I always tell my students that when a scientific concept is finally understood the answer should be simple, elegant, and yes, even beautiful in its own way. That moment has NOW been reached in autism and the results published for the entire world to see.
I know there are FACTIONS in the autism community, as well as in the chronic fatigue syndrome (ME/CFS) community. But it is time to put those differences aside and unite to support this research. The FATE OF ALL OF US depends on joining together in common cause to end these epidemics.
By Kent Heckenlively, JD
At 6:33 a.m. on Friday, May 26, 2017 I received the following email from Dr. Robert Naviaux, Professor of Genetics, Biochemical Genetics and Metabolism, and co-director of The Mitochondrial and Metabolic Disease Center at the University of California, San Diego (UCSD) School of Medicine:
Hi Kent,
The results of the suramin autism treatment clinical trial were published today in Annals of Clinical and Translational Neurology. I’ve attached a pdf copy and a question and answer sheet that we prepared to help discuss some of the results.
I’m very grateful to you for helping us to get out the word. The moon rock and card with the Dali Lama that you sent me in 2013 were an inspiration. I still have them on my desk.
There will be more material posted on our website at: naviaux.ucsd.edu, later this day. This will include a poem written by a teenage boy with ASD who was in the study. UCSD will also be launching a website with extra content about the study later today. I will let you know when the link goes live.
Thank you so much for all your help.
Sincerely, Bob.
As I always do with my science students, I want to start with the problem.
Defining the problem is usually KEY to finding the answer. One of Naviaux’s most important contributions to understanding these conditions is his analysis of something called the CELL DANGER RESPONSE (CDR). I will let Dr. Naviaux speak about it in his own words.
CELL DANGER RESPONSE: The CDR is a natural and universal cellular response to any injury or stress. Its purpose is to help protect the cell and to jump-start the healing process. But sometimes the CDR gets stuck. This prevents completion of the natural healing cycle and can permanently alter the way the cell responds to the world. When this happens, cells behave as if they are still injured or in imminent danger, even though the original cause of the injury or threat has passed. On a molecular level, the defended set points for homeostasis are altered. This creates a pathological metabolic memory – an abnormal cellular response – that leads to chronic disease. When this happens during early childhood development, it causes autism and many other chronic childhood disorders. When it happens later in life, a persistent CDR can lead to immune exhaustion and it can lower the resistance to chronic infections. When it swings in the other direction, the immune system takes on a hair trigger and it leads to inflammatory and autoimmune disorders. In both cases, it increases the prevalence of chronic disease.
Tp put it in simple terms, when the cell thinks there is a danger in the body, it shuts down communication with other cells. This affects development, as well as proper functioning of all your biological systems. Got it? It’s pretty simple.
I bet you can even figure out the answer. Find a medication that tells the cells that it’s safe to communicate.
The same thought occurred to Dr. Naviaux. And he found a medication that does exactly that, suramin.
SURAMIN: Suramin . . . sends the cellular equivalent of the “all clear” or safety signal. In this capacity, suramin and other antipurinergic drugs, are a kind of molecular armistice therapy (MAT), signaling the ceullar war is over, the danger has passed, and cells can return to “peacetime” jobs like neurodevelopment, growth and healing.
Some kind of chemical, toxin, or infection is LIKELY to be the cause of the cell danger response being activated. But we do not even need to fight over WHAT might be the trigger, if we can fix it. Let that be a conversation for another day.
Now that I’ve piqued your curiosity you probably want to know how it worked. Again, I use Dr. Naviaux’s own words.
THE CLINICAL EFFECTS: Suramin works by removing negative signals that block or slow natural child development. It is more like removing the brakes then pressing the accelerator. Accelerated catch-up development occurs in the first few weeks when the brakes are removed because the child is ready to develop, but was otherwise blocked by their illness. This reminds me of giving a child who has an inborn error of metabolism a vitamin or nutrient that they can’t make, or taking away a toxin, the children begin to blossom. Children with severe oral motor dyspraxia in the SAT-1 study started humming and singing nonsense tunes around the house in the first few days after suramin. Like a baby learning to talk for the first time, they began making sounds with their mouth, lips, and tongue that they had never made before. We had four non-verbal children in the study, two 6 year olds and the two 14 year olds. The 6 and 14 year old who received suramin said their first sentence of their lives about 1 week after the single suramin infusion. This did not happen in any of the children given placebo.
