50 Years Ago, the Sugar Industry Paid Scientists to Blame Fat (2016)
npr.org
npr.org
One or both of the theories has to be wrong but I cannot decide. I can learn and read all about it and take both viewpoints into account but I still cannot decide. I could do my own research but I would come up with one or the other answer depending on what data I look at but it's not better than what I have already.
What should I do?
This is a real problem because science cannot provide the correct answer. It is more about choosing a side and sticking with it than about finding the truth.
I’m not from the US and in our country the industrialization of the food supply happened much later, along with obesity and diabetes, which back in my grandparents’ time were very rare. My grandparents lived on the countryside, working on their farm, raising their own crops and animals.
Grandpa died at 99 years old and worked his land until 95.
He ate 6 to 8 eggs per day (they had a lot of chickens). Meat was more expensive, sacrificing an animal about once per week, but they were cooking with lard and butter all the time. They also had plenty of milk and cheese from their own goat or cow. You know, the kind of really fat milk that you can’t find in stores. They also drank their own wine, daily.
They were not eating sugar. Or vegetable oils.
But in lieu of the same conditions, the logic to consume same diet isn't that sound.
They didn't eat ready-made processed meals loaded with salt and sugar, they didn't drink soda except on rare occasions, they didn't eat nearly the same amount of candy that we do today.
I'm only 33 and from my childhood I remember soda as a rare treat that was saved for birthdays and other special occasions, or if my dad and I had been working in the garden or on a DIY project. Very few things are more satisfying than a well-deserved ice-cold sugary fizzy drink while taking a break from hard work.
Soda was a luxury we didn't get every day, and 25cl was the standard serving size. Anything smaller than a 33cl can seems to be exceedingly rare now, and usually people go for the 50+cl bottles.
Our habits are completely out of whack.
Sure, but like often the case, it could be more complicated than that; different people can react differently to foods.
In one sense maybe but it's hard for any one other factor to be larger than sugar in contributing to the decline of American (and world-wide) health.
Wat. Data please.
https://www.google.com/amp/s/bigthink.com/two-maps-and-one-g...
It seems that obesity in Europe affects 1/4 to 1/5, while in the US is 1/3. The EU country with highest incidence of obesity is alse the one that is famous for its lack of a (decent) food culture, the UK.
As an Italian, I find it hard to convince myself that US obesity problems have one single cause to blame, sugar, rather than a food culture that is generally bent towards the childishly fancy: grilled meat, fried stuff, overwhelming sauces, the super-fatty, the uber-sugary, no vegetables and very little home cooking.
No surprise they have an obesity problem. Of course Americans are also usually nice people in a big way, let's not forget.
One of these things is not like the others...
Buying big soft drink bottles instead of small is both cost-effective (as they're usually cheaper per liter) and a plastic saving measure.
(What I particularly dislike about modern consumerism is the infatuation with small: small bags of chips, small bags of fruits, individually-packaged sausages, small bottles of drinks, small bottles/bags of cosmetics, etc. Combined with disposability of packaging, it's just a huge generator of plastic waste.)
Edit: I agree with your complaint about packaging, but it's another problem that's not uncompatible
True, but bigger serving sizes have been shown to increase consumption. If you reduce soft-drink serving sizes from 500ml to 350ml, for example, most people will not purchase two - and will consume less overall.
Carbonated drinks fizzle out quickly and they don't taste that good afterwards. So, if you buy bigger bottles, you are inclined to drink more so it doesn't go to waste.
They all make a great case that fat is good for you (proper fat like animal, not vegetables oils which really aren't from vegetables at all).
You're right it's more than just sugar, it's carbs in general. Which includes French fries, pizza etc. The sauces they have tend to be loaded with sugar also.
One can still be healthy eating no vegetables and just meat. Just cut out carbs. And eat lots of organ meats which have high vitamin content (more than vegetables).
Another problem with cutting the fat is that vitamins are fat soluble. So no fat makes it harder to absorb.
Why is the oil not from vegetables?
Hence you would rather use more stable animal oils like fat or oil from process that aren't so extreme like olive oil, avocado oil, coconut oil etc.
Calling them vegetable oils is a misnomer to help sell them. I bet just like in the original article, and just like transfats, it will come to light that these mass selling "vegetable" oils are also damaging. It took 90 years for them to admit transfats were bad and now replaced animal fats with vegetables oils.
Haha wow. Citation absolutely needed.
In my mind, I dont believe people have changed. People are still religious, our priests are just getting smarter at it by making more sensible crusades (and one that has legitimate environmental and especially world-security implications with respect to Russia standing to gain enormous competitive advantage). The politicians and Leonardo DiCaprio's flying around the world on private jets on one day flights to pick up participation trophies (yes, for global warming) see you as cattle, just as always. If they cared, the state of governance: corporatism and cronyism would be the exception.
Whatever the outcome of things like global warming, I just hope that the internet leaves more of a living record that people can try to learn and understand what it was like to experience this while living through it. We need many more organizations like archive.org. They, in the long run, may be providing one of the most relevant services in our society today. Here [1] is an archive of this site from 12 years ago. Outside of historical record it's also just remarkably interesting browsing. Now imagine when that is from 100 years ago, or 1000.
[1] - https://web.archive.org/web/20070221033032/http://news.ycomb...
I still suffer from this rubbish though: 1. I often can't find any meat in the supermarket that has not been denatured by having the fat removed. 2. I reject a lot of products which I suspect I'd like because they have added sugar. 3. I have to tamp down on my anger when I hear somebody rabbiting on about the dangers of fat.
Humans truly are a stupid species.
Best to ignore "Public Health" advice, too much of it is demonstrably idiocy.
Youtuber Thomas Delauer makes the case that this is not such a big deal since you can always mix lean meat with other sources of fat (like butter or coco nut oil).
Also I once heard that toxins are accumulated in fat tissue so if you eat animals that were poorly fed (for instance cows fed with grains instead of grass), by only eating lean cuts you dodge that bullet.
