Quackery Exposed: TACA supported Low-dose suramin in autism spectrum disorder: a small, phase I/II, randomized clinical trial

On March 11, I was messaged about participating and promoting a study to "improve autism."I got defensive and told her she was ableist. Here is the original message:


Hi, I have a favor to ask. I’m trying to help a friend that is involved with getting participants for a study trying to predict autism, Dr Robert Naviaux, the Dr that is researching Suramin for the treatment of ADS needs 400 children, 200 with and 200 without autism before they can even start. If they don’t have all participants enrolled by June 1, 2020, they will have to start the whole application process over.

This study may help PREVENT children from EVER developing ASD

Genetic vulnerability + certain environmental exposures = ASD


Can you please help by sharing the information below with your group?


#################

YOUR HELP IS NEEDED!

Dr Robert Naviaux, the Dr that is researching Suramin for the treatment of ADS, is getting ready to start a very important study and needs our help. 

If you have a child/children age 3-10 who was born in California, we hope you will participate!

There is no blood draw or in-person visit involved. Ten minutes of your time, a signed consent form and a completed questionnaire, that's all it takes to contribute to this exciting research. Blood samples will be used from the Newborn Screen


 test, that was done by the State of California, shortly after your child was born.

To say thank you, $40 Amazon gift cards will be given to participants.

https://ucsdnews.ucsd.edu/feature/predicting-autism-risk-may-begin-with-a-drop-of-blood?fbclid=IwAR2vbQhBjq2fnHnuBOOYGkkh-BgZZBqdGdtIOjBAm3rwtSABl1WR3rAPhr0
Predicting Autism Risk May Begin with a Drop of Blood
Within days of birth, a few drops of blood are collected from every newborn in California—and across the United States—which are then stored on filter paper and screened for dozens of genetic and congenital disorders, such as phenylketonuria (PKU), an inherited metabolic disorder that can result...
ucsdnews.ucsd.edu
MAR 11, 2020, 9:09 PM

Amanda



Why would i help you commit eugenics?



You can now call each other and see information like Active Status and when you've read messages.
Lynn Riggio
Lynn



Amanda, since sending requests out, I understand that some people may take offense to what I’m asking.

I understand how you would view this like that, but that’s not what this is all about. Besides looking at the mitochondrial dysfunction, GI issues, environmental effects of genetically sensitive people (like myself)and the similarities between autism and a terrible illness ME/CFS, which I unfortunately have. Later this year Dr Naviaux will be investigating suramin and how the drug helps autistic children and patients that have lost their lives to ME/CFS.

I have close family members, on different levels of the spectrum,



 I do understand that there are co-occurring medical conditions. I have watched my sister care for her nonverbal son for 30 years. If Dr Naviaux could discover why the mitochondrial problems exist, or how to help the nonverbal autistic community communicate with those that love them, if there was something that would improve his life, I would push for it.

I apologize if my request has upset you and I thank you for taking the time to share your thoughts with me.
Amanda



I’m autistic and t4 should be a thing of the past. Isn’t my existence valid?



Do you even know what t4 is?



Your eugenics leads to this


(photo of intestinal lining from bleach enemas)



Lynn Riggio
Lynn



Of course your existence is important! As are the existence of my three nephews. I’m not very familiar with the different types of autism, I’ve spent the last 15 years of my life mostly bed bound, with an illness that has many of the same illnesses that plague the autism community. If I had to guess, I would say that it’s related to thyroid problems.


Amanda

https://www.nbcnews.com/news/amp/ncna1007871
Parents are poisoning their children with bleach to ‘cure’ autism. These moms are trying to stop it.
Private Facebook groups urge parents to poison autistic kids with chlorine dioxide to “cure” them. These moms are going undercover to fight back.
nbcnews.com



Don’t message autistic people with this ableist crap
Lynn Riggio
Lynn


Some people don’t have the sense that god gave them, as they used to say. I’m sorry I upset you. Have a wonderful evening
Seen by Lynn Riggio at March 11, 2020 at 9:30 PM




