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Significant breakthrough in search for Parkinson's biomarker

michaeljfox.org

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Re: Significant breakthrough in search for Parkinson's biomarker

#91

Post by JumpCrisscross »

canadiantim wrote: post #74
sokoloff wrote: post #71

Earlier quoted context omitted.

That's the precise essence of why quackery is dangerous. People are searching for "every possible way that can help" and quackery can easily exploit that natural tendency. (I am not qualified to render any opinion on whether this specific protocol is quackery.)

That's also the precise essence of throwing out the baby with the bathwater. I'd much rather have the information in front of me so I can evaluate it and make my own determinations. If the parent commenter had their way I would've never seen this information. Now I can actually vet it out and do my own research. I think it's infinitely more dangerous to deprive people of information.

> much rather have the information in front of me so I can evaluate it and make my own determinations

This is the danger. Most people, myself included, are not qualified to make that determination alone. In this case, as expected, it looks like it was crap [1][2].

I'm not arguing in any way for censoring anything. But there is legitimate danger when people, often desperate, compare legitimate medical research, which will be subdued, with quackery, which will be ostentatious, and then, worst case, reject the actual medicine or hurt themselves trying to administer rogue therapies.

[1] https://news.ycombinator.com/item?id=35771376

[2] https://news.ycombinator.com/item?id=35771048

Re: Significant breakthrough in search for Parkinson's biomarker

#92

Post by kfrzcode »

nequo wrote: post #86
insanitybit wrote: post #81

Earlier quoted context omitted.

As opposed to? Unless you're actually going to read individual papers, vet the authors, have the baseline statistical knowledge to understand the results, etc, you're always going to be susceptible to potential misinformation. This HN topic is a good example of the difficulty of verifying information. Who's to say that ChatGPT doesn't provide a better job of filtering it out?

Yes, I would start with Google Scholar, or at least Wikipedia because it tries to provide sources for each statement that it makes. > Who’s to say that ChatGPT doesn’t provide a better job of filtering it out? No one because no one knows what sources ChatGPT is blending together in its sentences.

[flagged]

Re: Significant breakthrough in search for Parkinson's biomarker

#93

Post by pfisherman »

canadiantim wrote: post #74
sokoloff wrote: post #71

Earlier quoted context omitted.

That's the precise essence of why quackery is dangerous. People are searching for "every possible way that can help" and quackery can easily exploit that natural tendency. (I am not qualified to render any opinion on whether this specific protocol is quackery.)

That's also the precise essence of throwing out the baby with the bathwater. I'd much rather have the information in front of me so I can evaluate it and make my own determinations. If the parent commenter had their way I would've never seen this information. Now I can actually vet it out and do my own research. I think it's infinitely more dangerous to deprive people of information.

Counterpoint. Historically people have not been able to evaluate these types of claims. See the history of snake oil salesmen and the origins of the Food Drug and Cosmetics Act.

I don’t think it is a problem when people look at stuff, think it is interesting and try something relatively benign on themselves. For me the problem is when people start trying to play doctor without medical training or license.

Re: Significant breakthrough in search for Parkinson's biomarker

#94

Post by Cthulhu_ »

neals wrote: post #2

As I am now casually interested in the subject, what's a good resource to find out why this disease is hard to detect and cure and various other interesting facts?

A cursory browse of wikipedia is my first port of call, that's what chatgpt bases their answer on as well (what the other commenter pointed out).

Yeah it's not verified etc, but it's more accessible than reading the sources it cites itself on.

Re: Significant breakthrough in search for Parkinson's biomarker

#95

Post by kfrzcode »

canadiantim wrote: post #56
c_hagau wrote: post #36

Earlier quoted context omitted.

Published in the "Journal of Integrative and Complementary Medicine", "The leading peer-reviewed journal providing scientific research for the evaluation and integration of complementary medicine into mainstream medical practice." "Integrative and Complementary Medicine" is a fancy way of saying quackery. Also, the video you linked to is on a channel run by a person describing himself as "a certified functional medic…

My pet peeve is people dismissing potentially very valuable scientific results because they’re afraid of quackery… Yes we should be cautious but no we should not dismiss. In fact I consider myself very fortunate for stumbling on this information as it may be very helpful for someone I love and I want to explore every possible way that can help.

Agreed; this is akin to the "woo" applied writ large to the lucid dreaming phenomenology; or anything "metaphysical" crossing into "empirical" -- I have a fondness for the UAP topic and it's poster child for this effect. I know there's a grain of truth in the bucket but the wackery is beyond my ability to dredge.

