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.
Discuss the article on the Forums.

Immune system treatment of the methylation cycle

Discussion in 'General ME/CFS Discussion' started by denlander, May 22, 2018.

  1. denlander

    denlander

    Messages:
    84
    Likes:
    207
    We have believed for many years that ME CFS is related to an immune system dysfunction. We worked with the Late Rich van Konynenburg on the methylation cycle the work suggests a supplement protocol which also addresses MTHFr genetic abnormalities seen in our work with Jonathan Kerr many years ago.
    Derek Enlander MD
    New York
     
    Mel9, HowToEscape? and helen1 like this.
  2. perrier

    perrier Senior Member

    Messages:
    782
    Likes:
    1,393
    Dear Dr Enlander
    What sort of results did patients obtain following the supplement protocol you refer to? Were they cured? Could they return to school or work?

    Dr Kerr was the kindest chap! As a desperate mom, I just rang him up, and he was very attentive.

    And Dr. Enlander, if you believe that ME is an immune dysfunction, can you offer your input to the various teams working on this monstrous illness. There is Dr Davis in Stanford. There is Dr Scheibenbogen in Berlin. And others in the usa.

    We have very sick family members, who have suffered for many years at very extreme levels. Our children, who are adults, cannot endure such suffering for very much longer.Thank you.
     
    Lalia, Mel9 and ukxmrv like this.
  3. perrier

    perrier Senior Member

    Messages:
    782
    Likes:
    1,393
    The other point I needed to make Dr Enlander is that many severely ill patients are extremely sensitive to various supplements and cannot tolerate them, or have such severe GI problems that they cannot swallow a raft of pills.

    Please let us know if you treated the severely ill. Thanks you.
     
    bertiedog likes this.
  4. denlander

    denlander

    Messages:
    84
    Likes:
    207
    We are in the process of expanding the methylation cycle research, deriving patients who have and have not a genetic MTHFr mutation. The supplement protocol for both groups is slightly different.
    Patients will use the supplements based on Rich van Konynenburg protocol . Patients will be obtain the supplements and shall be monitored weekly, by email questionaire .
    Patients who are interested in joining this research should contact me at denlander@aol.com.
    We have limited research funds, donations towards patients who cannot afford the supplements would be appreciated.
     
  5. denlander

    denlander

    Messages:
    84
    Likes:
    207
    did you contact Jonathan in South America? The St Georges Hospital were disgusting when they refused to give him tenure. Basically taking his job away, I offered him a job at Mount Sinai in New York.
     
    ukxmrv likes this.
  6. denlander

    denlander

    Messages:
    84
    Likes:
    207
    yes we realize that ME CFS is multisystem, and patients have GI symptoms, Dr Chia has studied this in depth. Chronic constipation is a problem in some patients, it should be treated. Other patients have the reverse problem , diarrhea which indeed can cause problems including dehydration.
    MAF878 is grown in yoghurt and has helped some GI problems in ME CFS. It also activates NK cells.
     
    Mel9 likes this.
  7. ahmo

    ahmo Senior Member

    Messages:
    4,457
    Likes:
    6,844
    Northcoast NSW, Australia
    I have MTHFR snps. Before I confirmed this, I had quit gluten and dairy, which improved my terribly over-active nervous system within a week. I then followed Freddd's Protocol, which was the right approach for me. And I spent 3 years detoxxing, following Klinghardt's suggestions.

    None of this has cured my fundamental ME, but it has given me a reasonable quality of life. I consider myself moderately ill. In the process I also uncovered sulfur and histamine intolerances. I eat a limited range of foods, and am also one who's intolerant to gluten cross-reactive foods. So no grains or beans in my diet. But I'm no longer a nervous wreck, and mostly don't have the noxious symptoms I lived with for years. I don't do much, but I've adapted to that. My lifelong tendency to insomnia, which had become chronic and debilitating, resolved when I had adequate B12.
     
    perrier likes this.
  8. perrier

    perrier Senior Member

    Messages:
    782
    Likes:
    1,393
    Dr Enlander mentions MAF878 in an earlier post. Where is this obtained? I looked on line and really have not come up with a place to buy it.


    I bought a product to make yogurt (forgot the name) from Klinghardt's website, and it was tried several times, but no real results.
     
  9. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,920
    Likes:
    4,996
    Pacific Northwest
    This is about far more than a MTHFR SNP. What about patients who have MTR, MTRR, BHMT, TCN2, COMT, NAT2, PEMT, and glutathione SNPs? All of these can have an impact, too.

    Our doctors have been helping my family with methylation issues for 9 years, and we've found that environmental factors, like heavy metal and mold toxicity, stress, physical activity, illness, and mitochondrial membrane health dramatically change the amount and ratio of 5-MTHF, MB12, AB12, HB12, TMG, R5P, P5P, magnesium, potassium, methionine, glycine, glutamine, NAC, B1, and molybdenum the body needs.

    A canned methylation protocol is at best a stsb in the dark. Personalizing methylation protocols and adjusting as needs change over time is a lot more successful.

    Wull you be personalizing for patients in your study?
     
    Lalia likes this.

See more popular forum discussions.

Share This Page