[DoreenMichele]

My father had Alzheimer's. He lived another 3 years after doctors announced he had six months left because my mom was a devoted wife who quit her job to take care of him.

He also survived colon cancer in his late 60s for the same reason and I flew out and took care of my sister after her first mastectomy with her first round of cancer. The doctors attributed my father's survival after they wrote him off for dead to my mother's care. They interviewed her on tape and changed the practices at their clinic based on what she had to say. From what I gather, two different cancer clinics began offering patients German Penaten cream to help their surgical scars heal because that was why my father's 16 inch surgical scar did so well.

I have zero reason to believe you are correct. There are some differences between different diseases. But my life's experience suggests that a) getting fed right b) getting proper care from someone who actually cares about you and c) adequate control over your environment are pretty universal beneficial, regardless of your exact diagnosis.

(But I'm just a woman, so not likely to be listened to. Yes, I'm feeling pretty bitter about that at the moment.)

[jforman]

Home care is important, but technology can make major impacts, too.

Here is a Kaplan-Meier curve for statins:

http://www.bmj.com/content/bmj/337/bmj.a2423/F2.large.jpg?wi...

That is a lot of life that these drugs have given a whole lot of people.

AIDS is largely a managed disease now, thanks to therapeutics, starting with AZT.

Steve Jobs thought that he needed better nutrition to manage his disease, and he was wrong. He had a chance of living a much longer life had he let medicine intervene earlier.

(And I had no idea what your gender was until you mentioned it. I'm sorry that you don't feel heard.)

[belorn]

Getting familiar food regularly, having someone who genuinely cares about you, and having control of your environment are all medically recognized (with peer reviewed research to support it) methods to reduce stress and stress hormones.

And stress is a significant factor in mortality rates. Its a major predictor for long life and health. It impacts metabolism, pain reception and recovery rates, and reduced stress in surgical patients is a universal good regardless of diagnosis. Its not a cure. It won't stop an infection or cure cancer, but the benefits are very real and has a good bit of research behind it.

[TeMPOraL]

> But my life's experience suggests that a) getting fed right b) getting proper care from someone who actually cares about you and c) adequate control over your environment are pretty universal beneficial, regardless of your exact diagnosis.

Not sure what your point is. Those things are helpful, can extend healthspan a bit, but they're also completely orthogonal to medicine, and are not solutions.

[DoreenMichele]

Wow, completely orthogonal. So, curing Rickets and Scurvy by identifying the nutritional deficiencies behind them us totally not an advance in medicine.

This explains a lot of what is wrong with medicine today. It was different when I was growing up. Doctors would treat all the kids in the family at one time so some infection didn't simply get passed around endlessly. We seem to have stopped doing that, and we wonder why drug resistance is such a problem.

[TeMPOraL]

I meant that in context of your entire comment tree; e.g. things like:

> Things that are actually health promoting, like having a full-time parent to care for the kids and primary breadwinner, eating right, exercise etc are boring and don't make VCs rich.

Correct me if I'm wrong, but I see you implying something like "why do medicine, if we could eat less 'junk food', work less and smile more instead".

> curing Rickets and Scurvy by identifying the nutritional deficiencies behind then us totally not an advance in medicine

That's indeed the domain of medicine. Which will tell you, "you need more nutrient $X in your diet" as a solution to the problem, instead of "eat healthier" (for values of 'healthier' determined by current fitness fashion).

[DoreenMichele]

That's indeed the domain of medicine. Which will tell you, "you need more nutrient $X in your diet" as a solution to the problem, instead of "eat healthier" (for values of 'healthier' determined by current fitness fashion).

That sounds just really arbitrarily personally hostile towards me.

I have gone through multiple blogs in which I have tried to lay out specific nutritional recommendations for people with CF. The few people who have tried it have gotten results.

I have done everything within my own power to try to elucidate specifics no different from the examples of Rickets and Scurvy being caused by nutritional deficiencies. But it does not get taken seriously and I can find no path forward for that, and not due to lack of trying. One woman said she would write a paper with me on the subject, then arbitrarily changed her mind. Her son died of CF. She was a smoker. I don't think she really wants to admit that her smoking helped kill him. She wants to find a pill that makes everything OK and absolves whatever guilt she carries.

The CF community is not interested in what I am doing. So there probably is no path forward here. I fully expect to die in obscurity having never accomplished anything at all with my life.

But this arbitrary validation of nutrition as medicine, unless I am doing it and then it is somehow hokum, is just one of the craziest things I have ever seen on HN.

[TeMPOraL]

> But this arbitrary validation of nutrition as medicine, unless I am doing it and then it is somehow hokum, is just one of the craziest things I have ever seen on HN.

Yeah, nutrition as in "you need more vitamin C, or else scurvy", not as in "eat salads, drink no coffee, consume only 'natural', no processed".

