This is the second in a series of blogs exploring potential gut treatments for chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and allied disorders.
The first fecal transplant study in ME/CFS was light on methodology and needs to be validated with a more rigorous study, but it got good results. Recently an ME/CFS patient reported on his remarkable recovery from a ten-year bout of ME/CFS with ten fecal transplant treatments.
While at least two fecal transplant studies are underway in ME/CFS, in Finland and Norway a much larger fecal transplant study, “Long-Term Follow-Up Results of Fecal Microbiota Transplantation for Irritable Bowel Syndrome: A Single-Center, Retrospective Study“, just finished up in irritable bowel syndrome (IBS).
IBS causes pain, bloating and constipation or diarrhea. It’s common in ME/CFS and fibromyalgia
IBS is the most commonly diagnosed gastrointestinal disorder and appears to be common in ME/CFS and fibromyalgia. Sixty percent of people with chronic fatigue syndrome reported IBS symptoms (abdominal discomfort) in one study. A similar percentage of people with fibromyalgia have been reported to have IBS symptoms, and up to 60% of IBS patients reportedly meet the criteria for fibromyalgia.
Irritable bowel syndrome (IBS) may not be as debilitating as chronic fatigue syndrome (ME/CFS) (but what is?), but it’s no walk in the park either. Characterized by repeated pain in the abdominal area that is often associated with bloating, constipation and/or diarrhea, fatigue is also common.
It causes a high illness burden, low quality of life, high rates of absenteeism at work, and high direct and indirect healthcare costs. One study stated that IBS “imposes a huge economic burden on patients and healthcare systems” and the IBS treatment market has been valued at over $2 billion a year. Demonstrating once again its remarkable negligence of the so-called “functional diseases”, the NIH does not even bother to track its IBS funding.
The Long-Term IBS Fecal Transplant Study
The authors of the “Long-Term Follow-Up Results of Fecal Microbiota Transplantation for Irritable Bowel Syndrome: A Single-Center, Retrospective Study” reported that efforts to treat IBS with probiotics and antibiotics have met with limited success.
While the study was a large and long one – following 227 people with IBS over five years – it was truly the tip of the iceberg: this Chinese group reported that it’s treated over 2,000 people with various gut disorders with fecal transplants over time.
First, an oral antibiotic (500mg vancomycin orally twice per day) was administered for 3 consecutive days. Next, the patients received 100 grams of fecal matter via colonoscopy, a nasointestinal tube, or via oral capsules for 6 consecutive days.
.jpg)
The Chinese study found high efficacy of fecal transplants in people with IBS.
Twelve months later, their total IBS-SSS score (abdominal distension/bloating, abdominal pain frequency, abdominal pain severity, satisfaction with bowel habits, and quality of life) was assessed. Bristol Stool Scale for IBS-C and IBS-D symptom and fatigue and quality of life questionnaires were also given.
If the score had dropped but was still high, another treatment was given. If no change had occurred, another treatment was not given. The study also assessed whether providing the fecal treatment with a nasointestinal tube, capsule, or colonoscopy produced better results. This went on for five years.
Past studies have found that fecal microbiota transplant (FMT) was more effective than placebo (even with high rates of placebo success (43%)). After 12 months, though, the placebo and transplant rates of success were similar, suggesting that the effects of the fecal transplants wore off over time.
The Chinese researchers concluded that the capsules worked best mostly because the participants tolerated them better. The study reported efficacy rates (ranging from @60-70%) over time. Fatigue and mental health scores improved by roughly 30-40% and were largely maintained over the five-year study. Periodic (apparently yearly) fecal transplants were generally needed to maintain efficacy, and capsules were the preferred choice.
The results, then, were good. A 2020 review, “Current status of fecal microbiota transplantation for irritable bowel syndrome“, however, reported that the results of fecal transplant studies in IBS are mixed with four positive studies and three negative ones. Concluding that the person donating the fecal matter had an outsized effect on the success of the poop transplants launched the researchers on the hunt for “super-donors”: people with the most effective poop. They do not believe having several donors – an approach some clinics use – is effective. Finding super-donors is the way to go.
They believe fecal matter super-donors were: 50 years of age, had never smoked, were not born using cesarean section, were not formula-fed, had not undergone frequent treatment with antibiotics, were regular exercisers, had a good diet, and were not first-degree relatives of the person getting the transplant.
They had high microbial diversity, which was particularly high in bacteria from the Firmicutes phylum – the same phylum that studies show people with ME/CFS are deficient in. If possible, their bacterial load should markedly differ from those being given the transplant.