Hi, I have a favor to ask. I’m trying to help a friend that is involved with getting participants for a study trying to predict autism, Dr Robert Naviaux, the Dr that is researching Suramin for the treatment of ADS needs 400 children, 200 with and 200 without autism before they can even start. If they don’t have all participants enrolled by June 1, 2020, they will have to start the whole application process over. This study may help PREVENT children from EVER developing ASD Genetic vulnerability + certain environmental exposures = ASD Can you please help by sharing the information below with your group? ################# YOUR HELP IS NEEDED! Dr Robert Naviaux, the Dr that is researching Suramin for the treatment of ADS, is getting ready to start a very important study and needs our help. If you have a child/children age 3-10 who was born in California, we hope you will participate! There is no blood draw or in-person visit involved. Ten minutes of your time, a signed consent form and a completed questionnaire, that's all it takes to contribute to this exciting research. Blood samples will be used from the Newborn Screen test, that was done by the State of California, shortly after your child was born. To say thank you, $40 Amazon gift cards will be given to participants.
https://ucsdnews.ucsd.edu/feature/predicting-autism-risk-may-begin-with-a-drop-of-blood?fbclid=IwAR2vbQhBjq2fnHnuBOOYGkkh-BgZZBqdGdtIOjBAm3rwtSABl1WR3rAPhr0
Predicting Autism Risk May Begin with a Drop of Blood
ucsdnews.ucsd.edu
MAR 11, 9:09 PM
Why would i help you commit eugenics?
You can now call each other and see information like Active Status and when you've read messages.
Amanda, since sending requests out, I understand that some people may take offense to what I’m asking. I understand how you would view this like that, but that’s not what this is all about. Besides looking at the mitochondrial dysfunction, GI issues, environmental effects of genetically sensitive people (like myself)and the similarities between autism and a terrible illness ME/CFS, which I unfortunately have. Later this year Dr Naviaux will be investigating suramin and how the drug helps autistic children and patients that have lost their lives to ME/CFS. I have close family members, on different levels of the spectrum, I do understand that there are co-occurring medical conditions. I have watched my sister care for her nonverbal son for 30 years. If Dr Naviaux could discover why the mitochondrial problems exist, or how to help the nonverbal autistic community communicate with those that love them, if there was something that would improve his life, I would push for it. I apologize if my request has upset you and I thank you for taking the time to share your thoughts with me.
I’m autistic and t4 should be a thing of the past. Isn’t my existence valid?
Do you even know what t4 is?
Your eugenics leads to this
Of course your existence is important! As are the existence of my three nephews. I’m not very familiar with the different types of autism, I’ve spent the last 15 years of my life mostly bed bound, with an illness that has many of the same illnesses that plague the autism community. If I had to guess, I would say that it’s related to thyroid problems.
Parents are poisoning their children with bleach to ‘cure’ autism. These moms are trying to stop it.
nbcnews.com
Don’t message autistic people with this ableist crap
Some people don’t have the sense that god gave them, as they used to say. I’m sorry I upset you. Have a wonderful evening
Two days ago I was asked to look over this study. Lindsay Mohler (the creative autistic) was also messaged about participating in this study. She reminded me of this and I found it in my messages. 

This study is supported and pushed by TACA. TACA's founder, Lisa Ackerman states," In 2020, one of the most promising autism treatment research projects, Suramin, is heading in the next phases." This is the same organization that was pushing the chelation study which was canceled due to safety concerns.

'Dr. Naviaux reported in his TACA talk on October 20, 2019, “The UC San Diego Naviaux lab team had a great meeting with the FDA this summer. They are very supportive of the Suramin trials. The company making the new Suramin now thinks they will be able to launch the SAT2 trial in Spring 2021. Preparing for the SAT2 is a many-step process that is keeping dozens of dedicated people busy. We are making steady progress. Once we are within 6 months of an actual start date, I will be able to give a more precise estimate of when we will actually begin enrolling patients.”'

A homeopathic knockoff of this medication is being sold on Natural Regenesis. On this same site, a toxic treatment called GcMaf is also being sold. 

The doctor is Robert Naviaux. He is a professor of medicine, pediatrics and pathology at the University of California at San Diego. He is also the co-director of the mitochondrial and metabolic disease center.  His study was to prove the effectiveness of suramin for autism. Suramin is a 100 year old medication used for River Blindness and His theory was that the drug suramin would trigger a cell danger hypothesis. 

In this study, Naviaux claims that 1-5% of the population is autistic. According to the CDC, the percentage of the American population is 15%. This is inaccurate. This is because there are many autistic people in the United States that are undiagnosed. 

