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Those aren't the only two options. But I mostly avoid discussions like this on HN because the atmosphere here is pretty openly judgmental and hostile (a la your remark) so I don't see any real good coming out of trying to discuss it. It doesn't help that anyone here who is anti-vax tends to post in these threads in a manner that just promotes the view that we are all extremist nutcases, unfamiliar with basic logic, etc. So posting the type of remark you have just posted (in a forum that is already pretty biased on the topic) is highly unlikely to get you a real explanation of a third option. Thus you get your own "confirmation bias" stuff going on.

Peace.




The reason people are so hostile about this is because the anti-vaccination belief is objectively wrong and literally fatal. It is directly analogous to believing AIDS isn't spread by HIV.


I don't think it's quite that simple. Most scientific views boil down to "belief" -- by that I mean that most people are essentially taking the word of some expert or other without themselves genuinely understanding it and, also, the lovely drawings of the solar system, tectonic plates, etc that you find in scientific materials are basically made up fantasies. If you used any kind of meaningful scale for the solar system, it would not fit on the pages of any book. In 8th grade, the entire class was asked to do a model of the solar system. I was sick and missed a bunch of school and turned mine in late. The teacher was trying to ding me hard for not having a scale. Then I explained that I had run the calculations and if I used 1mm = approx 33 million miles, then Mercury would be about 1mm from the sun, Venus would be about 2mm from the sun, Earth would be about 3mm from the sun and Pluto would be about 100 meters plus 8 millimeters and the model wouldn't even fit in the classroom. Tectonic plate drawings are basically a mental model and while you can find geologic evidence of them, they don't look as nice and clean as the drawings suggest and it was a very controversial theory for like the first 50 years, IIRC.

So I think most arguments like this boil down to "belief" on both sides and it is usually pointless to try to sway the other side. I didn't stop vaccinating based on "scientific" anything. I stopped because the people who had information that was getting me healthier all were anti-vax. So I stopped based on "social proof", so to speak -- which isn't really any different than most folks who believe their scientists and doctors are correct but they think it is vastly different, so my "social proof" only damns me as it is viewed as further evidence that I am a fruitcake.

So I generally make no effort to argue the science involved.

Peace.


Your "social proof" has a name, its called anecdotes. While occasionally reasonable in the small scale, it is absurd to believe local observations have any merit in the grand scale.

"Most scientific views boil down to 'belief'" this almost sounds like your saying that nothing can truly be knowable. This is the path of nilism, not reason.

Science has a rigorous process, peer review being part of it. One does not have to be an expert in the field to read numerous studies, evaluate their methodology, reason as to whether the conclusion actually matches the data+experiments, and see if the results across the studies were consistent. This isn't an act of faith.


Galileo was put under house arrest for the rest of his life for introducing a new concept. It took many years for Einstein's theory to get sufficient proof as to be accepted. Einstein himself said something like "You cannot solve a problem from the same level of consciousness that created it". I think it is reasonable to assume that our current medical assumptions are part of the problem when it comes to autism, which has reached "epidemic proportions" according to some articles.

I am not suggesting a path of nihilism. I am only suggesting that I recognize that the reasons I do things and the thinking I use to make such decisions doesn't look very "logical" to quite a lot of people. This is highly likely to be true for people arguing from the "scientific" position. Yet, we are all human, even scientists, and thus even they have their biases, shortcomings, etc. I made the choice I made not due to anecdotal evidence but due to a track record of success: These people were helping me get concrete results in terms of a health problem for which "science" would like to write me off and consign me to a slow, torturous death as my only due in life. These same people had strong negative views of vaccines. I went with the folks who were getting me positive results. My other choice is to go along with conventional treatments for my condition. Everyone who does that gets gradually sicker and sicker until they die, usually at a young age. Science claims it is not killing them, it is their genes that is killing them.

To me, that position lacks logic -- but the overwhelming belief is that it is true, so that makes me a lone nutcase. And it is usually a hopelessly lost cause to attempt to point this out when everyone "just knows" they are right, science and doctors are on their side, and I am "objectively" wrong, nevermind the results I am getting. Those results can be easily dismissed as "anecdotal". I didn't get well to impress anyone or make any kind of point. I only did this to get my life back (and give my kids a life of their own). So it is mostly not worth arguing about. Those folks who do not believe me cannot be convinced. The fact that it is a done deal weighs nothing in their minds.

