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Comment by tomohawk | Hacker News Reader

A family member has a lot of problems with inflammation. Having seen many doctors at many institutions, all that's been learned is that the medical establishment doesn't really seem to have much of an idea about inflammatory disease, other than being able to apply labels. So far, any progress that has been made by this family member is down to following scientific method in their diet - doctors have been very unhelpful. This family member is part of support groups full of people with similar experiences.

This sounds like quackery, but given the incompetence in this area of the current medical establishment, we'll have to take a look at it.

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Just because the medical establishment doesn't have answers doesn't mean that someone outside of the establishment does. It sucks, but sometimes no one has an answer, and it's better to accept that than to listen to whoever claims to know.

Why is giving up better? What’s the harm in being wrong about fixing your own issues?

All I can see is wasted time and effort, but as a person with a lifelong (supposedly) incurable illness, it’s time well spent. I’d rather struggle and fail than accept my fate.

Best case it’s wasted time, effort and money which all can have an emotional/stress toll as things don’t work. Worst case is you try something that makes things even worse. Both can be pretty bad.

Queen sized static mat: Max $200 and 60 minutes for all review-reading. ordering, unboxing, installation. Possible outcome: healing, better sleep, reduced pain. Reward/risk ratio is great here.

It promotes a kind of magical thinking which spreads and leads people down the path that fruit will cure their cancer.

Sure, that can happen. The grandparent is promoting a kind of magical on the other end - that no cure is possible so you should just give up.

I think it’s healthier on a personal and societal level if we try and fail instead of quit. Worst case we learn what doesn’t work.

To clarify, accepting that no answers might be available frees up our energy to focus on what we can do rather than trying out every dubious or fraudulent claim that could do us real harm.

This is coming from someone facing a life-threatening illness. I hear lots of shit advice all the time. I've chosen to separate myself from support groups that circulate dangerous ideas, and I think I'm better off.

I do hope you get better and advising against ignorant support groups spreading misinformation is good, but it’s also stupid as all hell to suggest to others that they give up. Accepting that there are no answers is the same as lying down to die. There is always an answer and even if you or I won’t find it, the group pursuit for truth is a positive thing

Thank you sincerely for the concern.

The alternative isn't giving up. It's doing what we can with what we actually know based on science-based medicine. That might include seeking a second, third, etc. credible opinion.

Unfortunately, there isn't always an answer. Countless people suffer from conditions that no one understands.

Why would the establishment be the only people worth listening to?

Just because they don't have an answer doesn't mean no one has an answer.

We've received many helpful tips on things to try from others suffering with the same symptoms. We have brains, and an ability to use scientific method to investigate for ourselves what works for us. Someone may say, "try this diet change - it worked for me". You don't need to be a doctor to try that.

This grounding thing doesn't seem hard to try out, and there's no obvious hazard with trying it.

There are lots of dangerous ideas floating around out there (remember drinking bleach to cure COVID?), and lots of predators willing to separate the desperate from their money. Of course the medical establishment isn't the only source of answers, but looking for them outside requires even more caution than usual.

And again, maybe no one has answers. Answering why a condition exists might not even lead to a cure. In the end, it might be better to spend more energy managing symptoms than seeking answers. That sounds pessimistic but it's also pragmatic.

While the current medical establishment isn't perfect, and I have many anecdotes of them failing my family/friends and I, they are definitely better than those so called support groups.

I refuse to believe they are good for you. Just a bunch of people complaining and enabling hypochondria. Psychosomatic symptoms are a powerful thing. Hanging out with a bunch of people that complain about their symptoms and finding similarities with them isn't good.

By all means, expirement with diet or whatever else. But no good can come from those support groups. Or maybe I am just too cynical...

You’re only considering the impact of the negative potential and failing to regard the positive potentials of people’s value. Humans are social beings.

I think you may be too cynical.

People in support groups can provide invaluable input. When you go to a doctor or surgeon, you are getting a professional's perspective. When you talk to a support group, you are hearing from people who have actually experienced the results of that.

For example, another family member had a major surgery. Prior to getting the surgery, they talked to specialists at some really good institutions about what they could offer. There were surgical and non-surgical options available. However, the questions that were asked came from being in contact with a support group. These were people who had had the various procedures, and who had had them at various institutions. Without that input, we would not have been able to ask good questions, or be very discerning about what these specialists were saying. Without the support group, we would have been lost in that process.

EDIT. I should also add that at the facility where the surgery was done, we met several people who had gone to very highly esteemed hospitals for the same kind of thing, but were having to have a 2nd go at it at the facility we chose. That could have been us. We learned that even well credentialed people at highly respected places will perform procedures they have little experience with.

You are too cynical. Don’t advise people do avoid something that might help them, even if only due to placebo.

You probably have something more precise to say that’s worth saying, like how many support groups are fixed mindset and result in complaining and excuses, crabs in a bucket. And how finding, or starting, a group focused explicitly on growth mindset, would be very beneficial.

So say that instead.

Not sure I'd blame the entire 'establishment'. Inflammation is a hot topic, so lots of research, and also lot's of people selling books and cures. It does seem like there is a lot of evidence that diet is the most promising 'cure' or aid. Mediterranean or full vegan and gluten free.

The problem in US, when you start talking diet then suddenly it is a political or moral statement. Suggest being vegan or gluten free and suddenly you are labeled a 'liberal fruit cake woke crazy'. Ok, go eat another steak fried in butter cream and die young.

The science on diet has been pretty clear for 50+ years, it is only 'confusing' or 'obfuscated' because of the major lobbies using Tabaco tactics.

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