Some readers of autism's gadfly will remember some time ago I wrote
a post about the locus coeruleus and autism. One of the readers and commenters of the post was a gentleman named Yuri Danilov, who gave me his phone number and signed his name and asked me to call him. I wrote down the phone number and deleted the comment. I was apprehensive. When I searched for this name in Google, I discovered that this person was a brain researcher and biophysicist in this neurologic rehabilitation department at the University of Wisconsin. I was flattered this pristine individual and scientist would take the time to read my humble blog and called him up.
He told me that he believed he had found a very new and revolutionary treatment in autism that would greatly help ameliorate the symptoms of autism and he was looking for suitable research subjects. He had a thick Russian accent and I had a bit of trouble understanding everything he said. I asked him if this was a cure for autism (something as most readers of my blog know I long for). He replied that it was not a cure but a very revolutionary treatment but that nobody believed him. He asked me how old I was. I was 53 at the time. He claimed that was not necessarily too old to participate in this study, but I had the feeling he may have felt I was a bit older than the research subject he was looking for.
Since I had never heard of him I was wondering if it was a coincidence that he happened to hold a faculty position at the same university as rogue neurodiversity researcher Morton Gernsbacher. I asked him if he was working with Gernsbacher. He replied that he did not work with Gernsbacher but he knew someone who had worked with her.
I told him that I was hesitant to travel to Wisconsin unless I was compensated for it, at least had my travel and accommodations paid for. He told me that he had people come all the way from Australia to participate in his research studies.
Since he had read my article on the locus coeruleus I wondered if his research was somehow related to this area of the brain which is the central location of the various tracts of axons that travel to various locations in the brain carrying the neurotransmitter norepinephrine. He just said that his research involved the brain stem. When I tried to pursue the matter further, he was rather tight lipped and just said that I could check out the lab's website and then email him if I had any further questions.
As I read about him and his colleague, the late Dr. Paul Bach-y-Rita, I became fascinated and intrigued. They had developed a technique where blind people whose retinas had been damaged could put this device on their tongue which had electrode arrays and the senses through the tongue could enter the visual cortex and the blind person could end up seeing. Bach-y-Rita had stated you don't see with your eyes you see with the brain. Eyes are merely a vehicle that sense changes in light energy but it is the occipital cortex of the brain that perceives these energy changes and thus sees. The skin and the retina have in common they are both sensory receptors and that may be enough. Danilov was a biophysicist and neuroscientist who worked with Bach-y-Rita who passed away about four years ago. The tongue is considered an ideal entry point into the brain for sensory substitution because unlike skin on other areas of the body it generally has no insensitive layer of dead skin on it.
The research that Danilov is also involved in addition to sensory substitution is neuromodulation, which involves stimulating the brain in various ways such as attention to a task, implanting electrodes in various areas of the brain to abort epileptic seizures, and the new cutting edge treatment transcranial magnetic stimulation which John Robison has been participating in. They are also using a revolutionary new technique called cranial nerve noninvasive neuromodulation, to help with neuroplasticity.
I never heard back from Danilov and I seem to remember I sent him an email about something (don't remember exactly what) which he never answered. I won't rule out writing him again at some point.
My recent track record as a research subject has been less than stellar. About 12 years ago Greg Allen was doing a study in the Courchesne lab involving fMRI. My head was too large to fit into the MRI scanner along with the computer equipment so I could not participate. I tried to have an MRI scan at Cal Tech in a study that Dan Kennedy was doing and for some reason the coil would not fit around my head or on my face. I wrote about this in a previous gadfly post. This is in contrast to my earlier experiences as a research subject where I underwent a couple of MRI scans that Eric Courchesne and I guess some other people who worked with him were doing. So even if I were provided airline ticket and hotel in Madison Wisconsin for a brief time I might not be of any use to Dr. Danilov either.
a post about the locus coeruleus and autism. One of the readers and commenters of the post was a gentleman named Yuri Danilov, who gave me his phone number and signed his name and asked me to call him. I wrote down the phone number and deleted the comment. I was apprehensive. When I searched for this name in Google, I discovered that this person was a brain researcher and biophysicist in this neurologic rehabilitation department at the University of Wisconsin. I was flattered this pristine individual and scientist would take the time to read my humble blog and called him up.
