“Autism symptoms reduced nearly 50 percent two years after fecal transplant”

Wally

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An article was released by Arizona State University noting that a study involving patients with Autism receiving fecal transplants has shown nearly a 50% decrease in gastrointestinal symptoms that has now been sustained for two years.
Autism symptoms reduced nearly 50 percent two years after fecal transplant

Date:​
April 9, 2019​
Source:​
Arizona State University​
Summary:​
In a new study, researchers demonstrate long-term beneficial effects for children diagnosed with ASD through a revolutionary fecal transplant technique known as microbiota transfer therapy (MTT).​
https://www.sciencedaily.com/releases/2019/04/190409093725.htm

...In a new study, "Long-term benefit of Microbiota Transfer Therapy in Autism Symptoms and Gut Microbiota," published in Scientific Reports, Arizona State University researchers Rosa Krajmalnik-Brown, Ph.D., James Adams, Ph.D, and lead author Dae-Wook Kang, Ph.D, demonstrate long-term beneficial effects for children diagnosed with ASD through a revolutionary technique known as Microbiota Transfer Therapy (MTT), a special type of fecal transplant originally pioneered by Dr. Thomas Borody, an Australian gastroenterologist. Remarkably, improvements in gut health and autism symptoms appear to persist long after treatment....

At two years post-treatment, most of the initial improvements in gut symptoms remained. In addition, parents reported a slow steady reduction of ASD symptoms during treatment and over the next two years. A professional evaluator found a 45% reduction in core ASD symptoms (language, social interaction and behavior) at two years post-treatment compared to before treatment began.
 

ljimbo423

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Thanks @Wally, this is good info!

Remarkably, improvements in gut health and autism symptoms appear to persist long after treatment....

At two years post-treatment, most of the initial improvements in gut symptoms remained. In addition, parents reported a slow steady reduction of ASD symptoms during treatment and over the next two years.

A professional evaluator found a 45% reduction in core ASD symptoms (language, social interaction and behavior) at two years post-treatment compared to before treatment began.
Given that ASD and increasingly ME/CFS are both considered to be neuro-inflammatory conditions. This specific type of fecal matter transplant could be a very valuable treatment in ME/CFS.

University researchers Rosa Krajmalnik-Brown, Ph.D., James Adams, Ph.D, and lead author Dae-Wook Kang, Ph.D, demonstrate long-term beneficial effects for children diagnosed with ASD through a revolutionary technique known as Microbiota Transfer Therapy (MTT), a special type of fecal transplant originally pioneered by Dr. Thomas Borody, an Australian gastroenterologist.
 
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ljimbo423

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Thomas Borody also did a study published in 2012 where I think he used the same special type of fecal transplant on ME/CFS patients. Here are the results from that study-

Contact was achieved with 12 patients after 15-20 year follow-up. Complete resolution of symptoms was maintained in seven of the twelve patients and 5/12 did not experience recurrence for approximately 1.5-3 years post bacteriotherapy.

Conclusion: 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.
https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA
 

Hip

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Thomas Borody also did a study published in 2012 where I think he used the same special type of fecal transplant on ME/CFS patients. Here are the results from that study-
Yet at Borody's own clinic, the Centre for Digestive Diseases in Australia, he does not appear to offer bacteriotherapy nor fecal microbiota transplant (FMT) for ME/CFS.

According to the clinic website, he treats the conditions of ulcerative colitis and IBS with FMT, but does not treat ME/CFS.

So on the one hand his study claims to have found an amazing cure for ME/CFS (although the Borody study said bacteriotherapy only works for ME/CFS patients with concomitant IBS). But on the other hand, he is not offering this treatment at his clinic for ME/CFS patients.

So clearly something is not right here. If he found an amazing cure for ME/CFS, why is he not offering this treatment?



I actually wrote to him to ask about his ME/CFS study, and whether he still feels bacteriotherapy or FMT is useful for ME/CFS. But I received no reply.
 
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Wally

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@Hip - Interesting info. or lack thereof about Dr. Borody’s follow up on his research related to the study of ME/CSF patients and fecal transplants. Perhaps some additional 🕵️‍♂️🕵🏼‍♀️ ME/CFS Sleuths “down under” will volunteer to investigate this further?.?? 🔍
 

ljimbo423

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So on the one hand his study claims to have found an amazing cure for ME/CFS (although the Borody study said FMT only works for ME/CFS patients with concomitant IBS).
From his study-

Method: A total of 60 patients from the Centre for Digestive Diseases presented with CFS. Of these, 52 patients had concurrent IBS and 4 patients additionally had constipation.
The study shows that his FMT method worked in patients primarily with IBS. It could be just as effective in ME/CFS without IBS. We don't know yet because there hasn't been a study done yet on patients without IBS.

