This Is MS Multiple Sclerosis Community: Knowledge & Support

billf, I think I'm contributing even if you don't. This thread started with someone saying that there should be an effort to pick a new NMSS research director who isn't a drug company stooge (whatever that is) like the current one (no evidence offered). The new person should be "MS-afflicted," and should be from outside of the NMSS.

You seem to think that disagreement with that is somehow non-productive. I disagree with your disagreement.

Hey, at least you know they're genuine given that I'm not too hesitant to pull out the flame thrower. Don't you just hate it when everyone is so scared to disagree that they wind up thanking total morons for their thoughts? Tends to devalue the currency.


Hey Deb, I will let you in on a little secret. I'm a love-him-or-hate-him kinda guy.

I just noticed Willy's recent edit.



I have noticed and wondered about this very same issue. My former MS neurologist (thinking out loud) said "This has never been compiled before." Indicating to me, at least, that there may be a definite problem with lack of information exchange among researchers.

Isn't that a shame, if proven true?

Having worked in the corporate world myself in the past, I have noticed that this held true in many areas of departmental and responsibility fractionation, if you will. It does take a certain level of teamwork skills and discretionary ability in keeping the appropriate people "in the knowledge loop"; which appears to be sorely lacking in many arenas these days, not only in the medical world. Perhaps from a lack of effective leadership; lack of training? I'm not sure.

Any comments or alternative viewpoints?

Deb

willysnout, all that I am asking is that we constantly push towards the advancement of the cause we are here for. If you believe you are doing that, then great, keep it coming! I think you know well enough when you (and others) have crossed over the line.

here's a possibility i found on paul jones' site. Not a prime candidate, but amazing proof that someone with MS disability can be very active both as a scientist and an administrator:

Richard Radtke: http://www.seaofdreams.org/radtke.html

also, a leading NASA physicist named Natalie Mandzhavidze died 3 years ago of MS complications. anyone familiar with her story, and know if she has a family member, spouse, or longtime collaborator who has a similar reputation and would want to take up the torch for her?

I think the whole information thing is a real challenge. Organizations of all kinds are struggling with it. What often happens is that they put in all these computer systems and then people start sending e-mails to general distribution without realizing that 120 other people are doing the same thing every day.

Pretty soon you have gridlock. Then someone steps in and purports to organize it all, but all that really winds up being is one person's idiosycratic mental map that ultimately wastes everyone's time and becomes a huge intrusion masquerading as rationalization.

I don't know the overall answer, but I do know that when I was working I ditched the Blackberry and put a whole lot of people on the auto delete list.

What criteria did you use in determining which people to put on the auto-delete list, Willy? Was it via subject matter, job responsibilities that didn't directly relate to nor impact yours, pattern of nonsense (I tend to apply that one, unfortunately - I automatically delete, without opening, co-workers' love of chain letter emails, etc. - I never have gotten "rich" yet...hehehe); or what principle exactly did you find most effective?

And in applying this discussion to the NMSS and evaluating and narrowing down our true qualifications "wish list", what perspective would we like to see a leader exhibit or apply that we think would help in correcting such a gridlock and would foster effective information exchange?

It's funny this comes up, because at one point, Coetzee himself mentioned quickly to me (when expressing his apologies for inadvertently somehow missing one of my emails to him) something about the recent amount of "spurious" emails that arrive, and how difficult that made things. I remember that I did find that a curious and unusual choice of words on his part, but didn't dwell on it. I simply stated that I could relate, which was true, of course. He wasn't complaining, just making a factual statement.

"Gridlock"....."intrusion masquerading as rationalization"........very interesting.........that struck a chord with me. I'll need to think about those comments. Something feels familiar (like I've experienced that myself before or something. Or maybe that's what has even been happening recently where I work. hmmmmmmmmmmm) And what were/are my own reactions or thoughts about how to correct same? I'll have to ponder that one!

Deb

It was idiosyncratic. As soon as I got enough irrelevant messages from someone, I'd ask myself whether anything they said would ever be relevant and if it was, whether there'd be much of a cost in missing the message.


I don't know that there is the same gridlock at NMSS that there was at the place I worked. The implicit assumption behind Boston Cure's map is that information exchange among MS researchers is deficient and that it can be corrected, at least partly, by this map. Another implicit assumption is that an overview of MS research is essential. Another assumption is that, prior to Boston Cure's map, there had been no acceptable overview available to those who needed it.

I take no position on these assumptions other than to note the possibility that the map will ultimately serve as not a lot more than a means of satisfying Art's curiosity about the overall direction of MS research. He's put this map out there, but is it a solution without a problem? I'd be interested in a non-defensive reaction to this idea from Art, if possible.

An often-heard reaction to questions like mine goes along the lines of, how can any information be bad? The answer is that duplicative information can be distracting. And then there's the cost of generating it. Maybe the resources should go elsewhere. Again, these are questions not accusations.


