Tens of billions of dollars ($36 billion in 2015) are spent on probiotics in the U.S. every year. Two recent Isreali studies, though, suggest that some of that money is being spent in vain.
The study revealed that while some people may benefit from probiotics, others likely do not and some may even get worse. Plus, the standard test for probiotic effectiveness – taking a stool sample – failed dramatically.
Find out why some people just don’t benefit from probiotics, and who might, in a Simmaron Research Foundation sponsored post
The Probiotic Paradox: When Probiotics Fail or Even Do Harm – an ME/CFS Perspective
This is just the news I needed. Have used Ken Lassesen’s model for two months and seen my microbial diversity drop from 98th to 50-something percentile. It’s also been a bit of a light globe moment, as some symptoms have worsened very slightly and I’ve caught a major case of CBF (or amotivation, we’ll sort of, not the strictest dictionary definition tho). So I suspect that I’m in the resisters group.
My final method of approach to the gut microbiome was going to be to FMT from a sibling. This article now makes me ask if this would be the same result as probiotics? IE, seeing as it’s not my poop, would my gut resist colonisation?
Anyway, thanks for another great article. Time for me to pony up and make a donation 🙂
Thanks ManShadow.
It’s an eye-opener isn’t it? Yet a lot of people take probiotics get nothing out of them….A lot more to learn here. I have no doubt that gut manipulation is in the cards for ME/CFS/FM but finding out just how to manipulate it is going to take some more time.
My gut symptoms (pain, BM consistency, FODMAP intolerance) improved hugely over the last year and I also went from moderate CFS/ME to mild. So I believe there is definitely something in there to be discovered. Looking back over my daily records of diet, sleep quality, BM rating (gross! Haha) there is definite correlation around the improvement of gut symptoms and energy levels. Sleep quality (number of wakings per night) did not improve but I did start feeling refreshed in the morning (such a relief!!).
The improvement occurred prior to the probiotic protocol and were not reversed by it, so maybe gut barrier was significant in my case, and microbiome not so much…
Ha! BM rating – 🙂 that’s a great idea. Here I am with extensive bloating after eating lots of cooked vegies. Something in there was bothering me.
Did a FODMAPS diet make the difference?
Removing FODMAPs helped with pain (pretty much everything I ate was causing it), but it didn’t necessarily correct the BMs. A few months later I did the Failsafe diet (similar to FODMAP, starts with exclusions and progresses to ‘challenges’ with specific natural food chemicals) and things came good about 2 months in. Now I can have some of the old trigger foods, including garlic and chilli, with no symptoms.
I’ve also had the last 12 months off from work, so the more peaceful existence has probably been of benefit also.
FODMAP and Failsafe were both done with the aid of a dietitian. Given the high amount of restricted foods between the two diets, I was eating 200-300 grams per day of both potatoes and brown rice. So it’s also possible that the resistant starch helped mend my gut barrier.
Anyway, of the three (FODMAP, Failsafe and RS) I can definitively say that FODMAP helped, and with some confidence that RS did also.
As usual with multiple changes, it difficult to be certain.
My fellow Man (I assume) My FMT protocol story is freely available online and corroborates Stanford’s ME\CFS research as shown at the recent symposium as well as why clinical and at home FMT doesn’t always work. I have recovered from a bed ridden state for several years and I teach what I did at our2ndbrain.com and even give video chat for free to fellow sufferers if you want help.
Please tell me how to get these diets. Fodmap failsafe RS
Simply plug FODMAPS into the search bar of this website and some stuff will pop up.
Hey guys, I made my own FMT capsules at home with a lab. Skype me at username KnowApr if you would like to know what I did. I have been free of ME/CFS for about 8 months after 4.5 years with it.
I ‘ve been waiting for this topic to appear. I am a mecfs sufferer which includes gut issues. I have tried numerous probiotics and all of them create an intolerable state, so I am forced to stop. Symtoms are extreme gas and bloating that only gets worse. Searching the internet there is no reference to this association although the connection between mecfs and the gut are slowly beginning to be explored.
Since June I have been on a diet, removing bread, pasta, potatoes and basically any grains. My former gassy state has been greatly reduced if not totally eliminated. I eat white meat, eggs, dates, almonds, alot of vegetables and drink plenty water.
I have been allergic to milk since 1999. It coincides with when I was under extreme stress and I reckon was the start of my mecfs journey. It has got much worse over the past couple of years. I was made redundant and thought what a great opportunity to become more active…so wrong. My own GET trial, where I have proved to myself how damaging it is, as I have deteriorated. I am learning the hard way to find my limit. I just keep failing. The most recent example, I helped my sister plunge her sink for 10 minutes. The result a two week crash. Hoping to feel some energy returning very soon. It is a very hard existence. Fortunately my wife works, as I continue my never ending recovery! Sorry to go off topic.
Hard times indeed, Nico. Please hang in there. You are not alone. Lots of guys with these disorders are flabbergasted that they can’t do the work or sometimes any work at all. It’s no fun! Take care of yourself!
I’ve had a 2-month setback due to GET, it was delivered by a Exercise Physiologist with knowledge of fatigue, but nothing of CFS/ME.pushed me from mild to moderate, with 10 days housebound and another 6-8 weeks of heavy fatigue and mental fog. First and only time I’ve crossed the threshold to moderate CFS/ME.
I went back for a second round with a different EP (for insurance purposes), can’t say it was a breakthrough for me, but one thing that I think is useful, is keeping my HR below a certain range. Or minimising any time spent in higher ranges. Plunging a sink for 10 mins at a high HR is definitely a potential trigger in my experience. A safer approach, would be to plunge til HR reaches x and then rest. Repeat the cycle til job complete and it will help avoid or minimise a crash. Discovering your ‘x’ is the tricky part.
For me, it involved increasing my daily walking time from 15 to 30 mins over 6 weeks. The formula was, if at the end of the week you don’t feel worse, increase walking duration by 0% – 20%.
Once at 30 mins per day, increase walking intensity (but only for 3 days per week, on the other 4 just walk at usual pace) and keep track of HR using a HR monitor. The goal being to keep HR within a particular range of 20 beats.
As with walking duration, increase HR zone weekly if not feeling worse. Repeat until fatigue worsens (keeping other potential triggers in mind) and when it does, you have discovered your max HR range.
Once you know the max range, you can apply it in everyday situations/activities to help avoid/reduce/minimise crashes.
Soz for long post, I realise probably not the right thread, but it is a useful tool imo.
Very nice Man Shadow.
One way to assess if you overdo is to check heart rate upon waking. If its, I can’t remember exactly what, 10% or so below or above your baseline, you’ve overdone it.
our2ndbrain.com shows FMT at home and will even give video chat for free to fellow sufferers. ME/CFS is about to become obsolete.
I just put down $50 for the new Seed “synbiotic.” It is slickly marketed, and I am skeptical. I reasoned “well it can’t hurt” when I bought it, but I can’t be so sure, can I? I think we all do our best to balance our desperation with reason.
I really want to read this article but it seems to be gone. Do I need to donate in order to access the article? Thanks
Yes I believe it will. The Simmaron website is under construction at the moment.