally with you. We don't agree about everything, but that doesn't mean we don't share a passionate desire to help autistic children, and can't share perspectives on the subject.
Kristen -- I'm in the Twin Cities, Minnesota. Generally good academics, but we've been hit by a lot of budget cuts at the state level, which means districts have to turn to bond referendums to get funding from property taxes. How useful this is depends on the demographics. My district isn't the most wealthy, but has a low average age -- and therefore, a lot of students, which means a lot of voters have a personal stake in public education and are more likely to vote in favor of bond referendums. The "grayer" districts and the ones with more poverty tend to have more difficulty getting their bond referendums passed. That said, there was a scary article in the regional paper last week -- our district is expecting to have to cut the equivalent of 78 full-time teachers. Selfish as I am, I worry that this will particularly impact my daughter's education. There's a public meeting tonight about it, and unfortunately I won't be able to attend. :-( Could be worse, though. Other districts have had to close entire schools. (The kids aren't out of an education; they get bussed to a different school which is now much fuller than it was before.)
Dr. Jay: "I agree that most current biomedical treatments are unproven and could be viewed skeptically until there's an opportunity for good studies."
"Could be viewed skeptically"? What other way is there look at treatments like the Geiers' chemical castration with Lupron, which have no logical scientific basis and no demonstrated efficacy?
The most "positive" approach is to focus research on promising avenues including genetic/molecular bases of autism, and not to scattershot available money towards studying every "therapy" offered by the exploitative quacks who prey on parents of autistic children. It would also be extremely positive if practitioners like yourself would stop obsessing about vaccines being the root of evil, so we could stop wasting money on dead-end research into the debunked vaccine-autism connection.
Chris has already suggested treatment approaches which have validity; it would be excellent if you'd direct parents toward them as opposed to "biomedical" woo which is useless and potentially harmful, and needs to be discouraged instead of excused with wishy-washy statements of yours like "could be viewed skeptically until there's an opportunity for good studies".
I wonder if Dumber Than All of Us took his meds today.
I also wonder if Dumber Than All of Us has read anything about autism research besides the vaccine wankery he jacks off about. He hasn't read about oxytocin and its action in people who have autism AT ALL?
Callie
No, I guess we don't live anywhere near each-other :(. My state has also been hit with budget cuts. We are lucky to be living in a (rural) county that has some of the best programs for special needs children. But the next county over is more metropolitan and has terrible-to-non-existent programs.
There is also a alternative school that the county sent my sister to until we could get her bipolar disorder under control, even though it is technically a private school. I can't complain.
The problem is the lack of Developmental Pediatricians. There is only two for the whole area, which includes a fairly large city. Sometimes the wait is three months or more.
The director of the parent resource center at my son's school said she wanted me to meet another mother who has some of the same views I have on autism and vaccines. Even though it is silly, I had a little inkling of hope it might be you.
@Jay Gordon: May I ask you for positive suggestions for improving the prevention and treatment of autism?
@Calli Arcale: There is also some evidence that autism may not be as maladaptive as we think, so perhaps eliminating it would have consequences we don't expect.
What's funny about this is that Jay Gordon has previously expressed his concern that vaccination might eliminate measles, as smallpox was eliminated, and that we have no idea what the consequences might be. But he's enthusiastic about "preventing" people who are not neurotypical.
As someone who spent two years undergoing Lupron therapy, I can't imagine inflicting this upon a mentally disabled child. Especially not one as sensitive as autistic children tend to be. I would imagine the changes it causes would be terrifying.
However, it did completely relieve me of any and all anxiety I had about everything. Along with most of the other pleasant emotions I had as well, unfortunately.
