Naviaux, the ME/CFS Autism Connection and a Treatment Success - A New Website Opens

Discussion in 'General Discussion' started by Cort, Nov 2, 2018.

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  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Syndrome A is a brand new website put together by a person with ME/CFS,Ehlers Danlos Syndrome and Autism. It's going to attempt to break down some silo's and do something I think is vitally needed - merge diseases such as ME/CFS, Autism, Ehlers-Danlos Syndrome, Mast Cell Activation Disorder & others together.

    A deeply personal blog by Brooke starts off the website. For first time I felt I had a real sense of what it's like for a highly functioning person have autism. Next, Brooke moves onto her ME/CFS which she developed when she was 16.

    Then she makes a natural progression to Naviaux autism/ME/CFS findings (she does both personal and science very well) and finally reports on an interesting and cheap treatment help she stumbled upon while researching multiple sclerosis (!)

    The big bonus is the fantastic writing. Please check out and support Brooke's efforts to meld this group of diseases together

    https://www.syndromea.org/2018/10/29/autism-and-chronic-fatigue-syndrome/
     
    Not dead yet!, Paw and Forebearance like this.
  2. Paw

    Paw Well-Known Member

    Yes, nice. Subscribed. High-dose biotin, here I come. (She also gives a nice preview of coming attractions from OMF.)

    With severe autism in my family (and a positive Beighton score for me personally), I'm pretty excited about all these new possible linkages.

    One quibble: I wish she'd choose an easier font to read.
     
  3. Forebearance

    Forebearance Well-Known Member

    Ha! I wrote a similar comment yesterday, Paw, but it didn't post.
    I love the blog! Thank you so much for the link to it, Cort. She did an awesome job.
    But the font size is too small for my old eyes to read easily.

    I tried a standard dose of biotin a while ago and felt like it didn't do anything for me. So I will try again with a larger dose.
     
  4. Issie

    Issie Well-Known Member

    Interesting read. Just a FYI. You have to get off biotin a week before having thyroid testing. Biotin is used in lab process and your thyroid levels will not come back accurate.
     
    Forebearance likes this.
  5. Forebearance

    Forebearance Well-Known Member

    Thanks for that, Issie. Does getting off biotin include stopping a B-complex vitamin that has a little bit in it?
     
  6. Issie

    Issie Well-Known Member

    My doc said I had to get off it completely before testing.
     
    Forebearance likes this.
  7. Not dead yet!

    Not dead yet! Well-Known Member

    Great article thanks so much! EDS is a very interesting connection. I'm a fan of this blog written by someone who has EDS: http://freefromfavourites.com/ I discovered it when I became fully gluten free.

    The biotin I've tried, but I think maybe the form was wrong or I need a slower build up to large doses. It always triggers a screaming migraine. So it's definitely involved, but why do I react so badly to it?

    This was my post a while back on biotin: https://www.healthrising.org/forums/threads/question-a-strange-biotin-effect.5300/

    Never did figure it out.
     
    Forebearance likes this.
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