I mean, from what I read there, it send the problem is the messaging.
If I got an email that said “How badly do you want a cure for yourself or your loved ones? What are you willing to do for it?” I’d automatically assume it’s a scam, spam, or both.
Why? Because
A) it doesn’t specify immediately what the cure is for, and
B) that kind of writing style is used by scammers constantly.
The fact that the rant does sound like those of conspiracy theorists (even though I personally don’t believe it’s completely untrue) doesn’t help, because you know who else uses language exactly like that?
Scammers. You know how many snake oil sales people do the “big pharma doesn’t want you to know X thing will cure you!”.
The last terrible part of the messaging is that it implies a potential cure all has been discovered.
Except, anyone with even basic biological knowledge would know that’s not the case.
Even if a panacea type microbiome WAS discord, it won’t cure everything. Cancer is one immediate example. It already would be impossible for it to prevent many diseases. Viruses for example that enter through the sinuses, or again, cancers caused by viruses. Heck even then something like norovirus would still wreck you too.
This sounds more like someone who knows some knowledge but isn’t an actual expert in it being used by possibly a scammer (or someone using some underhanded methods to raise legitimate good funding).
Not to mention it’s a big ask to strangers who probably don’t even know what a microbiome is. And that’s not even getting into how the field has already been filled with scammers for years ( “take L. Bacillus and it’ll cure your arthritis!” as one example of thousands).
To clarify, what I’m saying is y’all need some campaign and ad managers. And based off what another commentator here said, more legitimacy. Using Zelle for payments and lacking simplified data visuals isn’t it.
I’d be glad to help how I can, but free tip - calling nearly the whole planet careless assholes (pun not intended) won’t get you much support, nor do you give a good image to what you support. You catch more with honey than with vinegar.
Joined, but you should probably have moderation set at a lower strictness level while the activity level is still relatively low. Having to wait to be able to be active when trying to recruit people to join the discussion really hinders with that goal.
There are at least as many spam/bot signups as there are humans, so account approval negates that completely. Forums aren’t time-based like lemmy and reddit, so there is no sense of urgency. Discussions can take place over months/years. It’s possible to turn on the ability to make a post prior to registering, then when your registration is finalized it gets posted, but I’m not sure how dependable that is. I wouldn’t want people losing content they tried to post due to some cache issue.
I haven’t bothered creating anything on Lemmy. I’ve been urging the Xenforo software developers to join the fediverse. Discourse forum software is doing it, so we may soon see discourse forums show up on lemmy.
Ah, that’s why I was asking about Lemmy. Provides a more open quick discussion path than forums, which then helps funnel actual people to the more regulated forums in the future.
I’m doubtful that creating a lemmy community would funnel people to the forum. There is a lot to like about the forum format over time-based ones like lemmy. And the lemmy software is much newer and more incomplete/deficient than Xenforo. I think creating a lemmy community might just lead to fracturing of content/discussions, which would be detrimental. Also, unless you host your own instance it’s not super reliable (as we’ve seen with reddit and other reddit-alternatives).
There’s a reason sites like Reddit sprang up and grew huge despite forums having already existed.
Yeah, but it comes with many major downsides that have become more apparent in recent years. For example, even lemmy seems to get hit hard by astroturfing, misinformation, disinformation, and toxicity. That’s more rare and easier to prevent on forums I think.
It’ll expose more people to the topic though.
Yeah, I was considering using lemmy instead of creating a forum, but decided on the latter after weighing the pros and cons.
It already would be impossible for it to prevent many diseases. Viruses for example that enter through the sinuses, or again, cancers caused by viruses. Heck even then something like norovirus would still wreck you too.
This is not correct. Not everyone gets sick from x virus. The primary reason is differences in their immune system and gut microbiome. Some relevant links for you:
This sounds more like someone who knows some knowledge but isn’t an actual expert in it
No offense, but that describes your comment. The blog should absolutely not sound like that given that it provides citations for its claims.
Not to mention it’s a big ask to strangers who probably don’t even know what a microbiome is.
The 1.2 million people who were sent the email & blog are people who are already familiar with the humanmicrobes.org project. Many of them hold advanced medical & biology degrees.
I agree though that many people are still not familiar with the gut microbiome and FMT. Do you have any suggestion in this regard?
I’m already knowledgeable on study of the human microbiome. That’s why I’m commenting on here. Having a “perfect” biome still wouldn’t prevent all cancers. Non-Hodgekins POST lymphoma for example. Rare, yes, but still thousands of people. And when you count all rare and unusual cancers it’s still millions. And there’s still no good evidence that the perfect biome would stop an existing cancer.
Speaking of, it also wouldn’t help anyone with an organ transplant either. You’d still need immunosuppressants (or the newer drug class, immuneobliviants) which would still affect the biome. At least until compatible organs can be lab grown.