Dose appears to matter and more seems to be better. Increasing the dose of the fecal transplant from 30g to 60g increased the response to FMT in IBS patients. (Seventy percent of the patients that did not respond to a 30g fecal transplant responded to a 60g fecal transplant.) How many doses are needed is not clear. While the ME/CFS studies underway appear to be delivering one dose, the retrospective ME/CFS study used six and the ME/CFS patient who recovered received ten (!)
In contrast to the Chinese study, the authors concluded that using capsules to deliver the transplants has not been effective but left open the possibility that other factors in the capsule studies could have impacted their results.
Side effects were generally mild and included cramping, pain, tenderness, diarrhea, and constipation that can occur but resolve within a few days.
While it’s not clear how fecal transplants are doing what they are doing, the evidence thus far suggests they are increasing short-chain fatty acids – which improve motility – and increase butyrate-producing bacteria. If that’s happening, they might be helpful in ME/CFS as both short-chain fatty acids and butyrate-producing bacteria have been found depleted in ME/CFS. (Short-chain fatty acids are produced when bacteria in the gut ferments indigestible foods and are an important energy source for cells in the gut. They have been called “crucial to gastrointestinal health“.) As noted in a previous blog, Gulf War Illness researchers have been using treatments that increase butyrate-producing bacteria in their mouse models.
Many fecal transplant studies are underway – some in diseases not traditionally associated with the gut such as depression, multiple sclerosis, Parkinson’s disease, and diabetes. As noted earlier, at least two fecal transplant studies in Finland and Norway are underway in ME/CFS
Conclusions
While it’s not at all clear how fecal transplants or other efforts to alter the gut microbiome will fare in ME/CFS, the gut-brain axis is a real thing. The gut flora appears able to even affect the functioning of the microglial cells that are largely responsible for neuroinflammation.
The Chinese study had several limitations but did suggest that fecal transplants may be able to improve gut and other symptoms such as fatigue over the long term. As the effects can decline over time, a fecal transplant or transplants may be needed yearly.
Another review reported mixed results with IBS fecal transplant studies, suggesting that having a good donor is critical, and laid out the characteristics of a good donor, providing the intriguing possibility of matching donors to patients by assessing their microbial composition.
At least 60 grams of poop appear to be needed to achieve a good effect across a broad swath of people. While the Chinese study found that capsules worked, other studies have found that colonoscopy/nasointestinal tubes worked better. How many fecal transplants are needed to have an effect is unclear. The Chinese study first used an antibiotic for three days, followed by fecal transplants for six days. Some studies provide only one fecal transplant.
It’s remarkable that one or several fecal transplants could possibly have long-term effects on IBS, fatigue, and other symptoms. Fecal transplants also interestingly appear to enhance the same elements of the gut flora that studies found depleted in ME/CFS. One ME/CFS patient reported that he’d completely recovered (after ten transplants). The first ME/CFS fecal transplant study, while not very rigorous, had good results, and two better produced studies are underway.
Very interesting and again hope of progress, but the fact that the gut microbiome may be implicated in other diseases is a reason for caution: Parkinsons disease is thought to start years before it becomes symptomatic and diagnosable, so how can you be sure a faecal transplant won’t add further health issues later on?
There is a link between pesticide and Parkinson’s disease.
Little attention is paid to pesticides and preservatives. And many more chemical substances that we ingest through food.
I think these substances are the cause of many diseases.
Many ME patients often suffered from intestinal complaints before their illness started.
A very large study should be done (double-blind?) If possible. With Fecal Transplants. I definitely think a subgroup will benefit from this treatment.
I don’t know if this treatment is expensive.
There’s a clinic that does it for $13k
You’re adding beneficial bacteria to a system dominated by unhealthy bacteria; i.e. you’re trying to restore a healthy gut ecosystem. So long as the donor is healthy and you’re getting good bacteria back into your system I don’t see why there would be any negative long-term consequences. The 5-year study only found benefits.
I had very negative (& permanent) consequences to trying probiotics. I tried them once for several months after getting ME, but prior to having any gut issues. They were recommended as totally safe & at least worth trying.
My gut issues STARTED after I got on the probiotics, & they also left me feeling totally drugged, foggy, sleepy & completely unable to function (which makes sense, since one of the by-products of them working is H2S, which is the same substance that causes some animals to hibernate. Healthy people have no issues with H2S because their bodies can easily eliminate it, but I have foudn that I am far from alone in having huge problems with getting rid of toxins & with probiotics.)