Peace.


Galileo did not introduce the new concept. And he was put under house arrest by scientists. Your point about Einstein just confirms that science is not about belief, but about proof. Your reference to science in quotes is really off-putting.

  Everyone who does that gets gradually sicker and sicker until they die,
  usually at a young age.
Sounds like you know everyone and their condition. Can it be? Your position is based on logical fallacies. Does not look like you are even trying to understand why people do not believe you.

Orange.


I put a great deal of effort into trying to understand why people do not believe me. I am well aware that many don't because they are basically incredulous -- what I am saying flies in the face of everything they know to be true. It is not only hard to believe, it is very upsetting to believe because it calls into question the trustworthiness of their doctor, which is very threatening when you have a deadly medical condition.

Currently, the average life expectancy in the US for people with CF is about 37. I have talked to quite a few people online -- there are only about 30,000 diagnosed cases of CF in the US and some lists have hundreds of members, some of whom have more than one family member with CF. I don't know "everyone" but it is a small enough community to know quite a good cross section of such people via the internet. The folks who are doing better than expected generally make a lot of dietary and lifestyle changes and do a lot of research. The details of what they do and what they think may vary from what I do and what I think, but dietary changes are a very consistent aspect of what I have seen work for this population.


Anecdotally, most people -- whether they have CF or not -- would be well served to make significant dietary and lifestyle changes. Having a life threatening disease just provides more incentive for this to take precedence over many people's personal mantra of immediate gratification and lack of serious introspection.

This doesn't really have any bearing on the efficacy of vaccines, though. Perhaps certain lifestyle changes do dramatically reduce susceptibility to certain diseases, but that doesn't mean one should also rule out current scientific literature.


I don't rule out current scientific literature. I just keep in mind that it has its own biases and that view informs my interpretation and use of it.

For example, I am not aware of any studies concerning making dietary changes to control inflammation in people with CF. However, I am aware of many drug studies that show that controlling inflammation in people with CF does reduce incidence of infection. Those studies are generally conducted by drug companies, whose agenda is to develop products to sell (in this case, drugs). The detail that reducing inflammation in people with CF also reduces infection is useful information to me. The fact that they only seem to study which drugs can be useful in this regard while apparently completely ignoring diet and lifestyle is something I view as inherent bias in the source.

I am not a drug company with an agenda to develop a product and/or find a good reason to sell high doses of an existing product to very ill people. I am an individual who was once extremely ill and wanted to suffer less. (I had no goal of "getting well" initially. I just wanted to take less medication and be less miserable.) So I parse out which pieces of such studies are useful neutral information and which pieces smack of bias and agenda. "Reduce inflammation to reduce infection" is valuable information. "Take boatloads of our drugs (such high doses they have to run liver tests and closely monitor you)" smacks of agenda and bias and, frankly, callous disregard for my welfare in the pursuit of the almighty dollar.

Peace.


Of course, those studies are based on what gets funding. So, science is not a pure pursuit of truth wherever it leads, but a pursuit of the truth that gets funded. Sometimes only part of the truth can be more misleading than an outright falsehood.


Sorry but "Most scientific views boil down to "belief"" is patently untrue. All scientific theories are not beliefs but rational explanations that fit the facts. If a new fact appears that contravenes the theory, the theory is thrown out. (see http://en.wikipedia.org/wiki/Aether_theories for example, some of which weren't thrown out till early last century).

As a physics undergrad I was never asked to take an expert at his word. Everything we learnt we tested in the lab, sure I didn't built an electron scanning microscope, but I used one and it fitted with the science.

The science I was presented with was given as a derivation of science I already knew, which was based on things we learn in high school etc etc. There is no taking the word of someone in science, hence the peer review process.


Unfortunately, I don't have the time to write at length this morning and by the time I get off work this discussion will basically be dead. So, in brief: Physics is very different from medicine. If you drop an apple to test gravity (per second per second measures, etc), the apple does not make a zillion and one choices that impact how it falls. But when you try to figure out what does and does not impact human health, people do make a zillion and one choices which impact the study outcome. There is also quite a lot of evidence that most studies concerning human health have serious flaws. Last, I would say that "peer review" is a form of social proof. Given how poorly that point is going over in this discussion, I will skip attempting to elaborate.

