Fecal transplants in ME/CFS

I think fecal transplants in ME/CFS needs its own thread for facts and discussions.

Here are tweets by Emma Joy from the conference IIME13 in London yesterday. Thank you, Emma, for all your work.


Emma Joy‏ @emmajoy6
Dr Johnsen: fecal microbiota transplantation in IBS. 1st RCT published in Lancet. Symptom overlap with ME, abdominal pain and change in bowel habits. 90% of those with IBS experience fatigue, 90% of those with ME have IBS. #IIMEC13

12:56 - 1 juni 2018

1. 1. 
      Emma Joy‏ @emmajoy6 18 timför 18 timmar sedan
      Feces infusion from healthy donor to GI tract of patient.Lots of DIY info on internet!Enthusiasm needs to balanced with caution as it’s a potent treatment.Microbiota gut brain axis.Altered diversity and composition, altered immune profile, and altered central processing #IIMEC13
      
      
      
   2. 
      Emma Joy‏ @emmajoy6 18 timför 18 timmar sedan
      Probiotics, diet and antibiotics used to good effect. 65% relief for those with fct vs 43% in placebo group at 3 months = significant result. No difference at 12 months. Effect on fatigue 60% vs 53% placebo. #IIMEC13
      
      
      
   3. 
      Emma Joy‏ @emmajoy6 18 timför 18 timmar sedan
      Comeback study - ME can be triggered by disbyosis, FMT can alleviate symptoms. Using Canadian criteria n=40 Treatment n=40 placebo. Primary endpoint 3 months secondary endpoint 12 months. Measure change in responders using Chalder Fatigue Scale. #IIMEC13
      
      
      
   4. 
      Emma Joy‏ @emmajoy6 18 timför 18 timmar sedan
      12 month follow up questionnaire for medications being taken, probiotics and food frequency. Enema technique with tilted table to distribute evenly. Same technique as colon x Ray. #IIMEC13
      
      
      
   5. 
      Emma Joy‏ @emmajoy6 18 timför 18 timmar sedan
      Collaborating with Simon Carding and Hansen with explorative analysis. Trying to get biomarkers for disruption of gut barrier. Feces urine and blood will be biobanked for metabolically and other omits platforms. #IIMEC13
      
      
      
   6. 
      Emma Joy‏ @emmajoy6 18 timför 18 timmar sedan
      I asked whether they screened for parasites in patients beforehand to which they responded yes they do. #IIMEC13
2. 1. Wilhelmina Jenkins‏ @minadjenkins 18 timför 18 timmar sedan
      Svar till @emmajoy6
      Doesn't 90% of ME patients having IBS seem high? Maybe as a symptom at some point during the course of the disease?
      
      
      
   2. 
      Sonya‏ @sonya_lala_ 7 timför 7 timmar sedan
      Agree that no way do 90% of #pwme have IBS. Of those I know with #MEcfs, I’d say less than 50% have IBS.
      
      
      
   3. 
      Wilhelmina Jenkins‏ @minadjenkins 6 timför 6 timmar sedan
      That would be my experience also.
3. 1. blueyoyoma‏ @blueyoyoma 17 timför 17 timmar sedan
      Svar till @emmajoy6
      Don Lewis in Melbourne, Australia focuses heavily on the gut in treatment of #MECFS. He was interviewed last night on @ABCaustralia with @Dr_M_Guthridge. Hopefully he will incorporate FMT into his treatment protocol in future
      
      
      

 

I think with all these studies It would be good to differentiate IBS from ME From the start. By this I mean, IBS can be a symptom in people without ME so how do you know whether there is a connection at all and this is not just symptomatic of other things going on? That means we need controls with all studies that show people with me and ibs, people without me and ibs and healthy no ibs controls for all studies. Many studies I have seen do not do this ...they assume a connection.

A lot of the studies on ibs are dubious so in this area we have limited quality studies generally that don’t look at psychological underpinning.

I’m interested in the gut biome but I think unlike tapping into what we know already for fields such as immunology or cell biology we are a million miles off knowing the significance of microbiome in people without ME so this field is wide open. We don’t know enough yet to draw very insightful conclusions.

I must admit to being discouraged that research money is being spent in this high risk area rather than on a true biomarker or understanding aetiology etc.

Seems like throwing ideas at the wall rather than focussing attention in a strategic way. This seems to be too out there for me when there are stronger leads to follow up on and we have so little money.

I had a lot of trouble with ibs early on before I started pacing properly and modifying my diet to reduce carbs etc. Now this has diminished to only when I crash. I’m wondering how significant this is in terms of a symptom ...seems very downstream compared to some of the metabolic and immunological research. It seems highly possible this is linked to other regulatory systems (endocrine?). I wonder whether they will be looking at testing other things alongside?

