831 karma · joined July 13, 2017
> I did not accept this. I have young kids to watch grow up and a loving wife to grow old with. Life and time are the two most precious commodoties we will ever have.
As sorry as I am that his hopes were futile, time and again the universe shows us how little it cares for these sentiments.
Regardless of what resources one might have to protest, we are all slowly ground to dust.
Meaning a retraction that was later found to be in error, resulting in re-publication (or whatever)?
I imagine the bar for retraction is so high it would never happen, but it would be really interesting if it ever did.
This is a reported piece, so the description could be completely off the mark. But the quote from the neuroscientist is
> “What it tells me,” says Christof Koch, a neuroscientist at the Allen Institute who specializes in consciousness, “is that … you can get dissociation between cognition and consciousness.”
which is a wild overintepreretation.
Gerstmann syndrome is the same kind of deficit where you have preserved consciousness and severe impairments in one very specific cognitive domain. Aphasia is a more common version of a focal neurological deficit which is equally analogous.
This whole article is just pop science nonsense (although it's entirely possible the underlying research has merit; it's not easy to tell based on an article about it).
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.
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.
My main comments are the same from a thread about lyme on HN 7 months ago [1]. If you follow it to it's terminal conclusion, it shows that neurologists had a standard course of therapy for lyme. The alt-lyme community insisted that it was too short, and you needed long term treatment (with a duration based on their own experiences/treatment regimens). So conventional medicine studied the longer courses of treatment, and found there was no difference when studied in an objective way (randomized double blind comparison). Well, as soon as that happened, the goal posts got moved back, and they alt-lyme community said "well of course the study was negative! the treatment course wasn't long enough! It needs to be 12 weeks, not 8 weeks" (or whatever), even though they had consistently been saying 8 prior to the study. And still conventional medicine is open minded about any evidence that can be provided. That's how science works! 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.
Even the other treatment outlined in this blog post (disulfuram) has an open study that is still looking for volunteers. That tells you a little bit about the level of need (modest, but not zero) and the disinterest of the patient community in advancing science (you can draw your own conclusions here).
Related to this Stanford post specifically, I'm disappointed.
> We'd been bitten by unseen ticks harboring the parasites that cause Lyme disease and babesiosis, a malaria-like disease
It's far (far!) less like malaria than it is to syphilis. It's a bit like saying "this is a border collie, which is similar to a Maine Coone". Ok, well... kind of. To the extent that they are both mammals. But why are we not comparing the border collie to a great dane or a poodle? Because those are just as familiar, and way more similar.
What syphilis and lyme have in common is that they are both spirichete bacteria, and a huge portion of the disease burden if it's not diagnosed quickly (and it's often not...) is due to autoimmune injury. You can completely kill all the bacteria in the chronically infected person, and their life will not get any better, because the autoimmunity is present, and unrelenting. Which is the second big criticism of this blog post: killing all the bacteria is not the challenge, and this discovery, while awesome, is not awesome for the reasons described.
PragmaticPulp really nailed it here with what is now the top comment on this thread.
> for reasons that are unclear, the antibiotics don't work for up to 20% of people with the tick-borne illness. One possibility is that drug-tolerant bacteria cause the lingering symptoms.
these reasons are only unclear to the alt-lyme community.
> Many researchers believe that doxycyline's inability to clear the persisters may account for the ongoing symptoms of some Lyme sufferers.
Yes, the same researchers that are working on climate change for Exxon. It doesn't mean they won't disprove climate change, but it means they are outside the conventional understanding of this area of science.
Overall, though, the science story here is legitimately cool! The scientists are using the application of a high-throughput system to test multiple compounds with known safety profiles against a pathogenic organism. That's an awesome form of problem solving consistent with the hacker ethos, and is done a disservice when presented along side this alt-lyme woo.
1) ignore me, because that isn't even internally consistent
2) ask yourself why that's a good thing.
