Guardian article on the Remission Biome Project--gut and antibiotic exploration for ME/CFS

[Celandine]

https://www.theguardian.com/science/2023/jul/09/microbiome-chronic-fatigue-me-long-covid-research

I've been following this on Twitter for a while. Nice to see it get some mainstream attention. Self-experimentation at its finest!

 

[Wishful]

I checked it, and it claimed temporary remissions, but didn't mention any long-term benefits. I had temporary remissions from 3 different chemicals (two not obvious microbiome modulators), but the remissions lasted less than a full day, and only worked a couple of times for each chemical, and then never worked again. So, I'm not considering this project as "A treatment is near at hand!". The data might be useful for figuring out why temporary remissions occur, which might lead to a better understanding of ME. Simply convincing the research community that temporary remissions (abrupt switch out of the ME state and then abruptly back in) occur would be useful. It could prevent wasting resources on theories that don't fit that abrupt switch of states.

 

[BrightCandle]

What I mostly want from remissionbiome now is a paper. We need the protocol and any safety etc tests for progressing through the stages. I also want them to publish the data they collected throughout showing the changes in metabolism and gut microbes et el. At the moment the elements of the protocol are spread all over twitter, it's haphazard and it's hard to follow since there are clarifications and theory explanations all over.

One key one from yesterday in response to this article is they don't believe the effect is microbiome related, they measured it but they don't think that is the cause of the remission events. To some extent the premise of the article misunderstands the experiment being taken. I have followed it since the beginning but it really needs collating and cleaning up presenting well so we have what was done and what happened and it can be assessed and reviewed.

 

[Celandine]

Keeping up with them on Twitter my main thought has been that they're trying way too much stuff all at the same time. To my mind, the ME body needs a low and slow approach.

 

[hapl808]

Keeping up with them on Twitter my main thought has been that they're trying way too much stuff all at the same time. To my mind, the ME body needs a low and slow approach.

Yeah. A lot of enthusiasm, but also way too much confidence that they know why they're getting the results they're getting. I feel like any real confidence with a disease like this is misplaced. Which by the way is what I really appreciated about your daughter's story - it wasn't filled with pseudoscientific explanations or dogma, just a very clear, "This is what we tried and we were lucky to get good results."

 

[Celandine]

Yeah. A lot of enthusiasm, but also way too much confidence that they know why they're getting the results they're getting.

I mean, it's great that they're bringing attention to ME and also great that they're sharing all their results to help others. I just wonder how they can know which thing is actually helping!

I think one of the things with my daughter is that we were very patient. Some of the main things that were helpful needed us to stick with them over a long period of time. I don't think you can be as sick as many are and expect quick results, unfortunately. Wouldn't have made a good Twitter story!

 

[hapl808]

I think one of the things with my daughter is that we were very patient. Some of the main things that were helpful needed us to stick with them over a long period of time. I don't think you can be as sick as many are and expect quick results, unfortunately. Wouldn't have made a good Twitter story!

And a lot of their reports seem very designed to just make a good Twitter story. Just kinda rubs me the wrong way with their, "Let's talk about neuroinflammation!" threads where they regurgitate long running hypotheses but present them as accepted truth. I do hope they create some good research data points and get more people experimenting safely, but the hype is just tiring for someone like me that's been pretty damn tired for a couple decades.

If there really were absolute answers that worked for everyone, people would just do them. Like if you cut yourself, you generally put a bandage on it to stop the bleeding, not spend six years researching why cuts bleed. If there's no absolute answer, then you just have to find what works for you.

I also dislike when people have immensely complex healing regimens, but also present them as absolutely effective. Because then you can always have an excuse if the patient doesn't improve. "Oh, well you took the methylation vitamins I recommended and the cofactors plus the herbal antibiotics and the biofilm busters, but you're getting worse because your toxin load was too high and you didn't take the right binders beforehand..." All may be true, or may be a load of pseudoscience - pretty hard to know.

I probably just have a chip on my shoulder about it from all the confident doctors I saw over the years from infectious disease, to rheumatology, to naturopaths, to ME/CFS specialists, to lyme disease, to Shoemaker proteges, to SIBO, and so forth. All sure I would get better if I followed their suggestions, then nothing.

 

[hapl808]

And I'll just say I'm glad your daughter got your support and knowledge. I first got sick at 25 years old and I managed to struggle through a pretty successful career for 15 years, but I kept crashing and getting worse because doctors always encouraged me to push through, exercise, physical therapy, etc. I don't know if a single doctor out of 50+ ever said, "You should really just rest as much as possible when you're not working and don't go to the gym, don't do physical therapy unless you're already at a good baseline, etc."

Unfortunately I think once you have a severe crash at 40+, the chance of recovery is pretty low. Shame because it feels like with the knowledge I have now, that was totally avoidable and I could have kept at my limited level for many more years.

 

[Wishful]

I also dislike when people have immensely complex healing regimens, but also present them as absolutely effective.

Some have a daily routine of dozens of drugs and supplements that they claim are important ... but they haven't tested them lately to see whether they are having any noticeable effect. I've had plenty of treatments that worked for a couple of doses, but then stopped having an effect, so I'm skeptical about the ongoing effectiveness of treatments that people don't retest occasionally.

