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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This was posted in another thread by @Grigor. So thanks for this study Grigor!

A Retrospective Outcome Study of 42 Patients with Chronic Fatigue Syndrome, 30 of Whom had Irritable Bowel Syndrome. Half were treated with oral approaches, and half were treated with Faecal Microbiome Transplantation
Author links open overlay panelJNKenyon
ShellyCoeHooshangIzadi

https://doi.org/10.1016/j.humic.2019.100061Get rights and content
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Abstract
The gut microbiome comprises the community of microorganisms in the intestinal tract. Research suggests that an altered microbiome may play a role in a wide range of disorders including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods
42 participants with ME/ CFS with Irritable Bowel Syndrome (IBS) were allocated into one of two groups, 21 were treated with standard oral approaches, which centred around various nutritional remedies, probiotics, prebiotics, dietary advice and lifestyle advice.

The second group who had mostly failed using oral approaches, were treated with Faecal Microbiome Transplantation (FMT). Each patient received 10 Implants, each from a different screened donor, and the Implants were processed under anaerobic conditions. The transplant is delivered via a paediatric rectal catheter, which is inserted through the anus to reach the lower part of the sigmoid colon.


The results were assessed on a percentage basis before and after treatment, 0% being no improvement, 100% being maximum improvement. An exact non-parametric Mann-Whitney (one-tailed) test was used to compare medians from those on FMT compared with those receiving oral approaches only.

On clinical experience over many years, the only way to judge improvement in Chronic Fatigue Syndrome as there is no test for Chronic Fatigue Syndrome, is my clinical assessment.

Results
The median for the FMT group was found to be significantly higher compared to the oral treatment group (Mann-Whitney U=111.5, p=.003). Therefore, the FMT group improved to a greater extent (z=-2.761).

Conclusion
This study shows that FMT is a safe and a promising treatment for CFS associated with IBS. Adequately powered randomised controlled trials should be carried out to assess the effectiveness of FMT in patients with CFS and IBS.
Regulation of the gut flora has also been correlated with a host of inflammatory and immune conditions [19], [20].
Recent research suggests that an altered microbiome may play a role in a wide range of disorders including Parkinson’s disease [22], [23] chronic liver disease [24], [25], myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [26], [27] and also impact cancer patient recovery after treatments such as chemotherapy and radiotherapy.
https://www.sciencedirect.com/science/article/pii/S2452231719300077#b0100
 

ljimbo423

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These are the results of the ME/CFS patients after FMT. A few didn't get improvement but most got 70-95% improvement from FMT! These are the results from all 21 ME/CFS patients that had the FMT.

I think if done right, by a very knowledgeable doctor. FMT can be a very effective treatment for ME/CFS. HOW the FMT is done, I feel, is absolutely critical to weather the procedure succeeds or fails in most cases.


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ljimbo423

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Wow. These are great results! Interesting that they used a different donor for each of the 10 transplants, so 10 donors per patient. I haven't seen that done before in FMT studies.
I haven't seen that done before either, in FMT. I think it makes sense though, from the perspective of bacterial diversity. The 10 different donors per patient, I think, would give a much broader bacterial diversity. Which is a good thing. The more diversity the better.
 

ljimbo423

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Very good and interesting study. Does it say how long they have followed up with them? I have heard people tend to relapse with this.
In post #2 of this thread, where they list the patients and outcomes. It shows that the FMT's were done in 2017 and 2018.

Borody did a study where they used "bacteriotherapy" on ME/CFS patients, that had a (EDIT)- 58% sustained response rate, after a 15-20 year follow-up.

The Bacteriotherapy they did by isolating certain bacteria from healthy stools. Cultivating them and giving them to ME/CFS patients. So, I really think how the FMT is done, is absolutely critical, for it's lasting success.
 
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MonkeyMan

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I really think how the FMT is done, is absolutely critical, for it's lasting success.
I agree. I had FMT a few years ago -- one week of daily treatment -- and it did nothing for my energy level.

