This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Art,

Thanks for your comments, I like your optimism.

I am quite aware of how non profits work in the UK, I sit on the board of trustees of a medium sized charity. I didn't present this as 'here is my CV -"whadya want me to do." '

I gave a very specific idea of the free time and continuity (one day a week for 6 months) they could expect plus the type of project I would be happy to work on. I don't have the time anymore - this was over 8 months ago.

However, my point was more to do with the comments Willy made about the impossibility of someone with MS running an organisation because they don't have the energy and his response to the poster who said other people are often more the cause of disability than disability itself. This was just to illustrate my agreement with this poster.

Felly

Hi again.

Art, thanks for the insight. I'm taking all of your suggestions into consideration. I do want to clarify one thing: by suggesting that this project include a bit of publicity about how much financial power the NMSS has over MS research, I was not proposing that the project should include anti-NMSS propaganda. I just think that to convince people of how powerful the NMSS is, and thus how important it is that they have a good vp of research, we should gather some facts.

I apologize for the "stooge" line; I just saw a lot of antagonism towards Reingold on this site and I was hoping to attract people who were dissatisfied with his approach into action.

mscaregiver, I like the idea of a sort of a statement of purpose by American PwMS who want to be more involved in the decision making process of the NMSS. Gather some signatures, etc.-- it could work well. But I'd still like to pursue the possibility of proposing candidates just for a while, to see what we can come up with.

oddduck: what is the name of the research director you were referring to? is that reingold? or someone else from the NMSS? thanks.

for those of you still looking at this forum as a brainstorm, here's what we can work on:

what would a statement of purpose by PwMS demanding more involvement in the NMSS include?

who is a good candidate for vp of research of the NMSS? A good way to start thinking about it is by looking at people affected by MS (including family members/spouses of victims) that's not a necessary requirement, just a way to narrow down the field.

sorry not to offer any big suggestions on these two points of order right now, i'm kind of on the run...

best,
mike

Felly wrote:And before you get in to the victim one-upmanship again, yes mine is mainly mild at the moment. Who knows what this means for the future but I want, regardless of what kind of MS I have, to be considered on my own merits -not first and foremost as a person with MS. Sorry if this causes you offence.

Not in the slightest. I completely agree with you, in fact.

Felly wrote:Personally, I think whoever takes this position needs to be the best qualified for the job - regardless of whether they have MS, don't have MS , have a relative with MS or come from MARS. Who cares as long as they are effective. I don't think any of the other posters are saying that having MS was a prerequisite to the post, only that these were things that it may be considered.

You might not like my tone, Felly, but you shouldn't let your emotional reaction get in the way of the facts. Because the fact is that your position places you in agreement with me and not with onemike on this issue. He wants a pre-requisite and I do not. For proof, you should actually read what "onemike" wrote in his original posting. Reading is good for you, and here goes:

A good candidate would also have MS or have a loved one with MS. By limiting our search to MS-affected people, we also dramatically increase the likelihood that our candidates will take the job.

Please note onemike's (not my) phrase "limiting our search." If you "limit" the search to MS-affected people, by definition you have just established a pre-requisite. I stand by my opinion that this is lunacy.

Felly wrote:Why shouldn't they be considered Willysnout, what frightens you about the suggestions so much that you have to make such angry retorts and sarcastic responses?

I wouldn't rule out an MSer for the job. But I wouldn't establish "MS-affected" as a pre-requsite as onemike has suggested. The risks of such an approach are far greater than the potential rewards.

Felly wrote:This site is a fantastic resource - but I am bored to tears with your antagnostic outlook and have pretty much stopped reading the threads for fear that you will have jumped in there with some negative, harping comment.

I think the boring thing is for people to be in constant agreement, especially with ideas as foolish as those offered by onemike.

art wrote:I think I'd have to agree that Reingold is not a drug company stooge, nor is anyone at the NMSS.

I need to clarify, because apparently reading comprehension is a real problem around here. I did not argue that Rheingold isn't a drug company stooge. Rather, I asked for a definition of the term and some evidence. It is quite possible that he's a drug company stooge, but merely calling someone such a thing doesn't make it so.

