|I‘m now feeling sufficiently better to begin my search for causes and cures of ulcerative colitis. I’m proposing to use an approach called Self-Experimentation, explained in Seth Roberts’ book and articles. In two previous articles, I have summarized:
- the self-experimentation process (decide on objective; collect base-line data; imagine hypotheses/theories; test hypotheses through immediate feedback collection and improvisation; make it part of your daily practice of living)
- my initial self-experimentation hypotheses about causes of this particular disease (‘modern’ malnutrition i.e. lack of diversity and micronutrients in what we ingest; exposure to environmental toxins; musculo-skeletal distress)
I don’t expect readers to be as interested as I am in finding causes and cures for this disease. But what I’m doing here is constructing a model. If the model works for this disease, for me, there is no reason it can’t work for all auto-immune, environmental and other complex diseases, for any individual, if they follow the same process and tailor it to their personal situation. This is all part of my learning and discovery about how to deal with complex problems, starting with Let-Self-Change, except in this case my interest happens to be personal. I’m using this public diary to chronicle my self-experimentation because I’m learning as I go, and because my readers have already provided over 100 ideas and some fascinating hypotheses to consider — and in a lot of cases it’s clearly personal for them too.
It is hard to avoid the impression that
- there is a massive epidemic of complex diseases in our society, almost none of which have an identified cause or cure,
- the health system and medical profession are systemically incompetent to deal with this epidemic (they deal with standardized treatment of symptoms, not causes, not individualized patient-managed treatment, not cures, not mitigating disease catalysts, not prevention), and
- corporate Big Pharma is disinterested in these diseases, because they make their money on standardized treatments (not cures, not prevention) for diseases that have ‘simple’ bacterial or viral or ‘genetic’ causes (not complex environmental or parasitic or dietary or holistic causes) suffered by wealthy patients — in short, their ‘business’ is mass-producing high-margin antibiotic toxins, not preventing, understanding or curing diseases.
I don’t expect everyone to ‘buy’ the idea of self-experimentation (though I would encourage skeptics to read Seth Roberts’ articles before dismissing it). Learned helplessness runs deep in our society, and those who suffer from it will never accept the legitimacy of self-experimentation. Acknowledging the utter inadequacy of the well-entrenched and massively expensive health system/medical profession/Big Pharma oligopoly to address the most serious and fastest-growing illnesses in our society is terrifying, and some will dismiss this acknowledgement as an emotional political or spiritual position rather than a consummately rational one.
But for those who see the legitimacy (and urgency) of self-experimentation as a means to improve our personal and collective wellness, this article offers the first elements of a model that might improve its effectiveness.
I think this model needs to be based on a series of principles, that guide and inform the imagining of hypotheses about wellness, the determination of appropriate tests and self-experiments of those hypotheses, and the interpretation of the results of those tests and self-experiments. Here is my first cut at a set of such principles.
- Learn from Nature: Study, understand and emulate natural processes of balancing and dealing with problems and imbalances. Ecologies are inherently complex systems, and nature has been dealing with them effectively since life first emerged on the planet. Discover why, and how.
- Learn to Self-Adapt: Study and draw on the evolved processes used by indigenous cultures that self-adapt to challenges rather than attempting to try to change or control the environments that give rise to these challenges. Your objective should be to help your body stay well, fend off illness, and heal itself, not to impose cures and treatments on it, as if it were something apart from ‘you’. This is all about ‘being the change’ you want to see.
- Listen to and Pay Attention to Your Body: It’s a complex system too, and for three million years, consciously, subconsciously, intuitively, it’s been telling us what it needs, what makes it healthy and unhealthy. Heed its messages, and trust your instincts.
- Love and Respect Self and Others: There is nothing to be gained from being angry and dissatisfied with ourselves and others about things that we have no control over. This low self-esteem, unwillingness to understand and forgive others, is enormously destructive. These negative emotions are a consequence of the disconnection that our civilized society has brought on, and we must learn to recognize and cope with them. And we must overcome, too, our learned helplessness, our irrational cult of leadership and our unwarranted bias for the views of self-styled or elected ‘experts’, officers, directors, presidents, managers and specialists over those of everyone else. No one, and no one’s judgement, is ‘better’ than anyone else’s.
