Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Treatment implications of the Naviaux study (PNAS, August 2016)

Discussion in 'General Treatment' started by Sasha, Aug 30, 2016.

  1. Sasha

    Sasha Fine, thank you

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    So, it's finally out!

    http://www.pnas.org/content/early/2016/08/24/1607571113.long

    It's way over my head. Are there any treatment implications? Any tests we should be getting? Are there doctors who would know what to do with the info?

    P. 7:

     
    Last edited: Aug 30, 2016
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  2. Snow Leopard

    Snow Leopard Hibernating

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    I don't believe that the metabolic findings observed are driven primarily by nutrient deficiencies, hence I don't really believe that supplements are the answer.
     
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  3. Sidereal

    Sidereal Senior Member

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    Pushing B vitamins has never cured anyone and never will and it makes many severe ME/CFS patients worse. Disappointed to see that sentence in the paper.
     
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  4. voner

    voner Senior Member

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    I posted this on another thread, but I think it's even more relevant in this thread.

    So part of the treatment process Would be sorting through why this hypometabolic state is stuck "on"...
     
    Last edited: Sep 5, 2016
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  5. Cheesus

    Cheesus Senior Member

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    If there is one thing we have exhausted, it is B-vitamins.
     
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  6. Theodore

    Theodore Senior Member

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    But this sentence can explain why some have been better or near a remission state thanks to methylation. No?
     
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  7. Sidereal

    Sidereal Senior Member

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    We have an entire subforum here on Phoenix Rising with thousands of threads dedicated to self-experimentation with B vitamins. If this approach worked in a reliable fashion, we'd know about it.
     
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  8. Theodore

    Theodore Senior Member

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    I am not saying it's the way to go for sure to find recovery but there must be a reason why methylation has worked for some (and I think for an even more ratio for whose who use the b12oil protocol) and the statement which wasn't written by a newbie.
     
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  9. adreno

    adreno PR activist

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    Apparently, vitamin K is linked to sphingolipid synthesis:

    http://www.ncbi.nlm.nih.gov/pubmed/22419547
     
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  10. Cheesus

    Cheesus Senior Member

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    That's interesting. There is no way to measure vitamin K in the body at the minute, however the good thing is that there is no known toxicity.
     
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  11. Snow Leopard

    Snow Leopard Hibernating

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    Who here can claim remission from the "methylation protocol"? I like many others here have tried it with no real change.
     
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  12. Skippa

    Skippa Anti-BS

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    Not knowing much about it, why is the methylation protocol even A Thing then if noone benefits from it?
     
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  13. adreno

    adreno PR activist

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    The methylation cycle is linked to the production of NADPH, which was found lacking in the study. This has been suspected for a long time. The problem with adaptive syndromes like ours seems to be that they are beyond remedy using simple nutritional approaches, because the body keeps reverting to the newfound, now preferred (mal)adaptive homeostasis.
     
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  14. OverTheHills

    OverTheHills

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    Hypometabolism stuck 'on' or 'no off switch': a fair number of us patients report here that on the very rare occasions when they get a cold they feel temporarily much better (ie a swift albeit perhaps partial remission). Does this indicate that an interruption in the 'hypometabolism on' signalling is rapidly followed by moving out of hypometabolism?
     
  15. ahmo

    ahmo Senior Member

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    Not remission. I still have significant mental and physical fatigue. But I no longer have a range of noxious symptoms, and my quality of life is incomparable to what it was before I corrected my methylation processes.
     
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  16. Chris

    Chris Senior Member

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    One has to remember that this study is looking only at plasma, and not trying to account for intracellular contents or activity. Having said that, it appears that DHA is high in most of us, while phospholipids, and especially sphingolipids, are low. One could go the expensive Garth Nicholson route, as has been suggested in the main thread, but one could also shift gears from fish oil to krill oil, which contains lower amounts of DHA and EPA that are apparently more bioavailable because bonded to phospholipids, which contain also some sphingolipids. I am no expert on this stuff, but it would seem an easy and inexpensive move.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I had absolutely horrible experience when I attempted the methylation supplements in 2014 (Methyl B12 and Methyl folate) but I had a positive experience with nebulized glutathione. Am not sure what that means but wanted to mention in case it is relevant.
     
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  18. Sushi

    Sushi Moderation Resource Albuquerque

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    As I remember, your doses were pretty high--higher than most of us could tolerate--I, for one, was not able to tolerate those doses. Since one of the aims of improving methylation is raising glutathione and you did well with nebulized glutathione, you might have tolerated methylation therapy at much lower doses and also been able to raise glutathione through that route.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    They started high but I attempted it a few more times with much lower doses and just didn't seem to tolerate methyl B12 at any dose. It was suggested to me to try hydroxy B12 instead (and this seemed to match better with my 23andMe results per one of my doctors) but I never did try it.

    ETA: My doctor at that time felt that in my case, it was better not to try to open up the Methylation pathway while I was already so ill and better to leave it alone.
     
  20. Theodore

    Theodore Senior Member

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    I am sorry, using the word remission was a mistake but still some have had great improvement, such as @Johnmac

     
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