And probably Chronic Fatigue Syndrome ME/CFS as well…
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.
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:
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.
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.