Peace.


Physics and medicine both rely on rationalism and the scientific method.

The difference between what you are talking about and what I am talking about it the difference between objective and subjective proof. Your social proof easily falls into the post hoc fallacy[1]. While I will happily admit medical science doesn't get it right all the time at least the onus is there to prove the safety and efficacy of the drug.

A great example of this is those power balance bracelets[2], where anecdotal evidence (your "social proof") is provided in the form of celebrity endorsement. So a piece of rubber and a hologram like those you see on credit cards is sold for $30. They've been force to admit there is no evidence they work yet people will swear blue murder they do. Why? Because we are subjective beings, right now to our physical makeup (try plunging a hand into luke warm water then hot water then back again sometime).

We are poor judges of things, especially when it comes to ourselves.

[1] http://www.skepdic.com/posthoc.html [2] http://www.abc.net.au/news/stories/2010/12/23/3100270.htm


It is not possible to completely remove social machinations (and other human shortcomings) from any human endeavor, not even the scientific method. Currently, science dismisses the idea that vaccines play any role in autism while not really having a solid explanation for what supposedly does cause it. I am always enormously skeptical of any claims that "we are absolutely certain X is not it and not even a factor though we have no clue whatsoever what is going on". To me, that smacks of social bias of the worst kind.

Let's just say I have less faith in the objectivity of the scientific community than you have and an alternate method for judging what looked like sound advice has, so far, gotten me better results than anything condoned by conventional medicine ever did. Should it fail me, I will reconsider my options. My judgment of these things is rooted in a 10 year track record of steady forward progress against supposedly impossible odds, not celebrity endorsements of things you and I apparently would both agree are hooey.

Peace.


It is easy to class out what could have an effect when it is something easily as monitored and controlled like vaccinations. Changes in vaccination rates have had no influence over autism diagnosis rates. So while common sense tells you therefore the two aren't linked due to the lack of correlation there have also been comprehensive statistical studies to back the hypothesis that there is no link.

Why we don't have a solid answer to a cause of autism is because it is likely to be a combination of factors, both genetic and environmental (and likely not a single combination of those). There are plenty of other modern environmental factors that are suspects and but the alt-medicine lobby seems to be leveraging this disproven hypothesis for they own ends. Alt-medicine is big business, for example I know a couple of people making "fuck you" money doing it.

I agree that the human element is always a factor in studies which is why scientists go to great lengths to remove them such as double blind studies for example where both the tester and subject don't know which group the subject belongs to (test or control).


At 33 million miles to the millimeter, the about 4000 million miles from the sun to Pluto would be around 120mm. Just beause you had an error in your calculation doesn't imply that either your teacher nor science as a whole are wrong.


It's possible I am misremembering the exact numbers from many years ago. But that doesn't change the fact that any accurate model of the scale of the solar system would not have fit in the classroom (and certainly does not fit on the pages of a book). There are scale models of the solar system in the world. They get laid out across several city blocks and things like that. One of them puts something (a star maybe? -- not something within the solar system, I don't think) in Australia when the model of the solar system itself is in some place like Great Britain.


I'm not hostile to opposing viewpoints. Truthfully I don't understand.

Now you've mentioned it I'm trying to think of a third option would be something along the lines of "Vaccines could be applied differently than they are today". I haven't seen any evidence that supports that theory, but primarily I'm focused on people the refuse to vaccinate their kids at all. Not the ones that advocate different methods of vaccination.


3. They do enormous amounts of research and are very devoted parents who keep their kids healthy without prescription drugs or vaccines. They use diet, lifestyle changes and herbs/supplements (which are very respected in some "traditional" medicines) in place of what conventional/modern doctors would do to kids.

I have a form of cystic fibrosis (as does my 23 year old son). I have gotten off 8 or 9 prescription drugs and gotten me and my kids healthier. A great deal of what I know about getting healthy I learned from an anti-vax/alternative health board that believes that vaccines and other sources of metal poisoning cause autism (and related disorders). (EDIT: I don't think it's quite that simple, but I do think that is certainly a factor.) Both my sons fit the profile for ASD. Getting the three of us healthier has dramatically reduced their ASD symptoms. My son with cystic fibrosis has not been on antibiotics for over 12 years -- more than half his life -- and has taken no medication whatsoever in about 4 years. Most people with CF take hundreds or thousands of dollars worth of "maintenance drugs" every month, more when they are "sick" (having an exacerbation).

