Monday, March 4, 2013
Favorite ME/CFS Blogs
These are some of the blogs that I have found helpful on the topic of ME/CFS....
Saturday, February 2, 2013
Epigenetics, or Why the Question isn't "Environment OR Genetics"
The study of genetics has been all the rage recently in medical science. While it has led to some groundbreaking developments in the treatment of disease as well as even how we conceive of the concept of disease, it has been emphasized as the PRIMARY factor in so many cases in a way reminiscent of the saying "when holding a hammer, everything looks like a nail". Most people seem to understand the idea of a genetic cause for illness, or even a genetic role in disease, as meaning that we are helpless to do anything to treat or prevent the illness; that all we can do is throw up our hands and admit powerlessness. More than anything, autism is the example of this kind of thinking as well as the example that shows the fallacy of this viewpoint.
This is largely due to the fact that most people have an outdated and very incomplete idea of what the term "genetic" means. In high school biology class I was taught that our DNA hold the instructions for making us, encoded in a series of nucleotides (As, Ts, Gs, and Cs). Our "genetic code" is seen as a kind if instruction book that says "make this person this tall, with this color hair and eyes, and with this personality". It is seen by many as something that is "used" in the beginning, when we are growing as a fetus, and that results in unchangeable characteristics in us. This is actually quite far from the truth. Below is a link to a narrated slide show from the science show NOVA about epigenetics...another level or aspect of our genetics that is keenly responsive to our environment:
http://www.pbs.org/wgbh/nova/body/epigenetic-mice.html
This is a quote from the webpage with the link to the slideshow "In this audio slide show, Dr. Dana Dolinoy of Duke University explains the role that the epigenome, a sort of second genome, plays in regulating the expression of our genes. As Dolinoy notes, we can no longer say with certainty whether genetics or the environment have a greater impact on our health, because the two are inextricably linked through the epigenome." Let me emphasize that last part..."we can no longer say with certainty whether genetics or the environment have a greater impact on our health, because the two are inextricably linked through the epigenome." The question that dominates media coverage of autism- the question of "whether the cause is genetic OR environmental" is moot. It is both, both are inter-related. There is another famous quote (please post in the comments if you remember who said it, I don't) is "genetics is stored environment".
This is largely due to the fact that most people have an outdated and very incomplete idea of what the term "genetic" means. In high school biology class I was taught that our DNA hold the instructions for making us, encoded in a series of nucleotides (As, Ts, Gs, and Cs). Our "genetic code" is seen as a kind if instruction book that says "make this person this tall, with this color hair and eyes, and with this personality". It is seen by many as something that is "used" in the beginning, when we are growing as a fetus, and that results in unchangeable characteristics in us. This is actually quite far from the truth. Below is a link to a narrated slide show from the science show NOVA about epigenetics...another level or aspect of our genetics that is keenly responsive to our environment:
http://www.pbs.org/wgbh/nova/body/epigenetic-mice.html
This is a quote from the webpage with the link to the slideshow "In this audio slide show, Dr. Dana Dolinoy of Duke University explains the role that the epigenome, a sort of second genome, plays in regulating the expression of our genes. As Dolinoy notes, we can no longer say with certainty whether genetics or the environment have a greater impact on our health, because the two are inextricably linked through the epigenome." Let me emphasize that last part..."we can no longer say with certainty whether genetics or the environment have a greater impact on our health, because the two are inextricably linked through the epigenome." The question that dominates media coverage of autism- the question of "whether the cause is genetic OR environmental" is moot. It is both, both are inter-related. There is another famous quote (please post in the comments if you remember who said it, I don't) is "genetics is stored environment".
Thursday, December 6, 2012
GAPS Diet Success Stories
I love success stories. From the beginning they have given me hope and kept me going. They have inspired me. Most of all, as they say in Al Anon, "stick with the winners". Those who have accomplished what I wish to accomplish have much to teach me. When it comes to the GAPS diet (Gut and Psychology Syndrome) there are many success stories, some so amazing they'd be hard to believe if we hadn't also had such incredible results ourselves!
Many of these success stories I've heard directly from the family, or I've seen on various lists and yahoo groups, but here are a few that I've come across online:
Hannah's Story: 2 Years on the GAPS Diet Reverses Autism
http://www.thehealthyhomeeconomist.com/hannahs-story-2-years-on-gaps-diet-reverses-autism/
This is the story of a child with verbal apraxia beginning to speak on the GAPS diet:
http://tribalmamas.blogspot.com/2011/12/kais-story.html
This GAPS recovery story is from a woman who had serious mental health issues as well as physical issues (such as exhaustion, migraines, and chronic pain).
