...others who are on here are "real" scientists or doctors. That is, they have credentials recognized by society.

How about the formation of a think tank made up of such pwp as members and the rest of us as associates? The group could function through issuing reports and position papers through the Net and media. Topics like the case for the role of the BBB in PD or the need to accelerate research on green tea or turmeric or choline etc.

Position papers on the need for a new way of crash testing promising things by pwp once toxicity was ruled out. Say 500 pwp taking standardized curcumin for a year and 500 controls. All filling out a monthly report. To hell with the FDA and such.

The associates must have some media veterans. Enlist them. Make it a good story. etc

There are about five or 7 ladies on this board who have are more literate in the study of PD than I am. It is obvious that they spend hours and hours going through what they can find on the web and have become excellent researchers, ones that our "society should recognize" and give them all due credit as if they had a Ph.D after their names. They are the real "grassroots"; I'm more like a big "grass-stalk", blown over by the wind at that .
Credentials recognized by society eh?. That's always a problem, society is so blind to science that they can barely recognize the words used in it's description, let alone "pick a champion". BY this , i mean that there are some pretty big named neurologists on MJF's team as heads of research, who are old and just about as foggy as I am . Money for nothin and your patients for free .
WE'll do what we can of course , Rev, like dextromethorphan and maybe in the future, a systematic search for other opiods with the "phenanthrenyl" structural backbone. But despite all the exuberance to step forward and be guinea pigs for the limited tools we have, we really can't do much.
And we have a group called the PD "pipeline", those who really participate in it regularly bring up useful new information right here on this blogg. And they work pretty hard, once again for little recognition for their hard work.
And public scorning of the FDA will bring the hammers of the DEA down on our heads. So Rev, it's just not that simple. Guys like me can sometimes see whats happening in the bigger picture, and I can speak the noospeak scientalk, but i'm so burned out from a life of having learning by the libraries full, often stuffed down my throat, that the best that I can do is make a good "pate de fois gras" out of PD research; something good to swallow with a glass of wine while reading this blogg, but ending up as so much waste in the morning, . cs

1. Parkinson's Disease.
2. For example, Paula and Carolyn. And Peggy.
3. MJF = Micheal J. Fox (a guy with PD and a lot of friends). Has one of the best websites on the internet at www.michaeljfox.org .
4. A cough supressant. Why anyone would want to suppress their cough unnecessarily is beyond me (this is Jaye talking in these footnotes, not cs). Personally, I want to have a good, unencumbered cough reflex next time I choke on my soup. Not to mention the inherent lung problems of people with PD. ol' cs explains about dextromethorphan in another thread.
5. ol' cs may be havin' a chuckle about "me-too" drugs and other subtleties too numerous to mention. At least he made me chuckle.
6. Except volunteer for clinical trials (drug testing) and other research, if we have the self-discipline to comply with the research protocol (follow the rules).
7. www.pdpipeline.org which our own pdc founded and directs.
8. Personally again, I've been wondering who would buy the malthinking insurance for this outfit. And the wine!

Okay, I'm a smart-mouth today. Oops. ol' cs is brilliant enough for both of us.

Jaye

To think that Dextromethorphan actually surpresses a cough is a myth..

'ol Cs wrote, I pretty much agree with him, Rev.

I can read the technical literature and understand it pretty well and then try to interpret it and relate it in less technical language, but to presume to conduct any kind of controlled study in this format is not something that I can do.

Every time I make suggestions about the use of DM, I make certain to cover my non-MD tail with a "I am taking DM as a personal experiment and do not recommend that anyone else do so" disclaimer.

I depend on you guys to keep me informed and realistic about the practical limits of what we can accomplish here, and I am most greatful for that!

"Issuing reports and position papers through the Net and media" - Scientific databases such as PubMed certainly wouldn't include it due to their submission requirements. Even numerous well established scientific journals can't get on to PubMed and other scientific databases. You would probably end up with some report being published on the Interet jungle along with billions of other web pages that few but those involved would ever read.