Re: Significant breakthrough in search for Parkinson's biomarker

#96

Post by Cthulhu_ »

canadiantim wrote: post #56
c_hagau wrote: post #36

Earlier quoted context omitted.

Published in the "Journal of Integrative and Complementary Medicine", "The leading peer-reviewed journal providing scientific research for the evaluation and integration of complementary medicine into mainstream medical practice." "Integrative and Complementary Medicine" is a fancy way of saying quackery. Also, the video you linked to is on a channel run by a person describing himself as "a certified functional medic…

My pet peeve is people dismissing potentially very valuable scientific results because they’re afraid of quackery… Yes we should be cautious but no we should not dismiss. In fact I consider myself very fortunate for stumbling on this information as it may be very helpful for someone I love and I want to explore every possible way that can help.

It's not fear, it's challenging a conclusion made by people based on their credentials. If the science stands up to scrutiny and peer review, then great, but if it doesn't then it's not true.

The quackery label comes in not from the science but from the people behind it and the monikers / titles that they applied to themselves - unrecognized and not formally tested monikers / titles.

The formal testing is so that there's a proven and traceable minimum knowledge and background behind a person's statements. Like a bachelor's degree for a software engineer vs a two week boot camp.

Re: Significant breakthrough in search for Parkinson's biomarker

#97

Post by Cthulhu_ »

tgv wrote: post #84
canadiantim wrote: post #56

Earlier quoted context omitted.

My pet peeve is people dismissing potentially very valuable scientific results because they’re afraid of quackery… Yes we should be cautious but no we should not dismiss. In fact I consider myself very fortunate for stumbling on this information as it may be very helpful for someone I love and I want to explore every possible way that can help.

Do explore it, but check other (reputable) sources for the effect on Parkinson and for counter-indications (although there don't seem to be obvious ones). The journal, however, is bad. Looking for articles, the first I found claims that sounds of nature have a positive effect on gambling addicts, something unwarranted by the actual experimental conditions. The peer review and editorial process seem to be lacking.

I mean sounds of nature have a positive effect on most people so that sounds like low hanging fruit, lol.

Re: Significant breakthrough in search for Parkinson's biomarker

#98

Post by SnowHill9902 »

techwiz137 wrote: post #41
EvanAnderson wrote: post #17

Earlier quoted context omitted.

What would you do if you found out you would? (I ask as someone whose great-grandfather, great-uncle, and grandfather all had Parkinson’s.) I’ve avoided any testing because, as far as I know, there’s nothing preventative to be done. I’d love to hear otherwise. I’ve broached the subject with my last two primary care physicians and both advised that there was no point in knowing.

If you know for certain, then you might do things you otherwise wouldn't. E.g decide to have children or not, plan a will. Live life to the max. Potentially get a head start on treatment if one were ultimately available, even if super experimental and maybe even not working in the end. Honestly, there are many reasons to know beforehand and not a lot of reasons to not know.

Parkinson’s does not prevent any of those.

Re: Significant breakthrough in search for Parkinson's biomarker

#99

Post by mypalmike »

oefnak wrote: post #30
cycomanic wrote: post #14

Earlier quoted context omitted.

https://www.michaeljfox.org/news/thiamine-vitamin-b1-and-par... The Michael J Fox foundation is more muted and says evidence is still missing. There have only been 2 trials and both were missing a placebo control group.

Imagine having Parkinsons and being in the placebo control group.

Being part of a rigorous process by which a cure may be found? Sign me up.

Re: Significant breakthrough in search for Parkinson's biomarker

#100

Post by glfharris »

mwbajor wrote: post #87
c_hagau wrote: post #36

Earlier quoted context omitted.

Published in the "Journal of Integrative and Complementary Medicine", "The leading peer-reviewed journal providing scientific research for the evaluation and integration of complementary medicine into mainstream medical practice." "Integrative and Complementary Medicine" is a fancy way of saying quackery. Also, the video you linked to is on a channel run by a person describing himself as "a certified functional medic…

You know what you're right. But not far behind these quacks are neurologists. If you've ever had someone in your family that might have had Alzheimers or Parkinsons you'll know what I mean.

I think that is being unfair. It's the sad reality that for many neurological conditions we don't have good treatments or cures. However, things like levodopa are godsends for many with Parkinsons, for example.
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