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The First ME/CFS Fecal Transplant Study Suggests the Treatment Holds Promise

Finally a (chronic fatigue syndrome) ME/CFS fecal transplant study. It’s long past due (Maybe way, way long past due –  the Chinese pioneered fecal transplants 2000 years ago but used a cruder method in people dying of diarrhrea – drinking them.)

This first stab at a fecal transplant study isn’t a big statistically rigorous, randomized, placebo-controlled trial. Far from it; it’s more a series of case reports from a physician’s practice over time with a smattering of statistics. It does give us, though, our first data -in rather vivid detail – on the possible efficacy of fecal transplants in ME/CFS.

gut lumen diagram

The gut lumen – from “Does the microbiome an virome-contribute to ME/CFS.-Clin-Sci. March 2018

Ten studies now indicate that the bloom is off in the gut flora of people with ME/CFS. With a 2018 review taking ME/CFS researchers to task for the usual suspects: lack of standardization in patient selection, sample processing, genome sequencing and data analysis, it’s not clear what has gone wrong.

As papers just pour out implicating the gut flora in a wide range of diseases the question becomes more and more what to do about it.  While pre and probiotics can help, it’s possible that fecal transplants – the direct transfer of stool (or portions of the stool) from a healthy person into the gut of an ill person –  may provide a larger, more lasting impact.

The Study

Dr. Julian Kenyon runs The Dove Clinic for Integrated Medicine, in the U.K.  which uses both an oral (pre and probiotics, diet, etc.) and fecal transplant approach to gut improvement.  In this study  – 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 – he compared the results of the two.

Kenyon divided his patients into two groups of 21; one was treated with nutritional remedies, probiotics, prebiotics, and dietary and lifestyle advice. The second group, most of whom had failed the first treatment approach, were given 10 fecal implants over ten days.

As seventy percent of the group also had irritable bowel syndrome (IBS) this may have been a more gut impacted group. In an effort to deliver a maximum diversity of flora, each of the implants came from a different, “carefully screened” donor.

The Taymount Laboratory provided the implants. The laboratory runs a 10-day gut flora transplant (FMT) program which starts off with a colon cleanse and includes dietary advice.

While it’s not possible to test donors for all possible pathogens (some of which may be undetectable), the donors’ blood was screened for the following pathogens: Human Immunodeficiency Virus (HIV) 1/2, Hepatitis A. IgM, Hepatitis B (HBsAg), Hepatitis C antibody, Syphilis, IgG/IgM, Full Blood Count, Urea and Electrolytes, Ferritin, C-Reactive Protein, Tissue Transglutaminase, CMV, H-Pylori.

Their stool samples were screened for: Campylobacter (Jejuni, Coli and Upsalliensis), Clostridium Difficile (A/B), Salmonella, Yersinia Enterocolitica, Vibrio (Parahaemolyticus Vulnificus and Cholera), Diarrhoea-causing E-Coli/Shigella, Enteroaggregative E-Coli (EAC), Enteropathogenic E-Coli (EPEC), Enterotoxigenic E-Coli (ETEC), Shiga-like toxin-producing E-Coli (STEC), E-Coli 0157, Shigella/Enteroinvasive E-Coli (EIEC), Cryptosporidium, Cyclospora Cayetanesis, Entamoeba Hystolitica, Giardiolambia, Adenovirus, Astrovirus, Norovirus GI/GLL, Rotavirusa, Sapovirus.

The Taymount Laboratory website reports that there’s no documented evidence  infections being passed via fecal transplants. As of this month, though, that’s no longer true. The FDA recently reported on two multi-drug resistant infections passed via fecal transplants.

Different kinds of transplant techniques are used. Some clinics use a tube to insert the transplant through the esophagus and into the stomach or the duodenum. This clinic uses a rectal catheter to deliver the goodies into the large bowel or colon. Others use something called a colonoscope.  Some companies are creating pills that can be swallowed.

Results

The study reported on past patient outcomes (retrospective case-control) using a vague metric indeed, “% improvement”, to assess results. While the statistics were crude, the data presented – in short statements describing how the patients improved or didn’t improve – provided vivid reading indeed.

The statistics (Mann-Whitney test of “% improvement:  U=111.5, p=.003) indicated dramatically increased improvements in the fecal transplant group compared to the “oral” (probiotic, nutritional supplements, etc.) group.

The Fecal Transplant Group

As noted above the fecal transplant group were tough cases: they hadn’t responded to Dr. Kenyon’s normal treatment regiment of supplements, pre and pro-biotics etc.

Dr. Kenyon’s data suggested that little grey area existed:  the fecal transplants either hit or missed: when they hit, they tended to work quite well; when they missed, they pretty much missed entirely.