There is evidence that it would immensely help with preventing nearly all human-cell borne cancers however, and in my opinion, THAT’S something your messaging should focus strongly on. Having a proven potential to stop a majority of cancers is still huge, and to the less knowledgeable person, sounds much more realistic and obtainable.
This is not correct. Not everyone gets sick from x virus.
Ah but see you’re admitting people still will get sick with currently incurable diseases. That’s what I meant about your messaging being flawed - you’re touting this as a cure all, when really it’s a mass preventative (which again, is still extremely important and something really big).
There is evidence that it would immensely help with preventing nearly all human-cell borne cancers however, and in my opinion, THAT’S something your messaging should focus strongly on.
Human Microbes doesn’t do any specific messaging/advertising. Just the website where it covers the gut microbiome regulating the entire body and playing a major role in virtually every aspect of health & development. I would think that narrowing the focus to one type of cancer for example would be detrimental.
you’re touting this as a cure all, when really it’s a mass preventative (which again, is still extremely important and something really big).
I think the potential for both prevention and treatment exists for most conditions that are currently beyond medical capabilities. And there is a ton of evidence for this in the wiki I shared. Sure, there are some things that FMT won’t be a solution to of course.
FMT may negate the need for most organ transplants. Eg:
Again, preventative care. Which in my opinion is equally if not more important than curing existing illness too. A perfect microbiome will not regrow an already permanently damaged organ, which is why transplants are done. Trust me, there’s not enough organs (due to various reasons, not because of a lack) to give everyone a transplant, and bacteria are not a panacea. I’m trying to make you realize that it you keep speaking of it as if it is, with only a single biased source, while not admitting the limitations, hurts such a cause greatly.
Human Microbes doesn’t do any specific messaging/advertising. Just the website where it covers the gut microbiome regulating the entire body and playing a major role in virtually every aspect of health & development. I would think that narrowing the focus to one type of cancer for example would be detrimental.
I think you misunderstood. Human-cell borne cancers mean all cancers that happen through natural cellular damage, degeneration, and other immuno-failing reasons.
Basically all cancers not caused by virii, environmental damage/injury, etc.
Which is the majority of cancers.
I think the potential for both prevention and treatment exists for most conditions that are currently beyond medical capabilities. And there is a ton of evidence for this in the wiki I shared. Sure, there are some things that FMT won’t be a solution to of course.
Correlation does not equal causation. There is statistically significant evidence that there’s a lot of potential here, but there is yet to be solid evidence that this actually treats most conditions. There hasn’t been anywhere NEAR enough research to even make such a claim.
I’m trying to make you realize that it you keep speaking of it as if it is, with only a single biased source, while not admitting the limitations, hurts such a cause greatly.
I think there may be a misunderstanding there. I certainly recognize that FMT and the gut microbiome have limitations.
There is statistically significant evidence that there’s a lot of potential here, but there is yet to be solid evidence that this actually treats most conditions.
That’s all I’ve said as well.
Anyway, you seem to think that FMT’s potential to treat/prevent most types of cancer is something that should be emphasized more. If you have specific suggestions I’m happy to hear them.
The first thing that should be maybe adopted by the scientific community is. Being a tad bit specific on its terminology when discussing certain things outside of research papers (and depending who is giving the grant, maybe certain grant applications).
FMT for example, while accurate, makes it a (literally) hard pill to swallow for those less scientifically knowledgeable. The issue of course being the fecal part of FMT. Starting by using just MT or GMT (G for Gut) would make people not as knowledge on the topic more interested in hearing more, rather than instantly turning them off. It would also be better to not use the acronym when bringing it up in a setting outside of, well, the microbiome community really.
Sure, we know it’s fecal, but people who may support the cause in the future may not be as interested in the details, much like how many people who donate or support cancer research don’t necessarily know specific terminology like R-CHOP for example.
The important part is to at least first get people to actually engage in the conversation, and not shut it down because “ew, I’m not taking poop transplants”.
That’s the very first thing that should be used/changed when bringing this up, in my opinion.
There have been efforts to change the “fecal” part of the wording, but it’s largely been unsuccessful. I personally don’t think it’s the biggest problem to focus on. I’d rather try to educate people that healthy poop is not repugnant. They think it’s gross because their own poop is unhealthy.
I mean… There’s a saying that goes “shining a turd” for a reason. Even healthy poop is still poop. That’s why people aren’t usually clamoring to become a gastroenterologist when they grow up. It’s likely a big factor as to why the gut microbiome wasn’t really researched well / discovered until later compared to discoveries in other medical fields.
Trust me, they don’t find poop repugnant because it’s unhealthy, it’s because it’s poop. Even the healthy ones are waste products of the body.
