4 ms·
> This shows a lack of empathy. Well, now you are attacking my humanity. It's very difficult to have constructive dialog about these issues when individuals at
by dumbneurologist 7y ago
> This shows a lack of empathy.
Well, now you are attacking my humanity. It's very difficult to have constructive dialog about these issues when individuals attack the speaker, and not what's being said. We are talking about public health policy, which necessarily glosses over individual patients who are suffering and aggregates them into cold, sterile statistics in order to make decisions that are best for society. It's not particularly compassionate, but it's unavoidable if you want resource allocation to be proportional to need.
> like you, deny the severity of the problem
This is a straw man argument, where you take a crummy version of my argument and knock it down. "Severity" is not the word I used. I said "level of need", which is different because it takes severity (magnitude) and frequency into account. Progeria is a devastating (severe) disease, but it's also exceptionally uncommon. From a public health standpoint, both are an important part of determining the level of need, and therefore the level of support that these problems receive.
> how would they hear about this trial
from the internet, where the conventional doctors you are assailing created clinicaltrials.gov in order to make such information accessible to everybody.
> But the main reason is that patients don't need the trial, Lyme communities are full of people taking disulfiram on their own and finally recovering.
Nothing makes us happier than when our patients are connected with effective treatments. Nevertheless, the publications you site appear to lack random assignment, placebo control, or a double blind. Therefore I find the data uncompelling, even as I am happy to see that there is a trial for it; I hope it includes these three elements which make the results most meaningful.
Absent that study it remains possible that disulfuram will be the miracle cure you claim that it is, but I'm not expecting that to happen, and I suspect that chronic lyme will be a topic on HN in another 9 months exactly because the needle hasn't moved far enough. Please prove me wrong! That's how big breakthroughs are made! (witness h pylori infection and gastric ulcers). But please excuse me if I don't hold my breath for the announcement, and advocate more more conventional research during that time.
- vimy 7y ago>Well, now you are attacking my humanity. I do. >But you are going to need to pay for the evidence, lyme people, because we feel like we did our due diligence with the first study, and don't need a repeat of the public health resources that were wasted searching for the autism-vaccine link over and over again. Because this, especially 'lyme people', and other elements of your post show your disdain towards Lyme patients. Can you imagine someone in the 80's saying those 'AIDS people' should fund their own research? This kind of behavior towards patients who are suffering severely is exactly why so many fall in the arms of charlatans and quacks.
- dumbneurologist 7y agoThe post I'm responding to is a stanford researcher who is posting about lyme disease. Is she a lyme sufferer? If she is she doesn't say so, and I'm not making any assumptions. You are attacking me for saying "lyme people" even as you use "lyme patients" in the same sentence. There is no difference: both use lyme as an adjective to define a subpopulation using a completely innocuous starting population ("people" v "patients"). I'm just starting with a bigger group, because unaffected family, friends, etc can have these opinions too.
- vimy 7y agoFrom the context it was clear you used it as a pejorative. The tone of your original post was: Lyme patients should stop whining, it's not that bad of a disease. In reality, patients with Lyme have a worse quality of life than those with AIDS or cancer. It's that bad. And what you wrote tells me that you, as a doctor, don't seem to understand that.