- Understand and Appreciate Uncertainty, Unpredictability, and Uncontrollability: Embracing complexity requires that we be able to cope with incomplete knowledge, incomplete assurance, constant changes and surprises, and a world where no one, not even the rich and powerful, is in control. We have been brought up to loathe these things, and we will drive ourselves crazy if we don’t learn to let go, to accept how things are instead of always trying to change them.
- Make Time to Heal and to Understand: We are all so busy that we do not have time to learn, to discover, to do or to understand anything properly. We have to learn to make time for things that are really important. That means stopping doing many of the things we are doing now.
- Network and Collaborate: Self-experimentation is personal, but not solitary or isolated. We can and must share our stories, learnings, and experiences, and work together to discover and understand.
- Do Good Research: This is a learnable skill, one not properly taught in any formal education program that I know of. It is also an art, that requires improvisation and other capacities. It’s essential to learn to do it well if self-experimentation is to be effective.
- Focus on Prevention: Those who embrace complexity appreciate that it is easier to prevent a problem from arising in the first place than to deal with it when it does. That requires foresight, and also a very different mindset from that of medical professionals.
- Take Personal Responsibility: Self-experimentation requires that you take back responsibility for your wellness from experts and professionals. That means challenging everything, not blaming others, investing the time and energy in the work of self-experimentation, and giving yourself credit for the successes that come with competently managing your own health.
- Keep Track: Self-experimentation requires the selection, maintaining and learning from vast amounts of data. Meticulous and detailed record-keeping is essential.
- Seek Balance: In choosing hypotheses and self-experiments, don’t look for ‘silver bullet’ single answers, and be wary of those who over-promise ‘cures’ or treatments that work for everyone, or who attack any other approach than theirs, even when that approach seems moderate, natural and reasonable. Likewise, be very cautious about self-experiments that are extreme (e.g. extended fasting, anything that causes pain, anything that seems harsh, unnatural, frightening, excessive or unreasonable). If it seems bizarre, it probably is.
So here is what I’m doing as Phase One of my self-experimentation process, in search of the causes and hence the prevention and cure of ulcerative colitis. This Phase is modest — low-hanging fruit experiments with low risk and (based on other patients’ experience and some medical research) high likelihood of effectiveness. This Phase is also unlikely to significantly test my three initial hypotheses. That’s the role of the later Phases, which will include some more novel and even controversial (but still rational and defensible) self-experiments. Because we’re talking about complex systems (i.e. the human body), proof of a cause or cure will be impossible — there are too many variables and unknowns. But I expect there will be compelling evidence of the probability that the causes, cures, treatments and preventatives that appear to apply in my case (and the cases of other self-experimenters) have broad applicability for our whole society. I think that’s enough.
Here’s Phase One:
- Increase Omega-3 Fatty Acid/EPA/DHA/ALA Intake: There is considerable evidence that the tissue damage and inflammation of colitis is precipitated by a certain kind of leukotriene and prostaglandin, and that Omega-3 acids — EPA, DHA and ALA — metabolically reduce the body’s production of these leukotrienes and prostaglandins. So I’ll be experimenting with fish oil, flax oil, and Omega-3 supplements. I’m also looking at an Omega-6 fatty acid called GLA that seems to have a similar mitigating effect.
- Broaden, Diversify and ‘Naturalize’ Diet: When we eat a narrow range of foods, many of them heavily processed with antibiotic and toxic chemicals, our body is starved of many of the micronutrients it needs, and also deprived of the ability to ‘learn’ to deal with the millions of types of bacteria and other substances that occur naturally in unprocessed foods. So when it does face these bacteria, it’s prone to make errors of ‘inexperience’ and overreact or confuse which bacteria to neutralize. A diet consisting of many more different types of foods, ‘raw’ rather than processed, should therefore ‘re-educate’ the complex digestive system how to properly digest foods, and give it everything it needs to do its job. So I’ll be eating more complex carbs, and a much more varied menu of foods, and avoiding meats from grain-fed animals, all processed foods, and specifically foods containing saturated and trans fats. At the same time, I’m not going to give up on high-fibre foods (in moderation) or fried (in vegetable oil) foods (in moderation) or low-fat dairy products (in moderation), even though a lot of experts say these foods can aggravate colitis. Why not? Because eating fruit with the peel on, eating nuts, raw veggies and berries is natural — and my hypothesis is that eating these things in moderation should not be harmful. But we’ll see.
