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My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

Messages
26
My ME/CFS expert, Dr. Susan Levine, said she is very excited about fecal transplants (FMT) being a promising future treatment. I have been very interested in trying this for a while given I also have IBS and my ME/CFS started with GI symptoms. I know FMTs are something that has been talked about and tried in ME/CFS for a while, but the field is continuing to grow every year with a better understanding of what a healthy microbiome should look like. Dr. Levine said it is crucial to get an excellent donor, which can be a very hard task, but this should get easier in the future. Maybe this is why she considered it a "future treatment."

Does anyone have experience with this and know where to try it? I understand you can either do it at a clinic or diy. I think diy is too risky for me and it would be really hard for me to find a "perfect" donor that makes up only 0.1% of the population. I am willing to pay a fairly large amount of money for a very reputable clinic/donor, and if anyone has any information please share!

One last note: Dr. Levine, who has been treating ME/CFS for decades, told me she is very excited and optimistic about the future of ME/CFS treatments currently! Who knows what information she has that we don't, but I thought I would share this.
 

katabasis

Senior Member
Messages
157
I also see Dr. Levine, and coincidentally I have also received an FMT, though not for ME/CFS - rather to treat a severe, recurrent C. Diff infection. For that purpose, it was extremely effective. I did not see any improvement in my CFS symptoms after the FMT, though it's possible I may have, were my body not totally wrecked by the C. Diff inflammation, and by not having eaten any food for nearly a month.

I do strongly suspect that GI disturbances are a key element in ME/CFS pathogenesis for many (though probably not all) sufferers. I notice that my GI symptoms, which are currently something you could label as IBS, are strongly correlated with my CFS symptoms. And this is not merely that my GI symptoms are a downstream effect of my CFS - my CFS symptoms worsen if I eat something that cause indigestion, for instance. And strangely, it often occurs that my CFS symptoms abruptly improve or worsen immediately prior to or after a bowel movement.

I would recommend not getting an FMT for the time being, even if it holds a lot of promise as a treatment. When it comes down to it, there is no such thing as a reputable clinic or donor when it comes to finding a 'perfect' donor. Even when I received an FMT for my C. Diff, working through the most official channels possible, the screening criteria were extremely lax compared to what I think would be warranted for identifying 'perfect' donors. And of course, we don't really even understand what makes a donor perfect - once there is some real, objective benchmark for donor quality then maybe it might make sense to do FMT for ME/CFS.

In the meantime, it might be worth looking into probiotics. I've had some limited success with 'Innovix Mood Probiotics', which contains two strains that have been shown in one study to modulate the HPA axis, by sensitizing glucocorticoid receptors. The impact of gut flora on systemic endocrine function is, I think, sorely underappreciated. Probiotics are a much safer way to experiment with this theory without the high cost, inconvenience, and potentially drastic adverse effects of an FMT.
 
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Rufous McKinney

Senior Member
Messages
13,467
There are some threads around here from past folks interested in the topic. I wonder if this one person who was very serious ever got an FMT treatment? I'll try to find that (later)

I previously considered my grandaughter as a possible donor. She has such a healthy immune system, and genetic relative seemed: like a possibility.

Then it seemed she has a different blood type. Well, I now have a new grandaugther who is my blood type. I just might someday try a simple DIY job.

FYI:


https://www.frontiersin.org/articles/10.3389/fmedt.2022.961569/full

Review Article from Sept 22.

SYSTEMATIC REVIEW article
Front. Med. Technol., 22 September 2022
Sec. Medtech Data Analytics
https://doi.org/10.3389/fmedt.2022.961569
https://www.frontiersin.org/research-topics/31191#articles
Orchestrating the fecal microbiota transplantation: Current technological advancements and potential biomedical application
 

hmnr asg

Senior Member
Messages
565
I just want to add that my CFS also started with GI symptoms. 13 years ago I suddenly started getting massive bloating and IBS-C symptoms. At the time I was very active and athletic, but suddenly I was so bloated that I looked pregnant!
The fatigue started two weeks later after the sudden GI symptoms. It was so bad that my doctor suspected colon cancer and I even did a colonoscopy.
I have always known that my GI was the trigger for my CFS. I have tried countless probiotics and also several rounds of rifaximin with no luck.
I am very hopeful for this FMT as a potential treatment down the road. For now, I guess the wait continues...
 

hapl808

Senior Member
Messages
2,216
I just want to add that my CFS also started with GI symptoms. 13 years ago I suddenly started getting massive bloating and IBS-C symptoms. At the time I was very active and athletic, but suddenly I was so bloated that I looked pregnant!
The fatigue started two weeks later after the sudden GI symptoms. It was so bad that my doctor suspected colon cancer and I even did a colonoscopy.
I have always known that my GI was the trigger for my CFS. I have tried countless probiotics and also several rounds of rifaximin with no luck.

Pretty much the same, but GI symptoms started after a viral illness overseas. Fatigue and everything else followed. Definitely still seems tied to GI stuff. I've also tried SIBO treatments, probiotics, elemental diet, rifaximin and other antibiotics, etc. FMT always interested me.
 

