Closed A Non-Interventional Pilot Study to Explore the Role of Gut Flora in ME/CFS, 2020 -

Andy

Andy

Retired committee member
Brief Summary:
This study seeks to correlate microbiome sequencing data with information provided by patients and their medical records regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Detailed Description:
The goal of this Research Study is to better understand how the genetic information in subject's microbiome correlates to the information provided in surveys and in medical records regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

https://clinicaltrials.gov/ct2/show/NCT04100915
 
erm...my understanding is that the gut biome is largely determined by what people eat, so isn't this just a fancy way of saying that they plan on studying, indirectly, at great cost, the effect of diet on ME?

Presumably coz just asking or monitoring what people eat doesn't cost enough, and also doesn't have enough long words in, to attract funding.
 
I think it might be interesting. Perhaps they’ll find something that is unique to sufferers? Or maybe they won’t, but it's worth a look surely?

Hopefully the researchers will also ask about diet, because as Wonko suggests, that is indeed likely to have some effect on biome, but it might not be the whole picture, and something else could be going on with ME peeps.
 
Wonko said:
erm...my understanding is that the gut biome is largely determined by what people eat, so isn't this just a fancy way of saying that they plan on studying, indirectly, at great cost, the effect of diet on ME?

Presumably coz just asking or monitoring what people eat doesn't cost enough, and also doesn't have enough long words in, to attract funding.
Click to expand...
It's about more than diet and food. Medications (especially antibiotics and antacids) can wipe out some gut bacteria and they don't necessarily repopulate once the medication is stopped. Sometimes a beneficial bacteria can be permanently wiped out and that in turn can cause bad bacteria to take hold and cause health issues when there is nothing to keep it in check.
 
My n=1 observation tells me that when I regularly drink home-made kefir my mood stays good.
Miss it for more than a week and I find my mood starts to drop.

Of course there are loads of reasons that I might ‘imagine’ this to be true, and the fact I like the stuff means I keep taking it, but this sort of observation makes me wonder what else might be affected by the state of our guts. :) So yeah, I find this line of enquiry interesting.
 
For that study to be useful, it would probably be necessary to re-do a full history that can be compared to the medical record because medical records for pwME are a complete mess.

Which itself would be a very useful think to evaluate, just how much they differ from reality.
 
I know I'm late to the discussion, and what I can relate is only anecdotal, however if it can help anyone else I'll share it. I've been at the homebound level of ME/CFS for many years. Living within whatever my 'envelope' is at the time has been for me - and for everyone else I'm sure - critical to being able to maintain a plateau of symptoms that I've learned to live with.

Living in a remote area and having a husband who does most everything needing doing that requires leaving home for a good many years now, I began having health challenges one after another that required my leaving home and traveling at least an hour or two distant to see doctors/dentists. I then had a couple of surgeries, a nightmare event with a much loved dog that didn't end well, and a couple of weeks ago broke my ankle. All of this in the past would have been catastrophic for my ME/CFS symptoms and I have been waiting for the new 'horrors' to descend, but thank the good Lord, they haven't.

There are two things that I think have helped me through this and one was having had to go through teeth extractions in order to get dentures and that involved removing the last mercury from my mouth as well. The other is I began making and drinking kefir at least twice a day - we make our own milk kefir and it really is soooo delicious it is easy to not only drink with it but cook with it as well. And like most other people with ME/CFS one of my main problems has always been my gut After just a few weeks of using kefir I could not believe that I seemed to have a normal gut again and as long as I'm using it I've stayed that way. It even helps cognition and that is no surprise since the gut has been called our second brain.

The four words I hate apply here - More Research is Needed!
 
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