Quote:
Originally Posted by Conductor71
Soccertese,
I know that you realize that the criticisms you level at John't endeavors to collect data apply to most PD research in general, so with all due respect what is the issue. I do not think that we plan to publish the results in a peer reviewed scientific journal although this is what happens everyday with what passes as reliable and valid data in the research community.
As far as the scientific method goes...it seems to be resulting in scientists reaching a lot of similar or like conclusions but when is the last time a tested proven hypothesis made a difference in your life or anyone else who currently has PD. How many more articles do we really need to know that agonists can cause aberrant behavior? Do I need to hear one more time how my smell is supposed to be impaired?
The problem with the scientific method is that it is excruciatingly slow; has narrow foci, and largely over looks the patient. We hold answers but who is asking? Sergey Brin has made public the deficits in PD research and calls progress "glacial". I can't speak for John, but I support his endeavors because collecting this data is reason enough; there is no need to "prove" anything or hypothesize. That is being taken care of already.
This is about trying to generate data and analyze looking for patterns. Sergey Brin calls the results of what we are doing "noisy data" which most scientists hate, but it is the warm, fuzzy, lifestyle kind of data that show patterns and correlations. These things cannot be discovered in a test tube or in a lone study with 20 PwP. In essence, he started the 23andme PD cohort to collect random data; he has already shown that in breaking the rules you can reach the same conclusions as our elite scientists but in a fraction of the time (6 years for traditional approach and 8 months for Brin's algorithm). Given the differences, I'll sign on with the research misfits. At least there I can feel a little less helpless and frustrated. Maybe that is reason enough for most of us.
Laura
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conductor, please don't put words in my mouth, i am not criticising pd research or medical research, i am just stating an opinion about john's work and suggesting caution. imho it's not research, it's entertainment. the early scientists like pasteur, fleming sure didn"t run huge clinical trials, they couldn't. countries less wealthy than the u.s. don't have the huge university/medical institutions where publishing/getting funding is at times more important than bringing a treatment to clinical trials, i remember watching a congressional hearing on adult stem cells, senator brownback was chairing it, and they had a researcher from portugal testify who had implanted nasal stem cells into the spinal cord of 2 paraplegics, who actually testified, and was getting some results. at the same hearing, they had a professor from the university of mississippi doing similar research who was still working with mice. the portugese researcher had no funds, had to use his own money and experimented on guinea pigs initially, so yes, i fully understand a lot of research is "make work". i did a completely useless research project in grad school, measuring phytic acid in oats. but i did get valuable experience in designing, conducting an experiment and getting results published, so a lot of these research projects have some value if they train grad students. not everyone grad student can do nobel prize work.
darwin's contributions to science were mostly from observation but he at least had theories he was trying to prove - he actually did do some chemistry experiments, he discovered plants produce a "hormone" that encourages growth but is inactivated by light.
but with the failure of so many phase2 trials lately when phase1 results were so good tells me that we need more science, more understanding of how neurons work, not more "fuzzy" science.
now, even 1 person trying grapefruit juice is research imho and i think the that type of trial/error is wonderful. if it only helps one person that's fine as long as there are no potential side affects that might hurt someone.
23ANDME is doing DNA analysis which i assume will lead to much better success in early diagnosis. considering that it cost 100's of millions to analyze the complete human genome i wouldn't call what brin is funding as "fuzzy", it's as technical as it gets.
having had a brother die of lung cancer recently, i appreciate the potential of understanding the genes involved with starting/stopping disease as much as anyone.
my point if some stranger on this board gets people involved in some "research", then we have every right to know what the purpose is and what will be done with the data, regardless of how harmless it may seem. were're being asked to link to an unknown website, open tabs, etc. i guess i'm just a little more cautious than you are.
now i'm always interested in trying something suggested on this website, god knows i;ve tried everything from chelation to I.V. glutathione to muciana. i appreciate when someone suggests something. but i see absolutely no value in what john is doing except as entertainment. so we disagree again. what's that, about 10 times?