Whatever, like the cytokine work they really should look at proper controls and examine what is going on in the short, medium and long term within the individual and without since I suspect this is just a downstream symptom that may be relieved simply rather than by faecal transplant. If you don’t go to the route cause it will end up reverting back until you fix what is upstream?

I hope they do this rather than yet another study on 20 or 30 individuals with dubious controls and time periods.

Perhaps I will feel more excited when I see the methodology?

 

IBS fatigue vs ME , not comparable in my view. Trivialises to say we share some of theirs, they some of ours

 

I had IBS long, decades, before I developed ME.

Once I developed ME, I researched and learned more about my health and in doing so got my IBS under control. I still have ME though.

They may be related and they may overlap for some, but they are not one and the same, in my view.

 

I've been assured by a sufferer that she spent years being diagnosed with IBS before she was correctly diagnosed with IBD (Irritable Inflammatory Bowel Disease). She has an unusual diet in that she can't eat gluten-free food, and she has to have gluten in her grains. She also has some issue with "resistant carbs" - but I can't remember if she has to eat them or avoid them!

 

You're absolutely right! Sorry, I screwed that one up! I'll edit.

Oh and I'll edit this post too. I don't know the full info on this person's problems. It sounded complicated and wasn't one of the "standard" things.

 

I had IBS for decades, with episodes of relapsing remitting ME.

After my ME became severe, i tried several elimination diets, to identify my safe foods. This has helped a lot - my IBS is now mild.

I haven't tried faecal transplants. I've had gut microbiome treatment, through the clinic of Dr Don Lewis (Melbourne Australia) where my microbiome was adjusted, repeatedly. My gut now *seems* a lot healthier. and for a bonus prize - the treatment reduced my POTS from severe to mild - this lasted about 9 months - we did the treatment again, the POTS was part-cured again - much better quality of life.

 

Here is the facebook page to The Comeback Study, the ongoing Norwegian study on ME and feral transplant. It is in Norwegian, but I am sure if someone contacts them/ask questions in English, they'll reply in English.

 

where are they hunting these feral implants lol .thanks for making me smile .

 

haha.. oh dear, that's some typo. Well, good it made you smile

 

I had a short period of IBS following salmonella poisoning some years befor the onset of ME, and then an apparent total remission. However it later reappeared in conjunction with the onset of my ME.

The relationship seems complicated, sometimes something like diet (eg chocolate) triggers a descrete episode of IBS or the end stages of a migraine can involve vomiting and/or a descrete episode of IBS. However at other times it seems to shadow my ME and I then feel it could best be described as a symptom of the ME.

When my ME is severe, my IBS is ongoing, as is my urinary problems and much else.

 

I've been following the microbiome research daily for 4+ years, have done DIY FMTs with 9 different donors, and catalogue the microbiome/FMT research/info in this wiki: https://old.reddit.com/r/HumanMicrobiome/wiki/

I think FMT is a likely cure but the current limitation is the fact that every official source of FMT is using low quality donors. I've written to hundreds of researchers (plus FDA and NIH) about this: https://archive.fo/tk0wM

 

I'm curious as to how you know that 'low quality donors' are being used??

 

You can see their donor criteria in the clinicaltrials.gov post and in the final results of the study. Beyond that there is lot of other info and analysis in those links I shared. Including this analysis of Openbiome stool bank: https://archive.fo/JmcMV

 

@MaximilianKohler perhaps you can look into that ?

Actinobacterium Eggerthella enzyme strain CGR2

only 40% of the population may have this strain. only this one deactivates ouabain. but then sodium in blood cells increases, sodium pump is shut down (problem in pwMecfs).

we may not produce exactly ouabain, but similar things like cardiac glycosides. for ease, i call them just ouabains. sorry.

the human gut enzyme A. Eggerthella CGR2 has a binding site for ouabain-likes.
to me its not clear, who and what can indeed bind do that.

in ppl died of heart and renal failure, there were increased ouabains found.
exercise increases ouabains.

if an ouabain binds to that human gut receptor Actinobacterium Eggerthella enzyme strain CGR2
then there is an increase in intracellular sodium (problem in pwMEcfs probably).

A. Eggerthella
- anaerobe
- eliminated by metronidazole (vancomycin)
- may deactivate ouabain/digoxin (which is also a heart med) ?
- ouabain may deactivate A. Eggerthella ?

(no links, very sorry)

 

https://www.fda.gov/vaccines-blood-...iota-transplantation-and-risk-serious-adverse

 

That was what my ME-doctor told me when I asked about it as a possible treatment. He warned me.

 

Moderator note: merged thread.

Link: https://www.nytimes.com/2019/06/13/health/fecal-transplant-fda.html