The Scientific Ignorance of Stasia Bliss – Part I: Cystic Fibrosis

Note: This is the first installment in an article series debunking the massive amount of pseudoscientific claims made by Stasia Bliss. It dissects and refutes her false claims about the cause and treatment of cystic fibrosis. For more posts in this series, see the introduction post here.

In this first installment, the claims made by freelance writer Stasia Bliss (who calls herself a master alchemist and high priestess of Qi Vesta) on cystic fibrosis will be critically investigated. Overall, she wrote three posts on cystic fibrosis: the first contained a lot of pseudoscientific crank claims, the second has a non-response to critics and the third was a re-written version of the first that peddled even more quackery.

Among her crimes against reason, Bliss completely misunderstood the cause and progression of cystic fibrosis as well as the status of lung transplantation as a treatment. She promoted a number of quack “treatments” of cystic fibrosis, such as oregano, daily affirmations and severe vomiting for up to 8 hours for CF patients with nearly complete respiratory failure. In her reply, she did not actually respond to the criticism but put forward conspiracy theories about the medical community, deployed the Galileo gambit, misrepresented her critics as merely “offended” and claimed that medical facts were subjective. In the third post, she promoted germ theory denialism, pH quackery (which she turns into victim-blaming) and the notion that genes are created by “choices”. Bliss also butchers and misrepresents key scientific topics such as epigenetics and heritability. Finally, she provides testimonials for her quack treatment suggestions and misinterprets a couple of scientific studies that in reality does not support her claims.

This article consists of a detailed, point-by-point, debunking of the massive amount of pseudoscience, quackery and general scientific falsehoods in all three posts composed by Stasia Bliss. First, here is a short introduction to cystic fibrosis.

Introduction to cystic fibrosis

Cystic fibrosis is a disease most often caused by a loss-of-function mutation in a transporter of chloride ions (called CFTR). More specifically, the mutation that is most common is deletion of a phenylalanine. This causes the protein to be unable to fold correctly and the cell degrades it. This means that it cannot be inserted into the plasma membrane and perform its physiological function. Cystic fibrosis is an recessive condition, so a person needs a mutated CFTR from both mother and father. The condition usually involves thick mucus accumulating in the lungs, persistent cough and repeated lung infections. Individuals with cystic fibrosis also have skin that tastes salty and poor weight gain. As the condition progresses, the individual experiences chronic inflammation in the lungs and become more susceptible to e. g. bacterial lung infections that are difficult to clear. There is currently no cure for cystic fibrosis but treatments that manages the symptoms include antibiotics against bacterial chest infections, certain types of ventilators to help dislodge and expel mucus. Later, a lung transplant may be necessary to prevent total respiratory failure.

For more information about the scientific and medical details of cystic fibrosis, please see reviews by O’Sullivan and Freedman (2009), Ratjen and Döring (2003), Rowe, Miller and Sorscher (2005) and Davis, Alton and Bush (2007).

Once something gets on the Internet…

On June 15th, Stasia Bliss published a post about cystic fibrosis that was so full of pseudoscientific garbage that it got pulled by the The Guardian Express after getting scathing criticism from all over the blogosphere. The Google cache of the post is no longer available and the Internet Archive’s WayBackMachine only snapped a shot of it after it had already been deleted. To the untrained eye, it looks like this post is gone from the Internet. However, once something has gotten on the Internet, it stays on the Internet.

I took the liberty of taking multiple screenshots of the Google cache of the post and putting them together as an image in case the cache were ever to disappear. I wanted to preserve a copy of her irrational nonsense for the world to see. This image can be found here. Later, I found the a cache of the post on Yahoo!. I managed to WebCite the Yahoo! cache here.

Lung transplantations in context

Lung transplantation is a treatment option that becomes relevant after cystic fibrosis has progressed enough that the patient risks complete respiratory failure. This is after decades of chronic inflammation and infection to the point were the person has severe trouble breathing. It is by no means a first-line treatment and is not carried out without careful consideration of the available options.

Here is what Bliss has to say about lung transplantation for individuals with cystic fibrosis:

Yes, thousands of people every year, worldwide, receive lung and other organ transplants which end up ‘saving their lives.’ However, life after a transplant can be riddled with challenges due to the immuno-suppressant drugs receivers must take for the rest of their lives. In the case of tragic accidents and clear emergencies, this procedure is a life-saver. However, in many cases, such as for sufferers of cystic fibrosis (responsible for 14% of all lung transplants), a transplant may not be the best option given the overwhelming natural solutions available.

