When I first heard that a retrovirus had been identified as a possible cause of chronic fatigue syndrome, I withheld judgment and awaited further developments. When I heard that two subsequent studies had failed to replicate the findings of the first, I assumed that the first had been a false alarm and would be disregarded. Not so.
It’s a classic case of wishful thinking outweighing good judgment. One unconfirmed report of an association between the XMRV virus and chronic fatigue syndrome (CFS) resulted in a rush to test for the virus, speculation about possible implications, and even suggestions for treatment. And the subsequent negative studies did little or nothing to reverse the trend.
XMRV is Xenotropic murine leukemia virus-related virus. In the past, there were reports that this retrovirus was associated with prostate cancer, but then other reports found no link. In 2009 a study was published in Science, “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” by Lombardi et al., reporting an association with CFS:
we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus–related virus (XMRV), in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) healthy controls. (more…)
I must admit, I never saw it coming.
At least, I never saw it coming this fast and this dramatically. After all, this is a saga that has been going on for twelve solid years now, and it’s an investigation that has been going on at least since 2004. Yes, I’m referring to that (possibly former) hero of the anti-vaccine movement, the man who is arguably the most responsible for suffering and death due to the resurgence of measles in the U.K. because of his role in frightening parents about the MMR vaccine.
I’m referring to the fall of Andrew Wakefield
The news is finally filtering out to the rest of the world.
As Steve Novella and my good buddy pointed out a few days ago (and as Steve pointed out in an interview on NPR), Dr. Steven Laureys admitted that Rom Houben, the unfortunate victim of a car crash that left him in what had been diagnosed as a persistent vegetative state, was in fact not able to communicate through the woo known as facilitated communication. This came as no surprise to anyone who has followed FC over the years. In fact, what had come as a surprise is that Dr. Laureys could have been so easily taken in by pseudoscience that had been so thoroughly debunked in the 1990s. To his credit, though, after a period of initially stubbornly defending FC, he relented and allowed objective testing, and the result was predictable. It took a few days, but the English language world is learning of the failure of FC in Houben’s case:
The sceptics said it was impossible – and it was. The story of Rom Houben of Belgium, which made headlines worldwide last November when he was shown to be “talking”, was today revealed to have been nothing of the sort.
Dr Steven Laureys, one of the doctors treating him, acknowledged that his patient could not make himself understood after all. Facilitated communication, the technique said to have made Houben’s apparent contact with the outside world possible, did not work, Laureys declared.
“We did not have all the facts before,” he said. “To me, it’s enough to say that this method doesn’t work.” Just three months ago the doctor was proclaiming that Houben had been trapped in his own body, the victim of a horrendous misdiagnosis, and only rescued from his terrible plight thanks to medical advances.
What was not reported is that skeptics were involved in the testing of Rom Houben. I recently received a statement from the Belgian Skeptics (SKEPP):
This week on Science-Based Medicine I wrote an article about a new study looking at the onset of autism symptoms, showing that most children who will later be diagnosed with autism will show clear signs of autism at 12 months of age, but not 6 months. This is an interesting study that sheds light on the natural course of autism. I also discussed the implications of this study for the claim that autism is caused by vaccines.
Unfortunately, I made a statement that is simply wrong. I wrote:
Many children are diagnosed between the age of 2 and 3, during the height of the childhood vaccine schedule.
First, this was a vague statement – not quantitative, and was sloppily written, giving a different impression from the one I intended. I make these kinds of errors from time to time – that is one of the perils of daily blogging about technical topics, and posting blogs without editorial or peer-review. Most blog readers understand this, and typically I will simply clarify my prose or correct mistakes when they are pointed out.
However, since I often write about topics that interest dedicated ideologues who seek to sow anti-science and confusion, sometimes these errors open the door for the flame warriors. That is what happened in this case.
There once was a time when all food was organic and no pesticides were used. Health problems were treated with folk wisdom and natural remedies. There was no obesity, and people got lots of exercise. And in that time gone by, the average life expectancy was … 35!
That’s right. For most of human existence, according to fossil and anthropological data, the average human life expectancy was 35 years. As recently as 1900, American average life expectancy was only 48. Today, advocates of alternative health bemoan the current state of American health, the increasing numbers of obese people, the lack of exercise, the use of medications, the medicalization of childbirth. Yet life expectancy has never been longer, currently 77.7 years in the US.
Advocates of alternative health have a romanticized and completely unrealistic notion of purported benefits of a “natural” lifestyle. Far from being a paradise, it was hell. The difference between an average lifespan of 48 and one of 77.7 can be accounted for by modern medicine and increased agricultural production brought about by industrial farming methods (including pesticides). Nothing fundamental has changed about human beings. They are still prey to the same illnesses and accidents, but now they can be effectively treated. Indeed, some diseases can be completely prevented by vaccination.
So why are advocates of alternative health complaining? They are complaining because they long for an imagined past that literally never existed. In that sense, alternative health represents a form of fundamentalism. Obviously, fundamentalism is about religion and the analogy can only go so far, but there are several important characteristics of religious fundamentalism that are shared by alternative health advocacy. These include:
Understanding the natural history of a disease is an important framework to have. It not only is critical for prognosis, but also informs us about diagnostic and screening strategies, is important to assessing interventions, and provides clues to causation.
There has been much debate about the early course of autism, specifically the earliest age at which autism may be detected. At present scientific evidence suggests that autism is dominantly genetic, and so researchers expect that there may be early signs of autism even in infancy. Traditionally, however, autism is not diagnosed until age 2-3, when parents bring their children to medical attention, or when signs are detected on routine well-child visits or in day-care.
Retrospective studies, largely involving review of home movies, have suggested that autism can be diagnosed as early as 6-12 months, suggesting that parental report is not an adequate screen because subtle signs are hard to detect without rigorous observation.
