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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. Demepivo

    Demepivo Dolores Abernathy

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  2. natasa778

    natasa778 Senior Member

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    It is an absolutely mega MASSIVE deal. The equivalent of an ME patient who has been bed-bound for 12 years getting up and going for a light jog around the block.

    Not a kind of thing that could ever happen through someone else's wishful thinking.
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    From one parent. I'm sure many can relate to trying every new treatment for a decade to have find nothing that works
     
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  4. BurnA

    BurnA Senior Member

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    For me an ME patient who has been bed bound who gets up and goes for a jog, is recovered in my book.

    For a kid to go from saying "I did it" to I'm done with dinner" is progress, but I would have been a lot more convinced if the mother gave other examples of sentences.

    I hope it works out.
     
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  5. natasa778

    natasa778 Senior Member

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    That imaginary bed-bound ME patient did go for a jog that one day, but the effects were not long-lasting. These parents' reports remind me of rituximab reports, where most responders slide back to baseline after a while. Does that mean that rituximab effects were not real?

    Fluge&Mella started their research on the basis of one patient's subjective report of improvements. Imagine for a sec ... if they'd employed that same dismissive philosophy of "subjective-reports-of-improvement-don't-mean-a-thing", and improvements seen in "only" 5 patients, no matter how massive they were, don't mean others would benefit = rituximab not worth pursuing as a treatment for ME.


    Many people, including many parents, are absolutely terrified of a paradigm change in autism, for various deep and very personal reasons.

    (Think how hard ME-paradigm change is and multiply the resistance factor by 1,000)
     
    Last edited: May 28, 2017
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  6. hixxy

    hixxy Senior Member

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    Is this really a problem? If suramin continues to work in a larger trial I think this just tells us even more about the disorder ie that the pathology that is perpetuating the "cell danger response" is not in the brain and that the effects on the brain are "collateral damage". One explanation could be the gut-brain connection.
     
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  7. barbc56

    barbc56 Senior Member

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    @hixxy

    If Autism is neurological, it absolutely makes a difference. I believe most of the medical world believe it is. But the devil may be in the details.

    While this is interesting, it's important to keep in mind that when studies with small numbers the odds Increase that larger studies don't necessarily show the same results.

    Intriguing, though I would take the parent reports with a grain of salt. It's understandable that hope might change a parent's perception as there's a possibility they become hypervigilant about any sign of change.

    But time will tell.
     
    arewenearlythereyet likes this.
  8. Kina

    Kina

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    It's not just 'plain old pessimism'. I have quite a few reasons why I said what I did. Possibly too many to lay out here and maybe not even coherently due my own brain limitations right now.

    I have been trying all day to post my reasons. I can't do it.

    In a nutshell:

    I have a problem with his previous mouse study which was focused on both autism and schizophrenia.

    Looking into APT (Anti-Purinergic Therapy) and Naviaux's Cell Danger Response theory it is really hard to find anything written by anyone other than Naviaux. I could be wrong about that, I just seem to be finding theory rather than actual research to demonstrate its existence and relationship to neurological dysfunction.

    I have a problem that his theory/research is at odds with a lot of the current research. You can't really apply his theory or research to a lot of the research that exists presently. I am fully aware that he says you can. I don't agree.

    I am prepared to say that if Suramin does prove to be effective, it would only work in the subset of people with autism who have a particular defect in the purinergic pathway. Research has clearly indicated multiple causes. I wonder how Naviaux was able to choose children with this particular defect. I do not believe that all children with autism have this defect as the research indicates otherwise.

    I have a problem with his mouse-model of autism. Fear of strangers, poor coordination, fear of novel situations is not limited to autism. And where on earth does Schizophrenia come into the research as it is more of a problem related to dopamine.

    As for the present study, I have a problem that N=5 is being heralded as some how meaningful or significant especially when the results were confounded by the rash that appeared in the children given Suramin.

    I have a problem that children were given a dose of a toxic drug based on a mouse study.

    Even Naviaux said that Suramin can't be used for more than a few months without a risk of toxicity in humans. So why expose children to it all -- why not work on developing a new similar drug with less side-effects without exposing children to a toxic drug. That would be worth a ton but then again not if it doesn't work.

    If what Kent Heckenlively said is true that Naviaux told him that if suramin works out autism will end, well all I can say is that is a huge red flag.

    I have a problem with the fact that the medication does not distribute well into CSF, doesn't cross the blood brain barrier, that it is not extensively metabolized, and about 80 percent is eliminated by the kidneys. How can a medication have such dramatic neurological effects if it can't even get to the parts of the brain it is supposed to have an effect and only a small amount gets metabolized at all.

    As J. Edwards says the details dating back to the mouse study are not lining up well. Naviaux seems to have a lot of answers to some of the questions about the study and they don't seem to be backed up with any kind of scientific proof.

    More about Suramin at the following link:

    http://www.sciencedirect.com/topics/page/Suramin

    So excuse my pessimism, if that's what you want to call it. It doesn't add up for me from what I know about autism and my own experiences with my daughter and other autistic children. I don't think much will come of this.

    The way that his research has been presented by the press is giving false hope. And would think that some pessimism is justified. Let's see what comes next -- further support, more positive results and more supportive research re: his CDr theory ... . There are many questions to be answered. To prematurely state this is the answer -- well how many times do studies like this not go any further, or can't be replicated ... .

    All of this is my opinion, if I am totally wrong, I will gladly discuss when there is more supportive research.
     
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  9. Kati

    Kati Patient in training

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    It would be nice if Dr Naviaux could join us and talk about his work here.
     
  10. alex3619

    alex3619 Senior Member

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    Most small pilot studies go nowhere. A pilot study is to demonstrate potential, not prove anything. What it does do is show there may be something there, and given the size of the potential payoff its worth pursuing.

