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

I don't understand how anyone will be able to get antibiotics to participate in this 'research'. In the UK NHS you have to get antibiotics prescribed by a doctor, dentist or in some cases pharmacist, and have a current infection that they are convinced is bacterial to get antibiotics. You can't just say I'm taking part in a patient run experiment and please can I have some amoxiclav.
 
Trish said:
I'm taking part in a patient run experiment and please can I have some amoxiclav.
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:laugh: i mean, can you imagine!:D

although since you would be likely to be referred for consideration for serious psych assessment as a danger to yourself, its not really very funny, but it made me laugh at the thought... is this possible in other countries? not that i think it should be, just asking
 
No GP I've had anything to do with would prescribe antibiotics like this in Australia. My dentist used to prescribe them after major dental work to prevent possible infection (once recommended after certain previous surgeries) but no longer. And despite the constant rumours, livestock are not routinely fed antibiotics, in fact they are a schedule 4 medicine in NSW at least. I believe in many countries a vet isn't even required to get hold of them.
Antibiotic resistance should be taken more seriously than in this so-called research.. I'm shocked.
 
Mfairma said:
My wife and I have been testing out nicotine patches, as part of the loose LC patient self-experiment. The harms seemed minimal enough -- and indeed have been, with, for me, worsened sleep, general slight worsening of symptoms globally akin to consuming caffeine daily, and development of an unusual, off-putting body odor -- so I decided to give it a go. As part of that, I filled out the survey that organizers of the Nicotine Test created (which includes, at least some of the organizers of Remission Biome). I found the survey to be confusing in parts, conflicting in others, and with questions that are weighted in problematic ways. I was also alarmed that the survey asks respondents whether they had "remission events" -- terms developed by the Remission Biome group -- but does not define those terms with any degree of clarity.

If this survey is a window into how the Remission Biome group will study patient responses in the 50 person antibiotic and probiotic regimen they're trying to organize, it's a worrying one. Particularly as the group continues to make strong pronouncements about the benefits of their regimen. One recent tweet claimed "Cessation of sickness behavior does not mean 'no damage'. The #Renegade50 WILL experience reductions or complete cessation of sickness behavior. If they act like they are suddenly not sick they will crash and potentially undo progress." Others are similarly biasing.
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I completed the survey. I noticed some improvement in symptoms like brain fog, motivation and mental energy with nicotine. We'll see if that's just the stimulant effect or if it will last. Nicotine does bind to nicotinic acetylcholine receptors, which could help with cholinergic stimulation and thus ANS dysfunction for example.

The bigger issue is that no matter how well the survey is formulated, it will still be impacted by placebo, just like all the other surveys like "have you improved from vitamin B1?" etc. Most of these end up with a somewhat positive result.
 
Trish said:
I don't understand how anyone will be able to get antibiotics to participate in this 'research'. In the UK NHS you have to get antibiotics prescribed by a doctor, dentist or in some cases pharmacist, and have a current infection that they are convinced is bacterial to get antibiotics. You can't just say I'm taking part in a patient run experiment and please can I have some amoxiclav.
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People can buy from sketchy online pharmacies or obtain antibiotics for animals.
 
Doxycycline is used for malaria prophylaxis e.g. this is from the CDC:
Both adults and children should take one dose of doxycycline per day starting a day or two before traveling to the area where malaria transmission occurs. They should take one dose per day while there, and for 28 consecutive days after leaving.
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So prospective travellers can probably get it prescribed in most countries. Not that I'm recommending it. The CDC says pregnant women shouldn't take it. If anyone has tablets and decides to take them, be careful to take them when you are upright, and with liquid, as they can get stuck in the oesophagus and cause excruciating pain. I managed to do that once while on a plane. Trying to sit quietly and not look weird while you feel like a hole is being burned in your oesophagus and tears are streaming out of your eyes. It hurt to swallow for a couple of weeks.... Capsules, with water are much safer.

I have a slight suspicion that the courses of doxycycline that I and my children took for malaria prophylaxis over the years disrupted our guts, and maybe even set us up for ME/CFS.

After I and my two children became ill, I thought we might have ehrlichia or anaplasmosis because our dogs had had that (from ticks). They (the dogs) were efficiently diagnosed at the vet in SE Asia by the doctor looking at samples of their blood under a microscope during the visit, and given doxycycline. Our doctor in Melbourne had never heard of ehrlichia/anaplasmosis, of course, and testing for it was impossible. But I convinced the doctor to prescribe us doxycycline courses. We followed that with a fancy prebiotic. It obviously didn't fix us.

So, I really do understand the desire to try something, but I doubt that Remission's protocol is going to do the job.
 
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I just went to have a look at the Remission biome tweets, and found I'm blocked!
The only things I remember posting in response to their early tweets was a suggestion that they need to check if they or any doctors involved need ethics approval for their research.

Put that with the above image, and I'm lost for words.
 
Trish said:
I just went to have a look at the Remission biome tweets, and found I'm blocked!
The only things I remember posting in response to their early tweets was a suggestion that they need to check if they or any doctors involved need ethics approval for their research.

Put that with the above image, and I'm lost for words.
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I am also now blocked—by their main page and one of the RB team—since our discussion here a few weeks ago.
 
If I saw the picture of the woman with the halo in any treatment I was investigating it would alert me to the fact that I might be getting involved in a religious cult and it would go straight on to the reject pile. It appears the woman doesn't see why her picture is disturbing and she also appears to think she is some kind of angel or god. Yuck. It makes my skin crawl.
 
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The view I’ve come to over the years regarding ME research and treatment anecdotes, not through any special Truth Knowing process but just me muddling through best I know how with the biases and ignorance that entails, is that there’s a lot of noise out there (things which, when we finally understand ME, will turn out to not be relevant), and little signal (things that will remain relevant). The view of the RemissionBiome founders seems to be that virtually everything—every preliminary finding or treatment anecdote—is signal, and I’m uncomfortable with their project for that reason.
 
jonathan_h said:
The view I’ve come to over the years regarding ME research and treatment anecdotes, not through any special Truth Knowing process but just me muddling through best I know how with the biases and ignorance that entails, is that there’s a lot of noise out there (things which, when we finally understand ME, will turn out to not be relevant), and little signal (things that will remain relevant). The view of the RemissionBiome founders seems to be that virtually everything—every preliminary finding or treatment anecdote—is signal, and I’m uncomfortable with their project for that reason.
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Oh @jonathan_h thank you.
I could never articulate that sense.

I feel like a lurker of some infectious agent is likely. Microbial assistance is reasonable. But feel uncomfortable with this marketing approach.
 
jonathan_h said:
The view I’ve come to over the years regarding ME research and treatment anecdotes, not through any special Truth Knowing process but just me muddling through best I know how with the biases and ignorance that entails, is that there’s a lot of noise out there (things which, when we finally understand ME, will turn out to not be relevant), and little signal (things that will remain relevant). The view of the RemissionBiome founders seems to be that virtually everything—every preliminary finding or treatment anecdote—is signal, and I’m uncomfortable with their project for that reason.
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Spot on.
 
From "Dr. T",

"If your GUT (enteric nervous system barrier) or BBB (blood-brain-barrier) is compromised you can make REALLY IMPACTFUL changes in as little as a few months. Heal leaky gut w/ BPC-157 and gut-brain axis with ProdromeGlia and ProdromeNeuro."

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No need to bother with expensive and lengthy research to establish efficacy and safety of anything, just take a random person's word for it on Twitter.....
 
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