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Dr Naviaux's Suramin & Autism Trial - publication and interview

Discussion in 'Other Health News and Research' started by natasa778, May 26, 2017.

  1. natasa778

    natasa778 Senior Member

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    Results from suramin autism trial are now available and they are very encouraging. Detailed information is available on N of One website including this interview which contains extensive information not available in the actual paper.

    http://www.nofone.org/dr-naviaux-q-and-a-suramin

    I'll post a link to the paper as soon as it is up online.
     
    Last edited: May 26, 2017
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  2. A.B.

    A.B. Senior Member

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    Very interesting.
     
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  3. natasa778

    natasa778 Senior Member

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  4. Demepivo

    Demepivo Dolores Abernathy

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    From the Nofone article. He took out $500 000 of debt in his name to fund the study.

     
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  5. Demepivo

    Demepivo Dolores Abernathy

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  6. Sidereal

    Sidereal Senior Member

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    There is a very large industry of mental health and education professionals who stand to lose everything if the current paradigm (autism is an incurable neurodevelopmental disorder) were overthrown and replaced by the metabolic hypothesis. I'm not surprised to hear that he has had to go into $500k debt and that no conventional funding source such as the NIH wanted to touch this work. I expect him to receive a lot of pushback for this sort of work, along the lines of the slanderous attacks he's been getting for his CFS work. Given that his hypothesis makes sense and that he has already demonstrated reversibility of ASD symptoms in several animal models of ASD, it would make perfect sense for the government to fund this sort of work. If this were cancer, everyone would be jumping on it in a hot minute, but since it's something "behavioural" like autism or CFS, the invisible forces of the medical establishment work to stifle progress.
     
  7. A.B.

    A.B. Senior Member

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    Patients need to get organized and pressure politicians to fund this research, as well as financing research via donations.

    Medical research needs to be about the patient, not about the profits and careers of others.
     
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  8. shannah

    shannah Senior Member

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  9. Demepivo

    Demepivo Dolores Abernathy

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  10. Demepivo

    Demepivo Dolores Abernathy

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  11. Demepivo

    Demepivo Dolores Abernathy

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  12. BruceInOz

    BruceInOz Senior Member

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    In the interview linked to in the original post, Naviaux said:
    I would have thought this suggests there should be a higher incidence of me/cfs in people with autism than the general population. Are there any studies that suggest this?
     
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  13. natasa778

    natasa778 Senior Member

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    How would you go on about diagnosing ME in someone who is non-verbal/does not communicate?

    How would you express/explain your own symptoms if you had no words and couldn't write etc? What would your behaviour be like? And especially if you developed those symptoms and feelings when you were too young to know of any other, ie 'normal' state of being? Hypothetical question but I am genuinely interested :)
     
    Last edited: May 26, 2017
  14. BruceInOz

    BruceInOz Senior Member

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    Autism covers a large spectrum. Not all are non verbal. My interest is I have an adult son with Aspergers who has developed POTS recently (diagnosed via tilt table). With me having ME for 23 years, I find the connection interesting.
     
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  15. natasa778

    natasa778 Senior Member

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    That is correct, although judging from what is known on many other health conditions, their incidence as well as severity correlates with severity of autism. So in theory one could expect to find more severe symptoms of CFS in more severely affected individuals, who in turn would only be able to express symptoms as behaviours...
     
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  16. BruceInOz

    BruceInOz Senior Member

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    In the n=1 sample of my son, the gradual onset of POTS is clear in hindsight (although it was not so clear at the time).
     
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  17. BruceInOz

    BruceInOz Senior Member

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    A study of the incidence of me/cfs in a group with high functioning autism would be an interesting check of Naviaux's theory though.
     
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  18. A.B.

    A.B. Senior Member

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    One problem with the study is that the drug caused a rash in all recipients that compromised the blinding for parents.

     
    Last edited: May 26, 2017
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  19. Demepivo

    Demepivo Dolores Abernathy

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  20. natasa778

    natasa778 Senior Member

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    Parents talk about how their children improved with Suramin.

    subject #1

    subject #2


    subject #3

    subject #4

    subject #5


    Lots more detail here http://www.sandiegouniontribune.com/business/biotech/sd-me-autism-parents-20170525-story.html

    At least two report 'disappearance of nasal quality' in child's voice.
     
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