Rufous McKinney

Senior Member
Messages
13,467
Pretty much the same, but GI symptoms started after a viral illness overseas.

in my case, gut issues started as a child a very long time ago, probably even started at birth as I developed severe food allergies at one, even tho I was also breast fed.

My system reacted to any number of things...and I"d get "colitis attacks". (which is what my mother also would say she had). And gosh my childhood memories of what must have been food poisoning.

Huge regret not being able to ask Mom more questions about what was going on when I was born.

Gut issues went on for years/decades long before I developed obvious ME/CFS. Got Mono at 10 and off went: complications and repeated bouts of impossible Mono.

Example- Everybody in college is drinking and I had to stop drinking at 22. (so much for fun parties)
 
Messages
26
I also see Dr. Levine, and coincidentally I have also received an FMT, though not for ME/CFS - rather to treat a severe, recurrent C. Diff infection. For that purpose, it was extremely effective. I did not see any improvement in my CFS symptoms after the FMT, though it's possible I may have, were my body not totally wrecked by the C. Diff inflammation, and by not having eaten any food for nearly a month.
How many FMT treatments did you get? From my research it seems like for C. Diff you usually get one FMT, while for ME/CFS or IBS you get 10+ treatments. Could multiple treatments make a difference?
 

katabasis

Senior Member
Messages
157
How many FMT treatments did you get? From my research it seems like for C. Diff you usually get one FMT, while for ME/CFS or IBS you get 10+ treatments. Could multiple treatments make a difference?

I received only one FMT, so it's possible multiple could have had more of a benefit. For what it's worth, I had been taking large doses of vancomycin for a whole month up until the FMT, so my microbiome was probably largely if not completely replaced by the FMT. I've heard that a 'wipe out' with antibiotics is often used for non-C. Diff FMTs as well. It makes me wonder what mechanistic reason there is for multiple FMTs to show benefit over a single one...
 
Messages
26
I had FMT in summer of 2015. This was at a clinic in Hertfordshire, UK. Never did anything for me. But my bank account went down by around £2,500.!!!!
That is too bad. Do you regret doing it? Do you still think it is worth it for ME/CFS patients to try?
 

Judee

Psalm 46:1-3
Messages
4,543
Location
Great Lakes
@kangaSue talks about having FMT 70 times in this thread: https://forums.phoenixrising.me/threads/the-poop-exchange.83346/page-3#post-2332537

@Daffodil has also had it many times, I believe.

From what Ken Lassessen posted here:https://cfsremission.com/2021/05/24/fecal-matter-transplant-for-me-cfs-2021/ it sounds like there really does have to be so many factors that line up for it to provide any benefit and I'm not sure but I think somewhere (maybe on that page) he said the effects wear off after maybe a few months or so. ??
 
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Daffodil

Senior Member
Messages
5,875
@kangaSue talks about having FMT 70 times in this thread: https://forums.phoenixrising.me/threads/the-poop-exchange.83346/page-3#post-2332537

@Daffodil has also had it many times, I believe.

From what Ken Lassessen posted here:https://cfsremission.com/2021/05/24/fecal-matter-transplant-for-me-cfs-2021/ it sounds like there really does have to be so many factors that line up for it to provide any benefit and I'm not sure but I think somewhere (maybe on that page) he said the effects wear off after maybe a few months or so. ??
DeMeirleir experimented with FMT many moons ago but abandonned it because effects wore off. This is why I did not pursue until about 2 years ago. I did it DIY with a local donor and ordered online as well. I managed to reach about 35% improvement. It was pretty incredible; like the body changing at the most fundamental level. Very hard to describe. I was waking up without that dreaded feeling of going through another day, walking through sludge. I had a family crisis and had to stop for a while. Stopping it, combined with intense stress, undid all the gains. 6 days ago, I found a new donor and began again.

After being sick 30 yrs, I do not have results as good as others.

I have spoken to a large number of people who have tried it at various clinics or DIY now. A lucky few got permanent engraftment. Others have to keep doing it to maintain gains. A lot depends on donor, apparently. No one knows much - even the experts have mixed results. So we are all just playing by ear.

I had very brief remission myself with IV Rocephin once - perhaps it was wiping out some offending overgrowth or maybe wiping out almost everything in there.

There is complex stuff going on, involving vagus nerve, perhaps neck, brain and gut. Some have reprorted much improvement with FMT but said they fine tuned things with brain retraining. Perhaps some cortisol related mechanism or vagus nerve stimulation thing going on....who knows. Many in various groups even claim recovery with brain retraining alone - so vagus nerve and gut obviously have 2-way communication or something...

So the fact that FMT can help - sometimes tremendously - is not disputed....the question remains: how to get permanent engraftment. Close family donor is always best, if healthy. Perhaps bacteria has to be similar genetically between donor and recipient. Phages, fungi, and virome of the gut may be important as well.