Anyway, you're talking it personally way beyond what was intended. Nobody is discounting your opinions because you're you, or because you're a woman (in fact, people were probably positively biased towards them by the virtue of your karma score on the previous HN account, before you ditched it). You started your subthread here with, "Color me skeptical", towards the outcome of sponsoring biomedical R&D, based on your experience with one form of one disease that (you think) you figured out how to manage with healthy lifestyle. But there are plenty other forms of that disease, and plenty other diseases, and you can't cure them all by healthy lifestyle - and most importantly, people are not living healthy lifestyles for some reasons - reasons that are fully orthogonal to what medical research is doing.

Anyway, I'm going to drop it, as I'm no wordsmith, and 'dokein happened to make the same point I want to make much better than I ever could.

[DoreenMichele]

You are going to drop it, but not until after you take a few more personal swipes.

One thing I highly recommend for people with CF is the right kind of high quality salt. This is very much like taking vitamin D for Rickets or vitamin C for Scurvy.

But you just assume that I have nothing that specific to say and facts be damned.

[dragonwriter]

> But this arbitrary validation of nutrition as medicine, unless I am doing it and then it is somehow hokum, is just one of the craziest things I have ever seen on HN.

Every nutrition as medicine claim on HN is highly controversial. Sure, there's some people that tend to vocally buy into even the most unscientific of them usually people that are personally invested in the claims made, which are often quite general in applicability. I suspect the reason you see less of that for yours isn't either a specific bias against you or anything about your particular claims except that the popular to whom they are applicable is fairly narrow. So you get the skeptics, but not the eager adopters.

[DoreenMichele]

I am not looking for eager early adopters. I am fine with skepticism. That isn't what I am met with. I am met with ugly personal attacks. I am met with complete dismissal.

Anyway, it is probably pointless to engage here. I did not expect my initial comment to get any upvotes at all, much less engender discussion. I expected it to be downvoted to hell and end up at the bottom of the page.

I meant it when I said that speaking to these issues on HN is evidence that I have snapped. I am, in fact, having a huge personal crisis that seems unsolvable. Spouting off is just me falling apart in public, basically. I already am very well aware that I will never be taken seriously. That isn't news to me.

[new299]

It would be useful to link to the blogs, so we can better understand what is being discussed.

But, some people on blogs trying it and then some of them saying a diet works is not really scientific. What would be needed is a larger scientific study. You can argue that such a study should be funded.

In fact, there does appear to be some scientific research, based on some quick googling [1]. If your goal is to increase the adoption diets based on those studies, then I would cite them directly. Promoting that work might work better.

[1] https://www.sciencedirect.com/science/article/pii/S156919930...

[DoreenMichele]

My firsthand experience suggests that linking to my blogs is not only not helpful, it has a huge downside. No good ever comes of it.

My most recent health blog is easy to find if anyone is genuinely interested. I have absolutely no reason to believe such interest exists.

I didn't make my comment to promote my blogs. I wish I knew how to promote my work and monetize it. I remain very poor and this is an ongoing source of stress in my life. But I don't know how to fix that. I see the current monetization schemes of health stuff as part of the problem. So to my mind that is a non starter.

I keep hoping someone will prove I am just stupid and it is possible to both do the right thing (in this specific domain) and also make money. But, so far, I am failing to find a path forward on that.

I wish I felt your suggestion was a good one. But 17 years of online drama suggests otherwise.

[new299]

I guess there are a few issues with this:

The first is, anecdotes are interesting, but is there data that supports this? It seems like there are too many variables, and that at home care may not help in all circumstances anyway.

Secondly, "getting proper care from someone who actually cares about you" by which I guess you mean a family member or close friend. Is not viable is many circumstances...

Finally, I guess it comes down to "what do you actually do". If it proves helpful, what can you do to promote this? Fund family member to quit their jobs to care for relations? It seems like that would be open to abuse and difficult to administer.

[DoreenMichele]

The US is on a very short list of countries that do not provide maternity leave and iirc it is the only country on that list that does not have the excuse that we are too poor and underdeveloped to afford it. We could start with just providing maternity leave as a small step forward here. It is a well proven model with lots of examples out there and not terribly open to abuse because you have to have a baby to get it.

I would be fine if we provided parental leave for both parents when a child is born. But I would be happy with just bringing the US into the 21st century and getting on the same page as basically the rest of the planet and just starting with maternity leave. I only mention parental leave because if I don't, you can guarantee someone will accuse me of something nefarious for not explicitly stating that.

[new299]

I agree that parental leave is valuable (though I'd love to see data supporting this if you have it).

But it seems like a very different issues that increasing health care outcomes in general.

[DoreenMichele]

Well, color me speechless. I don't think we have anything further to discuss.

[new299]

Your arguments don't seem to be backed by data, or any kind of objective logical reasoning. So I would agree.

[DoreenMichele]

That's a personal attack. I am saying your mental models of life are so far from mine, I can't see effective communication happening. I cannot fathom saying that allowing a woman recovery time to take care of herself and time to take care of a newborn is not pertinent to general health. If that is what you think, I just don't even know how to cross the chasm between your mental models and mine.

The gratuitous personal attack only deepens the problem.