For everything and anything else not covered in the other WED/RLS sections.
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX


Postby jumpyowl » Thu Nov 25, 2004 6:05 am

All I can say is that I tried at Long Beach. My impression was that the patients present responded and were interested. Our own appeared to be less so but somehow we missed getting together after the talk. I still do not know what happened. BeCat swears that they were waiting for me, I was not exactly sure where.

The reaction of the RLS leadership was even more puzzling. Apparently nobody attended. The faculty was not notified. I only learned about it accidentally (!) Fortunately, I had a chance to talk with the chairman of the board of directors who appears to be a wise, reasonable person with RLS. I sent him the material.

I also talked with two Ph.D.'s from the faculty who both impressed me. I have not sent them the material yet but definitely plan to do so. One faculty, MD, was clearly impressed by BeCat's work. BeCat did an excellent job starting off the presentation.

I am glad Rubyslipper has become a groupleader. She brought her husband as some others did, too. Anne was helping out, too.
I had absolutely no time after the meeting!

I had only two days after the CA trip to get ready for Puerto Rico. I was still working in my son's place in Tyler near midnight. He took the disk down to KINKO's and they made the poster units just before they closed. I slept a couple of hours before I headed for the airport 120 miles away.
Had to change planes in Atlanta, GA. Arrived in San Juan early afternoon, the bus took us to Fajardo so we were in the hotel by 6 pm.

Then the "fun" started. Most people have not seen me for 5-20 years (I organized a similar meeting in November, 1984). However, this was a huge affair: 250 scientists from 24 countries (in contrast ours was 110 from 12 countries but on a shoe string budget). This one was a lavish affair,

Much to my pleasure, some groups attempted to continue in our foot steps although the official "party line" turned away from the straight and true in the nineties.

The closing remarks came as a surprise: no less than five speakers mentioned our efforts in 1984 and at least one (the major fund source) regretted that it did not continue that way.

I apologize for elaborating on this seemingly unrelated event. However, I see too many similarities with RLS. It will also will put large demands on my time in the next 5 months (full of deadlines). I will attempt to turn this leviathan away from its present course. It is an impossible task for one person but I think I will have help; both financial and personal help in the form of young researchers who are not satisfied with the present course of events. The research appears highly sophisticated and successful. But I learned with you my RLS friends to look at the bottom line - the patients.

It is very clear that those patients, after twenty years are no better, and some of them are worse off. (politics in science will do this .) After spending billions of dollars in research, those doctors do not say any more (not often) that it is in their head, but either throw their hands up, or actually employ inappropriate treatment for their patients while the research gives confusing signals.

Sorry, I really diverged. but I want you to understand that if I post less in the next few months why I am doing it. After 6 months, who knows, possibly even the attitude of the RLS keadership may change.

As I do not give up easily. The on-line questionnaire will stay on until a considerable number accummulates which then will be evaluated. NOW these numbers and type of calculations are the one that will matter, as I stated in my talk. THEN we shall see how we could disperse the info.

ANOTHER: Since I will be no longer notified if someone writes a post to me, please notify me of that by private e-mail. I will always have time for you my cyber friends.

One more thing, if something interesting happens in my course of treatment/reaction I will also post that. I just will not be able to read this admittedly busy site regularly. And that I will truly miss as well as all of you.

Jumpy Owl

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