The ideal meat might come from extinct megafauna anyway : I'm personally seduced by the theory that the neolithic revolution was some kind of a hack we had to pull off when we hunted down all big game to extinction at the end of the last glaciation.
Which doesn't really contradict your theory though, only your reason for the megafauna extinction.
[0] https://www.journals.uchicago.edu/doi/full/10.1086/695704
It also seems that most mass extinctions were not due to a single factor anyway, but to a combination of factors. So, yeah.
I was just now in a little farm watching animals being fed as a group (goats, llamas etc). They all fought each other over the food despite the fact there were enough for all of them, and this event happens multiple times a day. They can’t learn not to spend energy fighting based on past experience.
One week ago I flew 11 hours in a plane on high altitude and arrived safely in my destination.
My point is, let’s give some credit to our species. We’re trying and life is hard.
I just said to myself, how can they get away with putting out a clear lie and one that is a health hazard.
I generally find that to be the tastiest, since I can use way more butter or oil when cooking it.
Tell me about. Fat fear mongering, fat less skin less chicken. I love myself fat. When I eat fat , I have a stable energy levels all through out the day, but as soon as Carb(bread, grains etc not the veggies) kicks in, I crash.
Also, we've got tobacco and chemical industry collections!
Look at these macros—pretty impressive for a kids food:
http://www.tamarvalleydairy.com.au/wp-content/uploads/Screen...
Unfortunately they only sell it in pouches—no option to buy the same product in a large tub.
Then you can guarantee what goes into it.
Maybe for 3 liters of Milk you can use 2 around 200ml plain "natural" white yougurt cheaply sold.
I add honey most everyday, once a month brown sugar, or for variety aswell sugar cane syrup(what is superb, I have to say) on ocasions. First time better use only 1 liter of Milk only, to avoid waste if the mission goes unplannedly, for lack of training.
:for flavor: Is good for kids add redberries, or other color small berries, for adults, for magnesium, Almonds.
Skim milk isn't great, so the producers have little choice but to heavily market 'low-fat' products.
There's only so much ricotta that the market will bear.
I can only guess that the milk producers want that milk fat for something else, butter and cream perhaps, so created an artificial market by claiming skimmed is healthier.
> what would be the alternative of selling the skimmed milk? Just throwing it away?
Huh, hadn't thought of it that way!
And yes, I use the natural kind of peanut butter with just peanuts and sometimes salt. The bread is commercial loaf bread but of a healthier variety than white, with several whole grains and nontrivial protein, for example.
They're either "Greek" (strained yogurt), which tastes horrible IMO, or sweetened to death with artificial flavors.
I just want some "traditional" types that are sweetened by just sugar with no whey or whatever stripped out.
https://www.youtube.com/watch?v=gmC4Rm5cpOI "Sugar -- the elephant in the kitchen" (20 minutes, year 2013)
https://www.youtube.com/watch?v=dBnniua6-oM "Sugar: The Bitter Truth" (90 minutes, year 2009)
For example, Japanese consume much more fructose sugars than an average USA citizen. He somehow skipped that, when he used the Japanese as an example of healthy diet people. Japanese individuals consume 1000kcal less than USA daily average. That's probably the only thing that matters.
My parents are European, in childhood my mother (and her mother) would regularly give up sugar completely for months at a time to control their weight. They weren't scientific people, and couldn't explain any of the mechanisms or anything - but they taught us kids that sugar and sweets make you fat. It was not treated as any special lesson or profound knowledge, it was basic common sense back in their home country. I vividly remember them riffing me for putting so much ketchup on hotdogs or hamburgers whenever we grilled american style, saying it's mostly sugar (and I was getting fat...).
As a result I've always controlled my sugar intake in adulthood, but the Lustig video gave a scientific explanation for the mechanism of action behind my inherited vague understanding of sweetened foods being fattening. I went from somewhat moderating consumption to avoiding it and refined carbs in general like the plague. My health has improved substantially. It was impactful enough that I emailed Robert Lustig to thank him years later, he even replied.
Raising a family here isn't ideal, but the economy is strong arguably because of the poorly-informed, convenient-entertainment obsessed, consumer society. It's a great place to start businesses and/or earn money. This is what attracted my parents to leave Europe, but they were very young and hadn't predicted how potentially bad the culture and education would be, and seemed to regret not raising us kids back in the motherland.
I don't think I need to make some kind of exhaustive list here. Climate change is another obvious large-scale disinformation campaign.
EVs vs. gas vehicles is another particularly hot one over the last decade. Countless times I've seen a talking head on a screen claiming EVs are no better, that it's just a longer tail pipe. Completely disregarding the fact that EVs enable options for clean energy production, an impossibility when everyone's physicaly driving the actual oil combustors. Even if we continued using fossil fuels to generate electricity, you can do it a lot more efficiently without being space, safety, and weight constrained like you are under the hood of an automobile. Not even considering solar/wind it's an obvious win.
This stuff is so effective on a large subset of the population because we don't do a good job educating people and have long had a strong culture of celebrated ignorance. We don't optimize for producing skeptical, critical-thinking folks in our public education system. Such people don't make good consumers, it's bad for business.
An unfortunate effect is when you optimize your population for consumerism/business interests, and politicians are marketed for elections through the same means as commercial products, you don't really have a democracy anymore. It's just something going through the motions of being a democracy. The influence is too reliable and its control too concentrated. The recent Cambridge Analytica scandal is a good example of how bad it's gotten.
I, also from somewhere in another hemisphere, never heard of "salty yogurt".
(By sweet yogurt, of course people (American or not) normally don't "add sugar" on-the-fly. It is done during making the yogurts.)
Try sprinkle a dash of flu de sel over your m deserts next time and watch them pop.
Or a bit of salt on some strawberries before eating.
Fact your saliva is about 0.04% saline so any food not at that level will taste a little bland.
Here are other things you can do: Just take yogurt and mix it with water 1:1 (or try different ratios) - shake it, or use a spoon - and make sure it's cold (tastes better). Now this drink can be found (usually persian stores), and some of it might have added salt.
