The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

Not just that but loads of us could have chronic asot or pneumoniae or another type of bac infection. If someone is taking a potent antibiotic with some broad spectrum action is it any surprise they felt considerably better. Also what about Lyme disease - tbh the bacteria are probably very immune evasive a bit like entereoviral infections but even so maybe it temporarily hits them.

Lots of factors is what I am getting at some very plausible ones too. So it's crazy to think it's down to say neuro modulation as an example. Especially without defacto markers.

 

Dr.T. : "Important note to my followers and the @remissionbiome community: I am no longer associated with @remissionbiome or Renegade Research. I owe you all an explanation and one will be forthcoming once I have been given the legal go ahead. My mission remains the same as it has always been: to help people to re-gain as much quality of life as possible. That will not change. I am committed to helping the world."
www.twitter.com/chydorina/status/1735798817491165643

Could be that the legal part takes some time, after all they've got a big brand now with a lot of money...

 

Palace intrigue!

 

Then maybe that should be trialled. But if nothing gets trialled then nothing will be learnt. To ignore all possible clues seems irresponsible to me, to not try and home in on what is actually going on. There can be a fine line between going on wild goose chases versus being closed minded. Science should be seeking the truth wherever it leads, not presuming to ignore investigation of things because they do not fit with what we prefer the truth to be.

 

Hahaha oh man. This doesn't suprise me because Dr t and her exchanges with Tess seemed few and far between. I guess what I want to say is I saw it coming but you can never be certain. Nice to be validated.

That woman attacked me twice totally unprovoked on social media. So am glad she's been I'd say rather obviously kicked out likely for an extreme viewpoint or one that just doesn't follow the science (my bet).

 

Well, sure, maybe. Depending on what you're looking for and the diagnostic, certainty can be hard to nail down.

Regardless, I am no fan of long-term abx, at least not for me.

 

So those of us who don't support the idea of encouraging random people to consume a wide variety of antibiotics and supplements, that have little to no evidence to back up their use are close minded? You certainly seem to be suggesting that.

 

https://twitter.com/user/status/1736051789802172656

 

No, not what I mean in the slightest, and you should fully know that when I spoke of proper trialling, I'm not blindly suggesting people start gobbling whatever stuff people think might be helping. You should at least know me a bit better than that by now Andy. What you say here is misrepresenting what I said.

I am not making myself clear in the slightest it seems, so let me see if I can be a little clearer. As you know I'm not medically qualified, just a modestly qualified engineer, but my best shot at a suggested approach would be:-

1. Firstly, there is the strong possibility there is no correlation between people's remissions and taking antibiotics, and what we see is simply the result of reporting bias, when taking antibiotics just happens to coincide with remission from some other cause completely. People being much more likely to report their brief remission symptoms if they perceive an apparent correlation between the two events - taking antibiotics and brief remission. So a first step might be to run a study to understand if there is any real correlation or not. Might be possible using data from existing studies? Fundamental. If no statistically significant correlation then nothing more to be done, other than report it responsibly so no more time wasted. Skip the rest of this list ...
2. If a significant correlation were to be shown from '1', what then. It would not by any means signal antibiotics were the cause, nor even directly related in any way, it could be an indirect relationship. e.g. If the bug in question had the effect of forcing people to do nothing except total bed rest, and maybe that was a factor. In which case it might be crucial to know if the correlation was seen in people with severe ME, who have no choice but to bed rest anyway; if so then that might discount the bed rest notion. (All just tenuous examples by the way, please don't go citing me as if I proclaimed these as facts, I'm not!).
3. So it might then be worth doing a 2nd study, maybe via questionnaire, to establish in more detail the circumstances of those remission experiences that were accompanied by antibiotics. Designed to try and tease out if antibiotics really had anything to do with it, or if the only relationship is some other event typically associated with taking antibiotics. e.g. Maybe that if the bug is hitting a person's energy systems (and thereby laying them flat out), could there be something going on in the biology of that, etc., etc., etc. (Again only an example! Obviously very many more possibilities!).
4. And beyond that is past my ability to go, needing better understanding of medicine and biology than I have.

