Monday, May 21, 2018
Kombucha Lady, Pseudoscience, and What's Missing (caution: seriously snarky & snarkily serious)
Those are the people who have no education, training, license, degree, board certification, or experience in the practice of the medical specialty of oncology, but possess the unabashed confidence that they know what will cure and/or prevent cancer better than anyone. Especially anyone who promotes the conspiratorial discipline of western medicine that is surely out to irradiate, poison, and depilate us all so they can laugh all the way to the bank. (Please, I’m being sarcastic here).
At the risk of sounding like JP Sears I need to release my frustration and exasperation. (I think JP Sears is hysterical and I wish he would do a video on curing cancer, it would be hilarious. And it would benefit me immensely- he could be the one offending people, allowing me a safe harbor for avoidance)
Since I rarely avoid confrontation anymore, I frequently set up a table or booth at health fairs and public events where I can promote my services and interact with people to discuss cancer. My cancer literacy booth contains information about why it’s important to think about cancer even if you’ve never had it, and has a list of common myths vs facts, basic information, and resources.
In these events I find out what people are thinking, seeing, experiencing, and perceiving about cancer. It helps me direct my information more effectively in meeting their needs. I often deliver educational presentations to dispel myths and misinformation about cancer. While I soft sell my book and my services as a survivorship health coach, speaker, educator and writer, one thing I do not do is hard sell products or services. Especially not products.
I frequently get cold calls from hucksters hard selling the latest in nutritional products or supplements who think I’d be willing to spread their crap to my own clients. They find out quickly how mistaken they were in contacting me.
When I set up my booth, it’s always hard at first to get people to come to my table- they see something about cancer and they avoid eye contact, the ambivalence is palpable from across the room. There’s some fear, but they are curious- it’s that morbid curiosity, yet they tend to stay away unless I can make eye contact with them and draw them in.
And there is always one person, who thinks they know what to do about cancer better than anyone else. They’ve never had cancer themselves, of course, but they know. And they come right up, without hesitation, complete with chest-puffing bully bravado and steam coming out of every orifice.
As it was with Kombucha lady.
She ambushed me before I even saw her come up to the table.
“Do you use Kombucha to cure cancer?” were her first words to me, before I could even greet her.
Her question took me by surprise at first- maybe half a second- and then of course I knew what was coming. I said, “No, I don’t.”
She shot back, “DO you know what Kombucha is?” As if I surely didn’t know.
In a covertly snarky but fake validating tone I said, “Yes I do know.”
First, there is nothing in my booth that says I cure cancer. I am not a doctor and I’m not even providing nursing care- what I do is called education. I even have a disclaimer that says all of that.
She gave me the side-eye like she didn’t believe a word I was saying. “Kombucha is better than any of that chemotherapy or radiation or those other cures that just poison you. People who drink Kombucha are completely cured- but the medical profession doesn’t want people to know that. There’s been research too. It’s all been hidden and it’s done in Russia. There’s this one place in Russia where everybody drinks Kombucha and nobody has cancer. You should look it up.”
She almost stopped but before I could reply, she continued, ”I know this goes against your western medicine point of view, but it’s true. You need to look it up. And I know, because I’m a PhD candidate.”
I don’t think she saw my business card that says I have a PhD. I know she didn’t read anything in my display. I didn’t say anything to her that would convince her that my point of view was entirely driven by Western medicine. I scrambled for something to say that would either make her shut up and go away, or disappear. I didn’t have any water to throw on her.
“Well that’s great, with a Ph.D. you will be able to research that and when you have the evidence you can shout it from the rooftops.”
“Oh, it’s already there. They just don’t want you to know.” And she whirled out of there as fast as she arrived.
So...I hope she enjoys her doctoral program at Trump University.
No Ph.D. program can possibly fix stupidity or social ineptitude.
Debriefing for the masses
1.If she were truly a legitimate Ph.D candidate, she would:
• have an understanding of the scientific method. I can only imagine her professors hazing her when it came time to take her comprehensive exams.
• know better than to make assumptions,
• realize that we learn more through observation and listening than we do by asserting our opinion loudly and forcefully with a complete absence of self-awareness,
• have humility instead of arrogance- the more you learn, the less you know. I would have to say if you take nothing else away from a doctoral program, this is it.
