Augusto Odone is an Italian economist best known for his son, Lorenzo, after which Odone named the oil that he helped develop to treat his son’s neurological disease. Lorenzo’s oil was the subject of a 1992 movie starring Nick Nolte and Susan Sarandon, and of course what most people think they know about the story they learned from the Hollywood version.
This past week Augusto Odone died at the age of 80, prompting another round of media reporting about Lorenzo’s oil.
Probably because of the Hollywood movie, this story more than any other is an iconic example of the disconnect between the simple narratives the media love to tell (and we love to tell ourselves) and the more complex reality.
The basic facts of the story are not in dispute. Lorenzo Odone, son of Augusto and his wife, had a neurological disease known as X-linked adrenoleukodystrophy (X-ALD). This is a devastating genetic disease in males, with two basic forms. Childhood onset tends to progress rapidly and typically death occurs by age 10, although lifespan can be increased if an early bone marrow transplant is given. In adult onset, symptoms may not appear until adulthood, and then tends to progress more slowly, over decades. Some boys with the X-ALD gene do not develop clinical findings. Women are carriers, with partial protection from their second X chromosome. About half of female carriers become symptomatic, with the slower adult form of the disease.
Harriet has written some excellent recent posts about how to talk to CAM (complementary and alternative medicine) proponents, and answers to common CAM fallacies. I have written about this myself numerous times – we deal with the same logically-challenged claims so often that it’s useful to publish standard responses.
In fact, I often wonder about the seeming uniformity of poor arguments put forward by advocates of CAM and critics of SBM. Do their arguments represent common problems of thought, pathways of mental least resistance, or are we seeing the repetition of arguments resonating in the echochamber of a subculture? I suspect it’s all of those things, which all feed into a particular world-view.
Actually CAM proponents seem to fall into one of several common world views, or flavors, as I like to call them, ranging across the spectrum from pseudoscience to anti-science. There is substantial overlap, however, with common anti-scientific themes.
I recently had an exchange with an SBM reader who was demanding that a particular post be taken down, because “every single fact in the article is wrong.” I responded as I always do – please point out the factual errors, with proper references, and I will make sure that all appropriate corrections are made. This did not satisfy the e-mailer who insisted that the article was 100% false and libelous.
I recently had a clogged drain requiring the services of a plumber. While discussing the details of the job, he took out brochures and a “fact sheet” prepared by his company explaining that my city tap water was going to kill me. Fortunately, they could provide a solution – a home-wide water filtration system.
The plumber seemed naively sincere, and genuinely fearful of the cancer-causing contaminants found in drinking water. He invited me to read through the material he provided while he unclogged by drain. I did better than that. I took the time to do a quick search for some more objective information on the topic.
The focus of this particular scaremongering is the additive monochloramine, which is added to city water. According to the Environmental Protection Agency (EPA):
Chloramines are disinfectants used to treat drinking water. Chloramines are most commonly formed when ammonia is added to chlorine to treat drinking water. The typical purpose of chloramines is to provide longer-lasting water treatment as the water moves through pipes to consumers. This type of disinfection is known as secondary disinfection. Chloramines have been used by water utilities for almost 90 years, and their use is closely regulated. More than one in five Americans uses drinking water treated with chloramines. Water that contains chloramines and meets EPA regulatory standards is safe to use for drinking, cooking, bathing and other household uses.
A new study published in The Lancet provides the most definitive evidence to date that chronic cerebrospinal venous insufficiency (CCSVI), a hypothetical syndrome of narrowed veins draining the brain that some believe is the true cause of multiple sclerosis (MS), is not associated with MS.
In a science-based world, this study would be yet one more nail in the coffin of this failed hypothesis. But that’s not the world we live in.
CCSVI was first proposed in 2009 by Italian vascular surgeon, Dr. Paolo Zamboni – that multiple sclerosis (MS) is caused by chronic blockage of the veins that drain the brain. The current scientific consensus is that MS is a chronic autoimmune disease, and the pathology is caused by primary inflammation. Dr. Zamboni believes that the venous anomalies he has discovered are the primary cause and the inflammation is secondary. (more…)
It is unfortunately that individual dramatic cases are often required to garner public and regulatory attention toward a clear problem. The Australian press is reporting:
Melbourne paediatrician Chris Pappas cared for a four-month-old baby last year after one of her vertebrae was fractured during a chiropractic treatment for torticollis – an abnormal neck position that is usually harmless. He said the infant was lucky to make a full recovery.
Medicine is a game of risk vs benefit – everything we do, or don’t do, should be evaluated on the potential benefit vs the potential risk, using the best available evidence and scientific rationale. This case is important, not because it is a case of harm, which can happen with any intervention, but because it highlights the risk vs benefit question. Are there any indications for chiropractic care of children, for neck manipulation at any age, and what are the risks?