Since lung transplants are only considered when respiratory function threatens to collapse completely, it is easy to see where Bliss goes wrong. She appears to think of it as a first- or second-line treatment for cystic fibrosis. It is not. She also asserts, without any evidence, that there exists “overwhelming natural solutions”. These will be examined in additional details later in this article. In addition, she will contradict herself in the third post she wrote when she says that she did not mean to suggest that these “overwhelming natural solutions” actually cures or solves anything.

The progression of cystic fibrosis

Simplified, the progression of cystic fibrosis with regards to the lungs occur, as detailed by O’Sullivan and Freedman (2009), occurs as follows: the thick mucus facilitates infection and makes it more difficult for the body to get rid of the pathogens. This leads to chronic infection of the airways, often with a bacteria called Pseudomonas aeruginosa. This leads to secretion of inflammatory cytokines (“the hormones of the immune system”) which attracts certain white blood cells of the immune system (causing innate inflammation). P. aeruginosa can in turn release various toxins and other chemicals that damage the immune cells causing them to leak out proteases and elastases that hurt other immune cells. Bacterial toxins and the damaged immune cells then cause additional inflammation and tissue damage together with the recruitment of more innate cells.

So that is the scientific view of cystic fibrosis progression in the lungs. Now let us compare it with the warped and distorted view that Bliss subscribes to:

A thick, sticky mucous is overproduced in the lungs and respiratory system, making it more likely to those with CF to develop infections due to bacteria growing in such a hospitable environment. The infection then leads to inflammation which causes a condition where DNA is left behind as scar tissue, making the process cycle again and again.

Bliss is correct that the mucus is thick and that it makes it easier to develop infections because the environment is conducive to the bacteria. She is also correct in that this infection leads to inflammation (in fact, all infections that are detected by the immune system lead to inflammation unless the pathogen actively tries to prevent it). However, Bliss is completely wrong about the mechanisms behind the progression of cystic fibrosis. DNA does not become scar tissue and scar tissue is not the reason the cycle repeats. Rather, it is the interaction between the bacteria and the host immune system that causes worsening chronic inflammation. DNA released from deteriorated and dying innate immune cells may contribute to increased mucus viscosity (O’Sullivan and Freedman, 2009), but the DNA does not become scar tissue and it is probably not the major factor that cause the condition to progress in the lungs.

The fact that Bliss clearly does not understand even the basics of the condition means that one should be very skeptical indeed of the so-called “treatments” that she propose. As we will see, her deep misunderstandings of cystic fibrosis does not end here.

Cystic fibrosis do not spread to transplanted lungs

As we saw in the basic overview of cystic fibrosis, it is a genetic conditions. The transplanted lungs an individual receives will have the genetic makeup of another individual that does not have two copies of the mutated gene. That means that these new lungs will be free from cystic fibrosis. Even though other organs may still suffer from the disease, the lungs are no longer affected.

The problem is, after receiving a lung transplant, the new lungs do not have CF, but Cystic Fibrosis still exists in the sinuses, pancreas, intestines, sweat glands and reproductive tract, which may find their way to the new lungs eventually.

No, the mutated genes in the cells in the sinuses or intestines etc. cannot migrate into the lungs. Cystic fibrosis is a genetic condition and since the new lungs do not have two copies of those genes, they are safe from cystic fibrosis.

Bliss continues with the following peculiar claim:

The immunosuppressive drugs prevent the body from being able to fight new infection, leaving transplant patients very vulnerable.

It is technically true, but it would appear as if Bliss does not understand the basic cost/benefit analysis of the situation: of course the individual will become vulnerable to infection if he or she is on immunosupressive drugs. However, that is still better than being dead from respiratory failure.

Bliss recommends quack treatments against cystic fibrosis

Throughout her post, Bliss promotes a wide range of treatments against cystic fibrosis: oregano oil, yoga, aromatherapy and daily affirmations. However, there is no scientific evidence that any of these so-called treatments can help against cystic fibrosis. There are zero hits on Pub Med for “cystic fibrosis daily affirmations”, “cystic fibrosis oregano oil” and no relevant hits for “cystic fibrosis yoga”, “cystic fibrosis essential oils” (hits were about essential fatty acids and fish oil) or “cystic fibrosis aromatherapy”.

