The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Had a SKYPE consultation with Dr Paul Cheney last night

Discussion in 'ME/CFS Doctors' started by keenly, Apr 6, 2017.

  1. keenly

    keenly Senior Member

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    Very interesting!!!!!!!!!!!!!

    I can confidently say nobody understands CFS more than Cheney. I am now broke as hell and will have to sell household items to get by :D:(:cry::meh:

    There is hope for us, and there is something that could REALLY help that is not complex to implement. I now understand why Idebenone stopped working for me. It is all about NADPH and reduction.

    Never give up!!!!!!!!!!!
     
  2. gregh286

    gregh286 Senior Member

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    so take nadph or not?
    could you expand a bit more....
    many thanks
     
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  3. keenly

    keenly Senior Member

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    You can not take NADPH, there is no supplement, do you mean NADH?

    NADH, Co Q10, Idebenone etc are like pouring water into a bucket with a hole. They make you produce lots of super oxide because you can not reduce them due to NADPH problems. Methylation cycle is not the answer either.

    We have chronic fatigue for a reason. Our bodies are protecting us.
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    What did he tell you in terms of treatment?
     
  5. caledonia

    caledonia

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    That doesn't explain the people who have gotten significantly better by addressing methylation.
     
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  6. Esther12

    Esther12 Senior Member

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    I am cautious about spending money of CFS specialists, especially if people are broke. I'm not aware not of much evidence that they're of value. Best wishes with whatever you do.
     
  7. gregh286

    gregh286 Senior Member

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    Yeah with you there.
    Only thing that ever helped me is flooding body with amino shakes.
    Allowed me to regain a moderately normal life.
     
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  8. veganmua

    veganmua Senior Member

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    Which is? I'm sure there are a lot of us who would like to know!
     
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  9. Stretched

    Stretched Senior Member

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    Could it be that making the sustained effort had a placating effect, i.e. similar to placebo effect, that the trial participants would have had an 'upturn' irrespective of methylation; or substitute another regimen, say Dr, Coimbra's Vit D3 protocol?

    I spent a lot of time and expense with both processes, in specific reading 'Dr. Amy's' questionable books and web routines but succeeded in affecting little but abating the focus on symptoms while preoccupied with the process. While symptoms ultimately returned, that is not to say there may have been some health benefits to 'M' and
    the Vitamin D3 protocol... .

    IMO, methylation is just another fad that got a few people engaged then withered away, like so many other 'cure de jours'. Even capsules ordered from the guru's
    store ultimately hardened and blackened with spots! ...But hey, no ticky, no washy; you gotta try... .
     
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  10. Kati

    Kati Patient in training

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    i agree, @Stretched

    Methylation 'issues' is an alternative medicine concept that hasn't picked up in mainstream. Whether this will be highlighted in Dr Davis' and other researchers' work or not, we will find out. I believe that this is not the root cause of our disease, just purely an artifact.
     
    Last edited: Apr 7, 2017
  11. keenly

    keenly Senior Member

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    How many of them exist? Not many. I was doing fine using only hydroxycobalamin, then I added other B vits in the form of the Mixed B vit transdermal sprays and everything collapsed. Now I can not reduce Idebenone to Idebenol.

    How many people have been truly transformed by adding folates?
     
  12. Gondwanaland

    Gondwanaland Senior Member

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    That is interesting. I would like to learn more about reduction processes impaired by B vitamins.
     
  13. CCC

    CCC Senior Member

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    We've seen a vast improvement from B vitamins.

    My son can tell when he needs b2 or folinic/methylfolate (and which one), whether to lower the adenosylB12 dose or add more or less methylB12. He knows LCF doesn't work for him at all (part of freddd's deadlock quartet). He's worked out he needs to keep up the multi B to keep things in balance. We have a harder time getting compliance with the fat soluble vitamins because the effect is less instantaneous.

    There was a lot of 'sucking and see' (appropriate for sublinguals :rolleyes:) to work out dosage and stuff.

    The difference is from being bedroom bound, with no memories from about 6 months of his worst period, to now being only housebound and forming new memories.

    But we might be different. I'm convinced he has a B2 issue there somewhere.
     
  14. keenly

    keenly Senior Member

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    I do not know exactly how it happened. I used the B Vit sprays from Greg(B12oils.com)for 3 days, then had a collapse. Flooded with adrenaline, and have suffered since.
     
  15. Helen

    Helen Senior Member

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    Sorry that this happened to you. Did you contact Greg again? He explained to me that this could happen under certain circumstances.
     
  16. adreno

    adreno PR activist

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    What is that?
     
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  17. keenly

    keenly Senior Member

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    This may explain
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2651670/

    'IDE is reduced by the flavin in complex I, to produce semiquinone species which result in an increased level of reactive oxygen species formation, and it is reduced slowly at the physiological quinone binding site. The rates of both reactions are affected by how IDE partitions between the membrane and the aqueous phases. The “negative” effects of IDE are thus reactive oxygen species production, and the inhibition of physiological quinone reduction, caused by slow IDE product release. The “positive” effects of IDE are that, if Q10 is not sufficiently available, it increases the rate of NADH oxidation and regenerates NAD+, and its high affinity means that it may be more effective at outcompeting an inhibitor or reacting with a damaged binding site.'

    I think I caused a huge B2 deficiency by adding all the other B vits, this affected reduction of Idebenone

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4487815/figure/F2/

    'A second interaction of idebenone with complex I occurs at a non-physiological hydrophilic quinone binding site that overlaps with the flavin mononucleotide (FMN) moiety. Here, the one electron reduction of idebenone yields an unstable semiquinone intermediate (IdBH·). This semiquinone causes the one-electron reduction of oxygen (O2) to superoxide (O2·-), regenerating idebenone'

    I never had any issues before I added B vits. I used Idebenone because Cheney used to always recommend it. My life was changed, now I am back in hell.
     
  18. Jenny

    Jenny Senior Member

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    What is it?
     
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  19. Gondwanaland

    Gondwanaland Senior Member

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    It is interesting that I could not produce enough T4, T3 and estradiol anymore. Perhaps methylation induced an underlying B3 deficiency.
     
  20. keenly

    keenly Senior Member

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    NanoVi Technology, nocturnal low dose oxygen.
     

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