For those of us who have non-verbal children, it is difficult to fully describe the excitement I feel when I read this account.
I have NEVER had a conversation with my 19 year old daughter.
But I KNOW there is a wonderful person inside who has so much to tell me.
I will perhaps break a confidence by telling you I have talked privately in the past to Dr. Naviaux about what he thinks might happen in the future.
IF suramin works out as a treatment protocol, he thinks it might end up being something that is infused every 6-8 weeks until the results are sustained and the child has caught up to their peers in development. For younger children, that might mean a year of infusions. For those older, it might mean two years. We genuinely do not know. It was a small study, limited to five boys because of financial constraints, so this is something which needs to be studied in great detail.
But these are such exciting possibilities for rescuing our lost children.
I do not know of a single intervention which has filled me with such hope. I know that some have expressed concerns about safety issues with suramin, but I believe those were limited to HIGH-DOSES of suramin used in experimental CANCER treatments.
Again, I will not use my own words, but those of Dr. Naviaux.
SIDE-EFFECTS OF SURAMIN: We did not find any serious side effects or safety concerns in this first study of a single, low-dose of suramin. The low-dose that we used produced blood levels of 5-15 uM and has never been tested for any disease in the nearly 100 years that suramin has been used in medicine. All previous uses of suramin have been at medium doses for sleeping sickness that produced blood levels of 50-100 uM for 1-3 months, or high doses for cancer chemotherapy that produced blood levels of 150-270 uM for 3-6 months.
Just so you understand, suramin was used SAFELY for more than 75 years when it produced blood levels of 50-100 uM. The levels we would likely need in autism are from 5-15% of that level. I understand that there is still so much we do not know, but the POTENTIAL OF THESE FINDINGS IS ENORMOUS.
Let me be the first to write that this is the kind of discovery of which NOBEL PRIZES are made, and history is made.
I am but a single, humble writer and the parent of a daughter with severe autism. I am not a scientist. I am not a political leader. I am not a billionaire with vast sums of money at my disposal. But what I share with all of you is a common humanity.
Whether you have been a friend or foe of mine, I know that every human being responds with sympathy to the suffering of children and their families. Alone, I am but a single voice. Alone, scientists like Dr. Naviaux find themselves lost in a sea of competing voices.
I am asking everybody, friend and foe, to raise your voice and DO WHATEVER YOU CAN to support this research. The past is but prologue to the future.
You can read the actual study by clicking here…
You can read the Question and Answer page by clicking here…
Just below is an excerpt from the Q & A:
Q1: What is the main point of your paper?
A1: The first thing you need to know about our paper is that it is not about suramin. Our research is aimed at finding a unifying cause for autism and an explanation for why it, and nearly 20 other chronic diseases have been increasing over the past 30 years.
Our research is leading us to the conclusion that autism is caused by a treatable metabolic syndrome in many children. The exact percentage is currently unknown. Metabolism is the language the brain, gut, and immune system use to communicate. These three systems are linked. You can’t change one without changing the other. Each of these systems works differently in autism, but more specifically, the communication between these systems is changed in autism. Such changes occur both during and after the pregnancy. Suramin can only improve metabolic functions once a child is treated. While antipurinergic therapy (APT) with suramin may not directly change some aspects of abnormal brain development that were present before treatment, APT may improve the function of many brain systems, even if brain structure does not change. And in children and teens whose brain is still developing, the course or trajectory of brain development might also be changed by treatment. The metabolic syndrome that underlies the dysfunction is caused by the abnormal persistence of the cell danger response (CDR). Aspects of the CDR are also known to scientists as the “integrated stress response”. Both genes and environment contribute to the CDR, so even genetic causes of autism lower the threshold for CDR activation and produce the metabolic syndrome. Ultimately, if the symptoms of autism are caused by a metabolic syndrome, the
hopeful message is that the symptoms can be treated, even though we can’t change the genes.
There seventeen (17) Questions and Answers.
Help us recover our lost children.
By Kent Heckenlively, JD
Kent Heckenlively is the author of INOCULATED: How Science Lost its Soul in Autism, available on Amazon and at Barnes&Noble.com
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