Noceboed.

29 Oct Noceboed.

On some level, at its heart, our new film “All the Rage” is largely about ideas related to belief. Modern science uses the word placebo to describe the effect of one’s belief on the efficacy of a treatment. When drugs, or procedures, are tested they are only deemed effective if they work better than a sham drug or procedure. The problem with these tests is that for the most part, taking any pill that we believe will have a specific effect, is more likely to have that effect. This speaks to how powerfully our expectation of a situation affects our perception of it. While the medical community is very aware of this reality in regards to testing and designing drugs, I would argue that it is a bit blind to it in regards to how this relates to patients. If the activation of belief is such a powerful force, one that is often more powerful than the drugs that are being tested, it is hard to figure out how the medical community pays so little heed to the power of the mindbody interaction in regards to treatment itself.

While people talk a lot about the placebo effect, we hear a lot less about nocebos, wherein the opposite effect of a placebo occurs. If people believe that a drug or a procedure is a sham, or not sound scientifically, it is much less likely to be effective. When we look at the combined impact of both the placebo and nocebo effect, it should make it even more clear how powerfully our belief in our ability to heal affects our health, both negatively and positively.

While we often discuss belief in regards to the individual, it is also clear that belief is also a cultural phenomenon. Individuals only have a belief system in regards to the framework of the culture that they belong to. This is not to say that everyone who lives in a catholic country is therefore a catholic, but instead that their idea of “belief itself” is framed by the broad set of cultural ideas that form the bedrock of their understanding of the world. Even if they don’t believe in the tenents of Catholicism, their understanding of the world is framed in opposition to this way of thinking. We can think of their disbelief as a form of nocebo, in which their disbelief perhaps makes them even more skeptical than they might otherwise be. This is not a value judgement statement, but instead designed to illuminate how unconscious forces shape every thought, position, and idea that we have.

These frameworks are often deeply embedded on an unconscious level, and therefore almost impossible for individuals that are part of a culture to fully recognize. Today we might look back just 50 years and find it unbelievable that America was as structurally segregated as it once was. Yet at the time, this was normal to many people. Others saw it as abnormal, and something to be fought against. However, they were all aware of the existence of issues related to race. Ideas related to race were entrenched in their every interaction with the world then, as they are now, yet the depth and complexity of these realities were invisible to the majority of people. However. it is much easier for people outside of a culture to observe these invisible shared belief systems, and time also helps to illuminate these realities.

Before Freud presented the idea of the unconscious, Western culture was much less aware of it in the same way. He provided a framework that the culture came to adopt in regards to how the mind and body interacted. His ideas spread, and in fact, for some time Freud’s ideas were in vogue, and came to be accepted by broad swaths of the medical, psychological, and mainstream communities. Then, the biomedical model of medicine began to take a powerful hold. In fact this model had such a grip on the medical community in the last half of the last century that it has been very difficult for anyone to challenge it. An article in the NY Times Magazine about a young psychologist’s 1981 experiment about belief and age makes this extremely clear.

The belief was that “the only way to get sick is through the introduction of a pathogen, and the only way to get well is to get rid of it,” she said, when we met at her office in Cambridge in December. She came to think that what people needed to heal themselves was a psychological “prime” — something that triggered the body to take curative measures all by itself.

As per the discussion above, a “psychological prime” could also be referred to as a “placebo effect”. The article goes on to explain that the young psychologist, Ellen Langer had run a test where nursing home patients were given a plant and either told to take care of it and that they would have a good deal of say about their schedule, or that someone else would be taking care of the plant and that their daily schedule was set. The ones with a sense of purpose and control over their lives were twice as likely to be alive 18 months later. She knew that she was onto something.

She designed another study in which she placed a group of older men in a living space designed to feel like the spaces they had lived in when they were younger. Further they were instructed to interact as if they were in their earlier lives. There were no mirrors to remind them of their age, and there were pictures of them as their younger selves spread throughout the space. After five days all of them had better eye sight, better cognitive and physical functioning, and observers saw them as younger than they had been five days earlier. While the results themselves were astounding, what is even more interesting to me is that Langer was so worried that she would be ridiculed for the study because it was so counter to the accepted biomedical model, that she never even published her results. This is just a small window into the intense pressure that shape our scientific and cultural understandings of the world. Looking back we can see that less than 20 years earlier Richard Alpert (Ram Dass) and Timothy Leary were dismissed from Harvard for their work with LSD and other psychedelic drugs. While it is clear that their methods, as well as their ideas, were unorthodox, the fact that they were dismissed for their work illustrates how challenges to the hierarchy and orthodoxy are often handled. As a young professor with out much job protection Langer had good reasons to fear challenging the system that she wanted to be a part of.