In quite a few cases, the transplants were associated with some striking increases in energy. Kenyon reported that the energy levels of 7 of the fecal transplant group returned to normal, practically normal or almost normal. (In one case she simply said “chronic fatigue syndrome resolved”.)

The increases in energy did not come in the newly ill either. Six people who’d had ME/CFS “for many years” either totally recovered or were dramatically improved. One 66 year old person who apparently got ill following an amoebiasis infection in the Himalayas over 30 years ago returned to normal health.

The energy levels of six others were “significantly improved”, “much improved”, “improved dramatically” or “consistently improved”.

In a few cases, it was impossible to determine if improvements in energy had occurred. For instance, Dr. Kenyon reported that the gut problems of a person with severe vaginal thrush, recurrent abdominal bloating, IBS and ME/CFS largely disappeared but didn’t assess her energy levels.  The same occurred with another person with IBS: their IBS disappeared but we weren’t told if her energy levels improved as well.

Four people (@20%)  were either unable to tolerate the implants (n=2) or showed no improvement (n=2).

Table 1. Chronic Fatigue Syndrome Patients treated with FMT

Patient: %Improved
(F)Age 36 Severe Chronic Fatigue Syndrome with Irritable Bowel Syndrome for three years, following multiple antibiotics for Quinsy. Severe debilitating Irritable Bowel, with lack of energy. She had FMT in February 2018, following this the Irritable Bowel cleared up, energy significantly better. Has always had many food sensitivities, they are gradually beginning to resolve. A further course of FMT is under consideration. 70%
(F)Age 40 Polycystic Ovary Syndrome, also Irritable Bowel and a Chronic Fatigue. She had FMT in October 2017, following the FMT her energy is much improved and is practically normal, has remained so ever since. Also, her mood is more stable. 90%
(F)Age 59 Severe Vaginal Thrush for five years, recurrent abdominal bloating, Irritable Bowel Syndrome and Chronic Fatigue Syndrome. Clostridium Difficile in 2013. She had FMT in May 2017, two months after FMT the Irritable Bowel cleared up completely, her skin is significantly better than it was prior to treatment, Vaginal Thrush is still something of a problem, but not as bad as it was. She finds she is no longer craving sweet foods. 90%
(F)Age 73 History over many years of Irritable Bowel Syndrome and Chronic Fatigue Syndrome, also overweight. We treated her with FMT in December 2017, the Irritable Bowel Syndrome cleared up during the two months following the FMT and has remained normal. She is still having difficulty in losing weight. 60%
(F)Age 43 Several years history of Chronic Fatigue Syndrome. Also, Irritable Bowel Syndrome. We carried out FMT in January 2017, since that time the IBS has cleared up, energy significantly improved and has remained so. 70%
(F)Age 42 8-year history of Chronic Fatigue Syndrome. Also, Irritable Bowel Syndrome. We treated her with FMT in November 2018, I first saw her in May 2018. Since the FMT her persistent Oral Thrush has cleared, her digestion has improved, and the Irritable Bowel has settled down. She is no longer constipated. Her energy improved almost to normal following the FMT but has had a bit of a relapse since significant family upset, which has been draining on her energy reserves. 95%
(F)Age 73 Insomnia, persistent Nausea, poor energy due to Chronic Fatigue Syndrome, lack of appetite. Has lost a great deal of weight over several years. Complains of bad body odour. We carried out FMT in February 2017. Since then the Nausea has disappeared, the appetite has returned, and she is now putting on weight. 95%
(F)Age 46 I first saw her in 2016 with a history of Chronic Fatigue Syndrome and Fibromyalgia for several years. We carried out FMT in January 2017, no significant response to the FMT. We are thinking of repeating the FMT. 0%
(F)Age 66 At the age of 26 this patient contracted amoebiasis in the Himalayas, then she had lots of antibiotics for various indications and has had Irritable Bowel Syndrome and Chronic Fatigue Syndrome since the age of 30. Also, she has been diagnosed with SIBO and had developed multiple food sensitivities. We carried out FMT in July 2017, her Irritable Bowel Syndrome normalised over the next four weeks, her energy improved and became normal, then she had exposure to contaminated water, probably containing parasites, then she relapsed to some extent and had to have a second course of FMT in December 2017. Since that time, she has been completely normal. 95%
(F)Age 47 This patient has had regular courses of antibiotics since the age of 12 for a range of reasons. She has had many years of Chronic Fatigue and Irritable Bowel Syndrome. We carried out FMT in August 2018, since then the Irritable Bowel has settled down and the Chronic Fatigue has resolved. 90%
(F)Age 73 This patient has had a history of recurrent Candidiasis over many years, including Oral Thrush. She has many years history of Irritable Bowel Syndrome and Chronic Fatigue Syndrome. We carried out FMT on her in November 2018. Since that time, she has had no more Candidiasis, the Irritable Bowel has settled down, and there is significant maintained improvement in her energy levels. 85%
(F)Age 70 This patient has had a history over many decades of a Chronic Fatigue Syndrome. We used FMT in April 2017, there was no improvement in her energy levels since the FMT. 0%
(F)Age 70 Chronic Fatigue Syndrome for 20 years, also Addison’s Disease, Fibromyalgia and Irritable Bowel Syndrome. FMT carried out in August 2018. She reacted to several of the Implants with Diarrhoea, so we had to stop the Implants. Clinically, no change. 0%
(F)Age 61 20-year history of Chronic Fatigue Syndrome and Fibromyalgia, also Irritable Bowel Syndrome. Oral treatment did not work. FMT was carried out in April 2018. Following FMT her energy improved dramatically and has remained improved. The Irritable Bowel Syndrome has cleared up and she also lost one and a half stone in weight. 90%
(F)Age 41 Many years history of Chronic Fatigue Syndrome, multiple food sensitivities and Irritable Bowel Syndrome. FMT carried out in September 2018. She managed to tolerate half of the Implants and then temporarily had to stop. No clinical improvement yet. 0%
(F)Age 44 Eight-year history of Chronic Fatigue Syndrome getting significantly worse. Also, Irritable Bowel Syndrome. We carried out FMT on her in October 2018. Her Irritable Bowel Syndrome has cleared up completely, energy is beginning to recover. 75%
(F)Age 56 History of Chronic Fatigue Syndrome, Irritable Bowel Syndrome for many years. Resistant to oral approaches for treating both of these conditions. We carried out FMT in May 2018. Since that time her energy is significantly better, and remains better, bowel function is now normal. 80%
(F)Age 70 Chronic Fatigue Syndrome for many years, also Irritable Bowel Syndrome. We treated her with FMT in October 2017. Bowel habit is now normal, resistance to intercurrent infections has now returned to normal, energy was consistently improved and remains so. 95%
(M)Age 65 Chronic Fatigue Syndrome for many years. We treated him with FMT in November 2017. Energy has returned to normal. 95%
(F)Age 52 This patient has had Chronic Fatigue Syndrome for many years. Also, Irritable Bowel Syndrome. We treated her with FMT in July 2018. Since then, her energy has returned to normal and she has now been able to return to work, her gut has also returned to normal. 95%
(F)Age 48 History of Chronic Fatigue Syndrome and Irritable Bowel for many years. We carried out FMT on her in March 2018. Since then her Irritable Bowel Syndrome has cleared up completely and also her energy has returned to normal. 95%