Everybody knows that colonoscopy is the best test to screen for colorectal cancer and that colonoscopies save lives. Everybody may be wrong. Colonoscopy is increasingly viewed as the gold standard for colorectal cancer screening, but its reputation is not based on solid evidence. In reality, it is not yet known for certain whether colonoscopy can help reduce the number of deaths from colorectal cancer. Screening with fecal occult blood testing (FOBT) and flexible sigmoidoscopy are supported by better evidence, but questions remain. It seems our zeal for screening tests has outstripped the evidence.
Statistics show that the life-time risk for an adult American to develop colorectal cancer (CRC) is approximately 6%. Colorectal cancer is the second leading cause of cancer deaths in the United States. In the US there are currently 146,970 new cases and 50,630 deaths each year. Between 1973 and 1995, mortality from CRC declined by 20.5%, and incidence declined by 7.4% in the United States.
The US Preventive Services Task Force (USPSTF) recommends screening for colorectal cancer (CRC) using fecal occult blood testing, sigmoidoscopy, or colonoscopy, in adults, beginning at age 50 years and continuing until age 75 years. (more…)
A MISCARRIAGE OF JUSTICE THAT HAD A (SORT OF) HAPPY ENDING
Back in September and then again last week, I wrote briefly (for me) about an incident that I considered to be a true miscarriage of justice, namely the prosecution of two nurses for having reported the dubious and substandard medical practices of a physician on the staff of Winkler County Hospital in Kermit, Texas. The physician’s name is Dr. Rolando Arafiles, and he happened to be a friend of the Winkler County Sheriff, Robert Roberts, who also happened to have been a patient of Dr. Arafiles and very grateful to him for having saved his life. The nurses, Anne Mitchell and Vickilyn Galle, were longtime employees of Winkler County Hospital, a fifteen bed hospital in rural West Texas. Although some of you may have seen extensive blogging about this before, I thought it very important to discuss some of the issues involved on this blog. Moreover, there is an aspect to this case that the mainstream media reporting on it has missed almost completely, as you will see. Finally, this case showed me something very ugly about my profession, not just because a doctor tried to destroy the lives of two good nurses through his connections to the good ol’ boy network in Winkler County
Let’s recap what happened, a story that reached its climax last Thursday. In 2008, Dr. Arafiles joined the staff of Winkler County Hospital (WCH). It did not take too long for it to become apparent that there were serious problems with this particular doctor. Mitchell and Galle, who worked in quality assurance were dismayed to learn that Dr. Arafiles would abuse his position to try to sell various herbal remedies to patients in the WCH emergency room and the county health clinic and to take supplies from the hospital to perform procedures at a patient’s home rather than in the hospital. No, it wasn’t the fact that Dr. Arafiles recommended supplements and various other “alt-med” remedies, it’s that he recommended supplements and various other “alt-med” remedies that he sold from his own business–a definite no-no both ethically and, in many states, legally. Mitchell reported her concerns to the administration of WCH, which did pretty much absolutely nothing. Consequently, on April 7, 2009, Mitchell and Galle anonymously reported their concerns to the Texas Medical Board (TMB). In June, WCH fired the two nurses without explanation.
Why is my mind so clean and pure? Because I am always changing it.
In medical school the old saying is that half of everything you learn will not be true in 10 years, the problem being they do not tell which half.
In medicine, the approach is, one hopes, that data leads to an opinion. You have to be careful not to let opinion guide how you evaluate the data. It is difficult to do, and I tell myself that my ego is not invested my interpretation of the data. I am not wrong, I am giving the best interpretation I can at the time. For years I yammered on about how it made no sense to give a beta-lactam and a quinolone for sepsis until a retrospective study suggested benefit of the combination. Bummer. Now when I talk to the housestaff about sepsis, I have to add a caveat about combination therapy. It is why my motto is, only half jokingly, “Frequently in error, never in doubt”.
At what point do you start to change you mind? Alter your message as a teacher? Have new behavior? Medicine is not all or nothing, black and white. Changes are incremental, and opinions change slowly, especially if results of a new study contradict commonly held conclusions from prior investigations.
Nevertheless, I am in the process of changing my mind, and it hurts. I feel like Mr. Gumby.
I get a lot of email asking me about various alternative therapies and supplements. A recurring theme on this blog has been the hyperbolic claims of alternative practitioners and supplement makers, and while I can’t answer every email, I can at least address some of them in the blog. Supplements are often marketed using unsupported health claims to which is appended the Quack Miranda Warning, essentially allowing the makers to say that the pill will have such and such a benefit, while simultaneously denying any responsibility for the claim. Since the FDA isn’t examining these claims, it’s worth while to ask our own questions.
The latest email concerned a product called CardioFuel. Let’s take a closer look at this stuff.
According to the distributor:
CardioFuel is the most profound energy producing supplement on the market today! It does something like no other can: Increase energy at the most basic metabolic level, by increasing ATP (the biochemical energy unit of transfer) production. More ATP means more energy reserves to overcome chronic disease, beat the competition, and handle the everyday stressors of today’s fast paced world!
So to be taken seriously, there should be evidence that this product: 1) increases ATP, 2) increases “energy reserves”, and 3) helps overcome chronic disease and “the competition”. First, it is not possible to directly measure ATP in a human being under normal clinical conditions, so any claims about this must be an inference from markers of ATP metabolism, or a guess. We’ll see what the literature says about this below. Second, we need an operational definition of “energy reserves”. Does this mean fat stores? Glycogen stores? These things are measurable to an extent. Finally, we can do a literature search to see if CardioFuel or an acceptable analog has been tested for its effect on relevant outcomes.