I also tried a different strain several yrs later, when my Dr encouraged me to do so. While I had never gotten rid of the gut issues that started with the other round (& they, in fact continued to get worse), takign another round of probiotics made them worse still & also caused the same drugged, etc feelings as before. Even my Dr agreed that I should never take them again.
So, yes, it is very possible that some with ME could have disastrous results with fecal transplants. And, just like with probtiotics, some could be helped by them.
You bring up an interesting point. With fecal transplants you’re receiving a wide and hopefully balanced array of healthy bacteria. With probiotics you’re adding a much smaller array of bacteria. I would bet that problems are more likely with using a small number of bacteria to drive change. In other words, when battling a dysfunction in the flora of a very complex system perhaps it’s best to match it with another complex treatment. That seems to be what’s happening with IVIG as well where you flood the blood with many different antibodies. Nobody is quite clear exactly what is happening in IVIG.
The same seems to be true with antioxidants. It’s now pretty clear that adding a single antioxidant can throw the rest off. You;re not alone with regard to problems with probiotics. I did a blog for this with Simmaron (https://www.healthrising.org/blog/2018/12/18/the-probiotic-paradox-when-probiotics-fail-or-even-do-harm-an-me-cfs-perspective/) – unfortunately that part of their website is down right now. Interesting about the hydrogen sulfide impact. We will be covering that.
Your experience certainly suggests that your gut plays a role in your ME/CFS – the question is how to safely manipulate it (??) We’re still really kind of flying blind.
Of course in ME/CFS every treatment seems to produce positive results in some people and negative – sometimes very negative – results in at least a few.
I think little is known about gut flora,
and the categories of bad vs good bacteria…
its more a reflection of language than an absolute truth.
Reminds of ‘good’ vs ‘bad’ cholesterol…
And doctors in general don’t get cholesterol and its protective role.
I had moderate CFS for 5 years . It was in many ways gut related, I felt like I had no energy, but I felt it like I did have it from my stomach, my gut all this time. 4 years ago I did a fecal transplant all on my own, with the help of my cousin, a very healthy person. I did it three days in a row. Initially I wanted to do it for 10 days in a row, but because I didn’t feel much change during those days, I just said I’m going to quit the experiment on myself. But the nice surprise came gradually , a few weeks later. Gradually I felt like somehow something works in there, it detoxifies much faster by going to the toilet more often as if all the ‘poison’ inside goes out. And much much more energy on the outside too. Prior to that I tried all the probiotics available on market, all lactobacillus, bifidobacteria , even mutaflor or clostridium butyricum and they made the problem worse. And all the antioxidants and vitamins which did not help at all. The only probiotic that did help just a little bit , that meaning 1 out of 5 was prosymbioflor which is practically dead ecoli and enterococus. But with the live enterococus and ecoli I felt worse. Somehow in my humble opinion I think it has a lot to do with the H2S in the gut. Before the fecal transplant somehow I couldn’t detoxify that, it didn’t go out . After, all the toxic waste went out entirely, even the H2S. Maybe the fecal transplant worked not because of the healty bacteria that came into the system, but because of the healthy bacteriophages which detoxify bacteria waste much faster. Anyway now, 4 years after the fecal transplant somehow it does’t work like one year after, I feel like I cannot detoxify all the waste , but I’m still better than before the FMT. If the things go worse for me, at least I know the right recipee for me, doing another FMT from my cousin.
How did you do it?
I don’t understand why the beneficial organisms can be identified and cultured. This would be the new probiotic, easy, safe and affordable.
Kefir works well for me ($4 per bottle) with some colostrum, a little Vitamin A and D.
The Europeans use beneficial e-coli which is unheard of in the US – BEC is the primary microbe that holds the other probiotic strains in the gut.
Hi Cort,
First, you are such a gift to this community, thank you for the amazing quality and your extensive output.
Secondly, I’m surprised Ken Lassesen hasn’t been mentioned, another interview could bring a greater insight to this ongoing discussion.
Blessings and peace.
Thanks David. Ken has done great work and I’ve interviewed him in the past. I don’t know if he’s onto fecal transplants or not but he’s a great resource 🙂
@David Starling and Cort Johnson
Ken Lassesen is a horrible source of information. He does not do due diligence in his research and frequently spreads harmful misinformation.
Here’s an example for FMT: https://web.archive.org/web/20210525225811/https://old.reddit.com/r/HumanMicrobiome/comments/nkstr1/critical_response_to_ken_lassesens_may_2021_post/
Ah, Maximilian Kohler, I see you are still using your usual source
“(debunked in that same wiki page)” and not published medical journals… but then why in the world would you need to read journals…. you have described yourself as:
“I’m one of the most knowledgeable people in the world on FMT, the gut microbiome, and human health and development”
Clearly, you should get the Nobel Prize and be invited to become a professor at Harvard….