 

The Standard or Oral Approach Group

The other group treated with nutritional remedies, probiotics, prebiotics, and dietary and lifestyle advice generally did improve – but not nearly to the extent that the fecal transplant group did.

Dr. Kenyon reported that most had improved by 30-40% (N=10), two people – one who had had ME/CFS for decades but improved rapidly on Dr. Kenyon’s regimen – improved by 90%, two by 50-75% and the rest with lesser improvements.

Dr. Kenyon, not surprisingly, concluded that fecal transplants are more effective at repairing gut flora than pre and probiotics. While two people responded poorly to the transplants, Kenyon reported they generally provide a safe and potentially effective approach to ME/CFS.

Fecal Transplants

That begs the question – just exactly what is a fecal transplant? It turns out that a variety of transplants are done. Some transplants transfer all the fecal matter while others filter out other components and only transfer the bacteria.

The Taymount Clinic reported that they implant only bacterial matter.  People who go the home route obviously transfer everything: get poop from a healthy donor, and then use saline solution and an enema to get the poop in (which they hold for as long as possible).

As might be imagined raw fecal matter contains all sorts of substances of which  bacteria make up just one component. Generally about 75% water and 25% solid matter, bacteria make up between 25-55% of the solid matter and 6-13% of the total matter. That’s a lot of bacteria – approximately one hundred billion per gram of wet stool – although only  3.0%–6.6% of total fecal matter may be composed of viable bacteria.

Some History

Other components found in fecal matter include significant numbers of epithelial cells that have flaked off the colon (colonocytes), single-celled organisms call archeae and other primitive organisms, viruses, fungi and metabolites.

Clostridium difficile

A Clostridium difficile outbreak in the U.S. caused doctors to search for alternative treatments

In the U.S.. fecal transplants have mostly been used to battle life-threatening Clostridium difficile infections. Transplants got a boost in early 2000’s after a particularly virulent form of C. difficile hit the U.S., causing gastroenterologists and patients to scramble for more effective treatments.  Six hundred and twenty-five thousand C. difficile cases are believed to occur in the U.S and Europe every year.