The study also states "not every child is exposed to the same environmental factors." This could possibly could refer to vaccines. The study does not specifically state what "symptoms" they are looking to "improve." The aims of the study are not specific enough.  

His inclusion criteria were the subjects must be male, meet the DSM V criteria, ages 4-17, living in San Diego, and have a confirmed autism diagnosis. The sample size were 10 boys. Exclusion criteria were children who weighted less than the 5th percentile for age, took prescription medication, and had laboratory evidence of liver, kidney, heart or adrenal abnormalities. Parents were asked not to change therapy during the clinical trial. All participants were matched in IQ, "functioning level," and age.

This study is flawed. This study only includes 10 children. Half the participants were given the drug and the other half were given a plecebo. Girls were excluded. The study does not state what the "core symptoms" they are trying to "improve." They only state the improve the "core symptoms" but they do not specify which "symptoms" they are talking about. 

This study is also open access. Most studies that are properly executed are not open access. In order to access them, there usually is a subscription by the education institution required. 

The cell danger hypothesis has not been proven.  The cell danger hypothesis is thought to be the metabolic response that protects cells and hosts from harm. It is triggered by encounters with chemical, physical or biological threats that exceed the cellular capacity for homeostasis. He states that this response will alter neurodevelopment states. This is because he hypothesizes there is a conserved perturbation or danger in autistic children. 

Based on this theory,  this medication is thought to be activating this theorized response to change the synapse between the autistics' neurons.  This mirrors the theory that Namechek had with overdosing on different fatty acids and fish oils along with a restrictive diet. 

The parent in the accompanying video said when a parent is desperate to change their child they will try random medications to see if they work. There is a problem with this. There is a laundry list of side effects:

  1. Cloudy urine
  2. crawling or tingling sensation of the skin
  3. diarrhea
  4. faintness, especially after missing meals
  5. headache 
  6. increased skin color
  7. irritability
  8. itching
  9. joint pain
  10. loss of appetite
  11. nausea
  12. numbness or weakness in arms, hands, legs, or feet
  13. skin rash
  14. stinging sensation on skin
  15. swelling on skin
  16. tenderness of the palms and the soles
  17. tire easily
  18. vomiting

Less common

  1. Changes in or loss of vision
  2. extreme tiredness or weakness
  3. increased sensitivity of eyes to light
  4. painful tender glands in the neck, armpits, or groin
  5. swelling around eyes
  6. ulcers or sores in mouth
  7. watery eyes

Rare

  1. Cold and clammy skin
  2. convulsions
  3. decreased blood pressure
  4. difficulty in breathing
  5. fever and sore throat
  6. fever with or without chills
  7. increased heartbeat
  8. loss of consciousness
  9. pale skin
  10. pinpoint red spots on skin
  11. red, thickened, or scaly skin
  12. swelling and/or tenderness in upper abdominal or stomach area
  13. swollen and/or painful glands
  14. unusual bleeding or bruising
  15. unusual tiredness or weakness
  16. yellow eyes or skin

More common

  1. Abdominal pain
  2. fever
  3. general feeling of discomfort
  4. metallic taste

The study professionals did record the different adverse events:




With these adverse reactions, the study professionals state there were no safety concerns. They clearly recorded the adverse reactions to the drug.

With reading all this, NO ONE should be giving this drug with the variety of adverse effects by this medication.

"Special note from the researchers:Suramin is not approved for the treatment of autism. Like many intravenous drugs, when administered improperly by untrained personnel, at the wrong dose and schedule, without careful measurement of drug levels and monitoring for toxicity, suramin can cause harm. Careful clinical trials will be needed over several years at several sites to learn how to use low-dose suramin safely in autism, and to identify drug-drug interactions and rare side effects that cannot currently be predicted. We strongly caution against the unauthorized use of suramin." 

Sources:

Cell danger response hypothesis - MEpediawww.me-pedia.org › wiki › Cell_danger_response_hyp...

https://health.ucsd.edu/news/topics/suramin-autism/pages/default.aspx

https://onlinelibrary.wiley.com/doi/pdf/10.1002/acn3.424
https://tacanowblog.com/2019/11/04/suramin-research-status/#more-4911


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