Then add some mashed garlic, cut cucumbers + some more things and you have TARATOR - https://www.allrecipes.com/recipe/233760/bulgarian-tarator-c... - also some people like it more watery, some not.
Then you have the greek Tzatziki, or if you like mousaka (greek, bulgarian, or any kind) you can have on the side yogurt to dress.
Best is, but I avoid it now (due to my lowcarb diet) - BANITSA (or spanakopita, or similar) with it - or pastry.
Or just have it as morning drink...
in Japan beans are a sweet dish (sugar added). Many other places they are savory (Mexico)
In South East Asia avocados are a sweat dish (avocado smoothies/ice cream) where as many other places they are used in savory dishes
people add sugar to their yogurt
people add sugar to their yogurt.
For my own use, sugar stats are my top criteria for rejecting yogurt.
The "fat" industry is the animal agriculture industry and it has heavily swayed and influenced American dietary guidelines for decades.
Various food industries presented their side of the argument at a second senate hearing in 1977. This meeting resulted in a watered down version of the Dietary Goals, with less emphasis on reducing meat and dairy products. The American Medical Association also protested the McGovern Report, because it said that providing this basic knowledge on what we should eat might interfere with the medical doctor’s right to prescribe, even though doctors then, and now, know nothing about human nutrition. The effects of the McGovern Report were widespread, and as a result, the consumption of meat, eggs, and milk fell, temporarily.
Industries fought back successfully with every means at their disposal, including hiring lobbyists, purchasing medical and nutrition experts, launching huge advertising campaigns, driving the nutrition education of our children with their bias, and funding nutrition research that favored their products. Their success can be measured by the US food availability data, which documents an increase in mean daily total energy intake from 2,057 kcal in 1970, to 2,405 kcal in 1990, and 2,674 kcal in 2008. We eat more oil, meat, and dairy now than when the McGovern Report was published in 1977. The incidence of obesity and type-2 diabetes has both doubled in that same period of time. These figures are undeniable evidence that industry won and Americans lost.
I agree with the last point though.
By villifying fat, they were able to remove naturally occurring fat from whole foods and turn it into new products to sell consumers.
The public didn't stop consuming fat, they continued consuming fat but it was spread across a greater variety of food stuffs.
An obvious example is skim milk, it's practically water. They don't throw the fat away, it goes into other products like cheese, which people who drink skim milk also buy and consume.
Sugar didn't replace fat in the diet, it displaced fat from some foods, then more foods were added to the diet containing the displaced fat. Sugar just joined the party across the board.
The one that has grated on me for decades is old propaganda from WWII about carrots promoting eye health and bestowing night vision... though fats are easily in her top five evil substances list.
There is literally nothing I've been able to do to change behavior, including keeping an entire directory full of publications of studies refuting whatever falsehood she's spouting to read out loud at the dinner table when I come to visit.
Aside, it is really a shame how reductionist the popular view of nutrition is that we come to scapegoating "fat" or "sugar". T. Colin Campbell says it well:
This is reductionist experimentation that encourages the development of out-of-context remedies targeted to one risk factor or one causal event at a time, a recipe for failure. Reductionist experimentation is valuable for understanding nutrient structure and function, but it too often encourages endless speculation and confusion caused by highly subjective, personal preferences as to which factor to favor in research and to offer to the market.
https://nutritionstudies.org/fallacious-faulty-foolish-discu...
What do you think it says?
I'm not a believer in a single grand sugar conspiracy. I am a believer in industry lobbying distortions in science funding. It's common for any industry with downside risks to consider funding science which suits their message.
Why do you think we have an issue across science about non publication of negative results and hiding datasets?
Neither malevolence nor conspiracy need be invoked to fear sugar lobby influence. A simple confluence of strong incentives and ambiguity in nutrition science is sufficient. It's entirely possible for sugar lobbyists to believe their products are safe and wholesome and channel funding to scientists and institutions that believe the same.
All we need to be concerned is
1. A finding that a powerful and concentrated industry is providing massive funding to research and regulatory bodies at all levels.
2. A recognition that their motivated reasoning is at least as powerful as our own.
No mustache twirling villains need apply.
Sure, Sugar can be acceptable if you use it responsibly. You can even safely consume a Soda if you're in a glycogen depleted state such as after a marathon or from 16 hours of fasting. But, do you really wanna waste you're precious calorie/sugar alotment for the day on a soda?
In any case, it's good that people are starting to think about these things, the pros and cons. Hopefully, people can learn why it's good/bad and thus enable them to make better decisions the next time they need something sweet.
On a related note, I heard Dr. Berg say, sugar craving are a sign that your body is not getting enough potassium. Evolutionarily that would make sense, since fruits are higher in potassium than almost anything else except vegetables.
Of __all__ the soda consumed what percentage would you image falls into this loop hole?
The reality is, sugar (and carbs) for many people are not consumed responsibly. And give the degree of irresponsibility, 99.9% of these people aren't running a marathon or fasting for 16 hours.
You “could” but that will also not help, and actually hurt, with the natural inflammation from running. If you ran the marathon in ketosis, you really wouldn’t be in a “glycogen depleted State” - even though that’s what ketosis generally is - because your body and brain are primarily running on ketones and internally producing all the minimal glucose the body/brain actually require.
In either case after a marathon your muscles will be catabolic, so protein is good, and of course water/electrolytes. But really it should be telling your example of using sugar responsibly is after running a marathon.
No, but 1 can (maybe 100-160 calories), isn’t close to most people’s daily calorie burn.
Sure it might push you over the limit, all other things being equal, and it doesn’t do you much good (aside from the water content), but it’s not going to kill you.
Never say never.
My mental model was more that pure glucose is rather safe (given healthy insuline response) while fructose should be avoided even after a 16h fast.
[1] "As we have also shown, the sugar industry approached Hegsted only after learning of the results of his dairy industry–backed study suggesting that fat and not sugar was a factor in heart disease. “There was no, ‘We’ll get money from them and make the results come out this way,’” recalled Lown, who worked in the department. “It didn’t happen that way,” he said."