I recall Karl Morten talking briefly about fecal transplants in a recent Webinair. He stressed the importance of added butyrate, from memory, and wondered if the studies that failed had not included this. I’m sorry I can’t add any more details. It was in the Q&A section and I was tired and rather zoned out.
The butyrate connection makes sense as does the search for “super-donors” 🙂
I have a relative who recieved a fecal transplant. She had been dealing with intestinal issues for many years. She said the results were amazing. She noticed a difference immediately. Her life is now changed for the better. Interestingly, there is a “poop bank” in Wisconsin where fecal matter is stored. My relative said that somehow she was matched with a donor, but I don’t know exactly what that entails. Though she did not have ME/CFS, it was so significant to her life that I would give anything to try it.
I started taking Sodium Butyrate supplements about 2 months ago, and overnight, my IBS symptoms were dramatically reduced. It is not entirely consistent, but I NEVER have the worst extremes of IBS anymore, and quite often, I am in the “normal” and “healthy” category, so far as my gut is concerned. I seem to be a bit less tired, but that may not be causal, and my energy level is not consistent anyway. A little more time may reveal a consistent improvement.
Didn’t know that you could take butyrate supplements – thanks!
Can you please tell us what brand & source you are using?
Thanks so much 🙂
Butter and coconut oil contain butyrate.
WOW PAMELA. Thanks for this bit of interesting info. Easy to try.
Invest in MER need funds to get their FMT study moving.
Please vote for them, only a few hours left!
https://mygivingcircle.org/invest-in-me-research?fbclid=IwAR1glPYFkQoiychZrbIV-clsvZZx_2A_ZCUda2S86gcyG45rWnyLMDJb1lQ
http://www.investinme.org/ce-blog-2102-01.shtml
http://www.investinme.org/ce-proj3.shtml
http://www.investinme.org/ce-index.shtml?fbclid=IwAR0kjmB8088nhz-ooFLqtCBziOgsr7FAo5FNidZTZ7vhfdykZwRH9zBygM8
@Ali
That’s almost certainly going to be a massive waste of money. Hundreds of FMT clinical trials have been failing for years because the people running them are ignorant and incompetent, and continually ignore blatantly important factors such as donor quality. The word “donor” isn’t even mentioned once in either of those investinme links. Those trials are almost guaranteed to fail for the same reasons.
I’ve been writing about this for years – https://old.reddit.com/r/fecaltransplant/comments/ax9vxe/another_letter_to_the_nih_and_fda_cancer_patients/ – and recently have been able to start up my own project to bypass all of this failure and directly acquire high quality donors and make them freely available: https://www.humanmicrobes.org/
Have the donors been vaccinated, and if so, what effect does that have on those who are the receivers? Could they be at risk – knowingly or unknowingly, of adverse side effects?
The researchers didn’t seem to think or consider whether vaccination had an effect on donor efficacy.
Adverse covid vaccine effects are an important current concern of many as numbers increase. Vaccine materials are known to enter the stool through shedding etc. I wasn’t speaking as much of the donor efficacy, tho’ that is important, but of the impact of fecal material potentially carrying vaccine shedding. I wonder why this factor was not considered to have an impact. Acquiring covid from stool could lead to “long-haulers” and other illnesses , so this becomes a complicating factor that needs to be considered. Vaccines help some with “long-haulers” but also have the potential to harm others. Researchers are responsible for thinking about all the factors impacting results.
Thanks Carol – had not thought of that. I know that some groups do testing for viruses – not sure if they’re testing for COVID
We tried faecal transplant for my son who has severe CFS. He did have some gut bacteria imbalance, but did not have any gut-related CFS symptoms.
Unfortunately, the faecal transplant did not help him, or have any negative consequences. The process of having to do 10 faecal transplants was a little unpleasant though. The things we do for our children 🙂
It didn’t work, possibly because 10 was not enough. Some report improvements many months of doing it almost daily.
Thanks Cort interesting studies. Very often IBS is actually Sibo small intestinal bacterial overgrowth in M.E patients.
Yes, indeed. Dr Chedda said she found it ubiquitous in ME/CFS
https://www.healthrising.org/blog/2019/08/26/bela-chedda-chronic-fatigue-syndrome-center-complex-diseases/
I suffered with IBS and Interstitial Cystitis, constantly since being diagnosed with ME/CFS. Last year I went on a pretty stringent KETO diet and the IBS and Interstitial Cystitis magically went away. After going off the diet, the IBS and Interstitial Cystitis stayed away for about six months and then came back again. I am planning to go back on KETO soon.