"Topics like the case for the role of the BBB in PD or the need to accelerate research on green tea or turmeric or choline etc." - The idea of a defective BBB being the cause of Parkinson's Disease is contradicted by dozens of established scientific facts. Green tea, turmeric and choline do nothing to increase dopamine levels. It's easy for somebody to take green tea, curcumin and choline every day for a year. Somebody who starts off with PD would still have PD a year later. Issues such as these are already being pursued, and due to their weak scientific rationale, have little to show for it. If you want to pursue medical research then its rationale must stand up to scrutiny from the outset. It must be consistent with known facts. None of these are.

"Position papers on the need for a new way of crash testing promising things" - This sounds like you want other people elsewhere to do the testing. Funders and researchers all have their own pet projects that they would no doubt carry on doing instead.

"Say 500 pwp taking standardized curcumin for a year and 500 controls." - Curcumin has already effectively been tested. All their life, the Parsi habitually consume Curcumin as part of their daily diet, yet they have the world's second highest prevalence of Parkinson's Disease.

I won't apologize for being strident since that was my intent. Once a Southern Baptist, always etc

But my goal was to provoke discussion and simple criticism does little good. As to the specific suggestions I made, those were for illustrative purposes only.

So, I repeat: Who has a better idea?

PS- Daffy, while the rest of us have to struggle against apathy, you don't. What would you suggest?

Rick, a long time ago I found out the hard way that most of the medical establishment (the pharmaceutical companies, the medical professions, the medical journals, the medical societies) know about as much human biochemistry as you could write on the back of a matchbox. Their first three priorities should be (1) the patients, (2) the patients, (3) the patients. Their first three priorities are instead (1) money, (2) their egos, and (3) conservatism to the point of obvious illogic.

What do I suggest ?

First, know your subject. Get a thorough knowledge of human biochemistry, which is what I spent over ten years and twenty volumes doing. I then spent a further three years, morning til night, on doing nothing but piecing together the complete biochemistry of Parkinson's Disease. With a thorough knowledge of human biochemistry, 99% of medical theories can be dismissed from the outset as the obviously flawed theories that they are.

Second, once you have worked out your rationale, patent it. The people with the power to do anything in the medical world will not touch it without patents, because without patents they can not make anything out of it. That's why I went through the infuriating and disgracefully expensive patent process in order to get patents granted around the world. If you had an unpatentable cure for cancer, it wouldn't get anywhere. That's the blunt reality, even though it never should be.

Third, clinically test your theory. Nobody believes anything in medicine until you prove it. Unfortunately, clinical trials can be prohibitively expensive. Their cost is the biggest stumbling block in medicine. Somebody who has PD at least has an advantageous starting point because they can test anything on themselves. We have been able to get clinical testing arranged in three different countries, including a famous University in the U.S.. We have already seen a continuous ridding of symptoms in people with Parkinson's Disease after long term use.

A summary of my views on the causes of Parkinson's Disease are set out here : especially on the biochemistry section - . It is a brief extract of what I researched. It has been my view since I first examined Parkinson's Disease over 25 years ago, that the long term, rational and scientific means of dealing with Parkinson's Disease (when it is not a Parkinsonism or due to toxicity) is to first provide the constituents that the body normally uses for the formation of dopamine, and to then gradually reduce the drugs that interfere with dopamine formation, the worst of which is L-dopa. This is a lengthy process, the first stage of which could take up to a year, or even two in severe cases, the second stage of which at would take a few years in those people that are taking a lot of PD medicines

Twenty volumes, endless discussions, and twenty five years later, I have yet to see anything that contradicts this. In Parkinson's Disease people are instead unfortunately going for convoluted and flawed theories that don't even address increasing insufficient dopamine formation, which is the fundamental problem in Parkinson's Disease.

I was recently able to get six month's worth free for somebody we know. If you want to start gradually reducing your symptoms rather than living off green tea, choline and curry for a year, then e-mail me and I'll try to arrange the same for you.

[QUOTE=reverett123;97761
So, I repeat: Who has a better idea?
[/QUOTE]

Do you only want to trade on our scientists' status and not to learn from their teachings? If we were to have a dialogue, I would have hoped you would also have read the links I give and look at the proven knowledge of other longtime forum members with an open mind.

Until then, I withdraw from this conversation.

I'll go back and highlight my best idea for you.

Jaye

My intent was more to spark discussion than to push a particular idea. Didn't mean to fling stones, etc.

But it IS a shame that such a talented group can do nothing but watch the sands of the hour glass.