Comment by DoreenMichele | Hacker News Reader

Comment by DoreenMichele | Hacker News Reader

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It's an unreasonable standard though, one to which I seem to frequently be held for bullshit reasons that appear to me to boil down to "We refuse to believe that you know anything about health topics and also require you in specific to meet a higher standard than other posters just making conversation."

It's a means to gatekeep me out of medical discussion because people don't like the idea that I'm getting healthier when doctors say that cannot be done and rather than engage in meaningful discussion, I fairly often receive a dismissive pile on of replies in a way that I do not believe is the norm for HN.

I don't have to defend it or prove a claim. I didn't make a claim. I stated as clearly as I know how that it made me wonder x and so I did a search.

This should not be drama of any sort. Other people routinely make conversation on medical topics and aren't given a hard time for it. Other people in this discussion are making conversation about donating cord blood to research.

No one is required to be a medical professional to participate in medical discussion here. No one is required to defend their interest in such subjects.

Except apparently me. Probably because of my personal situation and people having some issue with that.

I think that's an incredibly uncharitable take from this thread. Almost none of the people here are medical professionals, nor do I think most people here are familiar enough with usernames to target you in particular. You opinion is just as valuable as any others here.

If anything, at least in this case I can see that providing a Quora page as "supporting link" works against you - because of the low quality of most Quora content. You mused about a possibility, and the comment engaged with your point at face value with a very reasonable response. They did not ask you to meet a "higher standard" or provide evidence for your idea. You escalated the discussion from there by suggesting that the Quora page is "supporting" - which it really isn't. Making conversation is fine, but if you're going to try to back up your ideas with links, its natural that people will engage with the validity of the source. If you'd linked to a publication, for example, they'd have to engage with the science of it. In this case since its Quora, what's there to engage with? Anecdotes tell us nothing - perhaps 99.95% of people who tried it had no improvement and just didn't talk about it. This is not gatekeeping, nor are you being targeted, at least in this specific case. If you'd shared your own experience, that would give us something to discuss. For example, my ex is living with HIV, and it was a long road of treatments before he was out of the woods. His health was pretty poor when he was first diagnosed, and he was unresponsive to the first line of antiretrovirals (his particular strain was resistant) and it was upto me to manage his health on a daily basis. I can't speak to your specific personal situation that you speak of, but I can appreciate that sharing them on a forum doesn't offer us any extra cred with online strangers.

It's not uncharitable. It's highly qualified and based on more than twelve years of experience posting here.

I know essentially nothing about HIV. I know a little something about using fasting to successfully treat an incurable condition.

I didn't share that because it is routinely ridiculous levels of drama for me to comment on that and some people here absolutely remember me and target me.

I have some mental models for why I think fasting is beneficial. I didn't share those because those amount to "personal opinion" and I can't back them up.

I am happy to hear medical reasons why fasting is unlikely to work for HIV. That's mostly not the substance of the feedback I got initially.

I'm really sorry that you have been the victim of such forum drama.

I also agree with you that people on this forum are on balance likely to dismiss non-mainstream medical approaches. If you are open minded about these and want to discuss them without prejudice, you'll often be met with responses that may be snarky or unfairly dismissive. That's the unfair reality of holding non-mainstream ideas. By default, they are off-piste, niche, etc...

However, I didn't see anything like that in any of the responses here. A very valid point was raised that you support your proposition (ie that HIV might be helped by fasting) with a Quora link. People who are not closed to the idea will find that the link just contains some anecdotal information which at best can confirm sub-conscious pre-concieved biases, but not be a robust argument.

Worse, it plays into the hand of those who are outright dismissive because you served them a perfect strawman to attack.

Ultimately, with any discussion forum you have to consider the audience. People don't owe you anything and particularly a forum like this where things are supposed to be debated based on merit, the bar to debate claims is relatively high.

All these considered, it would've been better to simply ignore the quora link, or at least strongly annotate it saying it is just anecdotal and should not be taken as supporting evidence.

I recognize your username and I think we had small, non-antagonistic interactions here where I basically (IIRC) asked you to elaborate on your condition.

I want to say that people who respond in the way you're mentioning are very likely a minority. A lot of people will read your comments and reply nothing at all. That's probably most of us, and therefore, any given comment's largest audience. That would have been me, had I not decided to comment this a little after I read your comment.

I don't really want to add to the drama here, so I've chosen to be silent for a bit. I'm also not comfortable "ignoring" you.

What I described above is a persistent pattern. I don't believe I'm imagining it nor overreacting.

I don't know some means to escape it without talking about it some.

It's certainly not the entirety of my experience here. I wouldn't hang here so much if it were all downside.

Not saying you're imagining it or overreacting, just trying to call attention to the fact that commenters on any topic are outnumbered by those who are reading and don't react. For whatever that is worth to you. Perhaps not much. I suspect it may be helpful perspective for many of us.

I really wasn't trying to suggest that you were.

I was actually trying to acknowledge your good intentions. Thank you.

This resonates hard. I know we're deep in the meta weeds here, but I find this constant demand for sources (and the always-accompanying derail about the quality of those provided) to be one of the worst issues about this site.

HN is not an academic paper, a Wikipedia article, a matter of journalism, a speech&debate exhibition or anything other than an informal discussion on the internet. In such discussions, people are allowed to quote from memory and personal experience, speculate, and occasionally be wrong... and I find the pressure to not do this to be not just a little disrespectful and dehumanizing. If people want all comments cited to ACM standards, there won't be any comments.

It's occasionally pretty frothing at the mouth worthy:

https://news.ycombinator.com/item?id=23988056

Totally agree with you with the gatekeeping. This is an informal conversation, and you’re just a random person from the internet. There’s no standard you must be held to, and people shouldn’t take what you say to be some statement of empirical fact.

Thank you.

Let's posit that I'm completely batshit insane and deluded and imagining that I have a genetic disorder and imagining that I'm getting better when doctors say that cannot be done. Let's assume the critics and haters are correct in that regard.

It has zero bearing on whether or not fasting would help with HIV. Even if you sincerely believe that I'm completely nuts, you could have a constructive good faith discussion with me about the medical details of how HIV works and whether or not fasting has any reasonable hope of being useful treatment for that specific condition.

And if I were nuts, talking to me about exactly how HIV works without being ugly and dismissive might make me less crazy and help find my way back from insanity to some kind of healthy relationship to reality whereas the kind of engagement I all too often get on medical topics is crazy making.

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