One women’s unstoppable C. difficile infection prompted her gastroenterologist to tell her, after seven months, to get her affairs in order. She ended up using her daughter as a donor in 2014. She reported:

“My gut drank up the infusion as if it were dying of thirst. My colon, after five months of near-constant spasms, recovered in one transformative instant. Overnight, I went from having 30 bowel movements a day to having one. For breakfast the next morning, I ate a quesadilla loaded with black beans, cheese, salsa, lettuce, and guacamole. I’ve had no recurrence of C. diff. since.”

Four pharmaceutical companies in the U.S. reportedly provide stool donors to doctors – mostly for C. difficile infections.  In 2016 the FDA’s decision to require stool banks to provide an expensive investigational new drug application (IND) in order to provide stool resulted in the agency being accused of erecting barriers to treatment which would result, among other things, in more unregulated, home use. Other less restrictive measures were proposed.

Although it’s believed that tens of thousands of fecal transplants have been done safely, the FDA recently reported for the first time that multi-drug resistant infections were transferred via fecal transplants to two people one of whom had died. The death occurred in a man with a compromised immune system who had been given a transplant which had not been screened for a type of resistant E. coli,. As a result, as of July 15th of this year, the FDA is requiring stool transplant companies to screen their poop for a variety of multi-drug resistant organisms.

Conclusion

The first stab at a fecal transplant study in ME/CFS was weak in statistics and strong in vivid detail. Dr. Kenyon’s fecal transplants – used mostly in ME/CFS plus IBS patients –  used only bacterial matter and were done in bulk – ten transplants over ten days – from different donors to ensure that a wide variety of flora was transmitted.

With seven of the 21 treatment resistant patients reportedly returning to full or near normal health, and six receiving significant improvements in energy, the results were surprisingly good.

While the results were promisingly we need more rigorous studies and one, funded by Invest In ME and lead by Peter Johnsen, a Norwegian researcher is underway. Data collection from the 80 person, randomized, placebo-controlled study at the University Hospital of North Norway started in February of this year and is slated to wind up in February of next year. I couldn’t tell how many fecal transplants would be given but changes in gut microbiome, metagenome, metabolome, gut barrier integrity and immune functioning will be assessed at three time points during the year long study.

Johnsen’s 2018 (n=86) study found that fecal transplants “provided significant symptom relief for people with IBS.  (In a nice bit of collaboration Maureen Hanson will be testing some of Johnsen’s samples for gut dysbiosis.)

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35 Comments

  • Tim

    August 24, 2019 at 7:10 pm - Reply

    That’s Taymount, not Tantamount.

    • Cort Johnson

      August 24, 2019 at 10:05 pm - Reply

      Fixed – We had Taymount right most of the time but missed it in one place. Any thoughts on the study?

  • dejurgen

    August 24, 2019 at 9:29 pm - Reply

    I wonder two things:
    * Would there be studies where a comparison is made between matching the blood group of the donors versus not matching it? The non-proven concept of the blood group diet starts from the assumption that having a different blood group equals having different immune reactions equals having different gut reactions (of the immune system) to the food. While I feel that the creators of this idea overgeneralize, they may have a valid point.
    * Are there any studies where a more pharmaceutical clean mix of for example a dozen bacterial strains are inserted the FMT way rather then the classic probiotics way?

  • Lee

    August 24, 2019 at 10:00 pm - Reply

    I have had my eye on FMT for many years, and everything I have seen has shown that people do get better, but that its does not last. Frequently 6 months later people are right back where they started.

    • Cort Johnson

      August 24, 2019 at 10:11 pm - Reply

      Having people get better and then decline later may not be that bad of a result. I can see two reasons people that might happen. One – placebo effect and two – the poop transplant did alter their gut bacteria and it did improve their health but then their gut flora slipped back. If that’s the case perhaps they just need more transplants to more permanently alter their system.

      Note that C. difficle infections can and do kill people and fecal transplants can work on people who’ve had recurrent infections. They are strong stuff!

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5666691/

      In this setting, FMT is highly effective for treating multiple recurrent CDIs with a nearly 90% cure rate in many observational studies.81,82 In the single randomized control trial for FMT, recurrent CDI was resolved in 81% of patients compared with 31% who received nontapered/nonpulsed vancomycin.83 FMT performed via lower routes of administration (colonoscopy or enema) appear to be more successful than upper routes (gastroscopy, or nasogastric and nasointestinal tubes).

      The Invest in ME study is really good in that it’s going to assess gut flora, metagenomics, metabolomics, immune functioning over a year and see just what’s going on. I wonder how many fecal transplants they’re doing. Taymount does ten!

  • Rhonda

    August 24, 2019 at 10:08 pm - Reply

    I would like to see more on this because my cronic fatigue syndrome didn’t start till I had c diff which I picked up from a Porto potties at a festival then had a reoccurrence about 3 months later. But have been sick now about 7 years with the gut problem well cfs but I also have fibromyalgia and several other things goin on. I’m 55.

