By miraculous convergence, or by virtue of a coordinated campaign—take your pick—four research studies were published in the same medical journal this week all saying there was nothing, absolutely nothing, to the previous promising studies indicating that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is associated with one or more retroviruses.
It did not take the press long to pick up on the story. Case closed, nothing to see here, move along. This might have worked twenty-five years ago, but it is getting harder to pull off.
I wrote earlier about the phenomena of promising medical findings, some potentially restoring real life to millions, being summarily quashed, often with full approval of the government agencies and institutions that are supposed to be concerned with our health. The connection between ME/CFS and recently identified retroviruses like XMRV was one of the examples I used.
Granted, medical issues can be scary, confusing, and mysterious. If ever society needed science to help out, medicine is one area where science should be. For the last hundred years, for the most part, most of us were ready to let doctors and researchers sort medical problems out.
But science is not what it used to be. It has become a lackey, it seems, to help push larger agendas. You may not want to hear this, particularly if you are sick, but if you need convincing, an excellent recent article by David H. Freedman in The Atlantic shows just how and why this is done.
Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong. So why are doctors—to a striking extent—still drawing upon misinformation in their everyday practice? Dr. John Ioannidis has spent his career challenging his peers by exposing their bad science.
One glimmer of hope is that things are starting to change. It is no longer as easy for a doctor to brow beat patients into submission one at a time in closed examination rooms. Rather than go home, thinking the doctor must be right, I can’t be the one in a million having this weird disease so I must be crazy, patients can go online and find scores, hundreds, or thousands of others with the same problem, treated the same way. And, those obscure medical journals, once only found on the shelf at a medical library, are accessible from the same laptop. That prestigious study in a prestigious journal by a prestigious researcher at a prestigious institution your doctor quotes can prove to be childish garbage when you read it. Surprising, or not so, depending on your level of cynicism or knowledge. Again, The Atlantic article explains the how and why better than I can here.
It’s not that he envisions doctors making all their decisions based solely on solid evidence—there’s simply too much complexity in patient treatment to pin down every situation with a great study. “Doctors need to rely on instinct and judgment to make choices,” he says. “But these choices should be as informed as possible by the evidence. And if the evidence isn’t good, doctors should know that, too. And so should patients.”
There are intelligent and perceptive writers who follow the details of the retrovirus connection to ME/CFS. The biology and real science can be fascinating. But just as with the campaign against investigation into early 1980s outbreaks of AIDS, the problem is not with the science. Instead, it is with the machinery that kicks into gear to dismiss very real, very serious diseases and how science gets abused. This machinery is where our interest should be because that is what hurts us.
Who coordinated getting those four dismissive studies published at the same time this week? Getting whoever did this out of the way is going to make our friends, neighbors, and loved ones well quicker than anything.
I don’t know if XMRV causes ME/CFS, but I do know I want the best science used to figure this out. I don’t want government health agencies like the CDC, NIH, and FDA stopping real science and suppressing information and knowledge. I don’t want lobbyists telling them what to do. I don’t want journalists passing on garbage science naively and uncritically.
Science needs to have goodwill toward men. And women. And children. Each and every one.