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I wanted to add a second reply about the way public health recommendations work because this is something that many people, including doctors, don’t take into account. My studies in public health were in health promotion and behavioral science (although everybody had to study epidemiology and statistics). It was drilled into us that the aim of public health is to do the most good for the greatest number of people. The implications for people like us are profound when it comes to vaccine recommendations. Public health campaigns whether from the CDC or from a medical society have therefore focused on encouraging everyone to get the vaccine. We should, too, but we should not go into it blindly without taking precautions to avoid a flare. By this point, I imagine that most rheumatologists are aware of the risks and how to mitigate them. PCPs may not be as aware. As I said earlier, between my pharmacist and my rheumatologist, I have avoided vaccine related flares. In contrast, a friend with another autoimmune disorder that causes thrombocytopenia was not warned, and her white cell count plummeted dangerously. When she asked the doctor about this, the doctor replied that there was “no evidence” that the vaccine was the cause. Here’s where it becomes important to distinguish between public health recommendations and medical practice where one size does NOT fit all. Medical research requires testing an intervention against a control in order to “prove” evidence, and for ethical reasons, individuals who are vulnerable to harm from exposure are generally excluded from research studies. The evidence of possible causality in public health comes from monitoring and surveillance. Technically, then, causality is never “proven,” but as evidence mounts of correlation between, for example, vaccine and flare, that knowledge is what should inform good practice. That piece of the puzzle isn’t always communicated to medical providers as well as it should be.

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Replies to "I wanted to add a second reply about the way public health recommendations work because this..."

@potterywoman Well- articulated post! Yes, I think doctors are only inclined to accept facts based on documented peer-reviewed sources, while ignoring the 'anecdotal' evidence from their own patients' experiences. This is where the real information should come from because our experiences are based on real life. Case in point: My doctor was hesitant to recommend red-light therapy to reduce inflammation because only a handful of her patients said it helped them!