- Maintain Minimal Intake of Broad Range of Vitamins and Minerals: When you get a disease of the digestive system, it inevitably inhibits your body’s ability to process foods properly and get the maximum nutritional value from what you eat. Vitamin and mineral supplements are not as good as getting these nutrients from foods, but they’re better than not getting them at all. Better safe than sorry.
- Increase Vitamin B12 and Folic Acid Intake Specifically: Absorption of these essential nutrients can be particularly compromised when digestive function is impaired. Crohn’s patients need to be especially concerned with this (since these nutrients are processed by the small intestine damaged by Crohn’s rather than the large intestine damaged by colitis), but why take a chance? In addition, B12 and folic acid strengthen red blood cell production and offset the anemia that often accompanies colitis because of the blood loss from the disease’s inflammation and intestinal ulcers.
- Increase Pro-Biotics Intake: The jury’s out on whether probiotics (mixtures of massive numbers of varied bacteria) can improve the natural ‘flora’ of the lower digestive system and hence rectify the damage caused by ‘modern’ malnutrition and digestive disease. Some say they’re the wrong bacteria. Others say they can’t possibly survive the harsh journey through the upper digestive tract to be able to do their jobs in the lower tract anyway. So I’m going to self-experiment and decide for myself.
- Resume Exercise and Optimize Aerobic and Anaerobic Fitness: My body told me, just a little too late, to get into shape to fend off and mitigate this disease. I was in terrific shape when this disease hit, and I suspect that’s helped my recovery immeasurably. I’m going to keep at it, without overdoing it.
- Begin Emotional Relaxation and Resilience Program: Meditation, yoga, and a do-it-yourself course in self-restraint, stress awareness, avoidance and mitigation, and Let-Self-Change, are part of my self-experimentation program. Stress is the trigger, not the cause, but to find the cause you need to get the catalyst under control first.
- Begin Musculo-Skeletal Relaxation and Resilience Program: As I’ve discussed, I intuitively believe that my poor posture, poor muscle health, and the vast build-up of tension in my neck and shoulders was a contributor to my vulnerability to this disease. I’m looking holistically at a set of preventatives and treatments for this disease, and therefore my musculo-skeletal resilience needs to be part of my self-experimentation.
- Reduce Exposure to Antibiotics and Other Toxins: The more I learn about antibiotics, pesticides, herbicides, toxic household ‘cleaners’, and the other poisonous crap that our water, foods, soil and air are deliberately or negligently saturated with, the more these substances scare me. Most creatures know better than to shit where they live. What’s wrong with us? I recognize that these poisons are everywhere and unavoidable, but I’m determined to expose myself to them as little as possible. That means reading food ingredients, avoiding unnecessary medicines, not using herbicides, pesticides and toxic cleaners, filtering the water, and taking other steps to poison myself a little less.
- Investigate Infliximab: There is some evidence that this injectable antibody could actually prevent the hyperactivity of the immune system (specifically the adrenal cortex) that precipitates Crohn’s attacks. I’m skeptical, from what I’ve read so far, that it does what it is alleged to do, and it may not work for colitis anyway, but I’m convinced that preventing the immune hyperactivity reaction directly is more ‘natural’ than suppressing the immune system entirely and reducing the hyperactivity that way, so I want to learn a lot more about this drug.
So there you have it — the principles that will guide my self-experimentation program, and the first phase of the program. I won’t bore you with the details of how I’m going to ‘separately’ test each of the ten elements of Phase One in such a way that I know what’s working and what isn’t — I’ll be describing this in more detail in Seth Roberts’ self-experimentation forum, and I’ll provide a link when I’ve done so. Seth is also considering me as a case study for his upcoming book on self-experimentation, and I’ll keep youapprised of details on that as well.
In the meantime, your comments are welcome.