Yet at Borody's own clinic, the Centre for Digestive Diseases in Australia, he does not appear offer bacteriotherapy nor fecal microbiota transplant (FMT) for ME/CFS.
I really have no idea why he's not offering FMT for ME/CFS. I wish he would have responded to your email. Maybe then you could have found out why.
 

Hip

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The study shows that his FMT method worked in patients primarily with IBS. It could be just as effective in ME/CFS without IBS. We don't know yet because there hasn't been a study done yet on patients without IBS.
You are right, there's not enough data to say for sure, but the results hint that only those with GI disorders respond, as the Borody study said:
All 4 of the patients presenting with CFS alone (i.e. no concurrent gastrointestinal symptoms) failed to respond to therapy (Figure 3D), suggesting again a multi-factorial etiology.

The study shows that his FMT method worked in patients primarily with IBS. It could be just as effective in ME/CFS without IBS. We don't know yet because there hasn't been a study done yet on patients without IBS.
He does not call his technique FMT, but calls it bacteriotherapy. FMT is one type of bacteriotherapy, but bacteriotherapy is an umbrella term.

His bacteriotherapy involved giving ME/CFS patients an infusion of cultured bacteria (not the same as an infusion of fecal material which is FMT).

The study says this:
Bacteriotherapy involves the infusion of a mixture of 13 non-pathogenic enteric bacteria (a combination of Bacteroidetes, Clostridia, and E. coli).
...
All [60] patients received a single transcolonoscopic (TC) infusion of 300cc of anaerobic bacterial culture.
Basically Borody stuck an endoscope into colon of these patients, pushed the endoscope along until it reached the far end of the colon, and then injected the bacteria.



I really have no idea why he's not offering FMT for ME/CFS. I wish he would have responded to your email. Maybe then you could have found out why.
I've just sent him another email. Let's see if we can get some info.
 

ljimbo423

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You are right, there's not enough data to say for sure, but the results hint that only those with GI disorders respond, as the Borody study said:
All 4 of the patients presenting with CFS alone (i.e. no concurrent gastrointestinal symptoms) failed to respond to therapy (Figure 3D), suggesting again a multi-factorial etiology.
I don't think science has enough information yet about how to treat dysbiosis with FMT or some variation of that, with 100% success in ME/CFS or any other disease yet.

There are too many unknowns at this point for any gut intervention to be 100% effective in all patients.

Science really knows very little about dysbiosis and how big a role it plays in disease. Although the research is growing every year.

Yet many chronic illnesses often have dysbiosis and/or leaky gut as part of the disease. I'm confident as the research on the gut microbiome continues, the interventions will become more and more successful in autism, ME/CFS and other diseases.

The autism study in the OP is a good example, I think of the direction FMT and variations of that are going. That's just a basic start though, IMO. Although, if you talk to parents of the children in that autism study. They would probably feel like they just won the lottery!
 

ljimbo423

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From the article posted in the OP-

One promising avenue of autism research involves the gut microbiome, which is the collection of microbes that lives in our intestines and helps us in many ways including digestion of our food, training our immune system and preventing overgrowth of harmful bacteria.

Recent research suggests our gut microbiomes also affect brain communication and neurological health. Worldwide, interest is growing in the idea that changes in normal gut microbiota may be responsible for triggering a vast range of diseases.
"We are finding a very strong connection between the microbes that live in our intestines and signals that travel to the brain," said Krajmalnik-Brown, a professor at the Biodesign Swette Center for Environmental Biotechnology at the Biodesign Institute and ASU's School for Sustainable Engineering and the Built Environment.
 
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Hip

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Yet many chronic illnesses often have dysbiosis and/or leaky gut as part of the disease. I'm confident as the research on the gut microbiome continues, the interventions will become more and more successful in autism, ME/CFS and other diseases.
If this autism study can be replicated in a double-blind, placebo-controlled trial that the authors are calling for, I am sure it will kick up a lot of interest.

However, nothing seems to be happening in the ME/CFS world. Although the Borody study was publish in 2012, it was actually conducted 20 years earlier (because in the study they say they followed patients for up to 20 years).

