Thread: The MJFF
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Old 10-01-2012, 07:44 AM
soccertese soccertese is offline
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soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
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Quote:
Originally Posted by Conductor71 View Post
My question is why are we arguing about this and ignoring that due to rigid, dogmatic thinking we have barely scraped the surface. Without people questioning the status quo we will get nowhere. I think that is what PWPboy is trying to do but he just over channeling frustration to MJFF. (BTW, I am truly appalled at how he is being treated here.) In a way it is a compliment to say hey we you have done such a great job, don't stop there we expect more of you. Backhanded but still a compliment. I see this thread by being dominated by pragmatists or doers, but we need each other to lick this. Without dreamers or risk takers we would end up getting nowhere.

Perhaps we do not need to keep throwing money at scatter shot research that goes fallow. We need someone to organize and manage research beyond cute, marketable groupings like Rapid Response or Fast Track. We can send a man to the moon but go limp and become helpless in the face of finding, not a cure, but even accurately labeling PD as prion, autoimmune, etc. I thought disease was classified and studied based on commonalities - that is the most basic scientific endeavor to identify, label and organize. It is two centuries, and we are just now studying Charcot's vibratory chair and still cannot determine that with the myriad genes involved and the many different pathologies that maybe we should not treat it as one disease entity?

It took Marshall, the scientist who discovered that H. pylori bacteria causes ulcers 25 years to have colleagues concede he was correct and he had to make himself sick, and treat with antibiotics to be acknowledged by his peers. A scientist in the 50's proposed the same hypothesis. Both were shunned. Why does that happen? We need people questioning. Cures do not usually result from beating a dead horse.

I am not blaming any one entity but looking at this from a larger perspective. If society truly prioritized ending disease and suffering we would not be here heatedly discussing this now. Do you think when they shot for the moon they just dumped a bunch of money to academics and said here do this, find a way? No we ended with NASA, a dream team of experts who had a guided mission.

Health and Disease are commodities to be bought and sold. Space travel is good for us all or so goes the propaganda. This is why we still have millions dying of malaria. Methylene Blue derivative was shown an effective treatment in 1910. Can anyone give us a good reason it has not been fully explored and developed? It is now just in clinical trial. I don't buy the it is just slow theory. There surely is no risk of contracting a prion disorder.

http://="http://www.news-medical.net...bs-the-spread-

I can say if we had a disorder growing by alarming proportions of men (and women) who all of a sudden loss the ability to experience sexual pleasure we would have the equivalent of at least three NASAs working on it. I think the level, funding, and design of research would be entirely different. This is tongue in cheek but you get my point.

Disease is an industry in our economy and to think that people do not profit from it even though in a non profit endeavor is a bit naive. The difference is in the corporate sector money is allocated to generate profit. In the research world money is allocated to generate more research. If a cure happens to be "discovered" along the way oh lucky day. We are supposed to believe that with no structure, oversight, meta-analysis, and sharing that a cure will emerge from this chaos? Scientists could be tripping over a cure every day now but how would they ever know it? Business people know this is essential to reaching a goal. We have multiple individuals in form of scientists not sharing information and overlapping or replicating the same studies. They all have the same goal what is needed is team effort and a game plan. This along with rigid thinking is why things move at a snail's pace.

If you want proof that a better alternative does not exist look at what 23andme has accomplished in three years. They have applied for a patent on a novel treatment for LRRK2 PD carriers. I am thankful we have MJFF, but we need more outside the box larger picture thinkers like the Brins if we want to see real progress. They get that it takes dreamers and doers to see change.
imho pwpbody stepped way over the line with his accelerating attacks on the MJFXX that could not be substantiated and for which he became more beiligerant when anyone responded in their defense. i think the administrators warned him a few times before banning him.
personally, i think there is a lot of research going on in pd that is not profit driven and the biggest problem is finding clinical trial participants, it takes forever.

i totally agree we should have a moonshot for pd and also for alzheimers, which will bankrupt this country unless a prevention is discovered. i'm not holding my breath for a cure for either. but if you use cancer as an example, they are predicting they can turn it into a manageable disease and just a few key findings have turned the corner on that disease(s). it's too bad this world wide economic crisis occurred, it has diverted funding and attention from healthcare research and developing comprehensive research strategies. hardly a peep from either candidate on direct funding for disease cures/prevention to lower our healthcare spending, someone with a chronic disease is very expensive to treat over their lifetimes

let hope MJF's tv show has a long run
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