"Super donors" have abundance of a particular species of clostridia, which I am guessing most of us are missing.

Please join FMT facebook groups for TONS of information.

FMT trials on in UK and Norway, FMT Long Covid trial in Hong Kong. They found that if they give their microbiome drug to people, they NEVER get long covid.
 
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Messages
26
DeMeirleir experimented with FMT many moons ago but abandonned it because effects wore off. This is why I did not pursue until about 2 years ago. I did it DIY with a local donor and ordered online as well. I managed to reach about 35% improvement. It was pretty incredible; like the body changing at the most fundamental level. Very hard to describe. I was waking up without that dreaded feeling of going through another day, walking through sludge. I had a family crisis and had to stop for a while. Stopping it, combined with intense stress, undid all the gains. 6 days ago, I found a new donor and began again.

After being sick 30 yrs, I do not have results as good as others.

I have spoken to a large number of people who have tried it at various clinics or DIY now. A lucky few got permanent engraftment. Others have to keep doing it to maintain gains. A lot depends on donor, apparently. No one knows much - even the experts have mixed results. So we are all just playing by ear.

I had very brief remission myself with IV Rocephin once - perhaps it was wiping out some offending overgrowth or maybe wiping out almost everything in there.

There is complex stuff going on, involving vagus nerve, perhaps neck, brain and gut. Some have reprorted much improvement with FMT but said they fine tuned things with brain retraining. Perhaps some cortisol related mechanism or vagus nerve stimulation thing going on....who knows. Many in various groups even claim recovery with brain retraining alone - so vagus nerve and gut obviously have 2-way communication or something...

So the fact that FMT can help - sometimes tremendously - is not disputed....the question remains: how to get permanent engraftment. Close family donor is always best, if healthy. Perhaps bacteria has to be similar genetically between donor and recipient. Phages, fungi, and virome of the gut may be important as well.

"Super donors" have abundance of a particular species of clostridia, which I am guessing most of us are missing.

Please join FMT facebook groups for TONS of information.

FMT trials on in UK and Norway, FMT Long Covid trial in Hong Kong. They found that if they give their microbiome drug to people, they NEVER get long covid.
Thank you for providing so much information! Unfortunately I don't think anyone in my immediate family qualifies to be my donor because they have things like depression, cancer, allergies, .... Could 1st degree cousins and close friends be good, and is diy in general going to be better than clinics? Do you know which clinics are the best in the world?
 

Daffodil

Senior Member
Messages
5,875
Thank you for providing so much information! Unfortunately I don't think anyone in my immediate family qualifies to be my donor because they have things like depression, cancer, allergies, .... Could 1st degree cousins and close friends be good, and is diy in general going to be better than clinics? Do you know which clinics are the best in the world?

i also have no qualified family. cousins are also better than strangers, i suspect, if healthy. there are a list of questions to ask and tests to have done. this is all detailed in the FB FMT groups (largest group is called fecal microbial transplantation (fmt)

no one knows what is better yet. some evidence indicates colonoscopy fmt to be a little superior. literally every clinic is getting mixed results, even the one run by barody in australia

if you are wealthy, hazan in california is rumored to have some new techniques...but mostly rumors

china comes out with impressive papers. they use a highly purified fmt that they administer via TET tubing placed in cecum over multiple days. looks interesting

after spending everything i have over the decades and considering there is no hard evidence yet that anyone has vastly better success than anyone else, i have decided to do DIY and just keep doing it, provided i can find donors and afford to pay them.
 

Daffodil

Senior Member
Messages
5,875
i cant get over the feeling i had those few precious days. i cant even remember not being utterly miserable at every minute of every day. . but i began waking up and ...everything was so different. like someone had taken 100 bricks off my body. i was a different person altogether. even knowing the immense loss and realizing just how much misery i had been living in for decades....even that seemed bareable. i hope i can get back there again

it was even nicer than the brief remission i had with IV Rocpehin. it was not eurphoria but a more "Real", deep change. really like my very cells were different. lol crazy. we are mostly just microbes
 

Daffodil

Senior Member
Messages
5,875
There are some threads around here from past folks interested in the topic. I wonder if this one person who was very serious ever got an FMT treatment? I'll try to find that (later)

I previously considered my grandaughter as a possible donor. She has such a healthy immune system, and genetic relative seemed: like a possibility.

Then it seemed she has a different blood type. Well, I now have a new grandaugther who is my blood type. I just might someday try a simple DIY job.

FYI:


https://www.frontiersin.org/articles/10.3389/fmedt.2022.961569/full

Review Article from Sept 22.

SYSTEMATIC REVIEW article
Front. Med. Technol., 22 September 2022
Sec. Medtech Data Analytics
https://doi.org/10.3389/fmedt.2022.961569
https://www.frontiersin.org/research-topics/31191#articles
Orchestrating the fecal microbiota transplantation: Current technological advancements and potential biomedical application
I have never heard of blood type mattering. I wonder if it does! Your grandchild...i would 100% try it after testing
 
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