He told me that he believed he had found a very new and revolutionary treatment in autism that would greatly help ameliorate the symptoms of autism and he was looking for suitable research subjects. He had a thick Russian accent and I had a bit of trouble understanding everything he said. I asked him if this was a cure for autism (something as most readers of my blog know I long for). He replied that it was not a cure but a very revolutionary treatment but that nobody believed him. He asked me how old I was. I was 53 at the time. He claimed that was not necessarily too old to participate in this study, but I had the feeling he may have felt I was a bit older than the research subject he was looking for.
Since I had never heard of him I was wondering if it was a coincidence that he happened to hold a faculty position at the same university as rogue neurodiversity researcher Morton Gernsbacher. I asked him if he was working with Gernsbacher. He replied that he did not work with Gernsbacher but he knew someone who had worked with her.
I told him that I was hesitant to travel to Wisconsin unless I was compensated for it, at least had my travel and accommodations paid for. He told me that he had people come all the way from Australia to participate in his research studies.
Since he had read my article on the locus coeruleus I wondered if his research was somehow related to this area of the brain which is the central location of the various tracts of axons that travel to various locations in the brain carrying the neurotransmitter norepinephrine. He just said that his research involved the brain stem. When I tried to pursue the matter further, he was rather tight lipped and just said that I could check out the lab's website and then email him if I had any further questions.
As I read about him and his colleague, the late Dr. Paul Bach-y-Rita, I became fascinated and intrigued. They had developed a technique where blind people whose retinas had been damaged could put this device on their tongue which had electrode arrays and the senses through the tongue could enter the visual cortex and the blind person could end up seeing. Bach-y-Rita had stated you don't see with your eyes you see with the brain. Eyes are merely a vehicle that sense changes in light energy but it is the occipital cortex of the brain that perceives these energy changes and thus sees. The skin and the retina have in common they are both sensory receptors and that may be enough. Danilov was a biophysicist and neuroscientist who worked with Bach-y-Rita who passed away about four years ago. The tongue is considered an ideal entry point into the brain for sensory substitution because unlike skin on other areas of the body it generally has no insensitive layer of dead skin on it.
The research that Danilov is also involved in addition to sensory substitution is neuromodulation, which involves stimulating the brain in various ways such as attention to a task, implanting electrodes in various areas of the brain to abort epileptic seizures, and the new cutting edge treatment transcranial magnetic stimulation which John Robison has been participating in. They are also using a revolutionary new technique called cranial nerve noninvasive neuromodulation, to help with neuroplasticity.
I never heard back from Danilov and I seem to remember I sent him an email about something (don't remember exactly what) which he never answered. I won't rule out writing him again at some point.
My recent track record as a research subject has been less than stellar. About 12 years ago Greg Allen was doing a study in the Courchesne lab involving fMRI. My head was too large to fit into the MRI scanner along with the computer equipment so I could not participate. I tried to have an MRI scan at Cal Tech in a study that Dan Kennedy was doing and for some reason the coil would not fit around my head or on my face. I wrote about this in a previous gadfly post. This is in contrast to my earlier experiences as a research subject where I underwent a couple of MRI scans that Eric Courchesne and I guess some other people who worked with him were doing. So even if I were provided airline ticket and hotel in Madison Wisconsin for a brief time I might not be of any use to Dr. Danilov either.
