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

Wyva

Wyva

Senior Member (Voting Rights)
Often dismissed by the medical establishment, people with complex illnesses such as ME and long Covid are taking the hunt for treatments into their own hands

In 2019, years after developing the myalgic encephalomyelitis (ME/CFS) that had kept her bedridden in a state of chronic pain and exhaustion, Tamara Romanuk experienced something “miraculous”. After taking antibiotics prescribed to treat a separate infection, she experienced a short-term remission in symptoms. “I went from being bedbound to twirling outside,” Romanuk says. “I had no idea that life could be so different from what I’d become adjusted to.”

Sharing her experience online, Romanuk, a former biology professor, discovered that she wasn’t the only person who had had this experience. Both she and Tess Falor, an engineer with a PhD, had developed ME/CFS years before and had picked up a bacterial infection that required antibiotic treatment. Doctors had advised them to take probiotic supplements to help the microbiome recover. Afterwards, both experienced a dramatic remission in ME/CFS symptoms. They called it a “remission event”. Romanuk and Falor have named their project to investigate the experience the RemissionBiome.​

Full article: https://www.theguardian.com/science/2023/jul/09/microbiome-chronic-fatigue-me-long-covid-research
 
Remission Biome is essentially PhoenixRising on steroids. There's a lot of nonsense being pushed. They seem to just ingest any rudimentary science and based on that push extremely expensive interventions that 95% of patients would never be able to afford.
 
Well at least the article does some good by making it clear the BPS approach is bust. And it includes warnings about people promoting unevidenced treatements.

I have no problem with individuals sharing their experiences and gathering information about what people are trying so long as it's absolutely clear that it's all anecdotes. I think it's completely understandable that individuals will be desperate enough to experiment. I did so in my early years, though back then it was more alt med than supplements and drugs, and there wasn't social media spreading and giving impetus and credibility to such experimentation.

All fine, so long as individuals like the 2 headlined in this article don't use their academic credentials to give unwarranted status to their ideas, and the foundations and government research funders get on and actually fund proper clinical trials.

What I have more of a problem with is doctors who latch onto this and take money from patients for decades prescribing such experimental treatments while never doing any proper research.
 
Trish said:
I have no problem with individuals sharing their experiences and gathering information about what people are trying so long as it's absolutely clear that it's all anecdotes.
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Nope. It's all presented as fact. Lot's of claims of "this is why" and "this is how to stop that". I have called them out on this on Twitter. EDIT: e.g., here on PEM:

Trish said:
so long as individuals like the 2 headlined in this article don't use their academic credentials to give unwarranted status to their ideas
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I'm afraid they are.
 
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This is their website with a so called protocol which is just warnings to people not to experiment, and a treatment schedule. They are also asking for donations on GoFundMe.
https://remissionbiome.org/planned-protocol/

My reaction is like yours, @InitialConditions. Neither of them is a clinician, and it's not a clinical trial in any real sense.

They are calling it phase 2 but it's not a phase 2 clinical trial, it's just more experiments on themselves and other volunteers with a mix of antibiotic, probiotic and other stuff they are guessing might help, and doing some analysis of changes to the microbiome and symptoms, as far as I can see.

My own and my daughter's experience of decades of ME and taking antibiotics sporadically for things like tooth abscesses, urinary tract infections etc is that neither of us experienced any improvement in our ME with any of these, and whether we took probiotics afterwards or not made no difference.
If anything we have tended to be worse afterwards, probably partly because of the infection itself and partly to side effects of the drugs.
 
Trish said:
This is their website with a so called protocol which is just warnings to people not to experiment, and a treatment schedule. They are also asking for donations on GoFundMe.
https://remissionbiome.org/planned-protocol/

My reaction is like yours, @InitialConditions. Neither of them is a clinician, and it's not a clinical trial in any real sense.

They are calling it phase 2 but it's not a phase 2 clinical trial, it's just more experiments on themselves and other volunteers with a mix of antibiotic, probiotic and other stuff they are guessing might help, and doing some analysis of changes to the microbiome and symptoms, as far as I can see.

My own and my daughter's experience of decades of ME and taking antibiotics sporadically for things like tooth abscesses, urinary tract infections etc is that neither of us experienced any improvement in our ME with any of these, and whether we took probiotics afterwards or not made no difference.
If anything we have tended to be worse afterwards, probably partly because of the infection itself and partly to side effects of the drugs.
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Yep, important to warn of potential harms. I've not seen much of that. I believe my trigger was in part erroneously being prescribed amoxicillin for what was likely a trivial viral illness. I still believe antibiotic use might be playing a large role in onset of ME in some patients.
 
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The zealousness, in this space and others, really bothers me. There’s significant risk of harm with treatments like this. I don’t think, as Trish said, we should judge patients for pursuing the treatments that make sense to them. But patients that push certainties about things that are very uncertain mislead other patients into taking risks that can leave them much worse off. It’s not responsible.