    • Cort Johnson

      August 24, 2019 at 10:19 pm - Reply

      Wow. That’s interesting. It’s hard to tell as any strong infection – whether in the gut or elsewhere – is enough to bring on ME/CFS – but one would certainly focus on the gut in your case. That is one nasty bug which undoubtedly truly messes with the gut flora. It’s certainly seems like an interesting option in your case.

      For me, I had a case of Giardia about a year or two before I became ill. I always wonder if that had something to do with it. It’s the only infection I could identify. Then I was fruitlessly downing laxatives and all sorts of junk etc. to prepare for a colonoscopy (didn’t work) five months ago. During that time I picked up a cold which I have not been able to shake. I wonder if my suffering gut had something to do with it (???)

  • Cort Johnson

    August 24, 2019 at 10:14 pm - Reply

    I don’t know if any studies are taking into account blood donor type – an interesting question. Some companies are working on synthetic or manufactured fecal transplants. I think one issue is the cost; it looks like it would be quite expensive. Otherwise I don’t know of probiotics being administered that way…interesting idea.

  • ManShadow

    August 24, 2019 at 11:34 pm - Reply

    I feel like this report is missing some vital info such as diagnosing criteria, how the % improvement in energy was determined, etc. How does a person self-report their change in energy levels?
    Also, the Norwegian study, it’s primary measure is energy levels at 3 months after treatment. Given the high rate of reported relapse from other studies of FMT in ME/CFS, should they not be following up at 6 and 12 months also?
    It just seems as though these are another two examples of studies that offer interesting results but may not hold up to rigorous analysis.
    Anyway, I don’t mean to take a dump on these interesting findings, but I’m just having trouble seeing the value of these studies.

    • Cort Johnson

      August 25, 2019 at 3:42 am - Reply

      Kenyon’s report was very light statistics for sure but it did have patient histories Remember these were patients who’d tried and failed the oral approach – so they were tough cases! Then the 10 person fecal transplant trial seemed to work very well for many of them. I found that really interesting and I always love to hear case histories 🙂

      I couldn’t find any other fecal transplant studies in ME/CFS. I don’t know why the Invest in ME study is stopping measuring some factors at 3 months and measuring others for longer but this pretty large study will tell us whether fecal transplants are effective over 3 months, it will help us learn about their effects on the immune system, on the gut flora, metabolomics, etc.over the long term as well. While it may not provided everything wanted I think it will be a major step forward in a very important area.

      If its successful I’m sure we will see larger, longer and more comprehensive studies. It was good to see Maureen Hanson collaborating with this group as well.

  • Helen Schoenfeld

    August 25, 2019 at 3:27 am - Reply

    I’m wondering if the test subjects had been screened for SIBO, which can act just like IBS. So many people with m.e. have it, and I wouldn’t expect that fecal transplant would help with the gut symptoms if SIBO is the culprit.

  • Cort Johnson

    August 25, 2019 at 3:53 am - Reply

    They excluded people with chronic diarrhea, constipation, inflammatory bowel disease
    colorectal polyps and high levels of dysbiosis. No mention of SIBO. In an interview with Dr. Chedda coming up she reports finding a high frequency of SIBO in ME/CFS.

  • Howard

    August 25, 2019 at 4:00 am - Reply

    An interesting study but how do you measure the increase in energy clinically?

    I have been battling with ME/CFS for 16 years now and my energy levels have been improving in the last 5 years. I have been concentrating on my Gut for many years as I found it to be a good indicator of my overall health, the better my gut was the healthier I was and the more energy I had. I have been fortunate to have been able to improve my energy levels by careful pacing and supplements.

    I am currently using a protocol by Microbiome Labs which has also lifted my energy levels, A Sporebiotic, Prebiotic & Mucosa to restore the gut lining which is returning my Bowel movement back to normal after a course of antibiotics.

    One of my energy/health indicators has been how long I could drive. In the past I had to drive a Camper Van and sleep whenever I got exhausted (even in shopping centre carparks) it might have been within Half an Hour of driving or less. Then I was able to drive for an hour, maximum, for many years but now I can drive a few hours a day, without days of recovery. This has been a good indicator of my energy levels.

    • Cort Johnson

      August 25, 2019 at 1:18 pm - Reply

      It’s one of the great problems. There are quite a few questionnaires that can be used to measure functionality and symptom levels. Dr. Lerner found that symptoms tend to decline when energy levels rise I think reduction in symptoms is a kind of good indirect analogue but its true that measuring energy or its reverse fatigue in clinical trials is a real issue.