So the Borody study is really a 27 year old study, and if nothing has advanced in those intervening 27 years, it does not look good for ME/CFS.
 

Hip

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Perhaps @MaximilianKohler might be interested in this autism FMT treatment, and also in the Borody study discussed above, which did not use FMT, but a different bacteriotherapy.

If you want to contact Borody, his email is: reception AT cdd.com.au
 

ljimbo423

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If this autism study can be replicated in a double-blind, placebo-controlled trial that the authors are calling for, I am sure it will kick up a lot of interest.

However, nothing seems to be happening in the ME/CFS world. Although the Borody study was publish in 2012, it was actually conducted 20 years earlier (because in the study they say they followed patients for up to 20 years).

So the Borody study is really a 27 year old study, and if nothing has advanced in those intervening 27 years, it does not look good for ME/CFS.
I think that's a backward looking view, rather than a forward looking view. There is a study being done in Norway rate now treating ME/CFS with FMT. I think it will be completed in February 2020.

My feeling is these types of research studies will continue to grow as more studies link the microbiota to brain health and neuro-inflammation.

If you take the view that I have. That is that both ASD and ME/CFS are primarily neuro-inflammatory diseases. The connection of this study to ME/CFS becomes much clearer. So therefore, so do the possible benefits.
 
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There is a study being done in Norway rate now treating ME/CFS with FMT. I think it will be completed in February 2020.
some details on that here

https://clinicaltrials.gov/ct2/show/NCT03691987

This is a single-center stratified (on gender and donor), block randomized, placebo-controlled, parallel group trial with 12-months follow-up of 80 chronic fatigue syndrome/encephalomyelitis (CFS/ME) participants. Participants will be randomized to treatment by preprocessed thawed donor fecal microbiota transplant or preprocessed thawed autologous fecal microbiota transplant. Primary endpoint is the efficacy of FMT at three months by the Fatigue Severity Scale. The investigators will use patient reported outcomes for primary and secondary outcome measures.

Previous studies suggest that a dysbiosis of the gut microbiota may be a key feature in CFS/ME. We hypothesize that

A: CFS/ME is caused by a dysbiosis in the gut flora causing barrier leakage of bacterial products, a low grade systemic immune activation and disturbances in the host energy metabolism.

B: Recovery of a normal gut flora by fecal microbiota transplantation (FMT) alleviates symptoms and may even induce remission of CFS/ME.

This project aims to determine if there is a true cause and effect relationship between a dysbiotic gut flora and CFS/ME by testing if treatment of the observed dysbiosis by FMT also can resolve CFS/ME symptoms. In this process, collection of blood, fecal, and urine samples before and after FMT will open the possibility to explore the relationship between the gut flora, immune response, host energy metabolism and CFS/ME using technologies of microbiomics, metabolomics and immunological characterizations for a better understanding of the pathobiology of CFS/ME.
 
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If you take the view that I have. That is that both ASD and ME/CFS are primarily neuro-inflammatory diseases. The connection of this study to ME/CFS becomes much clearer. So therefore, so do the possible benefits.
I see a kind of building momentum as a variety of superficially disparate illnesses and conditions overlap in many arenas with ME/CFS and so: its exciting actually. Officially proof I am NOT a depressed person, just dealing with this ME Stuff.
 

Hip

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I think that's a backward looking view, rather than a forward looking view. There is a study being done in Norway rate now treating ME/CFS with FMT. I think it will be completed in February 2020.
Unless they are using some different new method, personally I don't hold out a great deal of hope.

KDM is an ME/CFS doctor whose whole focus is the gut, that's his area of expertise. KDM has tried FMT in his patients, but found the benefits they provided would only hold for a few weeks, and the patient went back to baseline by week 10 after treatment.

Similarly, if you search this forum for ME/CFS patients treated with FMT at the very expensive Taymount Clinic, you find no successes. (See here, here and here).

The Taymount Clinic themselves do not publish their success rate with the diseases they treat using FMT, which indicates to me that their success rate is poor (if your success rate is high, it is very good for business to publish it; if your success rate is poor, that's bad for business to make it public).

So from the evidence we have so far, FMT does not look that hopeful. Maybe the super-donor concept will prove to be more successful; but we'll have to wait and see.

Though if in future someone devises an interesting new technique of bacteriotherapy, I remain open minded about that.