In other words, Bliss is recommended untested treatments for a serious medical condition.

Bliss suggests severe vomiting up to 8 hours against cystic fibrosis (I kid you not!)

I have picked out this suggestion because of its extreme absurdity and highlight how gullibility some proponents of quack treatments can be. Her is her suggestion:

Lobelia is another herb that could be utilized in the case of cystic fibrosis. Lobelia is antispasmodic and emetic, it also has purgative properties and is often used in cases of severe asthma. With mucous build up in the case of CF, lobelia would be used to induce vomiting, causing the body to cough up (sometimes violently) – this black tar and mucous taking residence in the lungs. This process is induced by taking the herb a little bit every 1/2 hour until vomiting begins, and can last from several hours to 7 or 8. Someone, like a health care practitioner should be with you or at least aware of what you are doing before you begin. Do not do this procedure alone.

So she wants individuals with cystic fibrosis, whose condition has progressed so far (i.e. severely compromised lung function) that doctors are considering lung transplantation, to eat a specific flowering plant (lobelia) that induce violent vomiting that potentially lasts up to 7-8 hours!?

This “treatment” could actually be directly life-threatening, since severe vomiting for almost an third of a day can make it even harder to breathe. Is Bliss so deep into pseudoscientific quackery that she does not realize that she could cause profound harm to individuals with cystic fibrosis?

Cystic fibrosis is genetic disorder and NOT caused by negative beliefs

Bliss then proceeds to engage in victim-blaming (something she will do again in her third post on cystic fibrosis) by suggesting that people who have cystic fibrosis have themselves to blame because their disease was supposedly caused by their negative emotions. This is of course scientifically false since cystic fibrosis is a genetic condition that starts before the person is born and probably before the fetus has the capacity for complex human emotion.

According to metaphysics and those who study the relationship between our emotions and the body have found a correlating belief for nearly every physical manifestation in form. Often these beliefs are passed down to us from our parents and we aren’t even aware we are carrying them. In those with what is known as cystic fibrosis, this could be the case – as more often than not, individuals are born with this condition.

Louise Hay, a famous proponent for linking emotional causes to physical ailments has written several books on the subject (You can Heal your Life; Heal your Body) after healing herself from serious health problems by addressing her thoughts and emotions. The correlation she places for those suffering with cystic fibrosis is that they have a ‘thick belief that life won’t work for them.’ In order to combat or heal this belief, she offers the daily affirmation: “Life loves me and I love life. I now choose to take in life fully and freely.” If this is a condition you or someone you love is dealing with, perhaps it would be beneficial to look at the emotions behind the dis-ease. We are a whole being, not just a body, and when we can address our problems more holistically we have a greater chance at success.

Clearly, Bliss does not understand what metaphysics mean. It is a discipline in philosophy that examines questions such as particulars/universals, free will and determinism, identity and change, modal logic etc. It has nothing to do with the causes of medical conditions or their treatments.

So by approvingly quoting Hay, she is putting forward the notion that cystic fibrosis is correlated with “a thick belief that life won’t work for them”. Yet she provides no evidence that this correlation exists, or that the causal process is in the specific direction she thinks it is. What if having cystic fibrosis causes you to think that life will not work? This makes more sense as anxiety and depression is not uncommon among individuals with cystic fibrosis (or any other chronic medical condition).

In the end, cystic fibrosis is a genetic condition caused by a gene mutation and not caused by negative emotions. Having cystic fibrosis may make you feel negative emotions, but the negative emotions themselves do not cause cystic fibrosis.

The quack Miranda warning rears its ugly head

The quack Miranda warning is a disclaimer that can usually be found on websites promoting anti-medical quackery and alternative treatments. This way, they can trick innocent people into buying their stuff while simultaneously avoiding legal action due to making claims about their product that is not accurate. In the original post Bliss wrote about cystic fibrosis, the quack Miranda warning goes in the form of the following

(Information in this article is not intended to diagnosis, treat or cure and is not medical advice, but rather the researched opinion of the journalist. Please discuss options with your health care professional.)

This is, of course, a lie. The information in the blog post is certainly presented with the intention to treat cystic fibrosis and is certainly intended as medical advice. This is clear from the discussion about Oregano that, (allegedly) could fight off pathogens, break up mucous and make it easier to cough up.