Scientists, doctors, religious leaders, politicians, and academics implicitly know that the broader systems that they are a part of are not often open to supporting experiments, studies, or dissertations that challenge overriding paradigms in extreme ways. Not only is it difficult to get funding for experiments or studies that focus on unconventional treatments or methodologies, but when those studies are run, the people who do come up with challenging results face massive hurdles to get their ideas accepted, or even discussed. We are made well aware of trends in pop music whenever we turn on the radio. While non-profit stations will often play obscure and experimental songs, the stations with the big wattage tend to play the same songs over and over again. These same kinds of trends exist in academia, science, and medicine. However, we are usually so within the bubble of our time, that its especially hard for those most inside these systems to accept ideas that challenge their position.

Last week the University of North Carolina released an independent report that revealed that systemic corruption in regards to student athletes had taken place. When allegations of corruption were first made by a whistleblowing university employee she was basically run out of town. Two years later the University acknowledges the corruption but explains that thousands of students were aided and abetted by an administrator and a professor in the African Studies Department. According to the chancellor, the cheating was so extreme that it was simply not imaginable. Yet, everyone knew that something was going on. When we look backwards it’s often easier to see the faults of others, than it is to see the systemic misjudgements being made all around us.

When Dr. John Sarno entered medical school, the ideas of Dr. Freud were still well within the mainstream of medical thought in regards to many illnesses. As Dr. Gabor Mate points out, Dr. William Osler from John Hopkins called rhuematoid arthritis a nervous system disorder in 1892. He didn’t have the science to back it up. He was speaking from intuition. “120 years later we now have the science to prove what he said, but we’ve totally forgotten what he said.” 20 or 30 years after Dr. Sarno left medical school, these ideas had been completely eclipsed by the biomedical model that Ellen Langer later struggled to work within. When Dr. Sarno became aware of the simple truth that the vast majority of the pain syndromes in America are intimately related to the repression of our emotions it was nearly impossible for him to convince any of his colleagues that “structural abnormalities” were not the problem. After having limited success in helping patients recover from common, back, joint, and neck pain Dr. Sarno examined the literature on standard care and found it lacking. He then looked carefully at his patients charts and found that the vast majority of them had a history of psychosomatic issues like colitis, migraines, excema, hives, etc. When he began to talk to his patients he found that there were behavioral patterns that were common. Most of his patients tended to be what he referred to as “goodists”, because they put themselves under profound pressure to be perfect and good. In other words, they unconsciously repressed their own emotional needs in order to take care of the needs of others. He postulated that the unconscious fearing that their “true” feelings might escape, caused the pain as a distraction to make sure these thoughts did not rise. He believed that the unconscious activated the autonomic nervous system in such a way as to decrease blood flow to key nerves, causing the pain. He instructed his patients to attack the process head on by thinking emotionally rather than physically, and he began to see incredible results. However, he also found that patients who could not accept this idea did not improve.

He clearly, and understandably, articulated these ideas in his book “The Mind Body Prescription” at around the same time that Ellen Langer was running her study on aging. Dr. Sarno was older and more established, but no more supported by his community. Not only was he ostracized by his peers, but the hospital also steered almost no residents to him to study under him. One of the biggest obstacles he faced was that it was difficult to envision a clean “scientific” study to track the effects of his treatment methods. Even if it was possible, he wasn’t a research scientist, but instead a physician who treated patients. Further, there wasn’t a lot of money floating around to fund a study that would not only challenge the overriding medical paradigm. Not only would his treatment method not make money, his theories discredited most of what was being done in regards to chronic pain, and many of those procedures were highly renumerative. If the medical community were big oil producers, his treatment was akin to creating an engine that ran on air.

Despite the lack of community support, he rapidly built up a robust practice by word of mouth. One of the patients that came to see him was a book agent, and she sold his first book. As he continued to focus on his work he revised his thoughts and published a second book, “Healing Back Pain”. There was almost no publicity for his work, but again, word of mouth was robust. Those who were cured by reading the book, or visiting Dr. Sarno were very passionate about spreading the word. However, they often found that people didn’t want to hear it.

This was the challenge that we faced when we began our film 10 years ago. We were often met with anger and contempt when we pitched the project to prospective patients (who we wanted to bring to Dr. Sarno so that we might follow their story), as well as prospective funders. In fact the resistance was so strong that we were forced to put the project into a holding pattern for many years. However, while we kept applying for grants, we just couldn’t find a way to make the film. About 5 years into this hiatus I was struck with overwhelming pain that chained me to my office floor for almost 2 weeks. We came to the project in the first place because my family had a history with Dr. Sarno and I had ended up in his office. When the back problems hit me again I was determined to make the film, and I screamed to my partner to “grab the camera” as I writhed on the floor. When my health began to improve I got right back to work and I found that things had changed a bit over the five years that I had been stuck. People were slowly opening up to the idea that the mind body connection had a lot to do with pain.