Compare that to
"your brain scan in 10 years will show less atrophy", or
"your brain scan in 5 years will show less chronic microvascular injury", or
"your scores in attention and daytime sleepiness will improve", or
"your life expectancy will increase by 4 years"
Those are directly meaningful, because you don't need a doctor to tell you why they are good things (or you do because it's jargony, but a doctor could explain it in one sentence)
For example: "Increase in right hippocampal GM density among yoga group." Why is this a good thing? Let's not even talk about the physical inappropriateness of using "density" to discuss MRI results.
Using meaningless-but-easy measurements as a surrogate / proxy for meaningful-but-hard measurements is an entire field called "biomarkers". It's incredibly challenging in neurology, and we don't have many good, validated biomarkers. If you want to use "MRI density" (sic), or "fMRI activation", then first you need an entire study to prove that the biomarker is valid. This a subtle point, but it's as if you're counting lines of code to determine the best programming language: yes, it's a measure, but how does it relate, and what does it mean?
We all (including doctors) want things that are natural, wholistic, and give us a subjective sense of well-being (like exercise and mindfulness) to be magically effective. But that doesn't change the need for rigorous science in order to know that it's the case.
And the formula is always the same: a double-blind, placebo-controlled trial within a representative population using a directly meaningful outcome.
This review failed the "meaningful outcome" part, even if (and I personally don't care to look further) they got the rest of pieces right.
ahh! there is something here. I't subtle but I think it's a really important process you've described:
Conventional medical experts took the anecdotes and lyme theories, and decided to test "long term" therapy that was being advocated by less-conventional but still well-meaning providers at the time. These were the results: they showed there was no benefit.
So conventional thinking moved on, and the now-fringe thinkers simply moved the goalposts. Any scientist is going to be open-minded about the possibility of something being effective, even if they don't understand it. But at this point there are far better places (meaning "likely to show efficacy") to invest research resources.
And the question we're all asking ourselves is: if the alt-medicine community is so convinced that there is a benefit, why on earth won't they perform a randomized, placebo-controlled, clinical trial. We already did several, and published them. If the alt-lyme community still wants to continue making claims and expect to be listened to, they are going to need evidence.
That seems like it should be uncontroversial to me, but here we are.
Test tubes are profoundly inadequate for this kind of study, because the immune system makes a huge difference. Many antibiotics are bacteriostatic (not -cidal), and don't kill the organisms. But that's enough to give the host immune system an edge, and we wipe it out instead of succumbing to the infection.
If there is a benefit to longer treatments, it should be straightforward for the alternative-lyme industry to perform a similar double-blind placebo-controlled trial and prove it.
That's what happened with the "unconventional" example of cannabis for epilepsy, and now it's available to every patient who needs it, and is covered by their insurance. This example just supports the idea that doctors care about their patients, and want effective treatments to be found. When you have a splinter group of doctors who disagree with convention, create a splinter industry on top of it, and market theories rather than publish data, then my default position is going to be skepticism, and I'm going to try to help my own patients find something more promising (though I would never fault them for trying anything: I recognize they are desperate, and the victim of a con is hardly to blame).
Posttreatment LD remains a poorly understood syndrome,
occurring in an estimated 10% to 20% of humans treated
under current IDSA guidelines.30 Multiple randomized,
placebo-controlled studies that evaluated sustained
antimicrobial therapy concluded that there is no benefit
in alleviating patients' symptoms and indicated that long-
term antibiotic therapy may even be detrimental to
patients because of potential associated complications
(ie, catheter infection and/or clostridial colitis).31,
32, 33
Berende, A., ter Hofstede, H.J., Vos, F.J., van Middendorp, H., Vogelaar, M.L., Tromp, M., van den Hoogen, F.H., Donders, A.R., Evers, A.W., and Kullberg, B.J. Randomized trial of longer-term therapy for symptoms attributed to Lyme disease. N Engl J Med. 2016; 374: 1209–1220
Kaplan, R.F., Trevino, R.P., Johnson, G.M., Levy, L., Dornbush, R., Hu, L.T., Evans, J., Weinstein, A., Schmid, C.H., and Klempner, M.S. Cognitive function in post-treatment Lyme disease: do additional antibiotics help?. Neurology. 2003; 60: 1916–1922
Klempner, M.S., Hu, L.T., Evans, J., Schmid, C.H., Johnson, G.M., Trevino, R.P., Norton, D., Levy, L., Wall, D., McCall, J., Kosinski, M., and Weinstein, A. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001; 345: 85–92
The clinical entity of chronic lyme disease which is undiagnosable by conventional medicine and require months and months of antibiotics is pseudoscience. There is a large industry built to pedal treatments to purported sufferers. I don't want to be disrespectful of the people who report being helped by these treatments, but this is exactly the same situation as vaccinations causing autism: people being convinced by "obvious facts" that are ultimately supported by anecdotes but not science.