I think it is important to be honest about the efficacy of these treatments (as honest as we can be with the information available), as you don't want to be promoting a treatment to other patients which has not got a good track record.
 
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It's interesting Dr Borody is quiet on ME/CFS because in Melbourne there's a doctor who says this:

"But I’ve made a decision. If you’ve got a consenting adult who knows what they’re in for and have done their research, I’ll FMT anything because in the end it’s the patient who decides what they want... If you’ve got chronic fatigue and you want me to FMT you, I’ll do it as long as you understand."

I live in Melbourne and I've actually been to the clinic he works in to see a dietitian (that was pointless!) and I do sometimes wonder about getting FMT there. The cost is maybe $4k.
 
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Maybe the super-donor concept will prove to be more successful; but we'll have to wait and see.
I agree and I think this is the future of FMT. Superdonor is a fun term but I think the superpower will be widespread. We should be moving from negative screening (does the donor have pathogens?) to positive screening (does the donor have patterns of microbes that look like a healthy ecosystem?)
 
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Thanks. I'm familiar with all these studies. I have written to the ASU Autism researchers (and hundreds of others) encouraging them to acquire better donors, as I believe that will produce better results.

The ASU team seems to have similar donor quality to Borody (both with a ~10% pass rate), which makes sense given that they seem to have adopted much of his procedural details.

Other examples are OpenBiome, who says they have a 3% pass rate. And the Aleris-Hamlet Hospital in Copenhagen, which had a ~0.5% pass rate yet while their donors had a 100% cure rate for C. Diff, they were ineffective for IBS and UC.

You can find related info here: https://old.reddit.com/r/fecaltransplant/

-

BTW, @Hip it doesn't look like there's a way to turn on email notifications for mentions, so it's likely that I won't know every time you do that since I don't check this site regularly.
 
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ljimbo423

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We should be moving from negative screening (does the donor have pathogens?) to positive screening (does the donor have patterns of microbes that look like a healthy ecosystem?
My feeling is this is where the biggest impacts in health will be made. As they are able to refine the process, maybe they can isolate certain bacteria that have a big impact on changing the makeup of the microbiota and creating lasting change.

I wonder if that's what they basically did in this study with the Microbiota Transfer Therapy (MTT). I haven't had a chance to find out the details of this MTT yet.

In this study they were also very aggressive with a their protocol. Which could explain some of the benefits they saw-

Based on his experience with his patients, Borody led the design of the clinical treatment used at ASU for this study. The MTT approach involves 10 weeks of treatment, including pre-treatment with vancomycin, a bowel cleanse, a stomach acid suppressant, and fecal microbiota transfer daily for seven to eight weeks.


The initial open-label study, led by Krajmalnik-Brown and Adams, and published in the journal Microbiome in 2017, concluded that "this exploratory, extended-duration treatment protocol thus appears to be a promising approach to alter the gut microbiome and improve GI and behavioral symptoms of ASD. Improvements in GI symptoms, ASD symptoms, and the microbiome all persisted for at least eight weeks after treatment ended, suggesting a long-term impact." The present study now shows the benefits are extended beyond eight weeks to at least two years post-treatment.
 

Hip

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Wow, you've posted a whole wealth of very useful info about FMT on reddit.

I found the story of OpenBiome's donor 102 very interesting — a superdonor with 100% success rate at curing Clostridium difficile, compared to the average success rate of 86%.

Concerning though that you mention Openbiome's donors are triggering IBS in 30% of patients.



Have you looked into the Thomas Borody bacteriotherapy method used in his ME/CFS study, where instead of using FMT, I believe he cultured important anaerobic gut bacteria including Bacteroidetes, Clostridia and Escherichia coli, and placed those in the gut as a sort of super-power probiotic. That might explain his claimed success rate.

If these species were available as probiotics, they would be far more effective than the current probiotics available. But because they can occasionally cause an invasive bacterial infection, nobody wants to sell them as probiotics.

I wanted to try to source some of these bacteria for probiotic use (which would have a risk), but could not find any supplier. I believe they are hard to culture anyway, as they are anaerobic and are killed by oxygen.



BTW, @Hip it doesn't look like there's a way to turn on email notifications for mentions, so it's likely that I won't know every time you do that since I don't check this site regularly.
Yes, Phoenix Rising are trying to get the system upgraded so that it sends email notifications for mentions and quotes, but this is not possible at present.