One of the things I don't understand is how this stuff can be applied to autism where the etiology of the brain problems is still not very well understood. Of course I am not sure what Danilov and his people are doing and I guess I will have to wait to find out. I still wonder if there is any chance this treatment (albeit experimental) could help me and others on the spectrum. I find it interesting that Danilov stated that no one believed him. The people who treat autism with questionable non peer reviewed treatments such as chelation, hyperbaric oxygen, gluten free diets etc are believed and still have their adherents. Rimland's heir apparent, Steve Edelson, has been trying to bring back research into secretin in spite of study after study refuting its effectiveness.
I guess I will never know and I will just have to wait and see what Danilov's research produces. At some point he will undoubtedly publish in peer reviewed journals if this research shows promise in treating ASD's. The media will likely pick up on this as he and Dr. Bach-y-Rita before he passed away have already received some media attention.
It does not look like I am going to be a research subject for this lab let alone benefit from what may be a revolutionary autism treatment though.
16 comments:
"non peer reviewed treatments such as chelation"
Wrong.
http://www.biomedcentral.com/1472-6904/9/16
http://www.biomedcentral.com/1472-6904/9/17
"hyperbaric oxygen"
False.
http://www.biomedcentral.com/1471-2431/9/21
"gluten free diets"
Incorrect:
http://www.ncbi.nlm.nih.gov/pubmed/20406576
"Rimland's heir apparent, Steve Edelson, has been trying to bring back research into secretin in spite of study after study refuting its effectiveness."
What about the study by Kern et al. - the only study that used the right kind of secretin while successfully identifying a subgroup for whom it would be beneficial that did show it to be effective? You wrote about it!
http://autismgadfly.blogspot.com/2008/08/is-secretin-effective-treatment-for.html
Kern only found secretin effective in a minority of patients, those with gastrointestinal impairments. Edelson wrote a very misleading post which the age of autism published which did not state this fact and made out like secretin was something that could be used for any person with autism regardless of GI problems. Every other study that has looked at secretin has found it is no more effective than saline, though I guess there was one study, forgot who did it that was just a conference presentation and not actually published in a peer reviewed journal by someone in arizona. I do seem to remember gfc diets were studied and found not to be effective.
I did not know about chelation and hyperbaric oxygen I will have to look at those references.
Cornel University found that chelation in the absence of acute lead poisoning caused brain damage in mice. If the mice had acute lead poisoning, there was no brain damage. These affects were a byproduct of the study, not what the study was meant to study which to me is more powerful evidence than if a researcher was out to prove a hypothesis.
The first link from Crosby on chelation was done by naturialpathic researches. They're not qualified to do such a study. I didn't bother to read the rest because I suspect the rest of the links could be as useless as this one was. Jake, give a link to real md's in a respected journal and that would be worth reading.
Kent. I read some of the study and James Adams is listed as on the faculty of natropathic medicine yet is a professor of materials science at arizona state university. Jane El Dahr is a professor of pediatrics at Tulane, yet the internal review board of the study is the university of naturopathic medicine rather than a more conventional review board at arizona state university or Tulane university which could have provided a review board. This in itself makes the study somewhat suspect. Also, the techniques used to assess functioning levels after chelation except for the ADOS are nonstandard tests just prepared by B. Rimland and Steven Edelson and the ADOS is not used to measure severity level, so this was another problem.
Jonathan, AoA did not publishe the post, just the first introductory paragraph of it saying that the efficacy on secretin has been misreported. We primarily linked to it. In the full post, which is on the ARI website, Dr. Edelson clearly focuses on those of us suffering from chronic diarrhea, for whom secretin was found to be clinically effective:
"ARI would very much like to fund controlled studies investigating the effects of porcine secretin on autistic individuals suffering from chronic diarrhea. If you are a researcher and/or know of a top-notch researcher who is interested in continuing this line of research, please write to us at Secretin @ Autism.com."
http://legacy.autism.com/treatable/drug/secretin_org.htm
"Cornel University found that chelation in the absence of acute lead poisoning caused brain damage in mice."
It also failed to supplement for essential nutrients lost - as is done in clinical treatment with chelation. Lack of supplementation is where these problems arise, so applying the results of that study to real-life chelation is worthless.
