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.

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.

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.

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.

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.

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.

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...

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 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.

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.