1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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An Introduction to the Microbiome and ME/CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 13, 2014.

  1. knackers323

    knackers323 Senior Member

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    Anyone heard where the fecal pills can be purchased?
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm flattered, but can't really claim it as my own. A number of scientists have posited cross-reactivity/molecular mimicry as a basis for autoimmunity, and several have posited the source to be antigens accessing the bloodstream via leaky gut. It makes complete sense to me.

    @Simon - a lot of scientific discovery is serendipitous! :)
    Bob likes this.
  3. anniekim

    anniekim Senior Member

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    Is the root cause of ME does prove to be in the gut, does this add credence to the importance of diet and fixing a leaky gut, or would the interventions need to be much more? I ask because I really struggle with the touted diets recommended and then feel a bit of a failure!

    EDIT:

    if it was proven that certain diets are necessary for improvement/ recovery I would have more of a chance of being able to do it. I just find it hard to cut things out and the few pleasures in life when I don't even know if it is necessary
    Last edited: Jan 16, 2014
  4. globalpilot

    globalpilot Senior Member

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    Unfortanately I think that is quite a bit down the road.

    "However, economic barriers to such a synthetic pill are significant. Elaine Petrof, an infectious-disease expert at Queen’s University in Kingston, Ontario, has created RePOOPulate, a mix of 33 different types of bacteria grown in the lab to mimic the microbiome1. Her team spent two years getting the equipment to grow the bacteria up and running, but the process is still expensive and the bacteria finicky. “Honestly, good luck to you,” she says to companies trying to commercialize the technology."

    http://www.nature.com/news/faeces-filled-pill-stops-gut-infection-1.13885
    snowathlete and Simon like this.
  5. Hibernia

    Hibernia

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    Please see my comments about gut malrotation/maattachment under "Hibernia" in other discussions. Typed a long comment, but couldn't log in ?? Hope this works.
  6. aimossy

    aimossy Senior Member

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    Thanks Simon!
    Simon likes this.
  7. marieling

    marieling

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    Late in 2013 after 9 years of CFS and fibromyalgia I have finally what I can honestly say must be a complete remission i.e. about 99% back to normal energy levels, using techniques that dramatically manipulate the gut microbiota.

    Essentially what I did was a modified version of the Specific Carbohydrate Diet - the key differences were a slow decrease in carbohydrates (starches and sugars) rather than the drastic reduction usually recommended, and selective use of probiotics i.e. a previous faecal analysis in 2013 indicated low E. Coli, but an overgrowth of bifido and an unusual soil based organisim - bacillus subtillus. Previously I had obtained partial remission by completing the RPAH elimination diet - which also would make a dramatic change to the gut microbiota. Unfortunately for me, being a super-responder to all of the food chemicals plus dairy and gluten made the cure almost as bad as the problem, given that the diet didn't result in complete remission.

    I know that CFS & FM is a very heterogeneous condition, so my "cure" obviously won't work for everyone, but I mostly just wanted people to know that this is definitely an angle worth looking into. And I know too that 3 months is too early to say that this remission will be permanent, but I can honestly say that I am still improving on a week-to-week basis. I would be happy to update people in another 3 months if there is interest.
  8. knackers323

    knackers323 Senior Member

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    Hi I have a similar dysbiosis to what you had.

    Could you tell us a bit more about your improvement and treatment.

    What probiotics you took, how long on the diet until you began to see effects etc.

    Thanks
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I would certainly be interested in updates. Maybe in a blog?
  10. marieling

    marieling

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    Happy to do an update every few months. Blogging is something I haven't done before, but I will give it some thought :)

    Currently all is still going well - on a steep learning curve in terms of recipes, cooking & eating - going from lots of starches and very limited variety of veg & fruit for nearly 7 years to no grains and cereals and loads of veg & fruit!
    MeSci likes this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Go easy on the fruit!

    You can blog on Phoenix Rising here.
  12. knackers323

    knackers323 Senior Member

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    Hi Marieling

    How do you get the probiotics to take hold in your gut?

    I feel better when I take certain ones but the benefit stops soon after I stop taking them.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Not Marieling but I would guess that you need to make sure to give them the right food, the right pH, etc. In fact it may often be better just to eat the right diet - this alone can correct the gut microbiome.
  14. knackers323

    knackers323 Senior Member

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    Yeah been doing the paleo diet fairly stringently for about a year. It helps a bit but nothing like when I add the probiotics
  15. Radio

    Radio *****

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    I have reached a similar conclusion to the cause of CFS/ME. People who have genetic polymorphisms and methylation issues tend to generate to much H2S. Dysbiosis is the critical factor. Hydrogen sulfide is an inhibitor of cytochrome oxidase at the end of the mitochondrial respiratory chain. Streptococcus, Enterococcus and Prevotella, can turn sulfur into hydrogen sulfide gas. Hydrogen sulfide gas is toxic to our nervous systems and our mitochondria. Anything that can potentially inhibit ATP is a problem that needs to be avoided in my opinion. Low H2S levels can be beneficial in healthy individuals with normal detoxification metabolisms.


    The-Human-Microbiome
    http://forums.phoenixrising.me/index.php?threads/the-human-microbiome.28498/#post-435061

    Reverse-Mitochondrial-Damage-101
    http://forums.phoenixrising.me/index.php?threads/reverse-mitochondrial-damage-101.28175/
  16. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Some comments about the role of the microbiome in this disease are included in this new blog.

    http://livingcleaninadirtyworld.me/2014/02/24/should-you-eat-potatoes/

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