For an overview of chiropractic see my prior summaries here and here. Overall the evidence suggests some benefit for manipulative therapy for acute uncomplicated lower back strain, but probably no better than physical therapy or even minimal intervention. The risks of chiropractic are not sufficiently studied, and other indications have not been established by adequate evidence. (more…)
Savvy consumers have learned over the years that the primary goal of marketing is to create demand for a product or service. This has risen to the point of inventing problems that do not really exist just to sell a product that addresses the fake problem. Who knew that my social status could be destroyed by spotty glassware.
Better yet, if you can make people worry about a nonexistent problem, something that they were not previously aware of and don’t understand, they might buy your solution just to relieve their worry.
This type of “artificial demand” marketing can be very insidious when it occurs with medical products and services. The pharmaceutical industry has been accused of generating artificial demand for some of their drugs. For example, osteopenia is a relative decrease in bone density, but not enough to qualify for osteoporosis. Osteopenia is not really a disease, or even necessarily a mild version of osteoporosis, although it is a risk factor. Merck, however, was happy to broaden the market for its drug for osteoporosis and argue that patients with osteopenia should be treated also, even though the evidence really did not support this.
Sometimes the accusations are flat-out wrong. GSK has been accused of inventing restless leg syndrome (RLS) to sell a failed Parkinson’s drug. In fact the drugs used for RLS are successful Parkinson’s drugs. Further, I found references to RLS in neurology texts going back over 50 years, and there were even older references although not using the same name.
As the resident neurologist on SBM, my ears always prick up when I come across a new neurology-based scam, and my colleagues often send such items my way. In addition the word “quantum” has become a standard marketing term of alt. med quackery. So how could I resist taking a bite out of “quantum neurology”?
One might think (if one were a completely naïve rube) that those claiming to practice quantum neurology have, through diligent research, discovered how certain quantum principles apply to nervous system function and disease, leading to new treatment modalities. On the other hand, a more savvy consumer of such health claims (such as regular readers of SBM) would likely suspect that quantum neurology will turn out to be the same-old mix of nonsense and snake oil in a shiny new package.
Let’s have a look.
It’s likely you know someone who has bought into the notion that nutrition is everything, the source of all health and the cause of all illness. Nutrition is very important, to be sure, but it is only one of many possible causes of disease, and if you live in a Western industrialized nation you probably have adequate nutrition. The notion, however, that food can heal is powerfully alluring, and it makes great headlines. The result is that people who read the headlines for the latest food to avoid, or the latest ingredient that will make them live longer or stave off disease, seem to have an association for everything. Eating around them is to be constantly told that food X is good for you and will prevent Y, or that some other food should be avoided because it causes Z.
Red peppers will help prevent cancer and help you lose weight. Garlic will help prevent heart disease and aids in iron metabolism. Cayenne pepper prevents strokes. Peaches prevent heart disease and cancer. In fact- think of any food at random and type “random food health benefits” into Google and chances are you will be rewarded with a list of the amazing health benefits of whatever food you wish.
My usual response when offered such advice is – you know, food is healthy for you. I recommend you eat food every day. Food is full of nutrition, essential vitamins and minerals, and will give you energy. If you don’t eat food, your health with dramatically suffer. But don’t eat too much food – that’s not healthful.
One of the tactics of snake-oil salesmen is to fearmonger about mainstream medical practices so as to scare potential customers into their clutches. A common target of such fearmongering is vaccines. Vaccine are an easy target – they are generally required by the government to some degree, and involve sticking small children with needles and injecting them with a cocktail that parents often don’t understand in detail.
While vaccines are of clear benefit, no one argues that they are risk free. There are rare serious complications. For this reason the US established the NVIC – National Vaccine Injury Compensation program. This is funded by a small tax on each vaccine, and is designed to compensate families of children who have a possible reaction to vaccines, bypassing the slow and costly regular court system. The NVIC works well.
The goal of the NVIC is not to determine scientifically if there is a link between a particular vaccine and a particular side effect. That is determined by the scientific community. Rather, the NVIC’s charge is to determine if “compensation is appropriate” in specific cases. They also give the benefit of the doubt to the families.
Science-based medicine is partly an exercise in detailed navel gazing – we are examining the use of science in the practice of medicine. As we use scientific evidence to determine which treatments work, we also have to examine the relationship between science and practice, and the strengths and weaknesses of the current methods for funding, conducting, reviewing, publishing, and implementing scientific research – a meta-scientific examination.
There have been several recent publications that do just that – look at the clinical literature to see how it is working and how it relates to practice.
Dr. Vinay Prasad led a team of researchers through the pages of the New England Journal of Medicine hunting for medical reversals – studies that show that current medical practice is ineffective. Their results were published recently in the Mayo Clinic Proceedings:
Dr. Prasad’s major conclusion concerns the 363 articles that test current medical practice — things doctors are doing today. His group determined that 146 (40.2%) found these practices to be ineffective, or medical reversals. Another 138 (38%) reaffirmed the value of current practice, and 79 (21.8%) were inconclusive — unable to render a firm verdict regarding the practice.
Prasad also found that 27% of published studies looked at existing treatments while 73% studied new treatments.