Did the Chinese study do a run of antibiotics only?
How can you separate the effects of the antibiotic vs the transplant?
ehn?
I wonder what the effect of antibiotics alone could have.
The other teams did not use antibiotics then?
Antibiotics are commonly used by some to clear out the gut during gut flora enhancement. I don’t know if the others used it or not. One study suggested that doing so is a mistake as it actually takes the gut longer to recover from that and build back up.
I wonder what effect do the antibiotics alone confer, and I suppose the type of antibiotic could elicit a different response, perhaps tied to the individual’s make up or perhaps not.
My impression is studies need to be a lot more rigorous in looking at and controlling variables.
I wonder if all the studies track which kind of antibiotics they use – potentially they could be comparing apples to oranges, so the conclusions reached should apply ONLY to the substances used, not extrapolated to generalizations until proven to be so.
Etc.
I think FMTs will be critical to getting a large cohort of ME/CFSers out of this. I personally believe my case is strongly gut driven, if not entirely.
I’m excited to see some of this point in the direction that some patients have been fruitlessly vocalizing for years—prioritizing vaginally-born, breast-fed, healthfully-fed donors with low antibiotic use. I wish they’d continue onto true superdonor status—comprehensive health screens, lower age, and an unbroken maternal line of nurtured ancestral microbiome.
We need to point out for people that Taymount IS one of the clinics who mixes donors—this is the clinic the chap featured used. He is lucky it worked so well for him, but I wouldn’t expect others to get those kinds of results. Honestly, Taymount seems a great IDEA but executed quite poorly.
I also wish we’d quit emphasizing that the treatment doesn’t last forever. And? Pills for other conditions ALSO only work if you keep taking them. I think most ME/CFS sufferers would prefer taking a daily crapsule over bemoaning the fact it’s not a one and done. (Although of course a one and done is preferable.)
I don’t see the value in the vancomycin wash beforehand—in fact, I could see that making the intestine less hospitable to its new cohort of bacteria.
At the end of the day, the greatest struggle to me seems to be finding that elusive ancestral microbiome, handed down through generations, containing all the bacteria and viruses and fungi needed to survive and evolve. Not only is it rare—too many lines have been broken by a c-section, formula feeding, or antibiotics so it’s not passed from baby to mother…but then you have to find someone willing to help.
The faster we can commercialize this effort PROPERLY to provide the advertising and legal protection patients and donors need, the better.
In the meantime, I have to salute Michael John Harrop for the citizen work he has done to pull HumanMicrobes.org together. I think it could be truly instrumental for getting a chunk of us out.
What makes you say that Taymount is poorly executed? In what ways? Why wouldn’t you expect other MEeps to respond similarly to that successful individual?
hi cort,
long time ago, you wrote a blog about someone who took verry much of all kinds of probiotics (i though also prebiotics but can me wrong) and she got healthy again!
i do not understand how this copes into your article now.
even sometimes thinking doing the same…
do you have any clue how it fits?
Yes – she swamped her gut with probiotics and recovered. She took so many that I wonder if she in some way duplicated what’s happening with fermented foods.
We’re all different, though. Probiotics can definitely help some people and she was one of them.
https://www.healthrising.org/blog/2016/01/07/probiotics-cure-my-chronic-fatigue-syndrome/
yes, that my gut is no longer ok, i know fore shure! with the half year of antibiotics! such a decline and so many more symptoms!!! honestly, would you try to do what she did? I read on 25%ME group some take probiotics, others get, was it MCAC from it, for shure, some react bad.
And the poop from the most healthy person, can only be researched on say fungi, virus, bacteria, etc what science now can and knows so it is with a risk to…sadly enough!
hi cort, i read the article again. thanks for the link. but in the article are links to read further and i allways come (even for her blog)on wixx.com payable.
is this normal? long time ago the links worked. i would pay for it but do not know the wixx.com and am even not shure the link and blog would be their readable. i hope you read my question and know what is going on.
thanks!!!
