The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Cort Johnson blogpost - "Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome"

Discussion in 'General ME/CFS News' started by Sasha, Dec 13, 2016.

  1. Sasha

    Sasha Fine, thank you

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    slysaint, actup, L'engle and 4 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Interesting... Naviaux is looking to start treatment trials soon (I don't know how soon, though). :)
     
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  3. Wildcat

    Wildcat

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    .
    Stop talking about 'Chronic Fatigue Syndrome' because it aligns us with people who are tired or burned out/stressed out.
    .
    Some of us do not have enough years left to live to live in 'hope'

    Get rid of the bloody psycholgising ... at this stage that alone will save us from further medical abuse.....
    .
     
  4. Sasha

    Sasha Fine, thank you

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    Cort is taking part in the current study. A couple of particularly interesting bits:

    and

    This is consistent with my experience of a long period of remission (in fact, I thought I'd recovered - it was before I was aware that ME/CFS could relapse/remit) after many years of being confined to bed.

    I'm glad Naviaux isn't hanging about and seems keen to crack on quickly with treatment trials.
     
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  5. Mary

    Mary Senior Member

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    It's very interesting and a little discouraging at the same time. This part, which talks about our bodies basically thwarting off any attempt to return to health, is a little scary to me:

    I've seen a similar hypothesis before. I've been sick for 18 years with no remission; the only progress I have made is shortening my PEM recovery time, but have not extended my exertion window at all.

    But I'm very glad for the research of course - and who knows?
     
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  6. lansbergen

    lansbergen Senior Member

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    It does not scare me.

    I see it as when the danger has subsided health can return.
     
  7. Mary

    Mary Senior Member

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    I can see your point. It's just I think the "danger", whatever it was, has long since subsided - it hasn't been here for 18 years, but here I am, still sick, with no hope in sight. So the body I guess erroneously believes the danger to still exist but doesn't seem capable of recognizing when it's safe to get well. I'm sure this is what Naviaux is studying - it's just a rather strange construct, our bodies working that way. Or maybe most similar to an autoimmune illness, where the body apparently gets stuck in a different way.
     
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  8. alex3619

    alex3619 Senior Member

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    Its a well known observation in ME that treatments can work for a while then stop working. This is consistent with the hypothesis that our body fights the treatment to return to its stable and unhealthy state.
     
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  9. Mary

    Mary Senior Member

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    This has happened to me on a couple of different occasions - years ago both NADH and l-carnitine were like magic pills, for about a week or 10 days.....

    Obviously it's a good thing to know what's going on and if this is what our bodies are doing, we need to know it. So the research is welcome - but am crossing my fingers about where it will lead us! :nervous:
     
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  10. alex3619

    alex3619 Senior Member

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    A stable unhealthy state must have one or more pathways that stabilize it. Once we definitively know what those are, presuming this hypothesis is right, then we will have targets to focus on. The goal for a cure might be in sight.
     
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  11. Barry53

    Barry53 Senior Member

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    So, analogous to an animal resisting coming out of hibernation because its body does not realise it is safe to do so.
     
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  12. alex3619

    alex3619 Senior Member

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    I doubt any cure will result in 100% return to health for most of us. New patients, yes. However I think an 80% return to normal health is probably a good ballpark figure for most long term patients. Given I am currently about 30%, maybe, that would be huge. Its not that ME is not 100% curable, I think it is, its that damage from long term ME may not be fully recoverable. In particular I think neural degeneration and vascular remodeling, if present, may not be fully reversible. Yet even in this case at least a cure for ME will halt any decline and allow patients to better adapt without such debilitating exhaustion, pain and brain fog, and with decent sleep.
     
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  13. lansbergen

    lansbergen Senior Member

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    The one I suspect is still around. There is no known adaptive response and no known cure.

    The innate immunesystem must do the job and when that reacts to strong it can cause symptoms and even kill the host.
     
  14. TreePerson

    TreePerson Senior Member

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    I have had this with supplements that work for a week or two and then stop. I keep thinking about something my Grandma used to say "Don't wear your coat indoors or you won't feel the benefit when you go out ".
    I think it's something like that. So after a while if you wear your coat indoors you would need two coats when you go out. The body starts to accept a coat indoors as normal and adjusts. I think it's the same with supplements. After a while the body accepts the increased availability and adjusts so that you end up back where you were before. Except you have become dependent on an expensive supplement. Well that's how it's been for me.
     
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  15. lansbergen

    lansbergen Senior Member

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    The immunemodulator I use still works. Improvement is very slow but lately it accelerated.

    That brings me to a question for @Jonathan Edwards. Is there any reason to think protein clumbs other than immunecomplexes can not get stuck in the pleura and pericard?
     
    Last edited: Dec 14, 2016
  16. lansbergen

    lansbergen Senior Member

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    I agree
     
  17. TreePerson

    TreePerson Senior Member

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    Hi @lansbergen What is the one you suspect?
     
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  18. lansbergen

    lansbergen Senior Member

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    Do you want your government to panic all over again?
     
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  19. TreePerson

    TreePerson Senior Member

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    Yes if they are hiding something. So what is it?
     
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  20. Mary

    Mary Senior Member

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    @lansbergen - I'd like to know too! (We're already panicking after our insane election. :bang-head: :sluggish:)
     
    Last edited: Dec 14, 2016
    Jennifer J likes this.

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