Team to study the epidemiology of Parkinson's Disease

[Conductor71]

Originally Posted by soccertese

john, i'm not a moderator and got kicked off the board once for rudeness but i again have to express my OPINION that what you are trying to accomplish is more for you than for anything that might really help people with pd and could actually do harm.

Soccertese,

I appreciate what you are saying, but I don't think the goal is to replicate research design on the same level of a PhD biologist or to present info in any other manner than that of informed lay people. What we are interested in is looking at what the scientific establishment ignores which is chiefly what is going on with us. This is more a commentary on the sad state of research and a way for us to participate and potentially make a difference.

Have you heard of the "Black Swan Theory"? Its central tenet is that major discoveries happen randomly and rarely often in an undirected and unpredicted way, so why not put the info out there? Who knows what might be discovered buy looking at the anecdotal stuff like symptom alleviation at high altitudes, pregnancy worsening PD etc. They may not mean anything to our doctors, nor is this sort of info probably even known in the research sphere. We cannot get anywhere with it, but someone else may just run with it. In that sense, I don't see this as a project clamoring for the approval of the establishment. It is more a place for outliers and any independent or brilliant thinker not constrained by rules or tradition. It is to fill in some of the void created by 50 odd years of research based still on conjecture that loss of dopamine alone causes PD. It does not matter whether a person has ties to PD or not, we just need to get the info out there. We may not figure into a a "Eureka" moment, but even someone putting together some of the puzzle pieces would be nice.

That being said. Please give people a little more credit. Smoking is neuroprotective so says the popular media, but I don't hear of smoking stats increasing based on this, and I especially have never heard a PWP pick up the habit. Please read about flawed statistics here:


Cigarette smoking and Parkinson disease: the illusion of a neuroprotective effect.


In other words, just because a person has an advanced degree does not automatically confer them expertise in research design and statistics. This researcher has generated fallacious info that has been widely disseminated and now thought of as fact, and he spent a lot of someone else's money to do it. How is this any better than Johnt's idea?

Laura

[soccertese]

Originally Posted by Conductor71

Soccertese,

I appreciate what you are saying, but I don't think the goal is to replicate research design on the same level of a PhD biologist or to present info in any other manner than that of informed lay people. What we are interested in is looking at what the scientific establishment ignores which is chiefly what is going on with us. This is more a commentary on the sad state of research and a way for us to participate and potentially make a difference.

Have you heard of the "Black Swan Theory"? Its central tenet is that major discoveries happen randomly and rarely often in an undirected and unpredicted way, so why not put the info out there? Who knows what might be discovered buy looking at the anecdotal stuff like symptom alleviation at high altitudes, pregnancy worsening PD etc. They may not mean anything to our doctors, nor is this sort of info probably even known in the research sphere. We cannot get anywhere with it, but someone else may just run with it. In that sense, I don't see this as a project clamoring for the approval of the establishment. It is more a place for outliers and any independent or brilliant thinker not constrained by rules or tradition. It is to fill in some of the void created by 50 odd years of research based still on conjecture that loss of dopamine alone causes PD. It does not matter whether a person has ties to PD or not, we just need to get the info out there. We may not figure into a a "Eureka" moment, but even someone putting together some of the puzzle pieces would be nice.

That being said. Please give people a little more credit. Smoking is neuroprotective so says the popular media, but I don't hear of smoking stats increasing based on this, and I especially have never heard a PWP pick up the habit. Please read about flawed statistics here:


Cigarette smoking and Parkinson disease: the illusion of a neuroprotective effect.


In other words, just because a person has an advanced degree does not automatically confer them expertise in research design and statistics. This researcher has generated fallacious info that has been widely disseminated and now thought of as fact, and he spent a lot of someone else's money to do it. How is this any better than Johnt's idea?

Laura

laura,
if you carefully read my previous posts, i said i was mainly worried about trying to do statistical research on databases, that was better left to experts since it is very easy to find false correlations and if you reported those on this message board you could do some harm. i also stated i was all for sharing personal experiences and opinions and gathering those into a database. i'm well aware that in many rare diseases non scientists have made advances, i saw the movie "LORENZO'S OIL." As an aside, it seems with the efforts of the MJFF, any good research idea will get noticed.