So I think I may have had ME/CFS for many years, just very mild. My first bad sickness time was about 7-8 years ago, after the H1N1 Flu. My taste/smell changed, and I could not lose weight no matter what I did. Long story short, I ended up diagnosed with an eating disorder. Compulsive overeating. I had years of therapy for that and to boost my self esteem as I had lost my mother around the same time. I ended up getting bariatric surgery. I think this is what helped me get better. They literally cut my stomach into pieces and made a pouch and sewed it back together. Yes, my calorie limit was drastically reduced and that helped to lose weight, but my taste/smell stuff got better, too. In the 6 years after that, I learned portion size, and the eating disorder thoughts stopped. until March 2020 when I got covid. I immediately noticed I was having sugar cravings again, but didn’t realize my taste/smell was affected until 1 day when I was making a frozen pizza in the oven and didn’t smell it burning. This was around the same time people were saying Long Covid was causing taste/smell issues in some people. So I’m not sure if this helps anything, but I thought I would put it out there. I even found a couple of my facebook posts from 2014 where I said a certain yogurt tasted nasty and a frozen meal tasted like soap. right now, everything tastes like metal, or chemicals. unless it’s got sugar in it, then it tastes ok. I now have ME/CFS and a zillion other symptoms. But this is the sickest I’ve been my entire life. Also, I’ve always had IBS. Nothing seems to make my bowels move. i’m not “constipated” like normal people who get backed up and then have hard stools. I mean my body digests the food and then hangs onto it until i take laxatives. my urinary system is the same way. it doesn’t seem like my kidneys are processing liquid fast enough. Like my body hangs onto it. and i’ve had multiple kidney stones & even surgery for a couple of them. Not sure if any of this pertains to the article but feel free to ask me questions!
The articles that Cort writes are well done and so glad Cort covers such a wide range of sub- topics.
i find that the discussions in comments sections are often almost akin to another whole article in info provided and ideas expressed.
my hope is that the steps will go like this: more gut-brain studies gain more BRAIN researchers
more brain researchers will draw interest from more brain researchers, who each have their own intensive knowledge in minute parts of the brain or brain processed.
so that one day articles like the following— which are indepth looks at brain “mechanics”—will be written about cfs/me
“Enhanced Activity of Alzheimer Disease-associated Variant of Protein Kinase Cα Drives Cognitive Decline
Gema Lorden, Jacob Wozniak, Kim Doré, Lara Dozier, Chelsea Cates-Gatto, Gentry Patrick, David Gonzalez, Amanda Roberts, Rudolph Tanzi, Alexandra Newton”
at site:
https://www.researchsquare.com/article/rs-894083/v1
or
“Published: 06 July 2018
Spinal PKCα inhibition and gene-silencing for pain relief: AMPAR trafficking at the synapses between primary afferents and sensory interneurons
Olga Kopach, Volodymyr Krotov, […]Nana Voitenko ”
at site:
https://www.nature.com/articles/s41598-018-28512-9
Two weeks ago I got ten Fecal Transplants at the IPPM in Slovakai. The IPPM belonged to the Taymount clinic and the procedure is the same. Since the FMT I have more energy and feel less sick. I decided on the treatment because I fell ill after diarrhea and, in addition to ME/CFS, also suffer from mast cell actiavation syndrome and IBS. Surprisingly the Mcas and the IBS didn´t improve up to now. But at the IPPM I have been told, that a final evaluation is only possible after three months. If my health improvement continues, it was definitely worth trying.
The first time I read about the possibility of getting FMT without a diagnosis of Chlostridium difficile was on healthrising. Thank you very much, Cort, for your outstanding commitment.
Good luck Jutta!
The fecal transplants do take several kicks to kick it – the lowest efficacy rate in the Chinese study was for the first assessment!
Please let us know how it goes. 🙂
waw, so glad for you!!! wished they do it here. would certainly try it. can you somehow describe how much more energy you have and what feeling less sick (wich symptoms) declined or went away? do you need to get every , i do not know how much time, faezcal transplants again or does it last the effect or is it wait and see? wish you very good luck!!!
More energy: On Bell’s scale, I climbed from 30 to 40 points. That doesn’t sound like a lot, but it means I get more done in everyday life and can do physiotherapy.
I would describe feeling sick as a mixture between feeling sick and feeling miserable. I can’t do anything then. Barely having that excruciating feeling is a huge improvement for me.
In addition to FMT, I should take Bimuno, butyrate, humanic acid, probiotics and prebiotics. Because of the Mcas, I can only tolerate the probiotics and prebiotics, but none of them Bimuno.
In any case, nutrition is very important, but the Mcas sets strict limits here too.
Thanks to Cort for the blog. I have read 2 good books which discuss Fecal therapy.Fiber Fueled by Dr Will Bulsiewicz and The Gut Balance Revolution by Dr Gerald Mullin.