Scarlet's progress on the Paleo diet
A letter to Dr Natasha:
http://www.doctor-natasha.com/a-wonderful-story.php
I will be adding more, and feel free to share stories or suggest links in the comments section!
Many of these success stories I've heard directly from the family, or I've seen on various lists and yahoo groups, but here are a few that I've come across online:
Hannah's Story: 2 Years on the GAPS Diet Reverses Autism
http://www.thehealthyhomeeconomist.com/hannahs-story-2-years-on-gaps-diet-reverses-autism/
This is the story of a child with verbal apraxia beginning to speak on the GAPS diet:
http://tribalmamas.blogspot.com/2011/12/kais-story.html
This GAPS recovery story is from a woman who had serious mental health issues as well as physical issues (such as exhaustion, migraines, and chronic pain).
Scarlet's progress on the Paleo diet
A letter to Dr Natasha:
http://www.doctor-natasha.com/a-wonderful-story.php
I will be adding more, and feel free to share stories or suggest links in the comments section!
Tuesday, August 28, 2012
Critique of the NY Times Article "An Immune Disorder at the Root of Autism"
The article can be read here. This article has a lot of truth in it, and is being widely circulated right now (at least on Facebook) and I wanted to say a few things about it. The central role of immune dysregulation and inflammation in autism is something that is well supported by evidence. This is not really something "new", so much as there has been a lessening of the unwillingness to consider biological aspects of autism recently. Parents, doctors and medical researchers who have been studying the biology of autism and how to heal it have been aware of this for quite a while, and as the article states the health of the mother does seem to be very relevant for the child's risk of autism. Again, not news if you actually follow this. I am VERY excited to see this information in the NY Times and I think it is a big step forward. However, I would like to clarify some of the details in the article.
The author, while getting the gist right, clearly does not have the basic knowledge of the question of autism causality, the theories, and the evidence, to put this information in context and therefore to understand the implications. For example the author says that popular awareness is fixated on vaccines as the cause of autism. Well, anyone who has ever tried to speak about the reality of vaccine injury can attest that this is a fiercely denied idea by the majority of the public. The second major error in the introductory paragraph is that the author claims that people are "fixated" on vaccines DESPITE recent developments in the scientific understanding of autism, when in reality these developments are what support the view of autism as vaccine injury in many cases. This evidence explains the "how " and "why" of vaccine-induced autism. Almost no journalists follow this science though, so they are not aware of this.
This article makes another very common mistake that we see consistently in reporting on autism. The author says that the reason put forth here for the cause of autism accounts for maybe one-third of cases, and then begins to speak about the theory as if it is the ONLY cause. That is a very common mistake. By the authors admission, two-thirds of cases of autism do not fit this explanation, or at least the way the author is understanding it. Another common mistake is writing off as much as half of the increase in autism as better diagnosing or changes in diagnostic criteria. While this may of course be an issue, it is a red herring and the frequency with which it is brought up undermines the urgency of the autism epidemic and undermines the credibility of autism families. Ultimately it just keeps us focused on autism as a failure of parents, most often mothers, for either seeking a diagnosis for "free services" or out of ignorance that "kids are like that" or because expectations are too high about children's accomplishments.
Also, because the author does not understand why some people draw a connection between autism and vaccinations, he does not understand that everything he puts forth here- about the role of infections and immune dysregulation- implicates vaccines. Vaccines work (to the extent that they do) by simulating an infection and causing inflammation. They are designed to make the immune system "think" that there has been a full-blown infection (despite the small amount of antigen delivered) by sending the message (chemically) for the immune system to over-react to the antigen. This is the job of the adjuvant in the vaccine, and you can go to this post to see a presentation about the ways in which adjuvants have been shown to lead to auto-immunity, which is both defined by a dysregulated immune system and is widespread among people with autism and their families.
The biomedical approach, which is the approach to treating autism rooted in biology and physiological and chemical causality for the symptoms of autism, is not just about vaccines. In the model of biomed (and here), vaccines are one potential source of both toxicity and immune dysregulation, but they are not the only source for these things. This is also true of mercury toxicity. It is an issue relevant to vaccines, but vaccines have concerns beyond mercury and mercury can come from many sources other than vaccines. In my family's case, the mercury came from my amalgam fillings. This is one condition that fits this article well. My fillings poisoned me, causing immune dysregulation and an auto-immune disorder in me, and then as my kids grew inside my body they were affected by the mercury and were born already poisoned.