As real doctors generally do attempt to diagnose, treat and cure medical conditions, the moment you see a quack Miranda warning, you know you are dealing with “treatments” that are not based on scientific evidence.

Crank claims disable informed consent

When proponents of pseudoscience, who are usually not medical professionals, spread their misinformation to individuals who require medical treatment, then they are endangering the health (and potentially the life) of those individuals. In effect, they are denying the ability for those individuals to give informed consent. This is because a decision based on false information (provided by the anti-medicine crank) cannot be informed. It is therefore ironic when Bliss states that:

Just so long as misinformation and ignorance do not contribute to a choice that can not be reversed – leading to a more difficult journey. Take control of your health and your life today by educating yourself.

In reality, it is the misinformation and ignorance in her writings that contribute to people with cystic fibrosis (and other medical conditions as we will see in future posts in this series) that contribute to uninformed medical decisions that harm people.

Bliss Responds

Unsurprisingly, Bliss got a lot of critical feedback on her post were she promoted crank ideas about the cause of and quack treatments for cystic fibrosis. Instead of acknowledging her errors, Bliss decided to write a “response” defending her irrational beliefs. That response can be found here. Despite calling it a “heart-felt” response, it did not (as we shall see below) contain anything of rational value.

No actual response to criticism

When reading through the response to the criticism she has gotten for her quackery about cystic fibrosis, I am struck by the absence of any kind of actual response. Nowhere does Bliss actually respond to the criticisms leveled against her claims. She does not defend her assertions that cystic fibrosis can be successfully treated with oregano or negative beliefs. Instead, she spends almost 1500 words saying almost nothing of rational value. In the end of the post, she seems to believe that the problem with her previous post (that has now been deleted) was that it offended people, not that it was dangerous and harmful pseudoscience. She responds to her imaginary critic that the only reason they got offended was because they gave her permission to offend them.

Conspiracy mongering

Another tell-tall sign of pseudoscience is when the idea is put forward, with no supporting evidence whatsoever, that there exists a vast conspiracy perpetrated by a certain shadowy group that wants to harm you. Typically these kinds of assertions become fragmented when we realize that the allegedly conspiracy would have involve thousands of people without it getting leaked.

Although not as obvious as many other promoters of pseudoscience, Bliss succumbs to conspiracy thinking when she writes that:

My intention, as a writer and as a human being living on this planet, is to cause a great questioning within every person, to look at what you have been told, who you have been taught to give your power to and who you believe you are and to empower every individual to know more fully, deeply and purely that they, that YOU are powerful beyond measure, that you have healing capacity as yet untapped, that your mind is the ultimate healing and regenerative machine, that you have been led to believe less than what is true about you – and that time is over.

Who exactly is it that Bliss believes that skeptics have “been taught to give” their power to? Who has led skeptics to believe less than what is true about us? Bliss does not say, but I dare speculate that her reply would be something like “the medical establishment” (or similar).

A similar sentiment is expressed later in the post, where Bliss writes that:

We have gone far too long letting the medical community, the government, the IRS, the department of security, our teachers, our neighbors, our religious leaders tell us what to do and how to live, what we are capable of and how long we will live.

Yet she does not explain in what ways we have gone too far letting the medical community tell us about various things or why listening to the medical community about these things is a bad idea. Rather, she paints a picture of how the medical community and the government are somehow secretly controlling people. While individualism has merits, it is not the same as putting your fingers in your ear, running around and shouting “I can’t hear you” when correct information is presented to you.

Bliss confesses to being anti-medicine

Midway through her post, Bliss makes an unguarded confession that she is actually anti-medicine:

As I ponder the responses to my suggestion of another way, other than the medical model, I am met with what feels like deep offense, as if those who are reacting feel as though I have stabbed them personally for saying such things. To me this only tells me that I am doing my job, that the buttons are being pushed and the old way, which has so long been the ‘norm’ is being challenged in this very moment.

Most proponents of quack treatments call them “alternative” or “complementary” medical treatments. Few go so far as to admit that what they are promoting is not actually a medical treatment at all. Bliss acknowledges that what she is presenting is qualitatively different from what she labels “the medical model” (presumably she means mainstream medicine).