According to Dr B “all health and disease starts in the gut….”Butaccording to himwe need to change our diet after FMT so that the new microbiome can be sustained. “My predictionis that it will be mre effectivefor acute illnesses (like infection) than for chronic illnesses and that disetary changea are needed to support the newly received microbiota”.
Both vooks argue that we need to raise our daily intake og fibre to 100g a day like our ancestors lived on
Thanks Wallace for the comment. I too have heard that the recipient of FMT needs to try and adopt a similar diet to the donor so that the microbes can get their anticipated food sources. It seems obvious when someone points it out.
I have seen interviews with Dr B and was quite impressed.
LindaB
They differ on the usefulness of Vinegar and here i take the side of Dr Mullin who declares that Vinegar is a Superfood with up to 50 critiical nutrients in raw Apple Vinegar.
Dr Michael Greger on the net hs written several articles on how Vinegar boosts AMPK similar to tobacco.
Cort did a blog in 2015 on AMPK and CFS.
Surely we can change our micrtobiome by diet alone?
I have long thought that fecal transplants would be the key to curing multiple diseases, including CFS and FMS. My own theory is that whatever the disorder of your gut biome is would dictate what disease you come down with – lupus, MS, arthritis, etc.
The start to my own disease process was having a tapeworm at the age of 18. After that I got muscle pains and IBS symptoms. I was pretty high functioning through my 30’s and then had back to back bronchitis episodes, 6 months apart, in my early 40’s, for which I was treated with Augmentin. That tipped me into full blown fibromyalgia. I, too have been carb and sugar addicted and have tried multiple different diets. Eight month anti yeast grew out the fungus in my toenails. I year on gluten free vegan helped me lose 50 lbs and reduced a lot of my symptoms but it caused a lot of food allergies and I began to feel protein starved. I tried first stage GAPS for 4 months and lost 20 lbs, but I didn’t do it long enough. It was very difficult to maintain. I also tried a 5 day juice fast and felt like a 30 year old at the end of 5 days, but I got bruising over all of my body. I’m on blood thinners ( Plavix) due to my stent. The True North Health Clinic (they do supervised fasting) in Santa Rosa says that fasting thins the blood, making it incompatible with blood thinner use.
I have used multiple probiotics over the years. I try to use ones that contain multiple different strands, in order to increase my mix. I always feel better when I take one. I’ve also eaten many different fermented foods, including home made kefir made from raw milk. Recently I met Deanna MacCormack, who has a website called Existup. She is a nutritional therapist. She cures people with cancer through diet. She told me to drink her green lemonade. In the few months since I tried it, it has become necessary to my existence. It contains aloe Vera juice, lemon juice, liquid Chlorophyll concentrate, sour cherry juice, and soda water. She told me what you add back is as important as what you leave out.
But all this effort has not led to the healing of my gut that I think is key to full healing . Fecal transplants seem to me to be the way to go. I would love to do one!
One more note, a little off topic but I need to say that pulsed electromagnetic field therapy works. It reduces pain. I’ve had two different treatments – Ondamed and iMRS. Last month I had the latter from a friend who has the equipment. It improved my POTS for two weeks, and a spot treatment on my knee took the pain out of it for 3 days, and has reduced the pain for a whole month. Read the book PEMF, The 5th element of health by Bryant A. Meyers, available on Amazon.
Lastly, I want to thank you, Cort, for your hard work, your expertise, and the encouragement you give us.
a 2021 study on fecal transplants in mice showed positive benefits:
“Fecal Transplant Restores Youth to Old Mice
Roni Dengler, PhD
Aug 30, 2021”
“Microbiota from young mice reversed some aspects of aging and enhanced brain health in aged mice.”
https://www.the-scientist.com/sponsored-article/fecal-transplant-restores-youth-to-old-mice-69137
who knows, perhaps thee is a yet unknown vitamin produced in microbiota–feces– (vitamin F, lol) that is produced by young gut biomes??
it would explain why the child described by dad in earlier comments did not respond, and possibly why some older people —-(more depleted)– might respond. But whether the response is specific to cfs me bain fog or microbiome deficient age deficits would be an large unknown
Have there been any more studies or case reports of Rifaxamin and flagyl or neomycin in the treatment of SIBO in ME/CFS?
Since toxic exposures stored in the body are released in feces as well as urine and sweat, it could be very difficult to find fecal donors who have lived in pristine environments all of their lives.
https://www.cdc.gov/exposurereport/index.html
The American Gut Project (also guts from other places) has been going on for a long time. Citizen scientists submit a poop sample and a $99 donation to the Project and get it analyzed. I believe participants are then given a graph as to how their biome compares to others.