I mean, from what I read there, it send the problem is the messaging.
If I got an email that said “How badly do you want a cure for yourself or your loved ones? What are you willing to do for it?” I’d automatically assume it’s a scam, spam, or both.
Why? Because
A) it doesn’t specify immediately what the cure is for, and B) that kind of writing style is used by scammers constantly.
The fact that the rant does sound like those of conspiracy theorists (even though I personally don’t believe it’s completely untrue) doesn’t help, because you know who else uses language exactly like that?
Scammers. You know how many snake oil sales people do the “big pharma doesn’t want you to know X thing will cure you!”.
The last terrible part of the messaging is that it implies a potential cure all has been discovered.
Except, anyone with even basic biological knowledge would know that’s not the case.
Even if a panacea type microbiome WAS discord, it won’t cure everything. Cancer is one immediate example. It already would be impossible for it to prevent many diseases. Viruses for example that enter through the sinuses, or again, cancers caused by viruses. Heck even then something like norovirus would still wreck you too.
This sounds more like someone who knows some knowledge but isn’t an actual expert in it being used by possibly a scammer (or someone using some underhanded methods to raise legitimate good funding).
Not to mention it’s a big ask to strangers who probably don’t even know what a microbiome is. And that’s not even getting into how the field has already been filled with scammers for years ( “take L. Bacillus and it’ll cure your arthritis!” as one example of thousands).
To clarify, what I’m saying is y’all need some campaign and ad managers. And based off what another commentator here said, more legitimacy. Using Zelle for payments and lacking simplified data visuals isn’t it.
I’d be glad to help how I can, but free tip - calling nearly the whole planet careless assholes (pun not intended) won’t get you much support, nor do you give a good image to what you support. You catch more with honey than with vinegar.
As the blog notes, there is no funding for that.
I don’t see anything wrong with Zelle, and multiple payment options are offered.
That would be great! There are various discussions on the microbiome forum:
Thoughts on HumanMicrobes donor problem
fas.org (Federation of American Scientists) Day One Project policy proposal for FMT
High-quality stool donors are more rare than one in a million? AI, funding, and potential. (Mar 2024, HumanMicrobes.org)
The FDA and FMT regulation. (Mar 2024, HumanMicrobes.org)
More blogs
More FMT discussion threads
Joined, but you should probably have moderation set at a lower strictness level while the activity level is still relatively low. Having to wait to be able to be active when trying to recruit people to join the discussion really hinders with that goal.
Is there a Lemmy instance for the site as well?
There are at least as many spam/bot signups as there are humans, so account approval negates that completely. Forums aren’t time-based like lemmy and reddit, so there is no sense of urgency. Discussions can take place over months/years. It’s possible to turn on the ability to make a post prior to registering, then when your registration is finalized it gets posted, but I’m not sure how dependable that is. I wouldn’t want people losing content they tried to post due to some cache issue.
I haven’t bothered creating anything on Lemmy. I’ve been urging the Xenforo software developers to join the fediverse. Discourse forum software is doing it, so we may soon see discourse forums show up on lemmy.
Ah, that’s why I was asking about Lemmy. Provides a more open quick discussion path than forums, which then helps funnel actual people to the more regulated forums in the future.
I’m doubtful that creating a lemmy community would funnel people to the forum. There is a lot to like about the forum format over time-based ones like lemmy. And the lemmy software is much newer and more incomplete/deficient than Xenforo. I think creating a lemmy community might just lead to fracturing of content/discussions, which would be detrimental. Also, unless you host your own instance it’s not super reliable (as we’ve seen with reddit and other reddit-alternatives).
It’ll expose more people to the topic though.
Forums are great for detailed conversation, but not so fast for spreading information and garnering commentary.
There’s a reason sites like Reddit sprang up and grew huge despite forums having already existed.
Those then interested in assisting more or having slower but more in depth discussion however will then gravitate towards the forums.
Yeah, but it comes with many major downsides that have become more apparent in recent years. For example, even lemmy seems to get hit hard by astroturfing, misinformation, disinformation, and toxicity. That’s more rare and easier to prevent on forums I think.
Yeah, I was considering using lemmy instead of creating a forum, but decided on the latter after weighing the pros and cons.
The email linked to the blog. The question was asked at the end of the blog.
You may be interested in https://humanmicrobiome.info/cancer/.
This is not correct. Not everyone gets sick from x virus. The primary reason is differences in their immune system and gut microbiome. Some relevant links for you:
No offense, but that describes your comment. The blog should absolutely not sound like that given that it provides citations for its claims.
The 1.2 million people who were sent the email & blog are people who are already familiar with the humanmicrobes.org project. Many of them hold advanced medical & biology degrees.