      It’s very encouraging to hear that gut manipulation is helping with energy

  • Dave

    August 25, 2019 at 10:50 am - Reply

    I was curious if this was merely a temporary improvement during treatment, but some of the stories seem to indicate persistence. The reason I was skeptical was because I know from personal experience that the immune system can be distracted by external influences, which is why my CFS/ME symptoms disappeared while I had poison ivy. A web search revealed that Dr. David Bell knew a farmer who had a similar experience.

    • Cort Johnson

      August 25, 2019 at 12:55 pm - Reply

      Isn’t that something. I wonder if the immune system didn’t just perk up as it battled the effects of the poison ivy and in doing so had some good effects. During some stages of pregnancy some women with ME/CFS feel much better because of hormonal changes.

      Given fecal transplants ability to basically save the lives of people with C. difficile infections I’m not surprised of their power. I think of them as a new adjunct – something to be used as part of a treatment protocol which will probably be quite helpful for some. I’m really looking forward to the result of the Invest in ME study.

  • Francis Martin

    August 25, 2019 at 11:11 am - Reply

    Hi Fluge and Mella used activity monitors Fitbit type things to monitor effect of treatment. Dont know wbat these studies used. From my mobile phone!

    • Cort Johnson

      August 25, 2019 at 12:49 pm - Reply

      Yes! They’re not perfect but they do give a general idea. I can’t imagine that they won’t be used more and more. I don’t blame Kenyon – a doctor trying on his own to get the word out. I don’t know if he got any funding at all. They sure seem like a slam dunk for any funded trial, though.

  • Chris A

    August 25, 2019 at 11:22 am - Reply

    Excellent article as ever, thanks Cort. I actually find the case histories of considerable interest and relevance but I think it’s a shame that Dr Kenyon didn’t use some simple objective measures of outcome such as actigraphy, return-to-work / state benefits data perhaps which would have added something to his analysis. (As a side note: I’m finding doing actigraphy myself really interesting, and it’s cheap and easy… I’m managing about 3000 steps per day ave, but this is significantly reduced during crashes, so the number of steps do seem to correlate pretty well with how I’m feeling).

    I remember first hearing about the gut microbiome 7-8 yrs ago at the London Invest in ME conference – I think Dr De Meirlier briefly mentioned it during the Q&A session saying that he thought it worthy of further research. I actually remember thinking at the time that I thought the whole concept sounded like a load of ‘twaddle’ and that it would be a waste of (very limited) ME-research funds… but I’m happy to admit that I was completely wrong! Research into the gut microbiome has exploded since and it’s a fascinating field of medicine. It was really interesting to note in one of your recent blogs that Dr Ron Davis is analysing the gut microbiome and found an unexpected link to Dr Phair’s IDO-trap hypothesis – hopefully there’ll be a bit more info on this given at the upcoming Stanford Symposium perhaps?

    One issue I’m intrigued about and wondered if it might make a good topic for a future blog (but only an idea.. I’m not wanting to give you even more work to do as I’m sure you have plenty on your plate already!) would be the issue of commercial testing of the gut microbiome. I’ve had ME for 16 years, which I contracted a few weeks after a severe episode of gastroenteritis in Egypt – although I’ve never found any obvious gut pathogen on testing, I’ve always wondered if there was a link (though I’m also aware the two may be uncorrelated). I’ve had a few gut symptoms over the years, from duodenitis to mild/moderate IBS, though the former resolved completely and the latter much improved on a keto (grain- and dairy-free) diet.

    But I was intrigued enough by the ongoing microbiome research to undergo a bit of testing recently. First I did the British Gut Project (a part of the American Gut Project) which showed very low species diversity. Then I underwent testing last year by Viome, which claims to use a more advanced RNA testing procedure than can also measure microbiome functionality and metabolic pathway assessment. Again, my tests showed very low species diversity (I was actually around the 0th centile for ‘micriobial richness’… and this is despite eating probiotic foods for years so I’m assuming that my own microbiome is far from ideal!).

    But I really have no idea on the validity of this testing as I can’t critique the science behind the various different techniques that the companies use. My suspicion is that it’s probably too early in the field of microbiome research to be confident about the accuracy and relevance of the commercial testing that is currently on offer but I did the tests anyway, mainly for interest but also to hopefully at least contribute to the ongoing understanding of the concept (Viome supposedly continually updates it recommendations via AI as the research changes and with the more participants whose samples it analyses). But it’d be really interesting to hear what an expert in the field (Dr Hanson perhaps, or Prof Carding here in the UK) thinks of the commercial testing options or whether we need a better understanding of the microbiome before we can be confident in such analysis.

    Thanks as ever for your great work.

