A Retrospective Outcome Study of 42 Patients with Chronic Fatigue Syndrome that were treated with Faecal Microbiome Transplantation- July 25, 2019

ljimbo423

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Sorry I"m not recalling, but do you consider yourself to have an onset tied to an infectious agent, @ljimbo423 ?
Initially yes, at the age of 18 I got a viral infection that lasted weeks, which caused CFS. I then recovered over a couple of years, almost fully for several years. Then slowly declined again.

I've been got WAY WORSE since all that happened...about 10 months ago now. it would be so nice to not be so CONFUSED about one's own triggers and issues. OhWELL.
I have also been very confused very often trying to figure out my CFS. It's incredibly frustrating!!
 

Hip

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I also don't look at this study in isolation. I look at it with the Borody study(70% successful response rate after 15-20 years) and other successful FMT studies like the one done with severe Autism kids recently.
The Borody study did not use FMT. They did not use bacteria from other human beings.

Rather Borody inserted certain bacterial species that were lab cultured into the colons of patients.
 

ljimbo423

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The Borody study did not use FMT. They did not use bacteria from other human beings.

Rather Borody inserted certain bacterial species that were lab cultured into the colons of patients.
The bacteria he used was from the gut of other healthy people, he might have cultured them to increase their numbers but they came from the gut of other people.

All underwent initial transcolonoscopic infusion of 13 non-pathogenic enteric bacteria.
https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA

Enteric bacteria are bacteria of the intestines, and may refer to: Gut flora, which are always present and usually harmless.
https://www.google.com/search?clien.....0....1..gws-wiz.......0i71j0i67.bianQGce4-I
 

Hip

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The bacteria he used was from the gut of other healthy people, he might have cultured them but they came from the gut of other people.
Ultimately the bacteria will have in the past come from the intestines of a human or animal, but isolated bacteria are not the same as the bacterial and bacteriophage ecosystem you find in stool samples.



But anyway, I am very suspicious of the Borody study, which is 25 years old. He claims that his procedure completely cures ME/CFS in 58% of cases. Not just improves, but cures, as in "complete resolution of symptoms" to quote the Borody study.

Yet Borody no longer offers this treatment to ME/CFS patients, even though we are all desperate for a cure, and he does not respond to my emails requesting information about the treatment.


So, there are two logical possibilities:

(1) Borody's treatment does work, and it does cure 58% of ME/CFS patients from their devastating illness. But Borody and all the other ME/CFS doctors simply don't care about ME/CFS patients, and that's the reason they do not give this treatment.

(2) The Borody study lied.


Which do you think is the case, (1) or (2)?
 
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perrier

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Ultimately the bacteria will have in the past come from the intestines of a human or animal, but isolated bacteria are not the same as the bacterial and bacteriophage ecosystem you find in stool samples.



But anyway, I am very suspicious of the Borody study, which is 25 years old. He claims that his procedure completely cures ME/CFS in 58% of cases. Not just improves, but cures, as in "complete resolution of symptoms" to quote the Borody study.

Yet Borody no longer offers this treatment to ME/CFS patients, even though we are all desperate for a cure, and does not respond to emails requesting information about the treatment.


So, there are two logical possibilities:

(1) Borody's treatment does work, and it does cure 58% of ME/CFS patients from their devastating illness. But Borody and all the other ME/CFS doctors simply don't care about ME/CFS patients, and that's the reason they do not give this treatment.

(2) The Borody study lied.


Which do you think is the case, (1) or (2)?
Hip
I spoke with Dr Borody some 6 years ago; he was delightful and said if we came to Australia he would help. However, due to other life threatening episodes we never made it there.
 

Hip

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I spoke with Dr Borody some 6 years ago; he was delightful and said if we came to Australia he would help. However, due to other life threatening episodes we never made it there.
Interesting that you found him affable.

He never answered my two emails (one in 2018 and another in 2019) sent to his clinic enquiring about his bacteriotherapy treatment for ME/CFS. Not even an automatic letter saying that my email was received.

Here is a copy of one of the emails I sent him:
Dear Prof Thomas Borody

I read your 2012 study on bacteriotherapy for chronic fatigue syndrome (ME/CFS). May I please ask a question on this paper?

ME/CFS doctors such as Dr Kenny de Meirleir have tried fecal microbiota transplantation for ME/CFS (I know FMT is not the same as your cultured bacteria bacteriotherapy). Although de Meirleir observed initial benefits, he found the benefits usually disappear after around 10 weeks. Yet in your study, nearly 60% of the ME/CFS patients had long-term remission, and many were still in remission 15 to 20 years later.

Do you have any insight why you achieved long-term benefits for ME/CFS, whereas Dr De Meirleir did not?

Are you still using this bacteriotherapy approach on ME/CFS patients?

Best regards
 

Judee

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This study was put out by the Dove Clinic. If you click on link of the study and then click on the place underneath the authors' names where is says, "Show More" it gives their name and address.

I remembered that we discussed this clinic on the forum before and finally found that thread: https://forums.phoenixrising.me/thr...mission-even-better.61777/page-4#post-1005191
@perrier documented some cautions from a personal experience with them that I think are important.

It just makes me wonder if they aren't trying to drum up more business. (Sorry. I'm a bit of a pessimist.)
 

ljimbo423

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This study was put out by the Dove Clinic. If you click on link of the study and then click on the place underneath the authors' names where is says, "Show More" it gives their name and address.