Most people with my genetic disorder get flu vaccines and pneumonia vaccines and other vaccines religiously. And they get gradually sicker and sicker until they die, usually at tragically young ages. I get a lot of flack off of people in the CF community for advocating non-drug approaches to the problem. I also get treated like I am some kind of irresponsible fruitcake and bad mother because none of us has seen a doctor in several years. We haven't seen a doctor because a) we aren't "sick" like we used to be and b) no doctor can help me improve on my track record of success. Doctors told me flat out to my face "people like you don't get well -- symptom management is the name of the game". I beg to differ.

Thank you for your reasonable reply.

Peace.


Wow downvotes? I don't agree with most of this position but this viewpoint is while an anecdote and not based solidly in science is valid. Certainly a healthy balanced diet creates a healthier body and something everyone should implement whether they are managing a chronic illness or not.

I don't agree with not vaccinating as a general rule, but I am not overly familiar with cystic fibrosis so I am not aware of what risks sufferers have and what medications sufferers are asked to use. Certainly this is still relying on heard immunity for things like measles, mumps, polio and the like. Healthy living does not prevent these diseases.

Could you describe why you chose not to vaccinate for anything?

Another position I will agree with, though it is only implied in the comment is doctors seem to over prescribe medication. Whether it is a desire to help, or be seen to do something or just laziness to get onto the golf course. Certainly I have seen this anecdotally, I am often offered antibiotics when I don't really need them. Things like presenting with flu symptoms and being given a script to prevent a throat infection.


Could you describe why you chose not to vaccinate for anything?

:-) Wildly inaccurate assumption. :-)

My oldest son is fully vaccinated. I was diagnosed with CF in May 2001, just before I turned 36. My oldest son was diagnosed the following month, shortly after turning 14. (He was born the day after my 22nd birthday. My youngest was born on my 5th wedding anniversary. When I was married, I went around telling everyone my husband was too cheap to buy me anything. <wink>)

When I was first diagnosed, it was after having been bedridden for 3 1/2 months, after 10 weeks of sinusitis turned to pneumonia. The first few years, I got my flu shot every year. My then teenaged son refused his and was very adamant that he would rather have the flu than the flu shot. I was very slow to join the anti-vax crowd and I don't promote it as a position. But I did eventually stop getting my annual flu shot and my youngest son never got the last of his vaccinations. The reason I stopped getting my vaccinations: Absolutely everyone (including my oldest son) who was helping me get well when most of the wold insisted it couldn't be done were strongly anti-vax. No on tried to talk me out of it. But I eventually decided to skip the shot and see if I did better. I haven't gone back.

As for doctors over-prescribing medicine: I think that bias is built in to the way they are compensated. Drugs offer short-term gains with long-term consequences. The doctors can claim credit for the short-term gains while distancing themselves from the long-term negative consequences and not really owning that -- even though it isn't at all secret and everyone in the CF community refers to drug side effects as "a necessary evil". If you are basically healthy, you can do this to yourself occasionally and it isn't necessarily a big deal. But if you have a chronic, deadly condition, it helps to put you in the grave and you cannot prove it. All the experts blame your genes, there aren't really big samples of groups of people successfully doing something else (just a few "anecdotal"/lone nutcases like me), and doing nothing (which is what people seem to think I am doing) does in fact kill you if you have CF.

As for diet and lifestyle: Life is chemistry. Everything you eat, drink or touch impacts your body chemistry to some small degree. If you are willing to do enough research and make enough changes, the chemical impact is greater than what drugs do to the body. But it's hard to sell people on that. <shrug>

Thanks for your reply.


Would you immunize yourself or your children for things like MMR now?

I think science and doctors are getting better at studying the holistic approach you talk about, and some things will be born out by the facts and others won't. I am glad things are working for you and your family, and certainly I would contend that a sufferer of a disease like CF is a someone who can rely on herd immunity and boost their immune systems in other ways, and not draw critizim for doing so.

Certainly what you eat has an a large impact, but the complexity of our bodies is such that it is very difficult to draw conclusions on what helps people or not.