I don't think you can compare fat and sugar. Sugar is a specific refined product. It's existed a rare thing for only a couple thousand years and one that's been common for at best a couple hundred years. The association of high sugar diets with diabetes is pretty strong, as an example of potential harm. The complete elimination of refined sugar from one's diet is fairly practical.
Fat, broadly has been part of the human diet since before the evolution of modern humans. It's something that can't really eliminated and certainly shouldn't be.
So, this "no reductionism" argument is fairly crude itself, reductionist-even, actually.
This sounds frankly absurd to me. Sucrose- the normal white sugar- simply breaks down into glucose and fructose; all three sugars- sucrose, glucose and fructose- are found in all fruits in 8-15% proportion on weight (much more for dried fruit, of course). They have always been part of our diet, even before we started hunting animals. It's not because you see it as a white powder it's right to assume it's a new ingredient in our diet. It's not.
Edit: I also didn't mean to imply that I think the key to a long life is simply not worrying. The key to a long life is definitely a combination of genetics and how well you take care of yourself. But part of taking care of yourself is worrying less.
And there's much, much more to life than longevity, like day-to-day quality of life. If you focus on that, then longevity is just a bonus, even if it's true that you have no control over it.
You certainly have control over quality of life, though. And indulgence tends to hamstring that for short-term gain.
I'm in my 30s which is apparently when all the chickens start flocking home to roost from lifestyle decisions. It's sad to see a 35-year-old seat-ridden at the beach because of a smoking habit and obesity, winded from tossing a football around. Not sure my friend feels like that's the road to "enjoying the heck out of life".
Surely the key to life is getting to a point where you aren't dependent on vices like sweets and alcohol and food so that you can partake on your own terms, exercising total dominance over yourself.
If I enjoyed smoking and drinking, I'd invest in that nutrition plan long before taking a stab at whatever the "scientists" and "nutritionists" are whoring out at the moment.
https://www.sciencedirect.com/science/article/pii/S002228281...
Here's an example of researchers being caught doing exactly this: https://en.wikipedia.org/wiki/When_contact_changes_minds
Food is extracted for its nutrients in our digestive tract and excreted. Yet the way we lose weight is by breathing.
(I cannot find the source of that claim)
It’s technically true that we (animals) can convert fat into CO2 and water.
But we burn this fat to release energy. If we don’t need this energy (if we consume more calories than we burn), the fat just accumulates.
So, really, both the "scientist" and subjects of the study were kind of compelled to participate. No one was there of their free will. We were all trying to tick off an educational checkbox on our way to a sheepskin in hopes of a better paycheck someday.
So they played some audio tape of a black person and white person talking. The theory was that they would switch the labels around and see if the same words were interpreted differently depending on whether you thought they were said by a black person or a white person.
The problem is that this was about as effective as switching the labels as to who was male and who was female on an audio recording of a discussion. None of us were fooled by labeling the black speaker "white." We could tell by the sound of their voice.
I participate regularly in unpaid surveys to get points for a reward program. They are often stupid questions like "Which pet would you prefer? A kitten? Or a puppy?" And I randomly click one when the real answer is "I'm not a pet person. I'm not likely to ever own either." But "None of the above" is never an option.
It's rare for me to see a survey that I feel is well designed and well executed. I think most of them are pretty sucktastic even before getting into questions of "Was this some Machiavellian plot?"
In many cases, it makes more sense to attribute it to unconscious bias or conflict of interest, not Machivellian plot. I rarely feel that the people involved are talented enough to successfully pull off some Machivellian plot. The grad student thought she was all clever at telling us the black guy was really white, as evidenced by how she behaved at the big reveal, while we looked at her like "I can't believe you think we were really fooled by this."
(I am not simply inferring this. Another student, coincidentally a black guy, outright told her "We weren't fooled. You can tell he's black when he speaks.")
Food interactions with the body are quite complex and there are myriad other factors involved. We really need to move past the fat vs sugar debate entirely. It's overly simplistic.
If you feed rats sugar and 50% of them die of heart attacks and you have a control group where it's 10% you have found something about sugar and rats.
I'm not sure what the number in this case were but the sugar lobby scientists did a meta study where they used the logic in your post to throw out the studies that made sugar look bad, while keeping all the ones where it looked good.
At any rate the people who I've seen use the "It's just incompetence not malice" defense were most often both.
I have a form of cystic fibrosis. According to the CF Foundation website (last I looked), my body overproduces mucus and I am drowning in my own mucus and this is why lung clearance methods are prescribed.
I have seen exactly one study that concluded that people with CF actually underproduce mucus. This study makes more logical sense and fits with my first-hand experience that I'm sicker and cough more when my sinuses are too dry. I have more lung issues on days where my sinuses appear to have too little mucus, not too much.
It's more logical because mucus plays a critical role in the immune system in keeping out invaders and people with CF are chronically ill and infected due to a terribly compromised immune system.
I've seen at least two discussions on the internet where women with CF complained about vaginal dryness ruining their sex life. I have yet to see a woman with CF claim she left a mucus trail behind her like a giant garden slug and could comfortably have sex with ten men a day because she's just soaked all the time.
Yet, women with CF also complain of vaginal "goopiness."
Logically, the vaginal goopiness and the gunk filling the lungs of people with CF are both some form of phlegm or pus, not the body overproducing mucus. But that's not what the medical literature states. The medical literature illogically claims that I am merely overproducing mucus and drowning in my own mucus.
I'm getting well when the world says this can't be done, ergo my mental models are probably more accurate than the medical literature.
But I'm a former homemaker, so I am routinely told I'm crazy and making all of that up.
Whether you are talking racism or biology, our mental models for how it works shape outcomes. Weirdly, people seem to often think this is not true for biology.
Concerns I’d have with accepting your theory about CF as it applies to people other than yourself (I’m not doubting your own experience) is that mucus and pus are fundamentally different, and this has been studied. For example one area of study is using various drugs to break down a key component of mucous called mucins, and this is based on assays of CF mucus. You would expect pus to be composed primarily of dead tissue and immune cells, especially neutrophils. No one is going to mistake a slide of pus and a slide of mucus, and no one will mistake a spectrograph of the two either.
