Lyme disease: Losing your innocence in science
Having Lyme means losing your innocence, utterly, in science. It's true. I am remembering the night I explained evidence-based medicine to a friend whose daughter had Lyme. I explained that in Lyme evidence-based medicine was a “tool” for persuasion in a polemic argument. He was stunned. His daughter had Lyme. He believed in science. He had trouble, real trouble, getting his daughter diagnosed and treated. He knew the problems of Lyme from the inside out. But it hadn’t occurred to him that science wasn’t “pure” science. That researchers followed their bias, their pet theories, their commercial interests in designing and interpreting studies. It was an interesting moment with this sharp and concerned father while he tried to understand the depth of the problem in Lyme. It was a moment when innocence is utterly lost for the first time to those who know how the system of science “ought” to work.
He was captured in the first blush that the problem was simply one of communication. That if we explained clearly and simply the science in the peer-reviewed literature, well, that that should trump any other concerns. And certainly that those who placed patient interest above other concerns would stop, pause and reassess. That is what men (and women) of science do, right? Well, that is what altruistic science aspires to.
Unfortunately, science is tethered to this earth by humans, with all of the faults and foibles that being human entails. Sometimes these human failings are painfully obvious. Like when researchers promote theories that favor their commercial interests with vaccine manufacturers, Lyme diagnostic test and insurance consultancy arrangements. These are real dollars and all patients have to offer is real lives. This is where capitalism utterly falls down on the job of protecting the democracy.
Other times these influences are subtle. What does it take to maintain an academic career? Well, these days it is not so different from what it takes to be a partner in a law firm. You need to support and add a profit to your “overhead”, which in research consists of your square footage of facilities, your research staff, the cost of your research, and, of course, you. This means you need grant dollars, you need the relationships to throw grant dollars your way (government relationships are always a plus), and you need a theory and a course of science that intersects with commerce.
In Lyme disease, commerce is always headed towards vaccines and diagnostic tests. Vaccines are interested in a narrow disease definition because this increases vaccine efficacy and increases the odds that the vaccine will be approved by the FDA and endorsed by the CDC. There is no crime in this alone. The crime is in pretending that vaccine interests align with patient care. Patient care is all about early diagnosis, not missing a case, treating and preventing the progression to chronic Lyme disease. This means the disease definition should reflect clinical reality, not a constricted definition that suits vaccine trials best. This is directly in opposition to the needs of vaccines. That is called a conflict of interest.
So, let’s not pretend that what is good for vaccine manufacturers is good for patients. Nor should we presume that the diagnostic tests for Lyme that followed the vaccines and reflected the needs of the vaccines are good for patient care. These are vested interests—pure and simple—vested interests that have nothing to do with patient care and should play no part in health care.
Having Lyme means losing your innocence, utterly, in science.
Well said. Thank you.
The vested interests of preserving career and reputation are primal motivations here, too. Arrogant public comments and actions reflect disdain for their ‘opponents’ (patients and LLMDs) and their resolve to prevail. These Lyme experts have “helped patients†by intimidating and prosecuting providers, and testifying on behalf of insurance companies to deny benefits to Lyme patients. They have staked their professional lives on their skewed version of Lyme disease, and are fighting to preserve this whether they are right or wrong. Their careers depend on it, considering the ramifications of admitting any error:
1. Their careers and professional reputations would be tainted if not ruined.
2. Omnipotent power and control over this disease empire would be curtailed.
3. They must face their clinical peers, who followed their lead using limited Lyme treatment protocols, (reinforced by the major medical journals and medical associations), fearing retaliation if they didn’t. Providers would now face the consequences of this incomplete treatment regimen on their patients.
4. They must face their research peers, who adhered to their definitions on Lyme or face loss of funding or publication of their studies, skewing research and hindering new developments.
5. Finally, they would be forced to personally acknowledge the impact their actions have had on the PATIENTS who lost their health, income, insurance, credibility in the medical community, etc. over the course of their careers. Would their thoughts include potential liability issues from patients AND doctors?
Sue Duckworth
The NIH has deliberately funded and promoted the IDSA view of lyme for years. Without this huge funding power and hammerlock on reseachers, these views would wither away quickly. Except in those folks who could not bear to admit they were wrong. If the NIH instead, funded honest research in tickborne diseases like lyme, we would not be where we are today….begging for help and not getting it.
Just look at the record of the two previous occupants of the position of NIH lyme program supervisor. Could it be any clearer that there was no honest direction for the program? Instead, those researchers who promoted the IDSA views were sent right to the top of the heap, given big germ palace grants for their universities, grants that went on for decades, etc.
The way to get ahead in science careers is not to do good work, it is to get funded and receive tenure and promotions. Those who are sure fire grant recipients over the long haul are courted by universities. Just look at the recruitment of Steere by Harvard. It was certainly not for his advancing of patient interests.