    • Cort Johnson

      August 25, 2019 at 12:59 pm - Reply

      That is a great idea! I have precisely the same worries and posted a blog on Simmaron which suggested that testing stool samples only gets at part of the picture. How intriguing, though, that so far your results are consistent – very, very low gut diversity – despite your good diet. (You should be in a study!)

  • Chris

    August 25, 2019 at 3:08 pm - Reply

    Hi Cort and fellow sufferers,

    I had been planning on writing about my home based FMT that I did in the beginning of the year. The short version is that it had a very positive impact for several months on both my IBS and CFS. On some days, I actually thought for the first time in years, I feel good. My stools improved and my energy improved. However, it was not perfect and over time my stools consistency and my energy levels have decreased. I am still improved from where I was last year, but frustrated again. Unfortunately, my donor left for college and had antibiotics when getting his wisdom teeth out. The hardest part of the FMT is finding a healthy donor especially when you are stuck at home with CFS. I think the main issue with why things went down hill is that my old bacteria, whether in the mouth, appendix, or gut was able to reassert itself over time. When people have C Diff, they have usually been on multiple rounds of antibiotics before they get the poop pills. I continue to work on my gut and Have been following Ken Lassesens cfsremission to try and move the needle in the right direction. That being said the FMT was the best thing I have tried. If anyone knows some healthy people in the Miami area that are willing to be donors, let me know as I am willing to try again.

  • Chris

    August 25, 2019 at 3:28 pm - Reply

    Hi Cort,

    I have been trying to reply to various threads but it does not seem to be allowing me to do that. So I will add a few random comments. One for your ongoing cold, try Vitamin – C to bowel tolerance for a month. For the comment on SIBO, SIBO and IBS go hand in hand and eradicating SIBO before doing FMT would be beneficial. Another issue that is related are biofilms. One more comment, with regard to the studies not being useful due to lack of specific metrics, I have specific metrics as well as subjective metrics showing improvement from the FMT.

  • recovered

    August 25, 2019 at 3:52 pm - Reply

    I tried an FMT at home after finding a donor over http://www.microbioma.org and could recover from severe bedbound to mild-moderate depending on the day, unfortunately my donor had an accident and had to take many antibiotics so I had to stop using him, If I had continued long enough I think I woiuld have recovered. I’m stil looking.

  • Debra

    August 25, 2019 at 4:46 pm - Reply

    “They excluded people with chronic diarrhea, constipation, inflammatory bowel disease
    colorectal polyps and high levels of dysbiosis.”

    Hi Cort, There were patients in the study with IBS, and IBS symptoms are chronic diarrhea and constipation and dysbiosis, so this is a little confusing.

    But I love this article and am so thankful you posted this, and am very interested in the FMT!

  • Andy

    August 25, 2019 at 5:25 pm - Reply

    Great article, promising results – not the first though!!!! – Thomas Borody at the centre for digestive diseases studied this in 2012.

    https://www.researchgate.net/publication/281477253_The_GI_microbiome_and_its_role_in_Chronic_Fatigue_Syndrome_A_summary_of_bacteriotherapy_online

  • Andy

    August 25, 2019 at 5:30 pm - Reply

    Encouraging results – this is actually the second study in to FMT for ME/CFS though.

    The first was at the centre of digestive diseases in Sydney – the “response rate was 70%”

    https://www.researchgate.net/publication/281477253_The_GI_microbiome_and_its_role_in_Chronic_Fatigue_Syndrome_A_summary_of_bacteriotherapy_online?fbclid=IwAR1ob69VN2hc-1-jQdhudPaNiPvbp9TUyp9QNrpI9tVxDiQm6DykV2SewNA

  • PamC

    August 25, 2019 at 6:16 pm - Reply

    I have also been tracking my microbiome for several years and despite lots of good probiotics and even adding natural oats to my diet since last January my diversity has only moved up to 46% but a year ago it was 8%. I eat lots of vegetables daily and have a very healthy diet though traditional doctors would say I eat too much fat because I love coconut oil with natural peanut butter!

    The weird thing is that UBIOME say that overall I am at the 94th percentile compared with healthy controls despite me having severe SIBO and IBS which is quite resistant to treatment and daily bouts of big drops in my energy meaning I spent a big amount of each day horizontal of my couch.

    My Fitbit shows that over the last month I have averaged 9000 steps a day which obviously means I am not a severe sufferer, however my health is very compromised and I live an extremely limited lifestyle

    I have been tempted for a while to try either the Dove Clinic or Taymount as I live in south east England, but they are very expensive plus one has to pay for accommodation for 2 weeks and of course there is no guarantee.

    Thanks Cort for all your hard work plus all the ups and downs of research into this illness (been unwell since 1979 after a very bad bout of flu but was able to work until 2000 when my body crashed completely with the menopause playing a part I believe).