In support of your idea is that the genetic basis for CF is known and can be replicated in tests, and the pathological mechanism involving over absorbing calcium and sodium ions is also known and reproduced. BUT... it’s also known that overproduction of mucus is not related directly to CFTR! What that means is that the observed overproduction is a secondary result of the underlying condition. That leaves room for the literature to be correct (probably) without accounting for all expressions of the disease. In other words you could be right, and so could the researchers and doctors.
One thing that occurs to me is that a thicker mucus as expected with CF might still create the perception of dryness. Accumulations or blockages resulting from it would be the result of overproduction, but still lead to poor “delivery on target” so to speak. It doesn’t help if one’s vagina is effectively dry because instead of producting a slippery material, an overly viscous substance is produced. Maybe in some people the net result is a lack of mucus where it needs to be, spread around, and resulting infections. It could be that the prognosis for people with a form less associated with overproduction also leads to a better prognosis, because it’s fundamentally an easier problem to solve than other forms or expressions.
It’s an interesting idea, although I’m sorry that you have to live with it.
First, have you have genetic testing to confirm that you have CF?
Unfortunately, no. I have had two or three blood tests that indicate I do not have any of the 100 most common alleles. Last I checked, there were 1600 known alleles. My insurance denied my CF specialist's request for a more comprehensive (and expensive) test from Stanford.
I was diagnosed with atypical cystic fibrosis at age 35 based on sweat chloride results and medical history.
My sweat chloride results were 41, as were my oldest son's. My understanding is that historically, below 40 was normal and above 80 was CF. The numbers in between were an undefined grey zone. At some point, they decided that this grey zone was a milder form of CF.
At the time that I was diagnosed, the life expectancy for CF was 36. I was diagnosed just before I turned 36.
So logically I shouldn't have any of the more common alleles. Those alleles really should result in a case of classical CF and have a more severe presentation.
My best understanding is that I have the same pattern of issues as classical CF, just less severe. The lessened severity combined with a late diagnosis meant I had my own mental models for what was going on with my health and allowed me to question what doctors were telling me.
Because CF is so deadly, most people with a diagnosis are terrified of questioning what they are told. I stopped participating on CF lists because they aren't places you can have a meaningful discussion of the science.
I've talked to a guy with a PhD in chemistry and a guy with a PhD in biology to help me understand a few things about how CF functions at the cellular level without having to deal with histrionics and hatred from people terrified of questioning the current mental models.
One thing that occurs to me is that a thicker mucus as expected with CF might still create the perception of dryness.
Mucus is supposed to be slippery. You can have thicker mucus from being dehydrated. Or it firms up to trap invaders.
If it is thick, it is either trapping something or it's incorrectly formulated. It can't do it's job.
People with CF are chronically infected. Logically, thickened mucus is a reflection of a high load of infection, at least in part.
it’s also known that overproduction of mucus is not related directly to CFTR! What that means is that the observed overproduction is a secondary result of the underlying condition.
I think most of what we think of as CF is really secondary, tertiary or further downstream effects.
If we had a condition called Pale Skin Disorder where you were chronically sunburned to the point of being at high risk of dying from skin cancer, you would have a lot of symptoms that aren't per se inherent to having pale skin.
If you are chronically infected your entire life and chronically malnourished your entire life because people don't know how to address issues with the CFTR, this will have consequences that aren't per se due to the defect in the CFTR.
No one is going to mistake a slide of pus and a slide of mucus, and no one will mistake a spectrograph of the two either.
No, of course not. But at what point does mucus become phlegm? How chemically deranged does mucus need to be before it gets recognized as not normal, healthy mucus? How many microbes does it need to contain to be considered some kind of drainage due to infection rather than mucus?
Phlegm is not pus. But they are both a form of infected drainage.
I don't have the language I want for the ideas I have, in part because I generally don't get meaningful engagement.
I'm trying to make a distinction that's clear in my mind.
When I'm adequately hydrated and have enough salt, etc, my mucus membranes are moist and I'm less infected.
I no longer have vaginal dryness either. I spent some time waking up worried that my period had started because dry was the norm. If it was wet, I was bleeding.
That fact did not prevent me from having vaginal discharge, including from frequent yeast infections. I no longer get yeast infections either.
But in my book, logic beats science every time. You can point to all the studies in the world, but if they conflict with my own literal experience, I am going to be at the very least skeptical of the science.
I wish people would actually engage me on the logic rather than acting like I must be crazy and making things up while they pretend such assumptions aren't some form of prejudice.
I'm starved for actual meaty engagement on such subjects. Like explain to me why you think I'm wrong instead of telling me I hallucinated my entire life and if I really do have CF and I really am getting well, it's 18 years of placebo effect and I couldn't possibly know what I'm talking about.
Fear me. I can apparently hallucinate my body into better health. Up next: Darth Vader Force chokehold, clearly.
Especially considering your form of CF is atypical, you'd think researchers would be tremendously interested in identifying a possibly conflated disease that presents with the same symptoms.
I think the most charitable reading I can give is that when I was much sicker, I tended to do a poor job of trying to present my case and "you never get a second chance to make a first impression." Hopefully the silver lining is that some people will recognize how much my writing has improved over time and will see my past typo-filled and often not very coherent posts as compared to later ones as evidence that my claim that I was very sick at one time and I've gotten healthier holds water and makes sense, even without ever meeting me in person.
The big problem with the GP's "logic" here is that, at least according to cursory googling (the best kind!), plenty of women with CF do report having thick vaginal mucous. Any doctor will tell you that a given disease can present many different ways. It's a terrible idea to reason from your own personal experience with a disease to how the disease works in general.
Thick mucus tends to be poor quality mucus. Mucus is supposed to be viscous. Women self reporting on vaginal mucus also fail to distinguish vaginal "goopiness" from mucus.