 

[Celandine]

I also dislike when people have immensely complex healing regimens, but also present them as absolutely effective. Because then you can always have an excuse if the patient doesn't improve. "Oh, well you took the methylation vitamins I recommended and the cofactors plus the herbal antibiotics and the biofilm busters, but you're getting worse because your toxin load was too high and you didn't take the right binders beforehand..." All may be true, or may be a load of pseudoscience - pretty hard to know.

Agreed. I do think there's a difference between taking a lot of things, each of which address a particular symptom so you reduce overall symptom burden, and taking a vast array of things thinking you're going to actually solve the core problem of ME. My experience has been that the best most can do at the moment is chip away at symptoms. But maybe if you chip away at them enough you can give your body the breathing space to edge towards recovery. If you're lucky.

Also, as I mentioned on the thread about my daughter, I found that loads of herbs and substances that were considered to be useful for ME actually made things worse for the very simple reason that they vasodilate. If you have orthostatic intolerance/POTS this is going to make things worse. For us that included something as simple as magnesium in her bad days. Each herb has so many actions that even if one might be great, there might be other actions that make it a no go for an individual. You basically have to become an herbalist and pharmacologist to figure this stuff out. I'm neither of those things so just stuck with the "if it vasiodilates we won't use it" approach and went with caution trying the rest.

Some have a daily routine of dozens of drugs and supplements that they claim are important ... but they haven't tested them lately to see whether they are having any noticeable effect. I've had plenty of treatments that worked for a couple of doses, but then stopped having an effect, so I'm skeptical about the ongoing effectiveness of treatments that people don't retest occasionally.

Yes. And also things that seemed awful but then ended up great a year later for some reason.

 

[Rufous McKinney]

Some of the main things that were helpful needed us to stick with them over a long period of time.

It took over ten months to clear a very bad rash I once had. Using the chinese herbs.

Most people would have decided it wasn't working. But I felt a bit better energy wise, so I kept taking this custom mix of tea.

And then over two weeks, the horrible rash over 1/3 of my body, evaporated like it had never been there. It has never returned.

 

[Rufous McKinney]

You basically have to become an herbalist and pharmacologist to figure this stuff out.

that is why I go to a chinese medicine herbal expert and he puts the herbs together for me. No way am I doing this self prescribing stuff. Its total chaos.

there is virtually no SYSTEM in western herbs. Whereas, in chinese herbal system,(and Tibetan, and Ayurvedic) they already KNOW a whole lot about side effects and thats why they almost never use single herbs and everything is mixed and addresses balance.

Then the westerners want to take some out OUT of the chinese herbs and tell you to JUST take that.

 

[Rufous McKinney]

And also things that seemed awful but then ended up great a year later for some reason.

Congrats that you managed to figure all that out.

Sometimes, I get discouraged because I am not very good at...deployment.

Like because I am unwell, I don't like food, I don't like water, I don't want to swallow pills, I don't want to eat THAT.

My daughter is here, helping me and, well ,I don't taste food when I cook something. I just make it and then try to force myself to eat whatever it is, and most food I think is bad.

This is the anorexic part of the Sickness Behavior, I suspect...

 

[Celandine]

that is why I go to a chinese medicine herbal expert and he puts the herbs together for me. No way am I doing this self prescribing stuff. Its total chaos.

there is virtually no SYSTEM in western herbs. Whereas, in chinese herbal system,(and Tibetan, and Ayurvedic) they already KNOW a whole lot about side effects and thats why they almost never use single herbs and everything is mixed and addresses balance.

Then the westerners want to take some out OUT of the chinese herbs and tell you to JUST take that.

My experience has been the opposite to yours. We saw two herbalists. Both in the Chinese tradition. Both made up tinctures with synergistic herbs. Neither seemed to help. And then we had no way of knowing which ingredients were the problem. I also felt neither really understood the unique complexities of ME and POTS. Twice we swapped out the single liquorice root powder that I'd started daughter on for the tinctures the herbalists created. Both times we went back to the single liquorice. Again, I think the vasodilation thing was likely a problem. Liquorice on it's own was exactly what we needed. I AM that Westerner who just wants to try single herbs!

Really sorry food and drink is such a struggle for you. Another pleasure in life lost to this bullshit disease.

 

[Rufous McKinney]

I also felt neither really understood the unique complexities of ME and POTS.

It's very challenging to find really good herbalists. most of them do not actually fully practice it. Just the inventory is extremely costly to maintain. At least 600 raw herbs, all tested and properly stored, along with granular teas shelves and shelves of it.

One issue is ME and POTS are western terms for maladies. So you can't really communicate in those terms with them.

We discuss Yin deficiency, blood stagnation, dryness etc. Wind. I have serious wind. It pours out. Out of my neck and other body parts. How does wind even get in there?

My personal herbalist loves to discuss My Anxiety. Which is not why I am there. So I have to put up with the BS even at his office.

 

[Garz]

the problem with the approach in the article is the body is an immensely complex system

they have a hypothesis - but with their currant approach they have no way of knowing - even if it works - if it is working by the mechanisms they hypothesise.

many infections including viruses like covid-19 do in fact change the microbiome - so that's not really new news

a course of antibiotics could be having positive effects via other mechanisms - eg
some are directly anti-inflammatory and could have symptom reducing effects via that mechanism
or
a chronic infection could be present that the antibiotics knock back briefly. leading to a brief respite from symptoms

good that they are trying things - but lots of scope for false conclusions and it will need some very rigorous science to untangle the real mechanisms