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.
this post was submitted on 17 Apr 2024
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Dr. Alexander Khoruts (University of Minnesota GI, Director, UMN Microbiota Therapeutics Program) made a similar comment. https://forum.humanmicrobiome.info/threads/designer-hit-panel-discussion-achieving-cures-together-dec-2023-peter.216/
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".
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.
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).
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:
- https://humanmicrobiome.info/immune-system/
- https://humanmicrobiome.info/intestinal-permeability/
- https://humanmicrobiome.info/systemic/
- https://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?
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 https://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).
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.
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:
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.
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.
Oh no for sure, the forum is the better choice.
I'm just saying a Lemmy instance can reach a wider audience so there's more awareness at least.
But the forum is best to keep for better discussion. But there needs to be a decent amount of people for discussion to happen in the first place