The medical community can be wrong, for sure (h. pylori is a great example), but we notice treatments that help our patients, even when unconventional (the FDA approval of cannabis to treat epilepsy is the most recent example).
This will eventually reach the same conclusion as the vaccination debate; hopefully with a lower price tag of dollars and lives.
It's a known syndrome, and may be associated with ADHD symptoms, episodes of intense skin flushing or redness (erythromelalgia) and epilepsy.
0. https://www.healthbusinessgroup.com/2008/01/11/what-causes-a...
Other medical sources:
https://www.ncbi.nlm.nih.gov/books/NBK1163/
https://www.ncbi.nlm.nih.gov/books/NBK481553/This is basic thermodynamics: if you can burn fossil fuels to get energy/electricity, then putting the CO2 byproduct back into an inert form will cost exactly as much (or more; courtesy of the second law) as it would have to get that energy from a different source in the first place.
There is no technology - now or ever - that will make "scrubbing" CO2 more economical than simply leaving the oil in the ground, and using renewable energy sources.
> That's who I trust. Never the behemoth driven by fiduciary duty and self interest.
Trust is orthogonal to craftsmanship.
> Adam Smith's philosophy is nearly 250 years old and predates the modern industrial revolution. It's time we stop putting it on a pedestal.
It's less a philosophy than an understanding/insight regarding human behavior. You might as well say "it's time we stop putting newtonian physics on a pedestal", to the extent that both are reasonable models of human behavior, and are helpful in many, many real-world situations.
Arguing that people "shouldn't" behave according to Smith's expectations is going to be about as successful as arguing they shouldn't fall when they jump off a ladder.
> I consume exactly none of those things and have no desire to consume any of those things.
Nor do I, but many people do, and that decision makes them different than me, not less than me.
"Clever" titles are annoying to me, and more so when they degrade the clarity of the message.
What does "flushing out" even mean, in the context of the opioid crisis?
Fixing it?
Measuring the crisis?
Identifying hot spots?
Focusing resources?
Identifying specific types of narcotics?
The author has decided that "I am clever" is a more important message than whatever the point of the article is.
If you exert editorial control over anything, fight the temptation to be clever; especially when it obscures the real message.
stupid to think using the IP was a good idea
malice to break my device in order to paper over their stupidity.
And from a telecom no less - of all people, they should know better.
The doctors who do this (largely running a cash-only practice) are really a disgrace to the profession.
It's good to be willing to think outside the box and practice with compassion, but it's another thing entirely to create prescriptions for surreptitious indications that is motivated by personal profit.
As a doctor who sees patients with a legitimate use for compounds that come from the cannabis plant, the people who want recreational access just bog down the health system.
I am strongly in favor of federal recreational legalization, if for no other reason than to get it out of my office.
Prohibition has failed, and legalization is a far superior public policy option.
Recreational use should be available through places like Meadow, and medical use should come through conventional pharmaceutical manufacturing methods (like you would want for any other medication you take).
That's a little bit overly generous.
It was put in place to incentivize invention and creation. But I think clear with examples like this that it's holding us back. There are so many people, and there is so much innovation, and so much ability to understand how something new works that these laws do nothing to help the public.
And even if they started with the public good in mind, we are now far from it.
As other responders are suggesting: scrap it completely, and see where things end up.
And even though we are discussing patents, the benefit to the public is ten times larger for copyright.
Copyright maximalists had a stroke of genius when they started calling it "intellectual property" and "IP rights". This allows you to make it a moral issue, rather than a public policy issue (which is what it really is).
Your https connection confirms you got something from github, but you have the ability to prove the thing you got from github was from the same individual.