LW: Jay Gordon's position with respect to autism (that it should be cured if possible) is not entirely unreasonable. You don't want to change people, to make them not "them" anymore, but you do want your children to have the best opportunities possible. If they're throwing things at people and can't understand why that's bad (which is one of our current challenges with our daughter), that's going to impair them down the road. And there are a couple of less functional autistic children at my church; while their parents have done extraordinary work with them, I know those kids will be dependent on other people for the rest of their lives, and I know it was difficult for their parents to accept that. That's not something to be ashamed of; their parents love them tremendously, and they love them for who they are. But if your child gets a disability -- any disability -- you will likely have to go through a sort of mourning process as you come to accept the hand that your child has been dealt, and the fact that you will not be able to make it all better. The more severe the child's disability, the more painful this is likely to be, and I think the best thing is for parents to go through that process and get to the other side. Not until they accept the reality of the situation can they objectively assess what is best for the child.
Truthfully, that's part of the problem I have with the "Rescue Angels" and such. They feed the denial stage. "No, you don't have to accept your child's disability, because we'll make the problem go away!" Which might be okay if they actually *could* make it go away, and the evidence seems disappointing to me so far.
Calli: perhaps I was not clear. I was just pointing out that Gordon apparently wants millions of children to suffer potentially fatal or permanently disabling diseases like measles because eradicating the diseases might -- just might -- have some unspecified bad side-effects, but he seems to see no conceivable value in autistic children, who must be "cured" or "prevented" at all costs (to them). Thus he supports chelation, which can cause death or permanent brain damage in children who do not suffer heavy metal poisoning, such as autistic children.
I understood your point, LW, and I've heard the same point made by others as well. It is a common talking-point for arguing against the chelators, etc. I disagree with it, however, because I do not believe it fairly depicts the opponent. In other words, it is a strawman -- and one liable to inflame. While there is a certain satisfaction in irritating the enemy, it isn't useful if you want to actually persuade them of something. More importantly, third parties observing the interchange will notice the use of hyperbole and may conclude that because this is wrong, maybe the rest of what you've said is wrong as well.
I disagree vehemently with Dr Gordon's perspective on vaccines with respect to autism, and I disagree about a lot of the proposed therapies. They're hogwash, and I won't mince words about that. I think it's frightening that children are receiving chelation therapy, which will only aid the pocketbooks of the doctors performing it, and the pharmaceutical corporations (and, occasionally, small compounding pharmacies) that make the chelating agents. Frankly, I think that doctors who will allow their patients to undertake dangerous and implausible treatments without comment are, at best, enablers unaware that they have put their stamp of approval on something that is definitely not the standard of care. The DAN! doctors are more than enablers, of course. They do serious harm, mostly because they can't pull their heads out of their heinies long enough to look at objective evidence about their procedures -- either because they are too wrapped in pride, or, in rare cases, because they really don't care and are only in it for the money.
But I have seen no reason to conclude that these people see no conceivable value in autistic children. On the contrary, most of the people I've seen attempting to "cure" or "recover" autistic children love them very much. For that matter, why would they go to such extremes (and such expense) if they didn't see any value in these children? That they are taking the wrong path doesn't mean they see no value in "non-neurotypical" children. I might agree with you if, like the Nazis (did I just Godwin the thread?), they were recommending sterilization or euthanasia. But they're not.
And though it wasn't used in this thread, I also disagree with calling anti-vaxxers "pro-disease" (usually; there are a few exceptions). Most anti-vaxxers are not at all pro-disease. Their main problem is that they don't realize how serious the diseases really are, or they think the diseases were already eradicated prior to vaccines and so there's no point vaccinating against them.
So it's not that anti-vax autism curebie types would happily accept a thousand dead to to measles to prevent one case of autism. If you believed as they did, that measles was an annoying but basically harmless disease and that vaccines cause autism, then you would want the vaccines gone as well. (Who wouldn't?) It's a problem of ignorance tied up in pride, not a problem of hatred and intolerance. While there are hatred and intolerance issues faced by learning disabled people, I do not believe that this is one of them, and trying to put a discrimination spin on it doesn't really help the argument, IMHO.
Interesting detail: The Fort Lauderdale, Florida franchise is headed by a radiologist with no training in either pediatrics or endocrinology.
Somehow, this does not surprise me. As the... person... (I use this as a substitute for my first choice in wording, which was far less polite) in question is marketing to my clients, however, "annoyed" and "angry" do not quite cover my feelings on the matter.