Hopefully that clarifies a bit better. Far from suggesting their is any causal relationship, I'm suggesting it might be responsibly investigated, just in case their is. Especially as the initial sanity checks in '1' might be relatively simple to undertake.

My closed minded comment (perhaps a little curt I concede) was really meaning that even though the antibiotic assumption is a massive and unjustified leap for people to make, people should not automatically assume it does not indicate there may be something lurking within there worthy of investigation. In my engineering world, chasing down obscure problems sometimes starts off with very tenuous clues like this, and can get you started on a path to home in on what is going on. Sometimes the real issue turns out to be nothing like it seemed, but if you had never followed your nose and investigated, you would never have got to the truth.

 

Yes, I agree with you of course here Trish.

 

The other thing about these antibiotics is that taken for a long period (argument here as to what that is, the last consultant doctor I spoke to suggested it was over 12 to 14 days) and in the book Missing Microbes studies back up what I am about to say. Low doses or short doses reduce bacterial volume, as backed up by animal studies, but normal doses regularly or over extended periods simply killed off large numbers of species. That's fine if you can get the species from diet, bananas contain lactobacilli, but if you got them from your mother you're stuffed.

I guess what I am trying to say is most of our microbiomes (with some exceptions) are very fragile, I have no lactobacillus regularly, low bifido, akkermansia recently appeared to go extinct and I have only one primary butyrate producer (most people seem to have at least 2). So add antibiotics for 5 days and it could tip the patient over into a much more severe state. I know lots of things could potentially do that but now I know more about the microbiome I do worry about the effects that some things have on it. Our ability to recover from these insults is not very good. My own microbiome is terribly sensitive I regularly see vast quanitites of very important bacteria die off when I take resveratrol or other broad spectrum herbs like Chanca Piedra/andrographis. Testing every month has really opened my eyes.

 

It depends on what infection you're treating with abx and for how long.

I also had no lactobacillus, low bfido and low butyrate. I unknowingly had active h pylori infection most likely for 5 years over 20 yrs ago. I took abxs for 7 days. My microbiome is healthy now.

 

are you in the UK Dom? wondering how you do that?

 

I've taken lots of abx for long periods of time, many times over the past 10 years or so.

But I was symptomatic for ME/CFS for a decade before ever I ate those abx.

Still, when I first started these protracted abx periods, they helped mitigate my symptoms. They never bothered me. Now, however, any abx for even a day destroys me.

 

@Mij funny you mention pylori, after reading Missing Microbes which is an excellent book, I am thinking I may have that issue right now. Problem is antibiotics make me feel truly terrible so not sure if it would help me or not. Last major round I had has given me a lot of the worsened sympoms I have now. Even so pylori causing quite bad dysbiosis makes total sense to me Mij.

@JemPD I use biomesight, tests take 3 weeks to get results, they have a code for ME patients which reduces the cost by 50%, best to email them to ask for it. Doesn't look like I Can share images here but my butyrate was 30% over 2 years, when i started to treat my microbiome more successfully I got it to about 70%, then I had a bad microbiome crash which I am not convinced I've recovered from yet and it's been stuck at about 40%.

@duncan like you abx destroy me, very apt sentence. How long were you on the abx for before? I had 4 rounds of iv clindamycin and I had 20 to 22 days of clinda + clarithromycin. If I even take one 250mg capsule of clindamycin I break out in a scarlett fever type rash inside and outside my entire body, which is a cross reaction between ebv and the drug ebv and strep (only one paper for this). So yeah, my body has interesting reactions to abx.

 

I suspect the h pylori symptoms started during the onset of sudden vertigo/viral M.E. in my case. My gut kept getting sicker over the course of 5 yrs until a Virologist decided to test me for h pylori and treated it with triple therapy. I experienced vertigo while taking the meds for a few hrs and then it went away.

Are you familiar with Pepzin GI Scroll down to 5. Gut Mucosal Integrity
I took this supplement for six months after the abxs and it really helped heal my gut.

 

In total over a decade? I'd guess more than two or three years. In total. I was testing positive off and on for Borrelia and Bartonella and Babesiosis. All three involve abx, even babs despite it being a parasite.

I still test positive for two of the three.