2. I didn’t even get a chance to ask her if they did randomized controlled trials. Not that she would have understood what that means. You can do any kind of research you want, but you can’t try to pass it off as more than it actually is. You have to state the limitations. If there was no control group, then you must state that. If subjects are assigned other than randomly to the study groups, or if it is subject to bias or being contaminated by other variables in any way, you must also state that.
3. I did in fact look it up, for my own amusement. I was curious as to where she got this information and what she was reading that made her such an expert.(I didn’t even get a chance to ask her if she’s ever had cancer or anyone close to her has.)
As it turns out, most of the studies done on Kombucha that have been documented in peer reviewed journals are from 10- 20 years ago. Most of them were on green tea, not specifically on Kombucha, and the tea demonstrated certain activities in rats, mice, or in test tubes, but not in humans. It’s quite a stretch to take findings from animal or in vitro (test tube) studies and assume those findings will be duplicated in humans.
There have been more recent studies of the effects of Kombucha tea, but there has been no body of evidence based on repeated studies and similar or consistent findings. Anyone who cites “a study” and tries to generalize from that study’s findings also does not understand science. I’m not saying that they never will find evidence of benefits in the future, but the necessary body of research to draw conclusions has not been done.
The antimicrobial and antiproliferative findings of the tea were in test tubes, not in live subjects, and in Japan, where their culture, diet and just about everything, is different from the U.S.-you can’t generalize across cultures when there are so many confounding variables.
I could not find any human clinical trials of kombucha tea. And also, it’s a fungus- if you are suffering from a cancer that weakens your immune system- such as some blood cancers like leukemia- you might be hurting yourself more than helping by drinking that swill.
4. You can fix ignorant, but, as I said above, you can’t fix stupid, or social ineptitude.
So, like JP Sears would likely say, in his wisdom, yes, you have the right to be offended and to remain ignorant. You have a right to your own beliefs, but remember they are beliefs, not facts until shown to be real with scientific evidence. Furthermore, don’t even try to pass your beliefs off as facts and don’t spew and proselytize them as fact. By sharing your beliefs as facts, that’s deception, and with cancer, it could get someone killed.
5. Videos, documentaries, and advertisements that sell products making claims to cure or prevent cancer that fan the flames of ignorance, paranoia, and conspiracy theories is deception. When you make assumptions that you know better than years of scientific research that has millions of cases of demonstrated benefits and successes, you are acting without compassion, and certainly without empathy, unless you ask someone who has had cancer and been treated for it and find out what their experience and outcome has been after 5, 10, or 20 years.
6. People need to understand the difference between what they know and what they believe.
Most misconceptions behind the misinformation about cancer stem from a few misunderstandings.
We can fix ignorance. We can get people to think more critically and raise their level of understanding and awareness of the world around them. They need to be willing to do some work. They also need to be willing to be challenged in some of their ingrained beliefs.
The most common misconceptions about cancer that I hear from the lay public are:
1. Cancer is one disease that behaves predictably and each person’s cancer is like every other person’s cancer, so there must be one cure. There is no thought given to the differences between individual people, their environment, experiences, or their immune systems.
This is a holdover from the old, old days when we thought cancer was just one disease and we had much less knowledge and understanding about cancer. The lay public has not caught up in their knowledge, so we need to improve cancer literacy and bring it up to date.
What we know is that cancer is a disease of the cells’ genetic material that results in uncontrolled growth of those cells. It manifests in hundreds of different ways and cannot be completely predicted or generalized from one case to the next. It can arise in different organs or parts of the body and be triggered by different chemical signals, proteins, and alterations in genes that cause cells to behave differently than normal.
2. Mistaking “genetic” for “hereditary” and thinking that when we are talking about genetic mutations we mean hereditary mutations that are passed along from one generation to the next. What we know now is that most cancers are caused by somatic mutations in a person’s body- in your DNA- that affects the way your cells in your body function-not anyone else’s- that have nothing to do with the germline passed down through families.
3. They think cancer is caused by something definable outside of our bodies, and that it’s a matter of simply avoiding that thing and you can avoid cancer.
4. They think we can cure cancer with one thing- we just haven’t discovered that thing yet, and when we do, it will be the end for cancer. (See conspiracy theories below)
5. They think that cancer can be cured now. It depends on how you look at it. Since we can eradicate detectable cancer cells in the body, but there could always be a stray cell or more somewhere, we don’t know that for sure even with our most advanced technology, PET scans or blood tests. If the cancer is treated and never comes back, we tend to think that’s a cure. But we use the term “remission” because we never know if it will come charging back one day. We also know that if the person doesn’t have a trace of the cancer for many years, likely they are in permanent remission (or cure, if you wish to call it that). But you can never assume completely. And that is why people who have had cancer always have anxiety about it coming back.