After a week-long trip out of the office I would have literally hundreds of e-mails. And that was after I had applied my filters. The solution to information gridlock is elusive. By the way, prior to e-mail I remember coming back from a two-week vacation and arranging my mail in two piles. Each pile was five feet tall. I called everyone into my office to see the World Trade Towers.

Well, I give you extreme credit, Willy, in not suggesting that your way may be the correct way for all (nor is mine). As I believe you were saying previously, what works for one, may not work for all. And therein lies the rub!

So.....conclusion on that one being that at this point in time, there may be no adequate answer or suggestion that would encompass the majority effectively (?) Ok, I can understand that one.

I have to admit that I am totally uninformed about the Boston Cure or their "map", so I am unable to speak intelligently about that. (That's assuming I ever speak "intelligently" in the first place...HAH!) Now you've really tickled my curiosity! Looks like I'll have to become more fully informed, so I can express an opinion. hehehe............

Onemike: I'm afraid I am totally unfamiliar with either of the two people you mention. (I don't get out much. ) When I have a moment, I will visit the link you posted. And thank you, also, for your very kind comments.

And truthfully, I would like to think that all of this discussion will not prove to be just an exercise in futility. In my experience, a professionally written correspondence to "powers that be" (and in our case, that's the NMSS) expressing (as neutrally as possible) our wishes and recommendations can and does often prove influential.

Well, enough of me for today, I think. Lunchtime is over, but I just had to post one last time.

One last question to throw out there: Why does MS research appear to be so fragmented? I mean, on the one hand, it would just about have to be, I suppose; but then again, might that not only foster confusion? I know it does me.

I do believe, though, that I see signs that the NMSS is attempting to pull more researchers together as groups or teams. Their most recent research initiative and invitation to researchers was to apply for the grant as a "group", and specifically encouraged (or should I say "required") that for this particular grant funding, that researchers needed to partner with others in the same field and also encouraged those groups to include international researchers.

So....is there an attempt after all by the NMSS to pull together MS research and foster more effective information exchange?

My unsolicited opinion? I'd say yes. Will it prove to work? It just might!

Later, all!!

Deb




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People love to talk about "integrating" and "teanwork" and "overcoming fragmentation." Who can be against those things? It kind of like being opposed to peace, or when someone pleads for peace being so churlish as to ask, "Um, excuse me, but what are the terms?" See, there's is a flip side to de-fragmenting research: The loss of independence and innovation. There's a flip side to teamwork: Group-think and politics.

Fragmentation is another way of saying "competition." It's all a balancing act. You can be too fragmented, or you can be not fragmented enough. Hard to say that the situation is in the MS arena. It would be good to have someone with some knowledge of the situation take a whack at that question.

Sorry, time to leave the board.

-finn

AH! "Extremist thinking" at its best!

Doesn't politics reside in any form of expression? Whether it arise from groups or from individuals?

And for every action, there is a reaction. But, does the origination or initiation (whether from a group or from an individual) necessarily dictate results in absolute?

Are you referring to a form of mass hysteria? Or that teamwork must lead to dictatorship?

Then are you saying you do support an "overview" methodology after all, as opposed to a teamwork approach? And what exactly does or would the terms of that methodology consist of?

It's all in the balance. Albeit a delicate balance, but a balance nonetheless. Idealistic? Perhaps. Impossible? No.

Defragment people, not their ideas and innovations, nor even their independence. Encourage, motivate and support, not dictate to.

I'm talking about "exchange", not complete "change".

(You just HAD to throw out that last challenge, didn't ya, Willy? hehehe............... Can I simply affectionately call you a brat?!)



Deb

Oh...for heavens sake! DON'T tell me Willy and I just agreed? hahahahahahaha............. (You were editing, while I was responding.)

So, CONCLUSION: We might like to see the new VP of Research to be someone with "balance".

Finn: Thank you for the welcome. I agree with you, also. I certainly I hope I'm not part of the OT problem. I do tend to veer off, but I attempt to then apply what I've learned during that side-track back to the issue at hand. I hope I succeed! And Finn, I sincerely love this forum, and highly respect and enjoy reading your posts!

Now.......I'm off again.

Deb

or...I just didn't, for some reason, get all of Willy's original post the first time around, because I didn't see the second paragraph of his post when I answered.

Talk about confusion!

Deb

P.S. Ok....Willy......ARE you still editing your original last post? I keep seeing new information in it that wasn't there originally when I answered. Or am I having an MS moment?

And why would we ever want "competition" between researchers with the same common goal???? Wouldn't that alone promote the very things we would like to see eradicated in MS research?

Too bad the new VP of Research doesn't campaign first (or does he), or that we won't be made privvy to the potential candidates on the NMSS list for consideration once Reingold leaves. (Or will we?)

Deb