This article also rightly highlights the role of the microbial ecosystem that is part of our bodies. Proper balance in this ecosystem is essential for health and disruptions in this system can be disastrous. Dysbiosis (often in the gut, but not only there) is indeed one of the central biological features of autism. However, the "hygiene hypothesis" tends to greatly oversimplify what is going on here. It is not that some people lack microbes or were not exposed to enough of them, it's more a question that the transmission of our flora is being interrupted and changed so that children are not starting out with a robust enough system to function adequately. Our flora is transmitted to us during birth from our mothers as we pass through the birth canal, and is then shored up by breastfeeding. Birth interventions and lack of breastfeeding are so widespread that almost no one has not been affected, at least here in the US. If your child, yourself, or any of the women who came before you ever took antibiotics, birth control pills, steroid medications, had any birth interventions, or were given formula (even if they were also breastfed) then your child has altered flora.
What the "hygiene hypothesis" fails to account for is that not all microbes are interchangeable. People with autism have no dearth of microbes and parasites in their bodies. Parasite treatments are some of the most effective biomedical treatments around. Likewise, people with autism have a heavy load of pathogenic microbes that are the cause of many of the symptoms. This is the direct result of the immune dysregulation that this article discusses. The problem is WHICH ONES they have and the difficulty their immune systems have in maintaining order in this system. Interventions that restore balance in the flora by reducing pathogenic flora while re-introducing "friendly" flora have been very helpful in treating autism.
I have no idea why he makes the claim that scientists studying the link between autism and inflammation are unaware of the role of our microbial ecosystems, or of an uneven distribution of autism around the world. I've been following this research for years and this seems to be well established and understood. Again, all I can guess is that this author, like nearly all reporters who write about autism, does not have the depth of knowledge of the research to be able to make reliable observations about it. Also, within the autism community we are well aware of how autism is a disorder of modern living rather than something that is somehow missed in developing countries. Many families immigrate to the US, only to have one or more children regress into autism, and then are unable to explain what autism is to relatives back in the home country who have simply never seen anything like it. See my post on the high prevalence of autism among Somali immigrants in Minnesota for more about this.
Most of all, what the author is doing is missing the forest for the trees. Being born to a mother with asthma, or rheumatoid arthritis, or celiac disease, or metabolic syndrome, (or experiencing vaccine injury for that matter), are not "different paths" to autism. They are all variations on the same theme. In similar fashion, he states at the end that preventative medicine in the future will need to emulate the way humans lived in the past. I couldn't agree more, and this is again a central idea for many people working to heal autism. The modern diet bears almost no resemblance to the food that humans evolved eating. In particular, humans did not evolve eating grains, and the milk supply that we have now has been altered by a recent genetic mutation and is not comparable to milk that we would have had access to even not long ago in the past. Our environment has been saturated with chemicals that are known to be toxic and even to alter how our immune systems function. Lastly, conventional medicine in the developed world has resulted in dramatic changes to our microbial ecosystem and relies heavily on the use of pharmacological medications, most of which strain the body in the same ways that we see in autism. This article is a good first step but there is so much more to understand and do in regards to autism (and the other inflammatory disorders mentioned, which are indeed highly related) than giving everyone worms.
The author, while getting the gist right, clearly does not have the basic knowledge of the question of autism causality, the theories, and the evidence, to put this information in context and therefore to understand the implications. For example the author says that popular awareness is fixated on vaccines as the cause of autism. Well, anyone who has ever tried to speak about the reality of vaccine injury can attest that this is a fiercely denied idea by the majority of the public. The second major error in the introductory paragraph is that the author claims that people are "fixated" on vaccines DESPITE recent developments in the scientific understanding of autism, when in reality these developments are what support the view of autism as vaccine injury in many cases. This evidence explains the "how " and "why" of vaccine-induced autism. Almost no journalists follow this science though, so they are not aware of this.
This article makes another very common mistake that we see consistently in reporting on autism. The author says that the reason put forth here for the cause of autism accounts for maybe one-third of cases, and then begins to speak about the theory as if it is the ONLY cause. That is a very common mistake. By the authors admission, two-thirds of cases of autism do not fit this explanation, or at least the way the author is understanding it. Another common mistake is writing off as much as half of the increase in autism as better diagnosing or changes in diagnostic criteria. While this may of course be an issue, it is a red herring and the frequency with which it is brought up undermines the urgency of the autism epidemic and undermines the credibility of autism families. Ultimately it just keeps us focused on autism as a failure of parents, most often mothers, for either seeking a diagnosis for "free services" or out of ignorance that "kids are like that" or because expectations are too high about children's accomplishments.
