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Just Published: Research on B-12 and B-9 as Rx for ME/CFS and Fibro

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by ChetRoi, May 24, 2015.

  1. ChetRoi

    ChetRoi

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  2. dannybex

    dannybex Senior Member

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    This seems to me to be a bizarre and almost pointless study. They didn't use methylfolate, or even folinic -- they used folic acid.

    Too bad that Rich Vank's and Neil Nathan's study was never published in a 'recognized' journal so these authors might've been more informed.

    sigh...
     
    Last edited: May 24, 2015
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  3. ChetRoi

    ChetRoi

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    I see it very differently. The authors make generic references to methylcobalamin and hydroxocobalamin as B-12, and use both terms folic acid and folate in referring to methylfolate. And what does one make of Figure 1?

    Notwithstanding a quick dismissal of this research, I found their work and results very closely match both my situation, as well as my daughter's and what we have seen and experienced for more than a year. I'm delighted to have my own trial results and observations confirmed by a study involving 38 female patients, 5 doctors, and additional clinicians.

    Given the dearth of research completed on methylcobalamin and any kind of B-9, I'm also OK with a paper produced in another country being a bit casual about consistency in term usage when their scientific methodology appears rigorous and otherwise passes the smell test.
     
    Last edited: May 24, 2015
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  4. pogoman

    pogoman Senior Member

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    The article was interesting but a bit disjointed, maybe translation issues?
    Plus in the result table only hetero and not homozygous mthfr were listed for some reason.
    I found it interesting that in figure 1 compound mthfr mutation had more activity than the homozygous C677T, on some mthfr sites I've seen them listed as equal in enzyme activitiy.

    But the article seems to confirm some relationship between ME/CFS and methylation issues like mthfr.

    I have read in the traditional medical literature where folic and folate were used interchangably, Merck comes to mind.
     
  5. dannybex

    dannybex Senior Member

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    Hi @ChetRoi,

    I didn't certainly didn't mean to insult you or anyone with my original comments. I also may be misreading the study in some way, but it's my understanding that almost every study uses the terms 'folic acid' and 'folate' interchangeably. And when a different form is in the study, like methylfolate or folinic (or the various scientific names for methylfolate or folinic) then those forms are mentioned specifically. Like this one:

    http://www.ncbi.nlm.nih.gov/pubmed/16889122

    I don't see anywhere in this current study where they say they used methylfolate. In fact, it seems like it's not available in Sweden, judging from this paragraph:

    "In Sweden, the common form of B12 injective substrate has for more than forty years been hydroxocobalamin, provided in 1 mL ampoules with 1 mg/mL. By the end of last century, also methylcobalamin became available, in 2 mL ampoules with 5 mg/mL; i.e. an ampoule of methylcobalamin contains ten times more cobalamin than an ampoule of hydroxocobalamin. Folate in pharmacological doses is available by using tablets of folic acid (1 mg or 5 mg)."

    If they did use folic acid and got some benefit, then it does indeed make the study more intriguing, as it goes against what Rich and Fred and quite a few doctors have been saying for 7-8 years now.

    As for figure one, that seems to be just a generic, simplified diagram of one part of the methylation cycle. I've never heard the term "methylene-folate" used before, but note that in figure one, that comes before MTHFR changes it to methylfolate. But I'm definitely not the methylation brain on this forum so perhaps @caledonia, @Valentijn, @Hip, or others could weigh in on this?

    Again, I could definitely be wrong, and hope I am. I too would love to see more studies -- any studies -- that confirm the benefits of methylation supplementation for our disease. They're certainly long overdue.
     
  6. dannybex

    dannybex Senior Member

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    Yes, and that's definitely a good thing.
     
  7. caledonia

    caledonia

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    I believe they're referring to 5,10-methylenetetrahydrofolate which is one step before the MTHFR gene/enzyme in the folate conversion process.
     
  8. ChetRoi

    ChetRoi

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    Thanks, dannybex, for that further response. I have written to the primary author for clarification on the supplements the patients used. I'll post with comments about my experience along this path when he responds.
     
  9. Helen

    Helen Senior Member

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    Hi @ChetRoi,

    I was glad to see that you posted this study again. There is an earlier thread where it was dismissed and I think it deserves better. I too have corresponded with the main author, now and for some years, as methylation and its part in our disease-s still is uncovered. I have got a long reply from him that I was to post about, but I haven´t been able yet.

    I know for sure that it was folic acid, the synthetic form that was used. I was diagnosed with ME at the clinic where the study was conducted and I, like many others in our country, have thanks to the doctors at this clinic had access to B12 injections not only as a cure but for continously use. Folic acid is unfortunately the only form of folate that is available here. I have been puzzled about the claims that only methylfolate should work if you have MTHFR mutations, and I have earlier posted about that, as I have heard so many witnesses from people with ME here. I discussed it with Rich too, but sadly he passed away before we had finished.

    I am sure you will get a thorough reply from the main author that will add to the discussion.
     
    Last edited: May 25, 2015
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  10. dannybex

    dannybex Senior Member

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    Helen likes this.
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think Valentijn and Barb pretty much summed up this paper in the other thread. This is not rigorous scientific research, it is more proving what you want to prove - what scientific methodology is designed to avoid. It does not begin to have a proper scientific methodology, being retrospective with no controls. It continues to surprise me, although I am not sure why, that material getting into journals is slipping more and more to this sort of level. If PLOS is prepared to publish this there isn;t much point in calling it a peer reviewed journal. I think it would be better if scientists just uploaded their data to Blog pages and other scientists could assess it for themselves. This wouldn't even get through the quality control team at WIkipedia.
     
  12. ChetRoi

    ChetRoi

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    I appreciate you stepping in on this one, Dr. Edwards. Education can sometime be a humbling experience and I confess a degree of giddiness when I saw, for the first time, research that closely lined up with my own trial-and-error efforts over the past 15 months.

    Nonetheless, I cannot readily dismiss a report summarizing the experience of clinicians when commonality with my lay trial results presents itself, particularly in the absence of both topical rigorous scientific research and professional medical personnel willing to assist.

    The collective effort here on PR, as I see it, is to find solutions in exactly that environment; one of insufficient hard data and a historically hesitant medical community.

    Drilling down to my interests in this fight, they are on two fronts. First, to help my ME/CFS daughter achieve a quality-of-life beyond her, until recently, eight year bedridden state. Second, to keep myself from further deterioration by a distal axonopathy, at least partly due to long term B-12 malabsorption.

    Thanks again for “righting” this discussion. If I receive additional information that might add to our understanding of this report, I will post it in this thread.
     
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