  • ManShadow

    August 26, 2019 at 3:31 am - Reply

    @cort I’m unable to reply to your reply, so putting it down here. I just took a closer look and see that they are measuring anxiety and some other factors up to 12 months. I think fatigue was one…I actually looked at it yesterday and I’m too lazy to go back again. Based on these additional factors being measure up to 12 months, I agree that this data will be very handy.
    My initial response was negative because this just looked like another couple of studies that were promising but not robust enough to contribute meaningful data. I take that back now.

    The other study I’m referring to is one done in Japan a fair while back. The had some full recoveries from FMT done in PWMEs……on doing an extensive websearch, I’m unable to locate any info about this study. Wow, is my memory that bad? Maybe I have the country wrong, but I’m certain I’ve read about a study where there was quite a high level of success. It’s bugging the hell out of me now, maybe my scrambled brain is mis-remembering or mashing up details of separate studies into a fantasy study that actually never occurred? You’d think I’d invent something a bit more palatable then drinking a poo milkshake in reverse though…
    One thing I did find that is promising though, is the blog testimonial from Carrot Quinn about their full recovery after home FMT. Well written and very interesting content.

  • dejurgen

    August 26, 2019 at 10:01 am - Reply

    @Dave, Posion Ivy observation.

    I Haven’t experienced a clear reaction to poison ivy reactio yet, but I had an interesting likewise experience. I used to have a number of small ailments before I had ME. Then they disappeared near completely. Now I get slowly better and one by one they seem to reappear. It seems my disease had put them on hold.
    One of the things I used to have from time to time is a moderate amount of itching dot rash on my feet. It seems to be of the immune related type. The last few weeks after overdoing it, it came back. But I have been overdoing it before whilst it didn’t came back. The biggest difference there seems to be is that now, having improved some more and having hot weather, my feet skin color is much more pink compared to the pale color last summer. That points to improved blood flow in the limbs and feet.
    As I believe one has to have enough blood circulation to have a “full” immune response, maybe I didn’t have this feet rash because blood flow was to poor? Now linking it to poison ivy. Many ME patients have low blood volumes and poor blood flow, mainly in the extremities like the limbs and skin. If poison ivy causes a rash in the skin it draws quite a lot of blood flow to it, where it otherwise would have flown more to the “core” of the body like the brain. So the brain and some organs may see less blood flow and with it may see reduced inflammatory reactions. That would be in line with my suspicion that our reduced blood flows may be used in an attempt to create an anti-inflammatory mechanism.
    Something likewise could be said about temporary improvement in symptoms in pregnant woman. During pregnancy, the immune system or at least the auto-immune prone component of it, is turn down in order to avoid the immune system to attack the “foreign” body growing in the whom. A lesser (auto-)immune response could be responsible for the reduced symptoms. And after the pregnancy, the immune system would have to clean up extra from being 9 months “too easy”, resulting in a worse flare. Would anyone know if that temporary improvement during pregnancy happens to other chronic immune diseases like RA too?

  • Chris

    August 26, 2019 at 3:25 pm - Reply

    My wife ‘s FM went away when she was pregnant and never came back. She did not have the fatigue issues, but she did have the pain and all of the trigger points.

  • Cort Johnson

    August 26, 2019 at 7:40 pm - Reply

    It’s too bad you had a setback but your experience is encouraging! If you got those positive results from one donor i wonder what effects ten treatments from ten separate donors would have had (?). If the Invest in ME study gets good results perhaps these treatments will become more widely available.

  • Cort Johnson

    August 26, 2019 at 7:45 pm - Reply

    Whoa! That’s a great response rate and thanks for passing it on. 🙂 I missed it – unfortunately it did not make it into PubMed. Encouraging news 🙂

  • roy

    August 26, 2019 at 8:00 pm - Reply

    My ME/CFS started after a bad case of food poisoning whilst on holiday in Tunisia. I then developed ulcerative colitis which cleared up some 8 years later never to be seen again.

  • Jutta

    August 27, 2019 at 1:34 pm - Reply

    Thanks for this encouraging study. After a heavy diarrhea caused by salmonellae my ME/CFS and IBS started three years ago. There are only few things I can still eat. Since then I have been taken Probiotics. Parasites and Candidas have been found and were removed. I took Xifaxan and it went better, but only for a short time. After two years I asked my gastroenterologist for the way to a Fecal Transplantation and he seemed to be amused. Now I see my way. I will try to get into Contact with the Dove Clinic and hope I can afford the treatment. I live in Germany.

    • Cort Johnson

      August 27, 2019 at 9:55 pm - Reply

      Good luck Jutta! Please let us know how it goes. I think of all those people in Norway, I think it is, who’ve been sick for all this years after the Giardiasis outbreak there. What a great study that would make.

      If you can get the treatment done please let us know how it goes.