Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Fecal Transplant study: 58-70% response rate

Discussion in 'Latest ME/CFS Research' started by Rrrr, Nov 14, 2012.

  1. Wayne

    Wayne Senior Member

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  2. snowathlete

    snowathlete

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    So...anyone been playing with poo lately?
     
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  3. Izola

    Izola Senior Member

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    Pooh therapy sounds like a load of sh*t. Blaaakkkyyy ueck yuckeee uighcheehh.
     
  4. Cheesus

    Cheesus Senior Member

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    Perhaps Dr Lipkin's study might tell us more about why this works. If that is the case, I expect we would see a number of follow up trials and perhaps we won't have ME patients asking their friends and family to poo in a blender for them.
     
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  5. Bob

    Bob

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    @Rrrr , would you mind amending the title of the thread so it isn't incorrect and misleading? (And the first line in your opening post?)

    i.e. change it to:

    Fecal Transplant study: 58-70% response rate

    I'd appreciate it, thank you.
     
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  6. Thomas

    Thomas Senior Member

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    I did a FMT in August of 2012. It didn't do anything to prevent my decline.
     
  7. Rrrr

    Rrrr Senior Member

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    UPDATE

    i have been doing FMTs for over a year now and i have this to report:

    - i have been using just 1 donor over the course of the last 1.5 yrs. will try to get a 2nd donor soon
    - i did not do the pre-FMT antibiotics, to kill off all my gut bacteria before the fmt, so this may have impacted this protocol's efficacy for me
    - after doing a daily fmt for 2 weeks (12 fmt's over a 14 day period), 1.5 yrs ago, i was very sick and wiped out for about 2-3 wks. but that passed and then i felt better than usual for a number of months. but i was also doing a new antiviral med, so it could have been from that that i was doing better.
    - the fmt's did/do help my gut issues, which were/are constipation. i.e. after an fmt, my constipation is gone for 1-3 months. then it comes back.
    - tho i often feel better (me/cfs wise) the day after an FMT, in the long run, the FMTs don't seem to help my me/cfs
    - the fmt seems to lose its good effects on my gut issues about 1-3 months after my last FMT was done
    - so because of that, i do an fmt about 1x/month now

    in short, if you have ANY gut issues at all, including too loose or too hard stools and difficulty with daily bowel movements, i'd do FMTs -- if you can find a donor (who must be screened, as per the usual screening process of a stool test and also some blood tests). but i have not found FMTs helpful in the long run for my me/cfs. however, they are mandatory for my gut and bowel movement issues.

    rrrr
     
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  8. Bob

    Bob

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    Thanku very much for changing the title, @Rrrr :thumbsup:
     
  9. SB_1108

    SB_1108 Senior Member

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  10. SDSue

    SDSue Southeast

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    This is absolutely the best laugh I've had in weeks! Thanks :) ......... still laughing
     
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  11. trev343

    trev343

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    how does this only have 4 pages, do people not want to get better?
     
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  12. Esther12

    Esther12 Senior Member

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    There are lots of things claimed to help people get better... when it involves eating poo, it will need some pretty solid evidence before I get excited about it.
     
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  13. Valentijn

    Valentijn Activity Level: 3

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    Lots of ME/CFS patients have tried fecal transplants without significant improvement. And this is an IBS study where patients have chronic fatigue, not an ME/CFS study. There also seems to be no paper published anywhere, just the abstract, which is rather bizarre.

    And I seriously doubt fecal transplants are curing Lyme, Bartonella, HHV-6, enteroviruses, or other infections we often have.

    Failure to jump on board with every whacky theory supported by flimsy evidence does not mean that people don't want to get better. It means we require a certain level of scientific and logical rigor which has not been met, or the treatment is not a practical option for us, or we just aren't interested in treating a small set of minor symptoms and would rather go after more causative factors.
     
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  14. Daffodil

    Daffodil Senior Member

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    there is no probiotic with b. fragilis because it dies once exposed to air
     
  15. Rrrr

    Rrrr Senior Member

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    if someone has gut issues, such as constipation (or the opposite, too loose stools), i highly recommend FMTs.
     
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  16. drewmaster

    drewmaster

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    I tried fecal microbial transplants (10 transplants over the course of 2 weeks) and it did nothing for me. Nada. But now I'm wondering if taking daily poop capsules, long-term (6 months or more), might be effective. Unless I'm mistaken, doing this should theoretically stop the bad bacteria from proliferating once the transplants are over, and thereby give my immune system enough time to truly restore itself to the "normal" functioning that went away when my microbiome was annihilated by broad-spectrum antibiotics.

    I'd welcome thoughts from anyone who reads this.
     
  17. Thomas

    Thomas Senior Member

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    I did one back in 2012 and it did nothing for me either. I'm interested in the oral capsule version not only because of the ease and cleanliness of this delivery system versus some disgusting enema, but also because of the potential long term benefits.

    But I have had IBS for most of my life so I can't say for sure when my microbiome was altered (if at all). Was your gut functioning normally before ME? And also I take it from your message above that you can pin point when your microbiome was harmed due to a specific course of Abx.
     
  18. drewmaster

    drewmaster

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    Hi Thomas,

    My gut problems and ME/CFS all started at precisely the same time: when I was taking tetracycline daily for acne. I'd had loads of antibiotics before then, but this was the straw (or really, sledgehammer) that broke the camel's back. I've had poor GI function since then (although I don't know if I technically qualify as having IBS). I assume you have ME/CFS as well as IBS?
     
  19. Thomas

    Thomas Senior Member

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    Yep, I'm really lucky! My IBS predated my ME onset by around 15 years. I then got ME following a flu shot in 2011 at age 32. I refer to that vaccine as the "rock" that broke the camel's back, but sledgehammer is a much better word!

    I guess there are many roads to ME. And antibiotics are surely one of them. For all I know I could have wiped out a semi functional microbiome with even one round of Abx as a kid and set the stage for ME. My mom has IBS also so I gather I was already born with a messed up gut and neuroimmune system.

    But I think you're right - long term oral poop capsules are probably the only way to really change the biome.
     
  20. drewmaster

    drewmaster

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    Sounds like you've been through the wringer, like me. One question is, why do CDiff patients recover after just a few implants, and yet we ME/CFS patients do not? The answer, I'm thinking, is that our immune systems have been far more damaged than theirs, and so need much more time (i.e., long-term poop capsule therapy) to recover. This assumes, however, that restoring the biome, and then keeping it normalized for an extended period of time, will eventually restore the immune system. I sure hope that that is the case!!
     

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