This is why i paid attention to anecdotal evidence that lack of vaginal mucus was ruining their sex lives. This was pretty uniformly reported.
It's possible there is some sex worker or fetish club member out there with CF who has sex with multiple men every day and is just not admitting it for done reason. But I spent several years on multiple CF lists and the consesus was CF causes vaginal dryness and this harms women's sex lives.
Your casual dismissal also fails to explain how an excess of mucus causes a compromised immune system. It seems obvious on the face of it that a lack of healthy mucus would be a problem because an important element of our immune system would basically be missing.
Mucus is a gating system. It's like saying "We have too many illegal immigrants in this country because Trump not only built his wall, he made many layers of fencing to go with it, which makes it easier than ever for them to get through. It was better when there was no wall. That did a better job of keeping them out."
(Not intended as political commentary. Hopefully just a readily relatable example of logic fail -- more fencing should not be worse for keeping out unwanted invaders.)
People don't engage with you on this because it's pointless. You're not going to convince anyone who isn't predisposed to accepting your story, the same way a religious person who claims a divine experience isn't going to convince anyone who doesn't already want such a story to be true. In the same way, me telling Paul that he was probably hallucinating on the road to Damascus because he was dehydrated is not going to make him stop preaching the word of god. You don't have good evidence to present, besides hearsay about other internet people's anecdotal experiences. Read that last sentence. That type of thing is about three or four degrees removed from solid evidence. Surely you can understand how unconvincing this is going to be to a disinterested third party?
Also, if you are so disinterested, why waste any time replying to me? If I'm a nutter, downvote, flag and move on. Let someone else talk to me who doesn't think I'm a total waste of their time.
I don't know enough about CF to know why it works how it works. But I do know enough about science and have enough experience with people with "unique" theories of disease to know that almost always, the prevailing scientific wisdom is less wrong.
I'm just making the observation that you are being incredibly dismissive of me while not actually engaging any of my points.
Probably, I shouldn't have replied to such a dismissive position to begin with. The problem being I mostly get dismissive replies that don't take me seriously, so such a policy would have me not talking on HN at all, basically. And I've got no place else to go. HN is the least worst option for trying to find someone to talk with about such subjects, which happen to be a thing my very life basically depends upon. So I'm a tad stuck.
I don't know enough about CF to know why it works how it works. But I do know enough about science and have enough experience with people with "unique" theories of disease to know that almost always, the prevailing scientific wisdom is less wrong.
This was added after I hit the reply button. The word for this paragraph is "prejudice." You aren't actually qualified to rebut anything I've said, you just assume I'm a nutter because there are a lot of nutters in the world.
I refer you to Semmelweis:
Also, the amount of science that gets turned over due to conflation for example. A disease looked like one thing but turned out to be many things that looked similar (cancer). Science is constantly evolving, it's never fixed and finished. Please don't use existing science as a weapon to beat others over the head.
Also, applying your personal observations about people being right and wrong to someone you don't even know. Doctors and scientists aren't a priest class, they've just learned and had more experience than most, and typically only in their own specialties. They are often wrong, being human. And the best ones admit that there is a LOT they don't know.
Also, assuming you know much, or anything, about a topic you probably don't. Don't you think GP has spent more time than your cursory Google search? That you'd act otherwise is illuminating. What exactly do you think qualifies you to disagree here? OP is providing anecdotes, but you're providing... nothing.
Regardless of any of the above, please don't dismiss other people's experiences just because they fall outside some canonical realm (and I'm sorry if this sounds hypocritical after a somewhat rude post) because that's how science turns into religion.
Women routinely have vaginal discharge of various sorts that is not normal, healthy mucus. The fact that women with CF have both substantial vaginal discharge and vaginal dryness severe enough in some cases to "ruin" their sex life strongly suggests that there is a difference between what is produced in quantity by the mucus membranes of people with CF and normal, healthy mucus.
I'm saying that difference is that it's a form of discharge due to infection, not an overproduction of mucus per se. If it were the same thing as mucus, women with CF should not be simultaneously reporting vaginal dryness that interferes with sex and vaginal discharge.
Note that if, as a medical researcher, one managed to identify an underlying causal agent for CF, that would be career changing.
Also, your vaginal dryness theory is only true if CF-related discharge works as a responsive lubricant. That could be, as you suggest, due to a difference in kind, but it could also be a change in composition, differential overproduction, or a complex interplay of several other factors.
I don't have a vaginal dryness theory. My point is that CF is genetic and impacts all cells of the body. The way it works vaginally and in the lungs ought to be consistent. Women with CF consistently report vaginal dryness. They also report vaginal discharge. This discharge appears to not be mucus, given the rest of their testimony.
The reports of women with CF concerning their reproductive tract should cast some light on lung function and is not consistent with prevailing theories that people with CF are "drowning in their own mucus."
"the way it works vaginally and in the lungs ought to be consistent." - not necessarily, and especially not when you're describing symptoms (vaginal dryness resulting in uncomfortable sex), because the mucous of your lungs and sexual lubrication serve very different purposes.
And other symptoms of CF in women, such as more difficulties conceiving, are consistent with mucus overproduction.
The discharge might not be mucus, but that doesn't mean that's not the root of what CF is doing.
I don't think I've said that anywhere and that's not what I'm trying to say.
CF is a genetic disorder. It's root cause is a malfunctioning cell channel, the CFTR, that is defective due to a genetic defect.
But I do think a lot of what we think of as CF is really a consequence of being sick and malnourished your entire life. If those issues can be addressed, outcomes can change.
I found this article [1] that seems pretty consistent with the dehydrated mucus hypothesis. I don't know if it's reputable, and I only read the summary, because it quickly got over my head.
I think there is a lot more going on with CF than lack of adequate mucus. I was merely trying to provide a fairly straightforward example of what seems like an obvious error in logic for a biology mental model.
Since mucus has an immune function and people with CF have a terribly compromised immune system, the assumption that we overproduce it seems flawed on the face of it and fails to be consistent with widespread reports of vaginal dryness.