6. This is the thing that peeves me the most: They want nutrition to be the holy grail of health. Because they can control what they put in their mouths, they get this false sense of security and arrogance that they can keep from developing cancer. Some people are like that with exercise. They think that stringent exercise programs will prevent it. They will not.
What we do know, through bodies of evidence, is that the healthier and fitter you are, the less likely you are to die from most chronic diseases. And if you do have cancer, and need treatment, the healthier and fitter you are, the better the outcome is likely to be. Less loss of muscle mass, less fatigue, fewer side effects from medication and treatment, and faster recovery after treatment.
7. Some people think cancer is contagious. It is not. They think death is contagious too, even when the word is spoken. that’s why they are so scared of having the conversations about cancer and advance directives and end of life planning and all of the other things we could do to make our lives so much more comfortable, meaningful, and enjoyable all the way to the end.
8. Medicine has the answers, so if we do get sick someday, we can rely on medicine to cure us, like antibiotics for a cold (being sarcastic, again: What we know is that antibiotics will not help a cold caused by a virus. Antibiotics work to kill bacterial infections.)
The problem with this mentality- thinking medicine will cure it- is that it ignores the responsibility of the person for staying healthy. Too many people live unhealthy lifestyles and have bad habits that lead to chronic disease such as diabetes, cardiovascular disease, obesity and metabolic syndrome, and chronic lung disease. They think medicine will save them. And they think the same way about cancer medicine, but when they are diagnosed with a very aggressive cancer or a very advanced cancer, they expect medicine to save them, when it often cannot.
Yes, we do a good job of advancing medicine and medical interventions, but not on building supportive social skills and services. We follow the money, not the quality of life. You might be able to get the medicine, but you can’t get your life back. So you need to take responsibility for that too. You can’t act like a victim when medical interventions don’t do what you wish they would.
I think we could combat this victim mentality by giving people the skills, tools and knowledge to take better care of themselves, of course that would require they were self-disciplined and motivated enough to use it. It's not that simple of course, but if people would take more responsibility for their own health it would help.
I’m not saying there is no greed or deception in mainstream medicine, quite the contrary. I think the healthcare industry is polluted through and through with greed in this world of mergers and administrative growth on steroids. People with fewer resources, who don’t have access to healthcare, education, income, and opportunities are at a great disadvantage and we should be fixing those inequalities now. The current status of the healthcare industry in our country is shameful and self-serving.
To the people who say there is a conspiracy around cancer- that “they” already have the cure but “they” won’t tell us because then the pharmaceutical and healthcare industry would stop making money- how is making money on drugs any different than making money on the untested supplements and natural products you are pushing with claims of better health?
While the healthcare industry is far from innocent when it comes to greed, and I think think they are even more subject to political influence than they were in the past- there is no difference in my mind between medical industry greed and the greed of the multi-billion dollar natural medicine/food/supplement industry.
The only difference is that in mainstream western medicine, the science is better established. It adheres more closely to the scientific method, does randomized trials, has far larger numbers of subjects, and has more regulatory oversight and safeguards than the supplement industry. Like anything else, this could change. But show me the bodies of evidence so I know you’re not just selling me what you believe.
I think educating the public is one of the best solutions. We need to get people to understand the importance of having the tools, skills, and knowledge to be able to survive encounters with the healthcare industry.
I wrote a book with lots of solutions in it, for people at all levels of involvement in healthcare. The prevent-prepare-prehab section in the appendix is a rough description of what I'd like to pursue- building cancer literacy among the public. People tend to push the idea of cancer aside, which is understandable. It’s scary, but it’s even scarier when you have no idea what’s ahead of you.
Having a little knowledge and preparation beforehand is not that difficult, and could make a big difference especially for those who have no family members or close social connections who are healthcare professionals. Having someone to advocate for and/or with you when you confront a serious illness is essential. The industry is too complex to go it alone, even if you are a healthcare professional.
The moral of the story is, drink all the Kombucha you want, I harbor no grievance against you. Bathe in it, mainline it, dry it and snort it, just don't tell me to use it to cure cancer.