Here is a 2018 review of their findings; https://anesthesiology.duke.edu/?p=846744
There might be more information out there in Googleland about this project, but what this study emphasizes is that those with the most healthy guts have 40 or more different plant based foods in their diet. There is more which I won’t go into here…
My partner who is a professional landscaper and master gardener just commented that plants thrive much better in a mixed plant environment rather than by themselves. The body is much like the planet. Think of a lovely meadow…
Correction to what I just posted; those with the most diverse microbiome ate 30 (not 40) different plant types per week.
To participate; AmericanGut.org
One thing they discovered is that the perfect diet for one (example used was fiber) is not the perfect diet for all… but of course you already probably knew that…
I have had about 20 transplants in 2 months. I have done it myself and had a 100% healthy donor. I had no other options. Something happened, because my poo smelled different after that. (still does) Unfortunately it made no difference for my ME/CFS. Maybe because it did not get deep enough into the bowels?
Is there anywhere to go in the USA to get fecal transplants now?
The local group leader for the Central Florida ME/CFS group just posted this excellent overview of ME/CFS on the Mayo Clinical Proceedings site.
Dr. Bateman is a lead author.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
Hi Cort, thank you for another very interesting report. I think you have jogged my memory regarding butyrate as being essential for a healthy gut and maybe a lot more too.
I have had daily issues with constipation for around 20 years, I think it started after a bad bout of Campylobacter poisoning in 1998, My ME/CFS started one year later.
I have had several stool tests done by various good companies over the years and they have ALWAYS SHOWN LOW BUTYRATE and low Firmicutes too. The strange thing is that levels of the other Short Chain Fatty Acids are always good and I do have an excellent varied diet.
For the past 3 months I have been taking daily well researched probiotics by Optibac plus probiotics including FOS, Partially Hydrogenated Guar Gum and GOS but the constipation hasn’t improved at all. However after adding a Butyrate supplement by Body Bio (2 daily) it did improve and only caused a problem if I had a dose of codeine for migraine. At first I had purchased another supplement of Butyrate which contained a lot less of it and this didn’t have any noticeable beneficial effect. Both supplements I bought from Amazon UK btw.
The past two week I had run into daily chronic migraines again so I stopped lots of supplements in case these were the cause and one of the ones I stopped was the Butyrate. Guess what – within 48 hours the daily constipation was back! Reading your article has solved the problem for me I think so I am very grateful and of course I am restarting the Butyrate.
I have stuck with the FOS, GOS and PHGG throughout and the probiotics but without the butyrate they did nothing for the constipation.
My diversity has been very good by the way and the health index was very high so looking generally at my last stool test done end of May anybody would think I was very healthy so I think it is rather looking like Butyrate actually plays a massive part in a healthy gut at the very least but I also think a high fibre diet is needed too although this has to be built up slowly of course.
Recently they found I don’t make enough antibodies to polysaccharide encoated bacteria.
“Specific polysaccharide antibody deficiency” or SPAD, part of PID’s.
Which means you’re more vulnerable for meningitis and pneumonia (pneumococcus)
After this finding, I went and looked at bacteria in my lab results (blood and 3 stool tests).
Streptococcus, clostridium family bacteria, … all ‘encoated bacteria’ which are too high.
I have severe gut dysbioses with little diversity and almost none of the beneficial bifido’s etc.
I wonder (and doubt) whether a faecal transplant would or could be of value longterm for anyone having a primary immune deficiency like mine.
For all we know, this PID subclass could explain (in some people) having IBS, SIBO, high D-lactate … even chronic inflammatory bowel disease.
Did they EVER research this possible link?
I did fmt for MECFS, 10 days, nasal and colon, cdd Sydney . For me no noticeable benefit. I’m still partly a believer. The problem they are still working on is elimination of biofilm which is preventing flora from implanting long term. I’m keen to do again when process is improved but cost was 14000 approx.
Thanks for passing your experience on Frey. Good luck with everything.
I did 10 day FMT nearly 3 years ago now, I didn’t feel a difference… but my naps, which would usually last 3+ hours are now 1 hour long, unless I’ve not slept enough the night before – this changed happened fairly quickly after and has stayed that way so far. I also got some vague allergy from it in spring (runny nose) the year I did it but I’ve mostly been fine otherwise. This was positive enough to make me want to try more (although Taymount doesn’t use superdonors afaik, and I wish I could try that route) but then Covid happened.
You could try it DIY as many are. Join the FB groups!