Thank you for the link, but this kind of argumentation is usually not helpful.
This is no more a failure of a mental model than the fact that autoimmune diseases, which also involve a heightened immune response, can leave people more vulnerable to certain infections.
But, as noted elsewhere, I don't particularly think this exchange is going to leave either one of us content. I wish you the best in finding a treatment that works for you.
I'm well aware of that fact.
I'm not really a fan of the entire concept of autoimmune disease. There are things that go on with CF where they also claim that "overreaction" of the immune system is a factor, though I can't recall a specific example because I left all the CF lists years ago. I don't think ideas like that are helpful, so I made no effort to remember the specific examples.
Cystic Fibrosis is a misnomer rooted in an older mental of the condition which has since been abandoned. It was descriptive of the state of the pancreas in autopsies of people who died of the condition. I think in French they call it mucoviscidosis, which would be medically more accurate.
We have a terribly poor understanding of a lot of medical conditions. "Gulf War Syndrome" just meant you were sick in some mysterious fashion and had served in the Gulf War. Last I checked, they had distinguished three different syndromes, still without identifying an exact cause.
Malaria just means "bad air." It was so labeled because of it's association with swamps. It was only later that it was determined to be due to a parasite where mosquitoes are the vector.
Medicine is shockingly imprecise and organic and a lot of fancy labels in medicine are not as informed as laymen sometimes assume.
When I was asking a former RN one time "So, what exactly does this medication do at the cellular level?" She told me "We don't actually know. That's not how studies are done. You are asking questions that medicine can't answer."
But, as noted elsewhere, I don't particularly think this exchange is going to leave either one of us content. I wish you the best in finding a treatment that works for you.
What I'm doing for my health is working remarkably well. As stated elsewhere, I'm not seeking agreement from the entire world. I'm seeking meaty engagement. So I've been quite content to talk with you, overall.
But you have zero obligation to engage me further. Have a nice (whatever time of day wherever you happen to be).
I generally did not have pain during sex because I got married at 19 to my "high school sweetheart" and he and I accommodated my vaginal dryness without making a big deal of it and I didn't realize how much we were doing to accommodate it until after I finally had a diagnosis and was getting divorced. It was our "normal" and we were oblivious to the fact that it wasn't normal at all because neither of us had much experience prior to getting together when we were both 17.
So I will suggest that lack of reports of pain during sex may say more about a woman's sex partner than about how much vaginal dryness she is experiencing.
I said in another comment -- one you replied to, so presumably you read it -- that reproductive issues in CF are likely more complicated than just this one factor, so I think this characterization of my remark is completely unfounded.
Vaginal anything can't be phlegm for that reason.
Not to take anything away from the rest of your post; dealing with an idiopathic condition that your doctors don't understand must be very frustrating. Best of luck.
Both replies appear to assume that I don't know what I'm talking about. This is the norm: I'm a former homemaker, so I must not know anything medical.
I'm human. I make mistakes. I'm not a doctor and I don't speak like one.
However, I also have a certificate for "Certified life and health insurance specialist" that I got as part of my job at Aflac where I read medical records all day as part of my job. Among other things, the certificate program covered medical terminology and some basics of health and biology. For example, I had to know the different bones in the body because I paid accident claims and a broken hip paid different from a broken arm, etc.
I'm not a medical professional. But I did have a job for over five years that required me to be able to comprehend medical records and surgical reports well enough to decide how much money to pay people for their medical treatments for covered health events.
The rumors that I'm merely an uneducated former homemaker are a tad exaggerated.
I'm not trying to give you a hard time. This is just a long-standing pattern of how people reply to my comments.
Phlegm is mucous of the respiratory system, by definition.
Also, while we are all being pedantic here:
Mucus vs mucous
https://grammarist.com/spelling/mucous-mucus
Mucus is a noun.
Mucous is an adjective.
And I'm adding that because both you and the other person "correcting" me used mucous when you meant mucus:
Vaginas don't produce phlegm, period, and never will.
I don't know you from Adam, I have no idea about your past and also don't care much.
In this one, specific instance, you do not know what you're talking about. Pouring half a page out doesn't change that.
There's no need to be defensive about it, or take it as more than it is. This is HN. Mistakes get pointed out.
It turns out the meaningful question in nutrition is how you get people to comply to a calorically balanced diet when they are depressed and in front of a buffet of both chicken breast and cake, not which is the best one. This has as much to do with social science (and psychology and everything else) as it does biology. In fact, the metabolic part is the easy part: we basically know how that works as well as we need to fix the problem: eat fewer calories.
Now how do you convince 150 million Americans using food as an emotional outlet to stop doing that? Especially when close to 100% of the population that is not experiencing food scarcity does this to some extent, some just worse than others.
It's a lot more complicated than explaining to them that eating too much is bad and that a diet high in sugar is more likely to cause them to do that. It's like telling heroin addicts that opioids lower their life expectancy and expecting them to then stop using heroin. This problem is existential.
>One study that found a health benefit when people ate less sugar and more vegetables was dismissed because that dietary change was not feasible.
>Another study, in which rats were given a diet low in fat and high in sugar, was rejected because "such diets are rarely consumed by man."
The OP post makes no sense if you read the article.
The pro-sugar meta study rejected all studies which found sugar to be unhealthy. Biological studies were rejected because they were too restrictive and nutritional studies because they weren't scientific enough. Yet when the studies had a pro-sugar result they were accepted by and large regardless of their quality.
Which is more likely:
A). Someone is incompetent and randomly picked some dozens of studies which all fit the needs of their source of funding
B). Someone competent picked studies that fit the needs of their source of funding.
Entia non sunt multiplicanda praeter necessitatem.
I’m arguing for C, which is sort of like arguing that Monsanto influences research around GMO crops and online discussion of same, but also that GMO crops are not the devil. The fact that the sugar industry twisted the “science” doesn’t mean the science was good, it just means they disliked the conclusions. I’m not suggesting that excess consumption of sugar is wise, or that the current average consumption in the West isn’t excessive. That doesn’t imply that sugar is poison, and that eliminating it completely is healthier than keeping consumption at a reasonable level.
