Exploring the Gut Microbiome

  • Hi all,
    I accidentally started side-tracking another thread on this so thought I better just start a new thread if anyone is interested 🙂

    I was recently looking at the gut dysbiosis idea (e.g. https://me-pedia.org/wiki/Dysbiosis) and came across a study in 2012 called "The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy". The study concludes "Bacteriotherapy achieves initial success rate of 70% in CFS and a 58% sustained response. Given that manipulation of the colonic microbiota improved CFS symptoms, bacteriotherapy for CFS warrants further investigation and may provide further insight into a possible etiology of CFS." I thought that was interested and might be worth exploring.

    Apart from trying probiotics I really haven't explored treating the gut issue much. Has anyone else had any helpful experiences? Anyone seen a gastroenterologist or similar?

  • Hi@Katt Today must be all about the gut . Perhaps we all have our appetites back and just want to chow down on whatever we like without any complications. I have issues with my stomach, yet have managed to control the nausea, and digestive pain simply by understanding the whole process of digestion. One of the most important aspects of gut health is the food itself. Once I learnt what foods actually are ( what they are made of and how are bodies break it down and convert to energy, then I felt confident in knowing that certain foods would be easier to digest than others. The trick is to know what to eat across the food spectrum, factor in allergies and intolerances and come up with the wonder diet (diet for better health) that suits your body. I eliminated a lot of foods that always made me ill (yet yummy to eat). I now know what to stay away from and what to eat more of. This took a year or so to get some consistency in diet and discipline and wasn't my brainstorm at all. It was the well researched and educated dieticians that helped me. I am amazed at the technologies available today that can gather data on your body health and actually provide solid based information. Years ago it was a broader general approach: today the science doesn't lie. I'm glad you are open to exploring information about gut health. The more knowledge one has the better: especially when dealing with ME/CFS ( plus all the other ghastly sidekicks that persist in ruining a good meal). Thumbs up to Doctor Thomas Brody and his work. Perhaps you could reach out to the Centre for Digestive Diseases and see if any follow up studies were done since 2012.
    I began to treat my gut health by seeing my GP first and having a blood test for liver, kidney function etc. and general overall health. I sought the services of a dieticians/nutritionists armed with info and knowing my body was functioning well (within the constraints of ME/CFS) and began with a very long chat with the foodies … best thing I ever did. I still have ongoing gut health issues that appear in bouts every now and then due to PEM and me being a crashdummy. The difference now is, I am more aware of what my body is doing, compared to years of ongoing pain and suffering, major weight loss and other nasty symptoms. I feel like I have won a small battle and gained back some right to the way I feel.🤓

  • Hi @crashdummy Great points about finding the right foods that suit each persons digestion. It is absolutely all related! I certainly have to be careful what I eat too and I have heard a lot of people getting a lot of help from dieticians and nutritionists (they are also on my list to see) so definitely a good thing to bring up 🙂

    So happy to hear that this path has helped you so much too! Always so great to hear 😁

  • @Katt I have had IBS with my CFS for over 4 years, discomfort/pain most days. I work with my dietician who is amazing, she is a bit of everything! ( psychologist/motivator), has helped me more than anyone. I have followed a low FODMAP diet, which helps with “load”, but we have been trying a low histamine diet for the last few months . I think I have had some improvement but it is very strict so not sustainable long term. I am also taking sodium cromolyn which is linked with mast cells and histamine. I have been referred to Professor Pete Smith who is here on the Gold Coast (Immunologist/Allergist), currently waiting for an appointment. He apparently does a lot of work relating to IBS but I am cautious, in the end it feels to me it is all fatigue related.

  • @Looch thanks so much for the info! I have heard of some people having some success with the low FODMAP diet. I hadn't heard of the histamine diet before though. It does sound promising for you if you've seen some improvement, hopefully they can narrow it down to a more sustainable diet for you. I might do some further investigating too. Was there a test that lead the dietician down the histamine path or was it just something else to try to narrow down food intolerance with the IBS?

    Fingers crossed that the Immunologist has more insight for you! 🙂 I do understand the caution though but never hurts to keep exploring

  • @Katt Just another thing to explore, she felt some of my symptoms were similar to high histamine levels. I’ll let you know how I go. I didn’t find it easy to find current information online, happy to share what I have if you are interested.

  • @Looch always keen to hear what others have found 🙂

  • Over the decades I have tried everything and a plethora of medical tests, some to which I have major episodes and once ended up in another ward, from gastroenterologist to neurologist and under the care of now retired Professor Ray Garrick in the 1990s. My gut continues to decline in function. I have also toured the Centre of Digestive Diseases in Five Dock under Prof Borody and immunologist Prof Clancy. Nothing definitive has been found, a bit of this and that. I refused the RPAH and the elimination diet as back then, the 1990s I had two friends go down that road and come out allergic to everything. I am convinced my gut issue began the day I was born and with the dx of hEDS and MCAD and the ageing process, it is a matter of daily management. Two doctors have suggested a poo transplant which could help some things such as a better microbiome but it does not help valves, arteries, sphincters and ducts that malfunction due to hEDS. A ton of money wasted and more suffering endured than I should have in hindsight. A sick gut is IMHO a driver of ME/CFS.

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