Burden of Proof

While I'm writing the next installment about the IDSA guidelines review process, I've had a thought.

I was engaged in a debate about the validity of Chronic Lyme Disease recently. It was frustrating. I avoid these discussions because they don't get anywhere and there is something about them that I find very flawed. It has taken me a while to pinpoint it. I think I have done, though.

The IDSA has set the standard for how we define, test for and treat Lyme Disease. They claim there is no such thing as Neurologic Lyme or Persistent Lyme or whatever you want to call it. One of their representatives is a vocal advocate for labeling any ongoing symptoms after a short course of antibiotics as a psychosomatic illness. Based on IDSA authority, doctors across the country are told that they cannot treat a patient for more than 4 weeks. If they try, they are flagged by insurance companies and their licenses are threatened. Members of the IDSA often appear at Medical Board hearings to testify against their fellow doctors who try to treat patients. So, patients are left to languish.

In every debate about whether the longer-term illness that people are experiencing is "real" or not, those who want to believe in the IDSA guidelines insist that those who don't must prove that Chronic Lyme is real. Any attempt to discuss the matter devolves into persistent demands that you reference  scientific studies which prove to their satisfaction that Lyme is persistent.

Of course, those of us who are just patients, don't have the skill set nor the resources to know all the studies that may or may not have been done. And, so, we are told we have no place at the table. The guidelines supporters believe they have rightfully ended the debate.

Here's what bothers me: Where is the science that proves beyond all doubt that persistence is not possible? Where is the science that proves that long-term treatment is never helpful? Where is the science that proves that these patients suffer from a psychosomatic disorder?

It seems to me that if you are going to override what the clinical doctor, who sees the patient, is asserting that the patient needs and, by doing so, you are leaving hundreds of thousands of people to suffer and die, the burden of proof is on you. Just because you haven't figured out the mechanism of the illness or what might be the best course of treatment, does not mean that you have the right to deny doctors and their patients the ability to try and figure it out the best they can right now.

That burden has not been met.

So, from now on, I am going to insist in any debate about whether patients need treatment for their ailment that you prove beyond a doubt that they don't. I refuse to chase the red herring of having to prove that they do.

Clearly, the science is limited, thus far. Fund the research. Fund it with monies that do not come with conflicts of interest. Make both the process and the results of all the studies public. Until you do, stop being the de facto law over the private practices of other doctors. Get out of my way and let me have some chance, any chance, at recovery.