• MaximilianKohler@lemmy.worldOP
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    7 months ago

    Here’s an example of virtually no one out of 1.2 million people caring whatsoever: https://forum.humanmicrobiome.info/threads/high-quality-stool-donors-are-more-rare-than-one-in-a-million-ai-fundi.304/post-760

    This is the kind of thing that for me invalidates all those pro-natalism “large population = more chances that one person’s going to do something great” arguments. 8 billion people and a single disabled person is left to do it on their own. Especially when it’s something like this where anyone/everyone can do something to help, and 99.99999% of people just simply can’t be bothered.

    • Lumisal@lemmy.world
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      6 months ago

      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).

      • MaximilianKohler@lemmy.worldOP
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        6 months ago

        I’d automatically assume it’s a scam, spam, or both.

        Why?

        The email linked to the blog. The question was asked at the end of the blog.

        Even if a panacea type microbiome WAS discord, it won’t cure everything. Cancer is one immediate example.

        You may be interested in https://humanmicrobiome.info/cancer/.

        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?

      • Lumisal@lemmy.world
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        6 months ago

        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.

        • MaximilianKohler@lemmy.worldOP
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          6 months ago

          y’all need some campaign and ad managers

          As the blog notes, there is no funding for that.

          I don’t see anything wrong with Zelle, and multiple payment options are offered.

          I’d be glad to help how I can

          That would be great! There are various discussions on the microbiome forum:

          • Lumisal@lemmy.world
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            6 months ago

            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?

            • MaximilianKohler@lemmy.worldOP
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              6 months ago

              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.

              • Lumisal@lemmy.world
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                6 months ago

                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.

                • MaximilianKohler@lemmy.worldOP
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                  6 months ago

                  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).

  • mommykink@lemmy.world
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    7 months ago

    Reminder that the FDA is the state mechanism to protect the wealth of the pharmaceutical giants. The very few times they (the FDA) actually facilitate improvements in medicine/health are only as a side effect of that mission and are completely incidental.