In retrospect, I'm wondering if I should have taken antibiotics before the FMT, to wipe out any nasty bugs living in my gut. It's possible the good bugs were not able to push out the bad ones.

Also, it's possible that one week is not sufficient -- i.e., that daily treatment for an extended period of time may be needed in some people. We just don't know enough about it.
 

Hip

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I think this is a poor study. The results are impossible to interpret, because they did not use a standard ME/CFS severity scale to measure the improvements. So the study does not tell us anything.

You need to determine the severity of ME/CFS for each patient before any treatment is given, using an ME/CFS scale, and then see how much the patient improves on this scale as a result of treatment. The most simple ME/CFS scale is the very severe, severe, moderate, mild, remission scale.

But this study just says:
The results were assessed on a percentage basis before and after treatment, 0% being no improvement, 100% being maximum improvement. In no case did we obtain more than a 95% response. This is a clinical judgement as there is no objective test for Chronic Fatigue Syndrome.
So what does "100% improvement" correspond to on any standard ME/CFS scale? We don't know, so therefore when the study says for example "70% improvement", it has no known meaning. It would only have meaning if they defined their 0 to 100% scale, but they don't.

So they results of this study are impossible to interpret.


The other flaw in this study is that they do not specify the timescale over which these improvements manifested. Most of the ME/CFS patients were given FMT in 2018 or 2017, but we do not know how long after their FMT treatment they waited before the patients' condition were assessed.

We know from Dr Dr Kenny De Meirleir, who did lots of experiments with FMT for ME/CFS, that patients do feel better after FMT, but that only lasts for around 10 weeks, before patients return to their previous baseline of ill health. (This is why KDM stopped using FMT, because he found it has no long term benefits).

So if this study assessed patients say 6 weeks after their FMT, they would likely find improvements. But if they assessed them 6 months after, they would likely find no improvements, as the patients would have likley returned to baseline at 6 months.


Finally, the fact that all three study authors are employees of the Dove Clinic for Integrated Medicine which offers fecal microbiota transplantation does not bode well. It is not really an independent test.
 
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ljimbo423

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I agree. I had FMT a few years ago -- one week of daily treatment -- and it did nothing for my energy level.

In retrospect, I'm wondering if I should have taken antibiotics before the FMT, to wipe out any nasty bugs living in my gut. It's possible the good bugs were not able to push out the bad ones.
I think this is one very good possibility.

Also, it's possible that one week is not sufficient -- i.e., that daily treatment for an extended period of time may be needed in some people.
Another great point that I agree with 100%!

We just don't know enough about it.
I think this is the main issue, as far as how well FMT works and weather the benefits are long lasting or not. Most doctors just don't know enough about FMT and the microbiome, to be successful with it, YET.

I say YET because I feel very confident this type of therapy for ME/CFS, Autism, etc, is just getting started!
 
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I'm glad they published this... and encourage a more formal randomized study....the info is encouraging.

Studies need to better somehow quantify results and use less subjective measures of success. But "I feel 95% better" is a form of success worthy of reporting.

And what is: IBS? Versus IBD? Why are the people I know with diagnosed Crohns, far less evidently sick than I am?

I"ve improved "gut performance" largelyly with chinese Traditional herbs and some dietary adjustments, but would not report 95% improvement in ME ....so while I believe the gut IS important, I am not yet convinced its controlling or driving the illness.
 
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So they results of this study are impossible to interpret.
Perhaps as Dr. Davis mentioned recently, these types of "not really studies"...provide observational information useful in formulating HYPOTHESES that then can be properly tested. But this one contains far too many subjective criteria. I was rather bothered by the comment that the folks who got Fecal implants- had first tried the oral methods.. so again the patients aren't randomized, symptoms and improvements have alot of room for bias and subjectivity.

Personally: I"m not that thrilled with the general terms we use for severity, either. They are incredibly simplistic.

Our subgroup with POTS....would they be fixed by fecal implants?

