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.

Comments

• PP_BOY_@lemmy.world ⁨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 their actual mission and are completely incidental.

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  • MaximilianKohler@lemmy.world ⁨7⁩ ⁨months⁩ ago

    Dr. Alexander Khoruts (University of Minnesota GI, Director, UMN Microbiota Therapeutics Program) made a similar comment. …humanmicrobiome.info/…/designer-hit-panel-discus…

    He asks an FDA adviser “Does the FDA care more about profits or people?”, and the response he gets is “one of the missions of the FDA is to protect the interests of commercial developers”. Another question to the advisor: “How much influence does the industry have over the FDA decisions?”, A: “A lot”.

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• MaximilianKohler@lemmy.world ⁨7⁩ ⁨months⁩ ago

  Here’s an example of virtually no one out of 1.2 million people caring whatsoever: forum.humanmicrobiome.info/threads/…/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.

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  • HubertManne@kbin.social ⁨7⁩ ⁨months⁩ ago

    yup. more monkeys do not make better shakespeare.

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  • Lumisal@lemmy.world ⁨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).

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    • Lumisal@lemmy.world ⁨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.

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    • MaximilianKohler@lemmy.world ⁨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 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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• cAUzapNEAGLb@lemmy.world ⁨7⁩ ⁨months⁩ ago

  Reading the site, it’s interesting, but there are too many unknowns for me to get exited. Dosing, storage, pricing, delivery, effects, side effects all still seem unknown or not well understood.

  Getting directly mailed a bag a poop after paying someone through zelle is a pretty wild thought.

  Maybe FMT is a good idea, but it’s still too unknown for me to accept it.

  Regarding regulation, potentially it could follow the path of supplements which seems to be immune from the FDA, FDA doesn’t regulate multivitamins nor yogurt.

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  • MaximilianKohler@lemmy.world ⁨7⁩ ⁨months⁩ ago

    Yes, FMT is super experiemental. The point of the blog/website is not to convince people to buy poop, it’s to find ideal stool donors who may be able to cure a variety of diseases.

    Maybe FMT is a good idea, but it’s still too unknown for me to accept it.

    It can’t become “more known” unless a highly effective donor can be found. And such a donor can’t be found unless people start helping…

    I don’t think FMT is appropriate to regulate as a supplement. The ingredients of supplements are known and standardized. FMT is an extremely complex and dynamic ecosystem. Yogurt is a handful of known microbes in a highly controlled environment. FMT vs yogurt is like the universe vs a zoo.

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    • cAUzapNEAGLb@lemmy.world ⁨7⁩ ⁨months⁩ ago

      Agreed

      I feel like coordination with a professional sports coach would be a good start, the players are already accustomed to many tests, the team doctor would probably be interested in gut biome v performance, and it’s a pre-selected pool of young, healthy, athletic people with at least semi-controlled diet.

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• Raykin@lemmy.world ⁨7⁩ ⁨months⁩ ago

  Most people don’t give a shit.

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  • HubertManne@kbin.social ⁨7⁩ ⁨months⁩ ago

    nice

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    • No_Eponym@lemmy.ca ⁨7⁩ ⁨months⁩ ago

      nice

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• MaximilianKohler@lemmy.world ⁨7⁩ ⁨months⁩ ago

  Be sure to actually read the blog. I made a post about this in another community and one person completely ignored the blog and used deceptive tobacco and oil industry tactics to spread FUD and disinformation. But people who actually read the blog should be immune to that.

  For example, here is the reaction of a normal and knowledgeable person who actually read the blogs: twitter.com/chydorina/status/1767995009771647375

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