Comment on There may be an existing solution to the chronic disease crisis, but a disabled patient seems to be the only person motivated enough to try to obtain it. And they've been failing going at it alone.

MaximilianKohler@lemmy.world ⁨6⁩ ⁨months⁩ ago

• HubertManne@kbin.social ⁨6⁩ ⁨months⁩ ago

  yup. more monkeys do not make better shakespeare.

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• Lumisal@lemmy.world ⁨5⁩ ⁨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).

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  • Lumisal@lemmy.world ⁨5⁩ ⁨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.

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    • MaximilianKohler@lemmy.world ⁨5⁩ ⁨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:

      • 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

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      • Lumisal@lemmy.world ⁨5⁩ ⁨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?

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  • MaximilianKohler@lemmy.world ⁨5⁩ ⁨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 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:

    • humanmicrobiome.info/immune-system/
    • humanmicrobiome.info/intestinal-permeability/
    • humanmicrobiome.info/systemic/
    • humanmicrobiome.info/translocation/

    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?

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    • Lumisal@lemmy.world ⁨5⁩ ⁨months⁩ ago

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

      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.

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

      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).

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      • MaximilianKohler@lemmy.world ⁨5⁩ ⁨months⁩ ago

        Speaking of, it also wouldn’t help anyone with an organ transplant either.

        FMT may negate the need for most organ transplants. Eg:

        • humanmicrobiome.info/intro/#kidney
        • humanmicrobiome.info/intro/#liver
        • humanmicrobiome.info/intro/#cardiovascular

        Etc.

        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.

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