Personally it seems clear that few people can spare so many calories in a day that the average sugar intake is healthy. That is an argument against excess that’s been known since antiquity.
μηδέν άγαν
We all routinely do things because of financial pressure that we wouldn't do without it. When I had a corporate job, co-workers routinely said "I need my job" as an explanation for doing or not doing a particular thing at work when other people were suggesting "You should do X!" whether in jest or in earnest.
Epidemiology studies aren't acceptable because of unmeasured confounding and they have no way of suggesting mechanism of action. We need lab studies.
Lab studies aren't acceptable because they're not in real people. We need RCTs.
RCTs aren't acceptable because they don't generalize to the population well. We need epidemiological studies.
Related - the rat experiment described in http://calteches.library.caltech.edu/51/2/CargoCult.htm
The whole point is that research conducted with a lot of money on the line is often not science as you and I know it. It's not curious, dispassionate application of the scientific method with clear, honest reporting of the results.
And, ideally, your social graph is not merely "a biased sample of confirmation bias," but instead an interwoven web that connects to the entirety of living human society and which helps you glean truth about the world. I realize that Facebook isn't this. But give it time. We are all interconnected and capable of learning from and teaching each other and the internet is young.
There's no reason in 2018 - and certainly not in the decades to come - to blindly trust any research funded by, for example, a large agricultural company, pharmaceutical company, or government.
Checking results against lived experience is one check and is not perfect. Analyzing the research itself, to the degree that that's practical, is another.
I'm not saying that the solution I've outlined is sufficient, but I feel confident that it's necessary.
You're talking to a working scientist with a substantial amount of grant funding.
"And, ideally, your social graph is not merely "a biased sample of confirmation bias, but instead an interwoven web that helps you glean truth about the world. I realize that Facebook isn't this. But give it time. We are all interconnected and capable of learning from and teaching each other."
I don't know why you're taking a jaded, skeptical approach to science, but an idealistic one to your social graph. Your social graph is biased. It just is. Homophily and communities are things for a reason.
"There's no reason in 2018 - and certainly not in the decades to come - to blindly trust any research funded by, for example, a large agricultural company, pharmaceutical company, or government."
You have just described, especially with that last one, all research.
"Checking results against lived experience is one check and is not perfect. Analyzing the research itself, to the degree that that's practical, is another. I'm not saying that the solution I've outlined is sufficient, but I feel confident that it's necessary."
While I think critical engagement with science is essential, "checking it against lived experience" is comparing your biased anecdotes to study results, and trying to draw a conclusion from that. That, itself, is not science, and is absolutely the fuel behind things like the use of "As a mother..." in antivaccine discussions.
Thank you for disclosing that you have a vested financial interest in this topic.
FWIW, you are talking to someone who didn't need an exposé to realize that sugar was bad for me and made me feel bad. :-)
> I don't know why you're taking a jaded, skeptical approach to science, but an idealistic one to your social graph. Your social graph is biased. It just is. Homophily and communities are things for a reason.
I don't think that my approach is jaded, but skeptical yes. What's wrong with that?
Yes, my social graph is biased. What's wrong with that?
> While I think critical engagement with science is essential, "checking it against lived experience" is comparing your biased anecdotes to study results, and trying to draw a conclusion from that
Yes, I expect that study results, if they want to be taken seriously, not be easily disproven by available anecdotes in my life.
I remember the day - literally the day - in 2002 when a study - conducted at Johns Hopkins and published in Science - concluded that MDMA was a potential cause of Parkinson's disease.
In the study, a drug purported to be MDMA, in a dose purported to be typical, was administered to 10 animals - baboons and squirrel monkeys - and two of them died as a result of the drug.
I didn't need anything but personal anecdotes to tell me that something had gone horribly wrong in this study, since I had dozens of friends (and myself) who had taken MDMA and none of us knew anybody who had died. It was obvious to everyone from the very first day either that these animals had a very different sensitivity to MDMA or that a different drug or different dose had been administered.
I recall that Myself, Rick Doblin, Tom Angell, and many others took to the SSDP mailing list immediately to point this out.
However, it took another year for Johns Hopkins to sheepishly claim that a "labeling error" had caused the animals to be injected with methamphetamine and not MDMA.
Of course the study was retracted on this basis, but not before it went through all the rigor and peer review that is required to pass the filters and both Johns Hopkins and Science. [0]
That's the kind of bullshit that I'm talking about that masquerades as science and that personal anecdotes can easily and convincingly defeat, and the kind of thing I'm saying is required to verify with lived experience.
> That, itself, is not science, and is absolutely the fuel behind things like the use of "As a mother..." in antivaccine discussions.
This seems like an unmitigated cum hoc fallacy to me. The fact that I assert that lived experience is a meaningful mechanism to discover truth does not mean that I agree with every silly conclusion drawn by people who perhaps agree with me on this point.
[0]: https://maps.org/research-archive/mdma/retraction/maps_respo...
The available studies only show that high fat diets can lead to an increase of LDL particles in the bloodstream but there are two problems with such studies ...
For one LDL isn’t bad per se, LDL providing just transport for triglycerides in the bloodstream and it’s more important what those particles contain. Saturated fat leads to big, fluffy LDL particles which aren’t considered to be a threat.
On the contrary it is sugar that leads to LDL particles that are low density and dangerous. If you’re worried about LDL, it’s much better to cut the sugar and the poly-unsaturated fat.
The second problem with such studies are the common confounders: sugar and PUFAs. Whenever you see negative claims about fat in studies, read the actual study and more often than not you’ll see sucrose or PUFAs being used in the diet of the subjects.
What’s absolutely ridiculous is that excess carbohydrates get converted to saturated fat. Our body only needs about 600 calories per day from carbohydrates, the rest being converted to fat.
It is saturated fat that provides a majority of the daily energy needs, not just in humans, but in all mammals.
https://www.bluezones.com/2018/09/news-study-finds-low-carb-...