Good Medical News. Now what?
There was good medical news yesterday.
Let’s take a walk through ME/CFS, XMRV and MS, CCSVI…
In 1995, Paolo Zamboni, an Italian surgeon, did not accept common medical answers when his wife was diagnosed with multiple sclerosis. He reviewed the literature instead of relying on current rote guidelines and found promising, yet abandoned theories. One involved iron accumulation in the central nervous system. Zamboni, who specializes in vascular problems, realized that obstruction of blood flow away from the brain could be causing the iron issue. After radiological imaging showed obstruction in his wife’s jugular vein he performed balloon angioplasty—a simple, well-understood procedure— with remarkable results. Her MS symptoms rapidly resolved and did not return. The promise for MS sufferers did not go unnoticed. Chronic cerebrospinal venous insufficiency (CCSVI) appears to be an important, sometimes primary, cause of MS symptoms. Clinics providing surgical correction to CCSVI are being opened in medical tourism sites worldwide.
In October, 2009, researchers published a paper demonstrating a correlation between xenotropic murine leukemia virus-related virus (XMRV) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). They found 67% of ME/CFS suffers were positive for XMRV and only 4% of healthy subjects were positive.
Government agencies, particularly the Centers for Disease Control, would be expected greet news like these reports with their full support and resources. But something much different happens—almost invariably.
Current estimates of the number Americans with MS are about 400,000. Estimates of U.S. prevalence of ME/CFS are about four million. Both of these diseases can rapidly become disabling and persist for years or decades. Any plausible suggestion of a pathway to cure or remission should obviously be investigated to its fullest by our best and most insightful researchers. But this rarely happens. Usually, government/academic/corporate machinery kicks into gear to smother the most innovative, perceptive research.
We can guess at reasons why, but in a secretive and manipulative system it gets hard to determine true causes.
It could be as simple as an agency, medical specialty, or corporation unwilling to admit they have been embarrassingly wrong for a long time. It could be the unwillingness of the medical doctor culture to deviate from their medical textbooks or professional group guidelines.
More cynically, it could be that medical resistance to new ideas comes from entrenched investment by drug companies, medical device manufacturers, and medical specialities profiting substantially from the status quo.
Health insurers could be the real cause of the problem. They like predictability. They would rather have a disease classified as incurable with predictable costs than have it be curable with unpredictable costs. This is particularly true if the innovation has a one-time, fairly substantial cost that does not entirely guarantee immediate payback in reduced insurance company payouts. Insurers only want to pay for things they build into the premiums they charged the previous three years.
As Ludwig Fleck explained in Genesis and Development of a Scientific Fact the medical profession is filled with uncertainties. When doctors encounter a new medical phenomenon there is a period of chaos where all sorts of explanations and recommendations are suggested. Then, at some point, a version of the phenomena is included in a vade mecum (handbook) that becomes the reality doctors use. (Yes, this is similar to points raised in Thomas Kuhn’s The Structure of a Scientific Revolutions. Kuhn acknowledged reading Fleck, but did not feel significantly influenced by his writings.)
Regardless of motivation, there is a pattern of behavior among our government backed researchers that is not good.
We see it in recent government-academic-corporate handling of CCSVI.
Zamboni published his first paper on CCSVI and MS in April,2009 (web availability December, 2008). Without the efforts of patient advocates, the news might have gone unnoticed. In February, 2010 Canadian news media picked up the story and in June, 2010 The New York Times published a fairly balanced article.
From the article:
“In my view the evidence is quite scanty and the biological plausibility is low,” said Dr. Stephen L. Hauser, the chairman of neurology at the University of California, San Francisco. Many neurologists agree. Dr. Hauser said there was much stronger evidence that the disease arose from genetic variations affecting the immune system.
Neurology specialists want to own MS. They prescribe expensive, injectable drugs that generally make patients feel worse and only produce improved symptoms about a third of the time. Science has little to do with this. Their popular theory of genetic differences in the immune system causing MS, were recently refuted in an extremely rigorous study in identical twins. There was no indication of genetic causation, nor has there ever been, but that does not change neurologists’ minds.
In a National Post article, in January, 2010, Dr. Mark Freedman states “I think there are going to be millions of dollars spent now to follow a hoax…. If I thought for one instant there was substance to this, I’d be all over it,”. Freedman is head of U. of Ottawa’s MS program.
Dr. Zamboni has always presented his observations with the great caution, saying only that we need to find out more. The vitriol directed at him is unwarranted, almost spectacular, and, depending on the career strategy of the journalist, either reported reasonably, or as vitriol confirmation.
With CCSVI, U.S. government agencies have yet to join the discussion. The CDC is, at its heart, primarily an infectious disease agency and does not look that closely at therapies not involving acute infections. The CDC has historically discounted infection as a possible cause of MS.
But what about CDC response to a new possible cause and treatment for ME/CFS? The CDC has been actively trying to suppress evidence of infectious causes of ME/CFS since the mid-1980s. In October, 2009, Dr. Judy Mikovits reported in Science that her research group found evidence of XMRV in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) in healthy controls. The CDC immediately began research to show Mikovits wrong and show themselves right, advancing their advocacy of CFS as a psychological condition, just as they had for the last 25 years. And, the CDC’s study saw nothing, absolutely nothing. Their study tested 51 persons with CFS and 56 healthy persons. All had completely negative tests.
But outside the CDC, researchers just weren’t with the CDC’s program of XMRV suppression. A National Institutes of Health/Food and Drug Administration (NIH/FDA) study showed a significant correlation between ME/CFS and the XMRV retrovirus.
Both papers were approved for publication, but once word got out there was a disagreement, both sides agreed to put their papers on hold. Right here, we have a problem. If researchers were doing real science, data should be a data and any observations, if legitimate, should published as soon as possible.
Despite the detente agreement, the CDC paper, denying a correlation between XMRV and ME/CFS was published July 1, 2010. The NIH/FDA paper confirming the correlation was put on hold.
But this week there is news. On August 24, 2010, the NIH/FDA paper was released. Not only does it give remarkably good evidence for a correlation between XMRV-like viruses and ME/CFS, but it explains how the XMRV denialists might have produced their negative results.
Clinical medical research has become something much different from real scientific research motivated by desire to understand our world. It is mostly a propaganda tool using the whitewash of prestigious universities, institutes and agencies to give it credibility.
Marcia Angell resigned as editor of the New England Journal of Medicine in June, 2000. In 2009, in The New York Review of Books she says:
It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.
Sharon Begley recently wrote in Newsweek of how little useful comes from NIH sponsored medical research despite the $31B a year it costs taxpayers. This is a really bad thing. But what is worse is the sizable portion spent to stifle possible innovations that could help disabled and dying citizens. As with virtually everything political in the U.S. these days, everyday citizens end up financing corporate malfeasance. We pay for it in insurance premiums, drug prices, and taxes.
Maybe we don’t need to speculate on why this is going on. Maybe we just need to stop doing it. We can sort through which senators and reps support this medical cartel and get them to change or get them out of office. XMRV and CCSVI are just recent examples coming to light. How many other medical problems are waiting for unbiased research and solutions?
(Cross posted on Daily Kos. You might want to read comments there.)