It’s also, to me, quite toxic. It makes it so much harder to be sick with a horribly debilitating, untreatable illness when you constantly have people milling about telling you it is treatable and you can get your life back if you only do A, B, and C, and then maybe D, E, and F. Particularly because the people that do this systematically undervalue or dismiss the costs and harms of the treatments they propose, in ways you don’t necessarily see interacting with them casually.
 
Arnie Pye said:
This happened to me a few years ago, but didn't last long. I described my experience in this post :

https://www.s4me.info/threads/patho...fs-discussion-thread.13372/page-3#post-269428
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Happened to me as well, many years ago, but didn’t recur with other or the same antibiotics over the next couple years. That seems to be the norm when I’ve researched this. The partial remission I experienced was part of what led me to try faecal transplants, which was the most disastrous treatment I’ve tried by a long margin. I still haven’t regained what I’ve lost ten years later and I still struggle to cope with that loss. I mentioned this harm to them on Twitter and they had little interest…
 
Their remission likely had nothing to do with their “micro-biome” and everything to do with the antibiotic, especially minocycline and maybe doxycycline to a lesser extent (their protocols say they administer mino or doxycycline).

Minocycline is a well known neuroprotectant and there are many anecdotes of MECFS patients feeling better on minocycline and there are published papers on minocycline being used to treat MECFS. There likely is value to looking further into the tetracycline antibiotics as treatments for MECFS, but not this micro-biome stuff.

E.g.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8429282/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8429309/#:~:text=Based on these reports, Miwa,symptoms of ME/CFS patients.

https://jamanetwork.com/journals/jamaneurology/fullarticle/801762
 
I mean, for every ME patient that goes into remission from those antibiotics (I tried all of those in the protocol and more, 0 benefit) there's a hundred that don't. We've been trying this stuff for 30 years.

It's a lottery ticket that's probably worth trying if you are desperate enough (taking those antibiotics for a few days is probably not a big deal, let's be honest) but their presumption of knowing how the illness works is not justified. If our theories were correct way more patients would be responding. I see they are trying to replicate this but are they even doing the proper controls, blinding, objective measures etc or is it just another useless study?
 
Jaybee00 said:
Their remission likely had nothing to do with their micro-biome and everything to do with the antibiotic, especially minocycline and maybe doxycycline to a lesser extent (their protocols say they administer mino or doxycycline).

Minocycline is a well known neuroprotectant and there are many anecdotes of MECFS patients feeling better on minocycline and there are published papers on minocycline being used to treat MECFS. There likely is value to looking further into the tetracycline antibiotics as treatments for MECFS, but not this micro-biome stuff.

E.g.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8429282/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8429309/#:~:text=Based on these reports, Miwa,symptoms of ME/CFS patients.

https://jamanetwork.com/journals/jamaneurology/fullarticle/801762
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I don't think it's correct to say that either, because they tend to only work once, if they work. There has to be a specific reason for that.
 
From their website:
https://remissionbiome.org/planned-protocol/
We ended up modifying this plan as we went along. For example, we were originally planning to only do the Amoxiclav for 3 days, but ended up extending the course, because we found that we were cycling up and down in symptoms and wanted to experiment with different combinations of interventions to try to tease out what might be causing the cycling/remissions.
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I was prescribed amoxiclav once and had to stop it. I had the most horrendous abdominal pain and the diarrhoea was unbelievably bad. It's amoxicillin, which I'm fine with, combined with clavulanic acid. According to Google the clavulanic acid stops bacteria from breaking down amoxicillin, allowing the antibiotic to work better.
 
Frustrating that when the article is talking about UK ME/CFS research that DecodeME isn't mentioned (although I may be slightly biased there) and surprising that they don't talk about Invest in ME's efforts that are looking at the gut microbiome.
 
InitialConditions said:
Yes, that's it—well put. Complete lack of subtlety, nuance, and humility.
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I couldn't agree more. I have absolutely no problem with their project, it's great to see it and fantastic that they received funding for it. The problem is presenting often very vague hypotheses or ideas as facts, sometimes even clearly wrong things as facts and even doing so with a "Dr." in your name on Twitter so that unknowing patients believe you or even trial the things you advertise. If they'd just call everything ideas or hypotheses rather than present them as facts, then everything would be absolutely awesome. If you mention this in a comment on Twitter it either goes unnoticed or you are blocked, that's the nature of Twitter

I'm yet to come across a serious researcher with a premium Twitter account with "Dr." in their name.
 
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Andy said:
Frustrating that when the article is talking about UK ME/CFS research that DecodeME isn't mentioned (although I may be slightly biased there) and surprising that they don't talk about Invest in ME's efforts that are looking at the gut microbiome.
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You might be biased but it's a good bias :-). DecodeME needs every mention it can get.
 
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