Also, because the author does not understand why some people draw a connection between autism and vaccinations, he does not understand that everything he puts forth here- about the role of infections and immune dysregulation- implicates vaccines. Vaccines work (to the extent that they do) by simulating an infection and causing inflammation. They are designed to make the immune system "think" that there has been a full-blown infection (despite the small amount of antigen delivered) by sending the message (chemically) for the immune system to over-react to the antigen. This is the job of the adjuvant in the vaccine, and you can go to this post to see a presentation about the ways in which adjuvants have been shown to lead to auto-immunity, which is both defined by a dysregulated immune system and is widespread among people with autism and their families.
The biomedical approach, which is the approach to treating autism rooted in biology and physiological and chemical causality for the symptoms of autism, is not just about vaccines. In the model of biomed (and here), vaccines are one potential source of both toxicity and immune dysregulation, but they are not the only source for these things. This is also true of mercury toxicity. It is an issue relevant to vaccines, but vaccines have concerns beyond mercury and mercury can come from many sources other than vaccines. In my family's case, the mercury came from my amalgam fillings. This is one condition that fits this article well. My fillings poisoned me, causing immune dysregulation and an auto-immune disorder in me, and then as my kids grew inside my body they were affected by the mercury and were born already poisoned.
This article also rightly highlights the role of the microbial ecosystem that is part of our bodies. Proper balance in this ecosystem is essential for health and disruptions in this system can be disastrous. Dysbiosis (often in the gut, but not only there) is indeed one of the central biological features of autism. However, the "hygiene hypothesis" tends to greatly oversimplify what is going on here. It is not that some people lack microbes or were not exposed to enough of them, it's more a question that the transmission of our flora is being interrupted and changed so that children are not starting out with a robust enough system to function adequately. Our flora is transmitted to us during birth from our mothers as we pass through the birth canal, and is then shored up by breastfeeding. Birth interventions and lack of breastfeeding are so widespread that almost no one has not been affected, at least here in the US. If your child, yourself, or any of the women who came before you ever took antibiotics, birth control pills, steroid medications, had any birth interventions, or were given formula (even if they were also breastfed) then your child has altered flora.
What the "hygiene hypothesis" fails to account for is that not all microbes are interchangeable. People with autism have no dearth of microbes and parasites in their bodies. Parasite treatments are some of the most effective biomedical treatments around. Likewise, people with autism have a heavy load of pathogenic microbes that are the cause of many of the symptoms. This is the direct result of the immune dysregulation that this article discusses. The problem is WHICH ONES they have and the difficulty their immune systems have in maintaining order in this system. Interventions that restore balance in the flora by reducing pathogenic flora while re-introducing "friendly" flora have been very helpful in treating autism.
I have no idea why he makes the claim that scientists studying the link between autism and inflammation are unaware of the role of our microbial ecosystems, or of an uneven distribution of autism around the world. I've been following this research for years and this seems to be well established and understood. Again, all I can guess is that this author, like nearly all reporters who write about autism, does not have the depth of knowledge of the research to be able to make reliable observations about it. Also, within the autism community we are well aware of how autism is a disorder of modern living rather than something that is somehow missed in developing countries. Many families immigrate to the US, only to have one or more children regress into autism, and then are unable to explain what autism is to relatives back in the home country who have simply never seen anything like it. See my post on the high prevalence of autism among Somali immigrants in Minnesota for more about this.
Most of all, what the author is doing is missing the forest for the trees. Being born to a mother with asthma, or rheumatoid arthritis, or celiac disease, or metabolic syndrome, (or experiencing vaccine injury for that matter), are not "different paths" to autism. They are all variations on the same theme. In similar fashion, he states at the end that preventative medicine in the future will need to emulate the way humans lived in the past. I couldn't agree more, and this is again a central idea for many people working to heal autism. The modern diet bears almost no resemblance to the food that humans evolved eating. In particular, humans did not evolve eating grains, and the milk supply that we have now has been altered by a recent genetic mutation and is not comparable to milk that we would have had access to even not long ago in the past. Our environment has been saturated with chemicals that are known to be toxic and even to alter how our immune systems function. Lastly, conventional medicine in the developed world has resulted in dramatic changes to our microbial ecosystem and relies heavily on the use of pharmacological medications, most of which strain the body in the same ways that we see in autism. This article is a good first step but there is so much more to understand and do in regards to autism (and the other inflammatory disorders mentioned, which are indeed highly related) than giving everyone worms.
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