The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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  1. ruben

    ruben

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    Last summer I went to the Taymount clinic in Hertfordshire for 2 weeks of FMT treatment. To be honest I'm sadly no further forward. However, am I right in thinking that there are a few accounts where someone who didn't respond to this treatment, then went on to have a family member as a donor, and then had success?
     
  2. Hip

    Hip Senior Member

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    Hi @ruben. It's a good idea to spell out uncommon abbreviations initially, as not everyone may be familiar with them:

    FMT = fecal microbiota transplant
    , aka: bacteriotherapy.


    To answer your question, I have not heard of family donors providing a higher success rate, but I would be interested in learning more, if you can provide a link to where you saw these accounts.

    But it may have nothing to do with being a family member; success on the second attempt might be a result of receiving a different spectrum of intestinal bacteria from a different donor. Each person has their own unique microbiota.

    And even with the same donor, bacteriotherapy for ME/CFS may fail the first time, but work the second time:

    Have a look at Dr Thomas Borody's study on bacteriotherapy for ME/CFS. This study involved 60 ME/CFS patients (most of whom had two bacteriotherapy infusions: one transcolonoscopic infusion, and then on the next day, one rectal infusion). However, 15 out of these 60 ME/CFS patients failed to respond to this bacteriotherapy.

    Out of those 15 who failed to respond, 10 of these were given bacteriotherapy once again, and 7 out of these 10 then responded to bacteriotherapy on the second attempt. Which is quite a high success rate for the second attempt.



    What was the cost of the FMT at the Taymount clinic in Hertfordshire, can I ask?

    Maybe you could contact them and ask for a second attempt for free, or at a reduced price, given that the first did not work. You can quote them the Borody study which shows the second attempt is often successful when the first has failed.

    From the Taymount clinic website, they say:
    I am not sure whether that means they use transcolonoscopic or rectal infusion (and in any case, I am not sure if the infusion method is a factor in the success rate).



    There are may threads on this forum about fecal transplant, by the way:

    Fecal Transplant study: 58-70% recovery rate for ME/CFS
    Poop: the cure of the future?
    Faecal transplant eases symptoms of Parkinson's (and CFS)
    Fecal transplants (fecal bacteriotherapy) - DIY home version very straightforward
    Fecal Transplants: Seriously, What Do We Think?
    Fecal Transplant Banishes C. Diff and improves insulin sensitivity
    RePOOPulate: Synthetic stool effective agains C difficile
     
    panckage and helen1 like this.
  3. helen1

    helen1 Senior Member

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    @ruben Yes, I had read that there was greater success if the donation was from a healthy family member. I think it was from the blog of an Australian woman who was successfully treated with donations from a very healthy friend.
     
  4. ruben

    ruben

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  5. ruben

    ruben

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    Hello Hip and thanks for your informative reply. Unfortunately I can't recall where I saw about family member donors. It was a long time ago I read this. At Taymount you attend the clinic Monday to Friday for 2 consecutive weeks. The cost is £3,500, so not cheap. The Dr Thomas Borody study you mention seems to have produced a good outcome. After the holiday weekend I will contact Taymount again and see what the best way forward is for me, and as you say mention the Dr. Borody study.
     
  6. Hip

    Hip Senior Member

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    @ruben
    One much cheaper option that may be available through a doctor is the new FMT capsules, which cost $635. There is a thread here.

    I don't think these pills are yet available in the UK, though.
     
  7. Theodore

    Theodore Senior Member

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    @ruben

    Hi Ruben, have you had any reply from Taymount? Thank you.
     
  8. justy

    justy Donate Advocate Demonstrate

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    I have spoken with some people who have been here who had ME/lYME and who felt significantly worse after FMT. In terms of family members I would be careful. My Dr hinted that research is suggesting family members share a microbiota and may be why my husband is beginning to feel ill, because he is sharing my unhealthy one.
     
  9. Theodore

    Theodore Senior Member

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    Why family members? Taymount offers only their healthy donor, isn't it?
     
  10. justy

    justy Donate Advocate Demonstrate

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    Ruben mentioned family members in his original post, that's why I mentioned it. Im sure Taymount only uses donors.
     
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  11. ruben

    ruben

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    Hello again. As I said it was a long time ago I thought I saw something about family members as a donor. Someone seemed to emphasize "the importance having the correct donor" but it must have been a one off, or perhaps I dreamt it!!. Yes, Taymount only uses healthy donors who live on an organic diet, no smoking, no drinking lifestyle etc. Anyway I have been in touch with Taymount and I have 2 more "free" implants at the clinic. It was suggested I have 5 more in total. It's been said about unheathly microbiota. Are we anywhere near being able to differentiate just what the unhealthy and the healthy microbiota are?
     
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  12. ruben

    ruben

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    In the UK. last night the science programme "Horizon" (BBC2) was all about the problem obesity. Towards the end of the documentary the subject of FMT came up. This American lady suffered with c.difficile (sorry for spelling). She had FMT and the donor was her daughter. She said that her c.diff. was literally cured overnight. So as I mentioned in my original post it seems family donors are sometimes the route they take. Her daughter was actually overweight and in the time that followed the mother began to gain weight herself. So although she corrected her original health problem there was another twist which they implied may have been because of the FMT.
     
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  13. Hip

    Hip Senior Member

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    @ruben
    Yes, that is a very fascinating story. It also tries up with this research which found that obesity is also associated with higher gut levels of certain Firmicutes bacteria in relation to Bacteroidetes bacteria.

    Overweight individuals tend have more Firmicutes bacteria (such as Clostridium, Staphylococcus, Streptococcus, and Helicobacter pylori) in their gut, whereas normal weight individuals tend have more Bacteroidetes bacteria.

    Although obesity has also been linked to viral infections, and a fecal transplant may also introduce viral infections into the recipient. Obesity is associated with adenovirus 36, which is found in 30% of obese people, but only in 11% of non-obese people. Refs: 1 2
     
  14. IreneF

    IreneF Senior Member

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    What does "success" mean? And how long does it last?
     
  15. Hip

    Hip Senior Member

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    If you read the study, you see it says:
    I can't tell you any more than that, because that's the only info I have.

    I am not sure why they are choosing sleep deprivation (insomnia?) as one of the symptoms to measure. You can get some insomnia in ME/CFS, but it's more unrefreshing sleep which is a classic and cardinal ME/CFS symptom.
     
    Last edited: Jun 8, 2016
  16. MaximilianKohler

    MaximilianKohler

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  17. adreno

    adreno PR activist

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    This doesn't seem right. If a family member you are living with is perfectly healthy, and you have ME/CFS, there are only two possible reasons: 1) you do not share the same microbiome, or 2) the microbiome is not an important factor in your disease.
     
  18. MaximilianKohler

    MaximilianKohler

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    I've been following this area of research very closely (see https://www.reddit.com/r/HumanMicrobiome). There have been a number of studies showing that healthy family members share a similar "pre-disease state". So while their gut microbiomes are different, there are similarities to the point where you'd want to select someone who has no issues running in their family.

    But for twin studies for example, if the sick twin got an FMT from the healthy one it would likely still be beneficial. But generally dysbiosis runs in families (though there is still significant individual variation), and there are triggers, exposures, risk factors, developmental difference, etc. that contribute to one family member developing a problem, and not another.

    Here's a paper on it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5247345/
     

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