And if 95% improvements are possible, do fingerprints come back?
 

ljimbo423

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So what does "100% improvement" correspond to on any standard ME/CFS scale.
I agree that they needed to be much clearer on how they measured improvement. However, let's not throw out the whole study because of just that.

If I (and probably most people here :)) had a 70-95% improvement like most of these patients did, I would be jumping with joy!

I also don't look at this study in isolation. I look at it with the Borody study(EDIT-58% successful response rate after 15-20 years) and other successful FMT studies like the one done with severe Autism kids recently.

That moved almost all of them from severe Autism, to mostly mild and a few moderate. Some improved so much they no longer fit the criteria for Autism! So, for me, there is a much bigger picture forming here, that I feel very excited about.

Without question I have I bias here, based on my own experience. I have gone from severe and mostly bedbound to fairly mild ME/CFS.

By focusing on treating my gut, dysbiosis and possible leaky gut. I've gone from moderate to mild ME/CFS in the last 2 years. With daily, fairly aggressive gut treatments.
 
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Encouraging results. I had severe gut Problems before onset of ME/CFS, therefore in my Case i Think There is a high Chance this is linked.

Started a Complete diagnosis at gastroenterologist including Imaging of Colon and capsule endoscopy of small bowel. No relevant findings for an IBD but the calprotectin Value is still Top high with 100 (ref is below 50) which means there is some Kind of Inflammation.So im just thinking if no Inflammation can be Detected with imaging the reason for this high calprotectin might be gut dysbiosis or bad bacteria.

So im really considering FMT as an option
 
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Today's release of the Metabolic Trap hypothesis: from that paper, they mention four areas where we may be experiencing this Trap....one involves intestinal, but maybe the other three don't... . I find that interesting...

"The IDO metabolic trap hypothesis for ME/CFS thus suggests that four cell types are at risk of being driven into the pathological steady-state C (Figure 3): (1) antigen-presenting cells (such as dendritic cells and macrophages), (2) serotonergic neurons in the midbrain raphe nuclei, (3) serotonin-producing enterochromaffin cells in the intestinal mucosa, and (4) melatonin-producing pinealocytes. This risk, according to the hypothesis, is magnified by the absence or dysfunction of the backup enzyme, IDO2. A cell in the pathological steady-state C can be described as being in the IDO metabolic trap."

Do the other two cell types occur in the gut? I don't know...
 
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Without question I have I bias here, based on my own experience. I have gone from severe and mostly bedbound to fairly mild ME/CFS.

By focusing on treating my gut, dysbiosis and possible leaky gut. I've gone from moderate to mild ME/CFS in the last 2 years. With daily, fairly aggressive gut treatments.
Sorry I"m not recalling, but do you consider yourself to have an onset tied to an infectious agent, @ljimbo423 ?


And maybe I'll just say this again- I"m so puzzled over my worsening this last year, as the main events after the MAJOR STRESSOR that happened...was "getting" what I thought was the Norovirus, and having what seemed like near-death vomiting and diarrhea...then it happened AGAIN in July and I went to the ER: but I don't know if that was norovirus- as no tests were completed.

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.
 

ljimbo423

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Today's release of the Metabolic Trap hypothesis: from that paper, they mention four areas where we may be experiencing this Trap....one involves intestinal, but maybe the other three don't... . I find that interesting...

"The IDO metabolic trap hypothesis for ME/CFS thus suggests that four cell types are at risk of being driven into the pathological steady-state C (Figure 3): (1) antigen-presenting cells (such as dendritic cells and macrophages), (2) serotonergic neurons in the midbrain raphe nuclei, (3) serotonin-producing enterochromaffin cells in the intestinal mucosa, and (4) melatonin-producing pinealocytes. This risk, according to the hypothesis, is magnified by the absence or dysfunction of the backup enzyme, IDO2. A cell in the pathological steady-state C can be described as being in the IDO metabolic trap."

Do the other two cell types occur in the gut? I don't know...
I think the IDO hypothesis, if it's found to be a real "Trap", is a down stream effect of gut dysbiosis and immune system upregulation. Not the other way around.