The Galileo gambit

Yet another classic debating technique is the Galileo gambit. It basically means pointing out that scientific revolutions in the past were caused by people who were criticized and ridiculed. Therefore, they argue, the fact that their pseudoscientific assertions are being criticized and ridiculed does not mean anything. They just known they are on the right track and soon, people will acknowledge them as modern scientific heroes. Even setting aside the incredible arrogance and self-righteousness inherent in this approach, it is worth pointing out that while it is true that scientific revolutionaries are often criticized and ridiculed, so too are crackpots. It is probably a safe bet to say that most people who are criticized and ridiculed will not contribute to a scientific revolution. A lot of them will just be crackpots.

Therefore, when Bliss states that “all that was ever accepted as a new model of reality was always first ridiculed before it was embraced”, large alarms should be going off in our heads. It is a well-known denialist tactic.

It is not offensive, it is dangerous pseudoscience

The major problem with the original post that Bliss wrote was that it contained a lot of misinformation, quackery and scientific errors that could potentially harm people. Shockingly, Bliss does not seem to grasp this. Instead, throughout her response post, Bliss makes the straw man assertion that her critics have accused her of being offensive. This is clear from passages such as:

One thing I have learned in my life is that anything that another person says or does that offends me is clearly highlighting something I need to look at within myself, or else I would not find it offensive. So, when I feel offended, I take a step back, I thank those people, that person who has triggered me so that I may heal, so that I may find the place in me still as yet not claimed as whole – and claim it. I hope that my words can do that for you. I hope that if even one word I say offends you that you can use it as a magnifying glass into your own soul, into your own subconscious mind to discover what gifts lurk there to be uncovered, because those things that trigger us most will surely become our greatest assets when healed.

In other words, her tactic is that she claims that her critics were offended by what she wrote and that this was because those critics have some inner problem they need to attend to. That is of course an unsound argument because it attempts to deflect from her errors by highlighting reasons for why her critics criticized her. Although her writings are not exactly crystal clear, it seems to be some form of argumentum ad hominem circumstantial. A suggestion to Bliss is that she actually tries to find out what the criticisms of her assertions are before responding.

There is no “personal truth” in medicine

When you expose the bullshit beliefs that some people have about medicine or quack treatments, one common fall-back strategy is to respond by saying that “it works for me” or that it is “my personal truth”. However, this is a flawed approach as there is no personal truth about medicine. Either the treatment actually works and this can be shown in large and methodologically sound clinical trials or the treatment does not work. There is no such thing as a treatment that is useless, but works subjectively for one person.

When Bliss asserts that “I speak from my heart the truth as I see it, it will not always be the truth as you see it”, it is not only a rejection of modern medicine and science, it is also contradictory since she earlier stated that the medical establishment “covered up the truth behind false lies and misleading interpretations of yesterdays truths”.

Deleted? More like reforged

The first post written by Bliss on cystic fibrosis got deleted. However, another post with a similar message was posted a few days thereafter called Cystic Fibrosis: A Brave World of Hope and can be found here. In it, she repeats many of the same false assertions she did in the first post she published. She also added a couple of new ones, such as the strong promotion of pH quackery.

pH quackery and germ theory denialism

The human body is not an entity that passively floats along shifts external environmental conditions. Rather, the human body maintains what is know as homeostasis. It basically means that the body actively attempts to maintain a constant inner environment, even if the outer environment changes.

When it comes to pH (indirect measure of acidity), the body has several powerful mechanisms to keep the internal pH constant at a physiologically optimal level despite external decreases in pH or the consumption of acidic foods. These include the bicarbonate buffer system (converts hydrogen ions into carbon dioxide that we exhale), proteins (can bind hydrogens), hemoglobin in red blood cells (can also bind hydrogens), phosphates (work similar to the bicarbonate buffer) and renal regulation (the kidneys can excrete hydrogen ions in the urine). For more information, see pH Quackery and Human Acid-Base Homeostasis.

Furthermore, the entire notion that a wide range of unrelated diseases are caused by your body being too acidic is fundamentally flawed. This is because a constant non-transient reduction in pH below physiological levels is directly life-threatening and would not cause chronic conditions lasting over many years. Rather, it could be outright lethal if you did not receive very specific treatments.

Since the body has such powerful methods of maintaining a physiologically optimal pH, it is clear that Bliss is promoting pseudoscientific beliefs when she claims that:

According to research done by Dr. Robert Young, “All disease or dis-ease, including CF is caused by individual lifestyle and dietary choice or for children how parents are feeding and caring for their children.” This seems like a harsh statement, but according to Dr. Young, who works intimately with all kinds of disorders, he states that cystic fibrosis, like other ‘-osis’ dis-eases are cases of an over acidic condition in the body which can be brought more fully under control through dietary measures.

