Mental Models

"Cystic fibrosis (CF) is a life-threatening genetic disease affecting approximately 30,000 people in the United States. For people with the disease, a defective gene causes the body to produce a faulty protein that leads to abnormally thick, sticky mucus that clogs the lungs and can result in fatal lung infections. The mucus also obstructs the pancreas, causing difficulty for a person to absorb nutrients in food and can block the bile duct in the liver, eventually causing permanent damage in approximately six percent of people with CF."

CF is a genetic variation which causes all of the cells of the body to function differently from "normal" cells. Understanding these differences and making lifestyle and dietary changes in accordance with the specific cellular differences between CF patients and "normal" people is a means to achieve actual health. For example, I think the "thick mucous" is actually a consequence of the tendency to purge salt at high rates rather than an innate trait. Just as pale skin does not cause sunburn but merely makes one more prone to it and someone with pale skin does not have to be sunburned all the time, I think CF does not cause thickened mucous either and someone with CF does not have to have thickened mucous all the time either.

Salt and mucous membranes

One of the things which CF cells process differently is salt. Because of the high rate at which people with CF purge salt, we tend to have very salty skin. This is such a well-known fact that the primary test for CF is a "sweat chloride" test to measure how high the salt content of one's sweat is. Since salt is a significant component of mucous and mucous lines both the respiratory system (sinuses and lungs) and the digestive system, it seems obvious to me that the misprocessing of salt is a primary cause of CF symptoms, which include chronic respiratory problems as well as serious digestive issues. However, this primary cause of symptoms appears to be largely overlooked by conventional treatments for CF. The only advice that CF patients typically get in regards to this is to "eat a high salt diet". For I and my son with CF, using sea salt in place of table salt and taking it as a "supplement" (because our bodies purge salt at high rates, so we feel we need "extra") has done a great deal to heal our respiratory and digestive issues. My son stopped needing digestive enzymes in May 2006.

Bicarbonate and PH balance/excess acidity

Another thing CF cells process differently is bicarbonate. CF patients tend to be acid and bicarbonate is an alkaline substance. So it seems to me that the fact that our bodies purge bicarbonate is likely a primary cause of excess acidity in CF patients. Although it appears that CF has not been treated this way, for other conditions it is well known that excess acidity causes inflammation and if you treat the acidity you can get at the root cause of many problems associated with inflammation and inflammatory diseases. It appears to be common knowledge in the CF community that CF patients tend to be too acid and it is certainly common knowledge in this community that treating inflammation reduces infection. However, in the CF community, it seems to be a "new" idea that you can prevent inflammation from occuring by treating the excess acidity which is typical of CF.

High through-puts

Since bicarbonate and salt seem to be purged from the body at high rates, I think the high rate of through-puts is another significant factor in CF. Since I am an environmental studies major, I tend to mentally compare this to the difference between rain forests and forests in more temperate climates. In rain forests, the daily rains leach the soils of nutrients, leaving poor clay soils. In contrast, more temperate forests typically have a large amount of rich top soil. When a temperate forest has a fire or a section is clear cut, it fairly rapidly begins to re-seed and grow back. But when a portion of a rain forest is cleared, it does not readily grow back because the majority of valuable nutrients in a rain forest exist in the living forest itself rather than in a large store of rich topsoil. I think the high through puts in CF patients has a similar effect on our bodies: Once damaged, they are hard to repair because it is hard to get things to "stick" -- they get purged too easily.

I also suspect that the high through-puts means that CF patients are sort of "absorbent, like a sponge" and this is probably why we are so vulnerable to allergens, toxins, and germs in our environment. I think this is part of why it is so important to make lifestyle changes to avoid or reduce exposures to such things. Also, if we "soak up" large amounts of bad things and do not have sufficiently high rates of the "good" through-puts (like sea salt and alkaline foods), the bad stuff sticks around. I think this is part of why health problems in CF patients are typically resistent to treatment: current mental models don't address this underlying issue and try to just layer drugs and so forth on top of the illness/allergens/whatever rather than work at both protecting CF patients from exposure and getting sufficiently high good in-puts to displace the bad stuff.

Oils

I am still thinking this one through. However, another thing that CF patients are told as far as diet goes is to "eat a high fat diet". Anecdotally, up until age 5, I used to routinely get in trouble for picking up the stick of butter and taking a bite out of it, leaving my tiny little teethmarks in the butter. In recent months, I have been focusing on figuring out which oils are good for me and which ones are bad for me. So far, I know that olive oil, organic butter, and coconut oil are good for me. I have had both organic butter and coconut oil recommended to me as "good oils" generally and told that coconut oil helps heal gut problems in general, not just the gut problems CF patients have. I know that canola oil, soybean oil, peanut oil, and safflower oil are all bad for me. My understanding is that canola oil is bad for everyone and soybean oil is bad for all CF patients (because all soy products are contra-indicated for people with CF). I think I have heard that safflower oil is a "good" oil, so I tried it but it turned out to not be good for me or my son. My problem with peanut oil is probably due to a mild allergy to peanuts, which may not have anything to do with the needs of other CF patients. Having a small problem with a food seems to cause one to have a big problem with the oil because it is so concentrated.

Below are some mental models concerning health care and related ideas that I have seen elsewhere on the web. I hope to add to this list in hopes of getting people to start thinking differently about Cystic Fibrosis, Autism Spectrum Disorders and other diagnoses that conventional medicine is failing to effectively address.

Town of Allopath: Video or Storyboard Version

Can a Biologist Fix a Radio?

Some remarks I made once about Autism