    Now when an effect size is really large, and its hard to judge how big the effects were in subjective reports, then even a pilot study can be very valuable.

    The issue is not whether or not this is proven to be a good treatment. It has not. The issue is to whether such a treatment could be allowed to not progress to more in depth studies. Like I said with XMRV, there is enough evidence to warrant further investigation. Given the cost of even a small study this might be an issue though. Where is the funding coming from?

    When we have a larger study done, and if they focus on key metabolites (to decrease costs) and objective outcome measures (what is it that can be measured I wonder?) then this could wind up something very interesting.

    Let us also not forget that this drug is really really old. There might be big issues to getting it approved however, due to no pharma backing and the lack of modern safety studies. Rituximab or even cyclophoshamide might be approved much faster. In its favour though, this being an old drug means there is a century worth of information on it. It might be that it can be fast tracked provided there is will in government, FDA etc.

    PS If this drug can be shown to work then perhaps other drugs with similar targets and that are officially approved already might also be tested.
     
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  11. BruceInOz

    BruceInOz Senior Member

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    This certainly bothered me when I read Naviaux's metabolomics paper when it first came out a while ago. Not just that I could find no references to the Cell Danger Response other than those authored by Naviaux, but that he spoke about it as if it were well established.

    Of course, science needs maverick thinkers and Naviaux should be encouraged and supported to take his ideas as far as he can. Science history is full of out-of-the-box thinking that went against the established ideas and were proven correct (e.g., Barry Marshal, Helicobacter pylori and stomach ulcers). But for every maverick that was proven correct, there were many more who were proven wrong and their ideas are now forgotten. We don't yet know which side of history Naviaux's Cell Danger Response will be on and it will probably be some time before we do.

    In the meantime, I see a little of @Kina 's pessimism as protective. Pinning all your hopes on another theory that doesn't pan out can become emotionally draining. I'm not dissing those who are optimistic about where this may lead; just pointing out there is nothing wrong with a dose of realism and even pessimism also.
     
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  12. Michael_venice

    Michael_venice

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    I'm not sure if it will be an answer—I read the comment about rituximab, and I've never been able to figure out what percentage of people stayed recovered, what 'recovery' actually was, and even when pointed in the right directions, still can't get a fix on that. Yet, I know clinics are suggesting people try it.

    That said, Naviaux seems to be taken quite seriously by many of the quite-serious researchers into ME/CFS. If his ideas and claims can be easily batted aside (as it seems to be many times in this thread), I'd think that wouldn't be the case.
     
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  13. Solstice

    Solstice Senior Member

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    Well, case in point for me. My excitedness is now dampened but that isn't a bad thing. What I, and I guess we, want more than anything is good science and that can't go without challenging everything imo. As that, input like from @Kina and @Jonathan Edwards is invaluable to me, aswell as several other good comments. I'd hate for us to go down the path the BPS lot went, where science can't be critiqued.
     
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  14. Countrygirl

    Countrygirl Senior Member

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    http://www.economist.com/news/scien...-initial-trial-suramins-effects-were-dramatic
     
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  15. alex3619

    alex3619 Senior Member

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    Pretty well. Challenges mean the researchers have to use tight research methods, and get to rethink the weak points in what they have done. Challenges can dampen enthusiasm for the hypothesis, kill the hypothesis in its current form, or lead to even better science.

    What can happen is a clash between advocacy and science. The roles are not the same. We need to advocate for our researchers, though also expect good science. From a scientific perspective its criticism that makes for good science. The two roles are not fully compatible.

    My hope is that a follow up study will take these criticisms and provisos etc. into account, and produce the kind of research that will quickly advance into even more studies or finally put it to rest due to insufficient evidence. Either result is a good one, though I would prefer to see success as so many have been waiting for so long for treatments.
     
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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Until they know with 100% what causes autism, then any cause is possible. There are many researchers that think autism has links with some type of infection, not just a RV but even just a normal virus. Retroviral drugs do have effects against other infections not just retroviruses eg some arvs are used for hepatitis. Im just keeping all options open until theres a definitive answer.
     
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  17. Countrygirl

    Countrygirl Senior Member

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    http://cfspatientadvocate.blogspot.co.uk/2017/05/robert-naviaux-autism-and-mecfs.html

     
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  18. alex3619

    alex3619 Senior Member

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    ... or as I put it, when you don't know where something is, you look everywhere.

    PS It does not even have to be an infectious or active retrovirus, the issue here might well be how we are responding, not what a virus is doing. Currently we have issues finding any known pathogen as a primary cause. We can however find viruses, but not acute viral infection. With retroviruses the key thing for most is the presence of reverse transcriptase. I am still amazed there has not been a modern study looking for this, even to just rule it out. Past studies have found it, but not reliably. Similarly there are subgroups with specific pathogenic infection, and then there is HHV6 which does not need reverse transcriptase to rewrite our genetic code.
     
    Last edited: May 29, 2017
  19. RogerBlack

    RogerBlack Senior Member

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    Because developing a new drug would take a large slice of a hundred million dollars, and can't be done without a decent idea if suramin actually does anything, and what it does.

    You might try to design a drug without the 'toxic' bits - and spend a long time working to prove its safe, at which time you find that it's the response to the toxic effects which is actually doing it, and you need to work on selectively applying the toxic effects to provoke an immune response in some tissues.
    (mechanism entirely exemplary - I have no reason to believe it's this)
     
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  20. alex3619

    alex3619 Senior Member

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    For many drugs a lot of the "toxic bits" derive from actually working, such as with NSAIDs. We are deranging body chemistry with drugs, and sometimes that has consequences.
     
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