Dr. Young explains further: ”When you choose or parents choose for their children to eat acidic foods or drink, such as animal flesh, eggs, dairy products, like cheese, yogurt and ice cream, you set yourself up for excess tissue acidosis and a serious health challenge, such as breast cancer for a woman, prostate cancer of a man or cystic fibrosis of the lungs for a child or young adult.”

As we have seen, cystic fibrosis has a genetic origin and the body has powerful systems to maintain pH homeostasis so the claim that cystic fibrosis is due to an “acidic condition” in the body is demonstrably false.

It is also quite fascinating that Bliss quotes Robert Young who basically claims that all diseases are caused by lifestyle and dietary choices. This is tantamount to a rejection of the germ theory of disease, a position that is enormously untenable. This is because we have evidence that many diseases are caused by viruses, bacteria, worms and fungi.

Genes are inherited and not created by choices

All the genes in your body are inherited. For most genes, you have two copies (one from dad and one from mom). These came from the sperm and the egg that fused together to form a zygote, that went through many DNA replications and cell divisions. This is not a conscious, intelligent process. Rather, it is the outcome of purely mechanistic chemical and biological processes. This is basic genetics / molecular biology that you can find in any high school biology textbook. It is therefore astonishing to read the following assertion:

One may argue that genetics have nothing to do with dietary or lifestyle choices, to which Dr. Young replies: ”The intelligence of the cell or its genetics is only as healthy as its environment.” Suggesting that genes are created by choices, not simply appearing out of nowhere, but have an origin in an environment where certain dietary factors, thoughts, habits, were repeated enough so as to alter the genes in their favor.

Let us take a minute to unpack this quote. Bliss is actually claiming that genes are created by “choices”, that the mainstream position of the origin of the genes of an individual is that “they appear out of nowhere” and that thoughts can create and alter of genes?

In reality, genes come from your parents, they replicate mechanistically without conscious influence and thoughts do not cause genes to mutate.

pH quackery morphs into victim-blaming

Perhaps the most vile assertion in what Bliss has written about cystic fibrosis is the claim that individuals with cystic fibrosis and their parents are themselves to blame.

Immediately this causes one to think “is this doctor suggesting the parents are to blame for a child with CF?” Yes, and No. Yes, in the way that our choices do indeed affect the way our cells replicate, mutate and pass on to future generations. No, in that we are not taught this, in fact we are taught something of the reverse, leaving us as unintentional contributors to conditions in our posterity that we are only now becoming aware of.

Her belief in pH quackery enables her to blame the victim. If only they did not eat so much acidic food, the argument goes, they would not have cystic fibrosis. This assertion is easily disproved by two key facts: (1) lots of people eat acidic foods but do not get cystic fibrosis (more specifically, the epidemiological pattern of cystic fibrosis does not match consumption of acidic foods) and (2) cystic fibrosis has a well-studied and clearly identifiable genetic cause.

Remember this the next time someone asks “What’s the harm?”.

Lies and contradictions

Bliss tries to get out of her jam by providing the following rationalization:

In a previous article on cystic fibrosis there was mention made of various herbs and essential oils that could be used in order to support the lifestyle and health of sufferers. These suggestions were never meant to be taken as single cures, but rather as measures one might consider in addition to their regular therapies until the time they might not find the need for medications and breathing support any more […]

Bliss now claims that she only suggested her quack treatments as complementary to modern medical treatment. However, if we go back to what she wrote in her first article (discussed above under the headline “Lung transplantations in context”) we can see that she promoted her “alternative” treatments as “overwhelming natural solutions”. A solution entails that the problem goes away (i.e. cured). This is a very intellectually dishonest tactic.

Butchering epigenetics

How does Bliss defend her absurd victim-blaming? She starts butchering the field of epigenetics (by quoting Young):

This new science is called epigenetics and it is showing that the genetic expression of a cell can be turned on or turned off depending on changes in the cellular environment affected by lifestyle and dietary choice. The expression of cellular genetics in producing excess mucous in the condition of CF can be stopped when you stop pulling the acidic lifestyle and dietary trigger. The human cell is only as healthy as the fluids it is bathed in, just as a fish is only as healthy as the water it swims in. Change the water and you will change the genetic expression.

