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Truth is Hard

In her Stat article, “The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades,” Sharon Begley describes the tragedy of dogma in science. The article was published in June 2019, and with its numerous parallels to the Lyme disease disaster, I’m surprised to have missed it for seven months.

To quote the article:

“In more than two dozen interviews, scientists whose ideas fell outside the dogma recounted how, for decades, believers in the dominant hypothesis suppressed research on alternative ideas: They influenced what studies got published in top journals, which scientists got funded, who got tenure, and who got speaking slots at reputation-buffing scientific conferences.”

The Alzheimer’s situation has such a familiar ring to it, I wonder what is the underlying crime in that realm.

In Lyme disease, the underlying crime is the falsification of the case definition in 1994. It was really hard to diagnose the disease with the blood tests that were widely available (and are to this day the accepted standard even though they are relics, scientifically speaking). There seemed to be no correlation between infection and seropositivity. Curiously, though, the patients with certain genetic factors frequently presented with an arthritic knee—and those patients were most likely to produce the antibodies necessary to test “positive” for Lyme.

In her Stat article, Ms. Begley wrote of the parallel Alzheimer’s universe: “The brain, Alzheimer’s researchers patiently explain, is hard — harder than the heart, harder even than cancer.” The common theme seems to be that doing the right thing is hard; let's do the thing we can commercialize.

In Alzheimer’s it’s estimated that millions of victims could have been spared over the last 10-15 years had the honest science been funded and allowed to thrive. In Lyme, the toll cannot even be counted because there are potentially a million cases a year going entirely undiagnosed. They get tossed around different specialties, tossed out of practices, tossed onto a human waste heap. Seronegative Lyme victims only matter to the establishment insomuch as they generate a profit—usually years down the road, when cancer sets in.

Ms. Begley writes, “Despite being described as a “cabal,” the amyloid camp was neither organized nor nefarious. Those who championed the amyloid hypothesis truly believed it, and thought that focusing money and attention on it rather than competing ideas was the surest way to an effective drug.” I am certain this line will be parroted in defense of the Lyme “cabal” when the day comes that the world realizes it has been duped.

What the Lyme “cabal” did was redefine the disease to include only the cases they knew they could diagnose with the most basic serologic methods. Never mind the very sick people who didn’t fit neatly into the diagnostic box: those cases made things hard. They have been described by scientists in the "cabal" as "confounding factors". Why not just build a smaller box and call it a day?

And so they did. They reduced the box to 15% of its original size and reverse-engineered the diagnostics based on that small proportion of cases who are genetically predisposed to have a strong immune response and an arthritic knee.

But how has the Lyme “cabal” maintained its stranglehold on science, policy and media coverage for the last quarter-century? They are organized, and they are nefarious. I’ll explore some of the evidence in my next post.


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