I remembered that we discussed this clinic on the forum before and finally found that thread: https://forums.phoenixrising.me/thr...mission-even-better.61777/page-4#post-1005191
@perrier documented some cautions from a personal experience with them that I think are important.


It just makes me wonder if they aren't trying to drum up more business. (Sorry. I'm a bit of a pessimist.)
I understand your pessimism.

Regarding Perrier's experience, it was with the Taymount Clinic, not the Dove clinic. I just want to clarify this.:)

From Perrier's post-

I would caution folks to find alternatives to Taymount.
1) these folks are NOT doctors
2) these folks are money grabbers


POST # 69 https://forums.phoenixrising.me/thr...mission-even-better.61777/page-4#post-1005191
 

Hip

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@ljimbo423, waiting to hear your thoughts on my above question:
Which do you think is the case, (1) or (2)?
Do you think Borody can cure ME/CFS in 58% of cases, but for some reason prefers not offer this cure?
 
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ljimbo423

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@ljimbo423, waiting to hear your thoughts on my above question:


Do you think Borody can cure ME/CFS in 58% of cases, but for some reason prefers not offer this cure?

I think his results speak for themselves.

As far as what Dr. Borody is doing, weather he's treating ME/CFS with FMT or not. I have no idea. About 6 Years ago Perrier said he was willing to help her daughter in Australia-

I spoke with Dr Borody some 6 years ago; he was delightful and said if we came to Australia he would help. However, due to other life threatening episodes we never made it there.
I understand that you don't believe FMT is very successful in treating ME/CFS, because the gut isn't a major factor in the cause of it. I really do get this.

I'm guessing you probably also think, by me posting this study, I'm spreading bad information, that might hurt people's possible recovery. If you do, I also understand this perspective.

You are very much entitled to your view.
 

Hip

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I think his results speak for themselves.
So you think Borody has found a simple and inexpensive cure for ME/CFS, but for some reason (that you have not explained), none of the ME/CFS specialists around the world (who can easily read Borody's method in his paper) are offering the cure?

Any doctor that offers an effective and inexpensive cure for ME/CFS will make a fortune, and will become the savior of the ME/CFS community. Yet none of the leading ME/CFS doctors are offering Borody's treatment, which you believe to be a surefire cure for ME/CFS. Can you explain why? I am just trying to follow your thoughts on this.
 
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Here: the FDA discusses two patients who received FMT and one died....(I had heard two died recently)....

https://www.fda.gov/news-events/fda...ections-caused-multi-drug-resistant-organisms

It was my understanding the FDA has not "approved" this procedure. It is not clear to me from the link above that they are required to approve it...but they discuss potential enforcement actions...

Under some ideal setting, culitvating appropriate cultures of desirable bacteria seems like a safer method...
 

ljimbo423

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So you think Borody has found a simple and inexpensive cure for ME/CFS
I don't think he's found a cure but I do think he has found a way to profoundly improve most ME/CFS patients. Now it needs to be better perfected.

There is much more unknown about the gut microbiome then there is known. However there is a HUGE amount of research going on all around the world, expanding our knowledge of it. Because it's connected to so many different diseases.

but for some reason (that you have not explained), none of the ME/CFS specialists around the world (who can easily read Borody's method in his paper) are offering the cure?
I don't know why other ME/CFS specialists aren't offering his treatment.

Some guesses would be, some haven't even read it. Probably the biggest reason is that, like us patients, most ME/CFS specialists have their own idea(s) about the cause of ME/CFS and FMT doesn't fit into their perspective of a viable treatment.

If it don't fit into their perspective, to them, it's probably useless information.
 

Hip

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Probably the biggest reason is that, like us patients, most ME/CFS specialists have their own idea(s) about the cause of ME/CFS and FMT doesn't fit into their perspective of a viable treatment.
You can always find an ME/CFS specialist with interests in specific areas. KDM is very focused on the gut, and is a very exploratory and experimental doctor, trying all sorts of treatments. He would almost certainly know about Borody and his world famous digestive diseases clinic in Australia.
 

suevu

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I am really waiting for the results of the current norwegian FMT Study which will be performed at 80 CFS patients and as well placebo controlled.
First Preliminary results are expected in Feb 2020 as it says on this site:
https://clinicaltrials.gov/ct2/show/NCT03691987
Those studies don't make a lot of sense because they use the same solution for all, and we all have different DNA and gut predisposition for certain or other microbes.

We have enterotypes and they didn't even keep them into account...

It would be like trying to test if blood transfusions work by using the same blood from the same donor for 100 different people with many different blood types . It will fail and "science" would tell upon that study that blood transfusion doesn't work. Thats how silly these tests are.
 
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Your Point is valid, but i hope if FMT Works for a Subset of CFS patients in general, this should be visible with this Study
Of course the next step can be considering of enterotypes and other criteria, i am thinking at the Moment There might be too less understanding of the requirements for a successful FMT
 

suevu

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Your Point is valid, but i hope if FMT Works for a Subset of CFS patients in general, this should be visible with this Study
Of course the next step can be considering of enterotypes and other criteria, i am thinking at the Moment There might be too less understanding of the requirements for a successful FMT
That's the point and what I always complain, unlike drugs, microbiomes do have compatibility factors, I have seen so many times one donor working wonders for one person and condition and not for other and the same condition, there might be many variables involved and many FMTs might be needed long term and probably some auxiliary drugs or prebiotics, but this needs to be done seriously and with rigor and not these small studies that don't keep in mind any variable.