Yes, environmental factors affect gene expression by epigenetic processes. However, this is not relevant for cystic fibrosis. That is because most cases of cystic fibrosis is caused by a gene mutation that disrupts the function of a chloride ion membrane transporter (other types of mutations cause the remaining cases). So epigenetic modifications of that gene, turning on or off expression, will have no impact. If the gene is transcribed, it will produce the mutated transporter (that usually gets degraded and cannot form a functional transporter and become inserted into the membrane). If the gene is not transcribed, no transporter protein is being produced at all.

Misunderstanding heritability

After approvingly citing Young, Bliss makes an argument that makes it clear that she does not understand the concept of heritability. Heritability is the proportion of the phenotypic variation in a population in a given environment that can be attributed to the genetic variation in that population in that given environment. It is not the proportion of the phenotype of an individual that can be said to be caused by genetics. Moreover, the portion of the phenotypic variation in a population that cannot be attributed the the genetic variation in that population is instead attributed to the variation in epigenetics and environment (for more about heritability, see The Widespread Abuse of Heritability). Bliss does not seem to be aware of this when she asserts that:

Recent studies conducted at Mt. Sinai Medical Center in New York on longevity report that genetics only have about a 30% influence on how long we live, the other 70% is purely lifestyle choices.

Presumably, those researchers estimated the heritability for longevity in a certain population in a certain environment to be 0.3. This does not mean that lifestyle choices account for 0.7 of the variation in phenotype. Rather, it is epigenetics and environment (which is more than lifestyle choices) that accounts for this large portion of variation.

Anecdotes and testimonials are not evidence

Bliss attempts to prop up her beliefs by providing readers with a couple of testimonial. However, anecdotes by themselves are not scientific evidence. The main problems with anecdotes is that they cannot be independently verified, there is no reason to think that they are representative even if true, any observed relief could be due to placebo effects and they can easily become distorted by biases, beliefs, selective memory, misinterpretations etc.

The examples that Bliss discusses (oregano, surfing, dancing and yoga) fall prey to this objection.

They did not even attempt to treat children with CF using yoga!

To her credit, Bliss attempts to discuss some scientific studies that she claims support her irrational beliefs. The first one is about the effects of yoga on children with cystic fibrosis:

Currently, the Children’s Hospital and Research Clinic in Minnesota, led by John McNamara, MD has reported benefits of yoga with children who have CF: “Evaluating the effects of yoga on children with cystic fibrosis: pain, sleep, anxiety, and depression and explored the potential benefits of yoga for children with CF. After participating in a six-week series of one-on-one yoga classes, 20 children ages 7 to 21 reported that they felt more relaxed, could breathe easier, and felt calmer after yoga class.”

She does not cite a reference, either for the quote or the paper.

The quote appears to be taken from an article on the website of the Children’s Hospital and Clinics of Minnesota. It is also worth pointing out that they did not study how yoga affected cystic fibrosis itself, but rather:

After learning from our initial survey study that children with CF are struggling with anxiety, musculoskeletal pain and sleep problems, we implemented targeted physical therapy and yoga protocols to help reduce these symptoms. The results of these studies and other research projects in the pipeline will increase our national presence and lead to the ability to initiate multi-centered trials.

So Bliss took the quote out of context and attempted to suggest that they were testing whether yoga could treat the underlying cystic fibrosis condition. In reality, they were attempting to testing whether yoga was beneficial in treating secondary issues such as anxiety, pain and insomnia.

The problem does not stop there: a quick Pub Med search for “John McNamara cystic fibrosis” reveals 15 papers, none of which examines the effect of yoga on the secondary issues such as anxiety and pain relating to cystic fibrosis. This means that the research has probably not been published yet. Bliss does not explain this, making her use of this research even more suspect. There is also a problem with sample size and it is unclear whether a placebo control group was used.

Meditation and altered gene expression

She also write about a study examining the effects of meditation on health and gene expression. Her is her description of the study:

Another example of yoga being beneficial and even altering genetics was conducted through researchers at Benson-Henry Institute for Mind/Body Medicine at Massachusetts General Hospital and Beth Israel Deaconess Medical Center. They trained 26 people in a meditation practice for 8 weeks who had no prior experience. They were taught breathing, mantra and mind-stilling techniques and were given blood samples before and after the practice. The results were astounding! ”All of the subjects’ blood samples revealed changes in gene expression following meditation.”