"Jake, give a link to real md's in a respected journal and that would be worth reading."
Co-authors Sanford Newmark, Jeffrey Bradstreet and Jane el-Dahr are all "real MDs."'
BMC Clinical Pharmacology's unofficial impact factor is 1.88, which is in the upper-middle range - and perfectly respectable especially for a specialist medical journal.
"yet the internal review board of the study is the university of naturopathic medicine rather than a more conventional review board at arizona state university or Tulane university which could have provided a review board. This in itself makes the study somewhat suspect."
-That changes nothing, all IRBs are charged with conforming to the same FDA rules and guidelines that apply. In this case, it's probably because of the IRB's affiliation with the institution of the lead researcher - James Adams - that the IRB for this study was chosen as it was.
"Also, the techniques used to assess functioning levels after chelation except for the ADOS are nonstandard tests just prepared by B. Rimland and Steven Edelson"
Wrong, only one is, and personally I would consider it a huge plus that a research diagnostic tool was created by ARI, especially Dr. Bernie Rimland, but that's just me...
"ADOS is not used to measure severity level, so this was another problem."
It is:
"This metric should be useful in comparing assessments across modules and time, and identifying trajectories of autism severity for clinical, genetic, and neurobiological research."
http://www.springerlink.com/content/f84020m52p74l1k7/
No, they published the post int its entirety. The copy of the post was originally on ARI's website was published on AoA. Edelson (and AoA by extension) cited Kern's study as something that could potentially help all autistic people. They did not mention that her findings were just a small percentage of the subjects of the study and all of these had gastrointestinal issues. Edelson misrepresented Kern's study and someone who had not read the study as I had would get the idea that the results could be applicable to someone not within the subset of Kern's findings.
Since AoA published the post and did not specify Edelson's factual errors or misrepresentation, they misrepresented the study also.
Jake, if a external rubbing lotion helped autism, it would be front page news.
"It also failed to supplement for essential nutrients lost - as is done in clinical treatment with chelation. " I'm not sure how you know this, but I'll assume you have some sort of proof to back up that accusation. However:
I'm sorry, but I won't subject my child to possible brain damage based on Jake Crosby's recommended protocol nor these feral "doctors" who are so far outside the mainstream and who make a point to remind their flock that they are persecuted for their beliefs.
By the way, autism continues to climb while AoA folks continue to cling to old belief structures.
Jonathan, again, I will quote to you Dr. Edelson's own conclusion in the article you cite, where he states:
"ARI would very much like to fund controlled studies investigating the effects of porcine secretin on autistic individuals suffering from chronic diarrhea. If you are a researcher and/or know of a top-notch researcher who is interested in continuing this line of research, please write to us at Secretin @ Autism.com."
http://legacy.autism.com/treatable/drug/secretin_org.htm
He is explicitly referring to people with gastrointestinal problems as a subgroup that can be benefited by secretin, NOT all autistic people.
And does this look like his article was posted in full?
http://www.ageofautism.com/2008/08/autism-research.html
Neither ARI nor AoA misrepresented Dr. Kern's study.
i can't tell jake. What you gave me is a link that goes to an article that was deleted by ARI apparently. I am not sure if it is the same thing that I read about two years ago or not. I can't really tell. I just remember what Edelson said, he did not say anything about a sub group. The quote you have given me about the chronic diarrhea is from something else and has nothing to do with the article that was on AoA where they misrepresented the facts. But I am not going to get into an endless argument.
The link AoA provided is goes to a deleted page and is apparently outdated, which is why I also provided the direct link to the same ARI article AoA linked to, and that works.
I just recently bumped to this blog post while I was researching about Arizona Retinal Specialists. I find what you wrote intriguing, so I researched about it, but it seems no recent article (2013) are speaking of this treatment anymore. So what has become of this device? Did it work?
@Kenneth, don't know the answer to that, you'll have to contact Dr. Danilov
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