I strongly disagree with "the chemical impact is greater than what drugs do to the body". If your diet is lacking in vitamin c does getting the vitamin from an supplement (in "drug" form if you like) have a greater effect that getting it from an orange I think you would agree not and I would say it is the same. (I am using vitamin C here as the supplement/drug because it has been shown to be taken up by the body just as effectively in both forms.


Would you immunize yourself or your children for things like MMR now?

My sons are both legal adults, so it is no longer my decision to make for them. I don't have plans/expectations to have more kids. I would be very reluctant to get anymore vaccinations. I have done better without them. So far, I haven't really had to make any decisions regarding some "position" along those lines. I don't recall the last time I had the flu or a cold. I think the things we are doing does provide protection from infection, but you have to stay on top of it. It isn't a nice simple "do it once" solution -- but those solutions weren't working for me anyway.

I took quite a lot of supplements for a long time. I take very few these days. I think it is better to get it from food, if possible. If you do the research, you find, for example, that magnesium is best absorbed when taken with calcium and calcium is best absorbed when taken with a few other things. I think there are also micronutrients in food that have yet to be adequately cataloged and studied. So I think food is, generally speaking, a superior means to get what we need because we can't replicate the complexity of food with our supplements, though supplements definitely had their place for a long time for me while I was trying to undo decades of damage and it simply wasn't possible to get the high doses of nutrients I needed from food alone.


Do you have any lifestyle/diet resources you can point me to?


I have a website where I talk a little about things I've done. There are some links on it to other resources. The link to it is in my profile (the one with "health" in the name). If you have some specific issue you are trying to address, you can write me privately and I can try to make some suggestions/give some pointers.


Perhaps I'm misinformed, but my understanding is that CF is generally detectable early on - most CF kids born before the 20th century didn't last much longer than a year.

Is it possible yours is just an unusually mild case?


Yes I have a "mild case". Though "mild" is a political hot button in the CF community and the phrase "mild CF" can get you lynched in some crowds. The PC term is "atypical CF". Just as they first recognized "classic Kanner's syndrome" as the only form of autism and now recognize a variety of less severe issues as part of "autism spectrum disorder", they also now recognize less severe forms of CF. That certainly contributes to how long I have lived but it does nothing to explain how I came back from death's door.


You are not really presenting any evidence, especially evidence particular to vaccines and autism. It doesn’t matter how nice and great the alternative health board is if they can’t muster satisfactory evidence.

I would also think that if what you say is indeed true, many scientists would be very interested in your case.


You are not really presenting any evidence, especially evidence particular to vaccines and autism. It doesn’t matter how nice and great the alternative health board is if they can’t muster satisfactory evidence.

I was not offering to give evidence particular to vaccines and autism. I don't even believe that vaccines directly and solely cause autism. (I do believe they are a contributing factor but I think it's more complicated than the two sides want to make it out to be.) I was only suggesting that the two possible characterizations being listed for parents who are anti-vax were not the only two possibilities.

I would also think that if what you say is indeed true, many scientists would be very interested in your case.

You would think so. But my doctor's reaction to me getting healthier was to schedule me with fewer and fewer appointments on the theory that I didn't really need his attention and other patients needed him more, while expressing zero interest in how I was getting well, even though he was clear it was something I was doing, not something he was doing. (This is another reason I haven't seen a doctor recently: My experience is doctors don't really want to hear what I have to say and the only thing they can offer me is drugs, which I have worked extremely hard to get off of and plan to stay off of.)


Some debates cannot be solved by looking at the positions of both sides and picking the middle (though that sure would be nice and simple) and a MD is not a scientist (doing basic research probably won’t make her or him money, it’s not an effective use of her or his time).


A) I don't think I'm picking the middle. I'm saying most things aren't as simple as black or white arguments would like to make them be.

B) No, an MD is not a scientist. I have a website, have had it for a few years. Very few people of any sort have expressed any interest in it whatsoever. I'm not holding my breathe. I don't expect it to catch on.


Humour us, what is this third option? It's possible to describe somebody's point of view without agreeing with it yourself so I don't see why you need to dodge like this.

For example (I believe in evolution): "some creationists commonly argue that some constructs in biology, such as eyes, are too complex to have evolved from simpler systems. They call this concept irreducibility".

See?

If you're interested in a clean and logical discussion, which you seem to imply that you are, then you need to at least participate first!


Apparently crossed in the mail, so to speak:

http://news.ycombinator.com/item?id=2073691




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