Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Significant breakthrough in search for Parkinson's biomarker

michaeljfox.org

Post reply on HN
Print view View original

71–80 of 196 posts

Re: Significant breakthrough in search for Parkinson's biomarker

#71

Post by sokoloff »

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.

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.)

Re: Significant breakthrough in search for Parkinson's biomarker

#72

Post by DavidPiper »

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.

I used to share this sentiment for Parkinsons and other currently-intractable conditions. I still do sometimes, depending on the circumstances of the patient in question.

But the thing that stopped me generalising this was seeing second-hand that trialing a new treatment can be extraordinarily dangerous (and/or fatal).

Imagine being in the experiment group and the untested treatment being a catastrophic failure.

Re: Significant breakthrough in search for Parkinson's biomarker

#73

Post by insanitybit »

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.

This isn't an unfounded fear of quackery, they've supported their view to an extent.

Re: Significant breakthrough in search for Parkinson's biomarker

#74

Post by canadiantim »

sokoloff wrote: post #71
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.

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.

Re: Significant breakthrough in search for Parkinson's biomarker

#75

Post by nequo »

pyryt wrote: post #44
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?

[flagged]

Why feed yourself with potential misinformation that you don’t know the true source of and you might never double check?

Re: Significant breakthrough in search for Parkinson's biomarker

#76

Post by techdragon »

sokoloff wrote: post #71
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.

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.)

The problem is the lack of incentives to take the “huh that’s interesting, but I don’t know if I can trust it because it’s published in a quack journal” … and ever reproduce the research and get it into more trusted more prestigious journals.

There’s a reproducibility crisis in many fields of research, and medical research has multiple confounding factors, the “no prestige in just redoing the research”, lack of money for trying things that might fail to generate RoI for pharmaceutical companies, and the general medical research problems of clinical trails and ethics review and all the other stuff involved in good quality medical research.

Consequently this stuff gets thrown in the quackery bucket and ignored. It’s frustrating to see things that won’t hurt anyone to try again and properly debunk or expand the evidence for, winding up in an ideological trench war where the outcome is getting to enter round two of the “funding your actual research” trench war.

Re: Significant breakthrough in search for Parkinson's biomarker

#77

Post by andreskytt »

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.

You did not, in fact, stumble upon information. You stumbled on a person making statements. There’s a difference, especially when lives are at stake.

Re: Significant breakthrough in search for Parkinson's biomarker

#78

Post by insanitybit »

giantg2 wrote: post #45
_qua wrote: post #20

Earlier quoted context omitted.

No way. About five years ago there was a quack-y study about reducing death in sepsis which called for high-dose vitamin C, thiamine and steroids. None of these are patent protected. The first study purported to show a 100% reduction in mortality. There were many RCTs done after this which did not bear out the effect, and it has now essentially been proven to be ineffective. it is possible to fund studies without ind…

Who actually thought that steroids help with an infection? Don't those usually make you more susceptible?

I've taken steroids when I had a virus because the symptoms caused by the virus were severe. The doctor made it clear that I should take it as little as possible, but it was "your throat is going to close up OR it takes a little longer to get better".

Re: Significant breakthrough in search for Parkinson's biomarker

#79

Post by ethbr0 »

bitL wrote: post #67
jtbayly wrote: post #10

Earlier quoted context omitted.

If this Was discovered 10 years ago, I’m assuming it must be fairly limited in helping, or the results haven’t lasted or something?

Most doctors would laugh at vitamin supplementation even at pharmaceutic megadoses despite people reporting they feel much better. I have seen both GPs and a neurosurgeon laughing about it.

When in doubt, just throw the kitchen sink at the problem.

https://www.hangoverkw.com/

Re: Significant breakthrough in search for Parkinson's biomarker

#80

Post by ethbr0 »

nequo wrote: post #75
pyryt wrote: post #44

Earlier quoted context omitted.

[flagged]

Why feed yourself with potential misinformation that you don’t know the true source of and you might never double check?

> Why feed yourself with potential misinformation that you don’t know the true source of and you might never double check?

Because I enjoy reading HN?

Post reply on HN