I agree though that many people are still not familiar with the gut microbiome and FMT. Do you have any suggestion in this regard?
I explained the other reasons, but a link doesn’t help. Phishing is one big reason.
However later in your comment you mention the email was sent to people in a mailing list, which I’m assuming means they voluntarily enrolled.
In that case, it goes back to messaging. It still sounds like a scam. That’s still the core issue in all this: how your message is presented.
I’m already knowledgeable on study of the human microbiome. That’s why I’m commenting on here. Having a “perfect” biome still wouldn’t prevent all cancers. Non-Hodgekins POST lymphoma for example. Rare, yes, but still thousands of people. And when you count all rare and unusual cancers it’s still millions. And there’s still no good evidence that the perfect biome would stop an existing cancer.
Speaking of, it also wouldn’t help anyone with an organ transplant either. You’d still need immunosuppressants (or the newer drug class, immuneobliviants) which would still affect the biome. At least until compatible organs can be lab grown.
There is evidence that it would immensely help with preventing nearly all human-cell borne cancers however, and in my opinion, THAT’S something your messaging should focus strongly on. Having a proven potential to stop a majority of cancers is still huge, and to the less knowledgeable person, sounds much more realistic and obtainable.
Ah but see you’re admitting people still will get sick with currently incurable diseases. That’s what I meant about your messaging being flawed - you’re touting this as a cure all, when really it’s a mass preventative (which again, is still extremely important and something really big).
FMT may negate the need for most organ transplants. Eg:
Etc.
Human Microbes doesn’t do any specific messaging/advertising. Just the website where it covers the gut microbiome regulating the entire body and playing a major role in virtually every aspect of health & development. I would think that narrowing the focus to one type of cancer for example would be detrimental.
I think the potential for both prevention and treatment exists for most conditions that are currently beyond medical capabilities. And there is a ton of evidence for this in the wiki I shared. Sure, there are some things that FMT won’t be a solution to of course.
Again, preventative care. Which in my opinion is equally if not more important than curing existing illness too. A perfect microbiome will not regrow an already permanently damaged organ, which is why transplants are done. Trust me, there’s not enough organs (due to various reasons, not because of a lack) to give everyone a transplant, and bacteria are not a panacea. I’m trying to make you realize that it you keep speaking of it as if it is, with only a single biased source, while not admitting the limitations, hurts such a cause greatly.
I think you misunderstood. Human-cell borne cancers mean all cancers that happen through natural cellular damage, degeneration, and other immuno-failing reasons.
Basically all cancers not caused by virii, environmental damage/injury, etc.
Which is the majority of cancers.
Correlation does not equal causation. There is statistically significant evidence that there’s a lot of potential here, but there is yet to be solid evidence that this actually treats most conditions. There hasn’t been anywhere NEAR enough research to even make such a claim.
I think there may be a misunderstanding there. I certainly recognize that FMT and the gut microbiome have limitations.
That’s all I’ve said as well.
Anyway, you seem to think that FMT’s potential to treat/prevent most types of cancer is something that should be emphasized more. If you have specific suggestions I’m happy to hear them.
There’s a lot to start with.
The first thing that should be maybe adopted by the scientific community is. Being a tad bit specific on its terminology when discussing certain things outside of research papers (and depending who is giving the grant, maybe certain grant applications).
FMT for example, while accurate, makes it a (literally) hard pill to swallow for those less scientifically knowledgeable. The issue of course being the fecal part of FMT. Starting by using just MT or GMT (G for Gut) would make people not as knowledge on the topic more interested in hearing more, rather than instantly turning them off. It would also be better to not use the acronym when bringing it up in a setting outside of, well, the microbiome community really.
Sure, we know it’s fecal, but people who may support the cause in the future may not be as interested in the details, much like how many people who donate or support cancer research don’t necessarily know specific terminology like R-CHOP for example.
The important part is to at least first get people to actually engage in the conversation, and not shut it down because “ew, I’m not taking poop transplants”.
That’s the very first thing that should be used/changed when bringing this up, in my opinion.
There have been efforts to change the “fecal” part of the wording, but it’s largely been unsuccessful. I personally don’t think it’s the biggest problem to focus on. I’d rather try to educate people that healthy poop is not repugnant. They think it’s gross because their own poop is unhealthy.
I mean… There’s a saying that goes “shining a turd” for a reason. Even healthy poop is still poop. That’s why people aren’t usually clamoring to become a gastroenterologist when they grow up. It’s likely a big factor as to why the gut microbiome wasn’t really researched well / discovered until later compared to discoveries in other medical fields.
Trust me, they don’t find poop repugnant because it’s unhealthy, it’s because it’s poop. Even the healthy ones are waste products of the body.