First of all, the sample size (N = 26) is far too low to be able to make any categorical conclusions of a beneficial effect. That is because the results are more likely to be the results of sampling error the lower the sample size becomes. So it is flawed to claim that the results were remarkable.

Second, it is also not clear if a control group was given a placebo treatment for comparison or if such a control group even existed. That means that placebo effects such as regression to the mean, expectancy effects and so on (rather than the active treatment) might account for the observed improvement.

Third, stating that gene expression changes following a treatment is not enough to establish a beneficial effect. That is because gene expression is always in a dynamic state of change. If researchers wants to show a beneficial effect of meditation of cystic fibrosis, they need to identify changes in gene expressions for genes that are relevant for cystic fibrosis symptoms in addition to measuring something objective such as lung function.

Bliss does not provide any reference to the study itself, but presumably she is talking about this study. Let us note that the study does not support anything that Bliss has claimed about cystic fibrosis. Rather, the study claims to have demonstrated that relaxation reduces stress symptoms for some medical conditions such as anxiety and insomnia. These researchers did fulfill the third point about when they measured the alteration in gene expression for genes that matter for stress such as energy metabolism, insulin secretion as well as pathways for inflammation and stress. However, their research had nothing to do with cystic fibrosis whatsoever.

It is also not clear that the researchers corrected for multiple comparisons. The bigger problem is that they compared gene expression with the baseline level of the novices before they started receiving their meditation training. This means that the study completely lacked a placebo control group, which means that Bliss in completely unjustified in stating that this research shows that meditation is beneficial.

Science has limitations, but quackery needs to yield to evidence

It is certainly true that science has limitations and there are many things we do not yet know. There are many unsolved puzzles that modern and future scientists using new and exiting tools can help unravel. However, just because science has limitations does not automatically mean that anti-medical quackery is reasonable. Rather, it needs to provide evidence for efficacy if it wants to fill the gaps in our knowledge that real science has not sealed yet.

I think the Irish comedian Dara Ó Briain said it best when he stated that “Science knows it doesn’t know everything; otherwise, it’d stop. But just because science doesn’t know everything doesn’t mean you can fill in the gaps with whatever fairy tale most appeals to you.” I could not have said it better myself. If there was any evidence for an “alternative” treatment, then that would no longer need to be called “alternative”. It would be embraced by the medical community and simply called medicine.

When Bliss uses the “modern medicine doesn’t have all the answers” gambit, she fails to understand these central points.

Conclusion

Stasia Bliss is a dangerous person as she recommends treatments such as severe vomiting for up to 8 hours that could be lethal for individuals with strongly compromised lung function. She also commits to ethically dubious victim-blaming on at least two separate occasions (cystic fibrosis supposedly being caused by acidic foods or by negative emotions).

In her three posts, Bliss chronically misunderstood the cause, progression and medical treatments of cystic fibrosis, the field of epigenetics and the concept of heritability. She promoted a wide range of different kinds of pseudoscience such as pH quackery, germ theory denialism and alternative medicine while at the same time asserting that two scientific studies support her claims when they, in fact, do not.

References and further reading

Reviews on cystic fibrosis (cause, progression and treatment):

Davies, Jane C, Alton, Eric W F W, & Bush, Andrew. (2007). Cystic fibrosis. BMJ, 335(7632), 1255-1259.

O’Sullivan, Brian P., & Freedman, Steven D. (2009). Cystic fibrosis. The Lancet, 373(9678), 1891-1904.

Ratjen, Felix, & Döring, Gerd. (2003). Cystic fibrosis. The Lancet, 361(9358), 681-689.

Rowe, Steven M., Miller, Stacey, & Sorscher, Eric J. (2005). Cystic Fibrosis. New England Journal of Medicine, 352(19), 1992-2001.

Quack Miranda warning: The Skeptic’s Dictionary: Quack Miranda warning.

Anecdotal evidence: The Skeptic’s Dictionary: Anecdotal (testimonial) evidence.

The Galileo Gambit: Galileo Syndrome and the Principle of Exclusion.

Heritability: The Widespread Abuse of Heritability.

pH quackery: pH Quackery and Human Acid-Base Homeostasis.

Epigenetics: Epigenetics: It doesn’t mean what quacks think it means.