The same goes for the NMSS in general. To quote a phrase: Where's the beef?

art wrote:I agree that it would be unwise to exclude someone solely because they worked at the NMSS, but fresh blood is desperately needed in that organization.

Why? (In the interest of reading comprehension, the question "Why" does not mean that I disagree. I just want to know "why" you hold that opinion.)

art wrote:I think having someone who is not originally from the MS research community, but has had a lot of experience in it subsequently would be ideal. Take, for example, someone like Eric Lander. He's recognized as one of the world's top geneticists and he is a mathematician and economist by training. He came in with a fresh perspective, a brilliant mind, and massive charisma and got the Human Genome Project completed. I can't think of a better model for MS while we're wishing we could find someone. Thus I propose, don't exclude someone because they didn't start out as a medical researcher. Hell, I think Reingold's background is physics - so there you go.

This is a good, intelligent, thought-provoking answer. Or at least it's a start. What is "fresh" about Lander's perspective, and what would this "freshness" bring to the research effort in MS? Be specific, i.e., no promotional cliches but some real analysis.

art wrote:I think we're looking for brilliance, and it doesn't have to be those particular fields. Brilliance over experience is almost always better. You can gain experience, you can't gain brilliance.

But why economists, mathematicians or business leaders in particular?

art wrote:Dude, that's so lame it isn't worth commenting on. If the MS Society listened to you they'd have the ADA so far up their behind they could look out their own mouth. Guess we should tell Christopher Reeve and Michael J. Fox they should quit their jobs.

Not sure about Fox, but Reeve isn't qualified to be research director of anything. He doesn't have the stamina for the job. This doesn't make Reeve a bad guy, but it's a good reason not to make him research director.

art wrote:Did Jonas Salk have polio? No - but I'm sure he knew plenty of people who did.

Presumptions are easy, but knowledge is difficult. Exactly what do you know about Salk's acquaintanceships and their influence on his work? In any case, even if Salk was motivated by acquaintances with polio, it remains that the history of science teaches that politics, religion (which is politics on steroids) and science shouldn't be mixed.

And make no mistake about it, a demand that the research director of the NMSS be "MS-affected" is a political demand for a form of "group representation." It has utterly nothing to do with the job itself. I couldn't care less who comes up with the answers. I just want them. Hire the best person, not the politically attractive one. And frankly, I don't care if he's well-liked unless that's something a research director needs to be.

art wrote:I think the idea of creating a list of desired qualifications (as was proposed elsewhere) is probably a neutral way to go about it.

And what makes people think the NMSS is unable to do this on its own? More to the point, why should they take suggestions from a bunch of people who regard them as stooges for the pharmaceutical companies?

art wrote:For someone who doesn't like ad hominem attacks, you certainly are full of them!

It takes more than a strong opinion and pointed language to make something an ad hominem attack. If you don't believe me, look it up.

art wrote:A major opportunity to alter the course of MS research is upon us. We have (with the NMSS) a 50 year history of spending huge amounts resulting in very little effect.

That's not limited to NMSS. You're right about there not being a cure or even very satisfactory treatment, but it's not enough to simply note this.

art wrote:A different approach is needed. The opportunity is upon us to get a different approach tried. I think it is a great idea to try and participate in changing that.

I want to know more specifically what you think is wrong with the way the NMSS goes about it funding of research. How can anyone make an intelligent change of direction without such as analysis? Otherwise, it's just an idle political contest fought by a bunch of people who have nothing but frustration and sentiment as their guides.
A mob, in other words. And let me say a couple things about crowds: They are tempting to join; always stupid; and usually wrong.

In answer to onemike's question as to the name of the gentleman at the NMSS whom I am referring to, his name is Timothy Coetzee, PhD.

If you perform a websearch on him, you will find some articles. A few are regarding actual research he has participated in himself, and some are general articles. Although you may not find a lot mentioned about him, (speaking solely from my perspective), you may notice how he appears to be very amenable to change, and also is verbal in advocating change and/or supporting growth and ways of finding new and more effective methods of creating organizational growth to better serve members (us) and the research community of the NMSS.

In one article (which to me shows indication of his willingness to try new methods to attract new talent, etc.) he is quoted as saying:

"Timothy Coetzee, the Director of Research Training Programs at the National Multiple Sclerosis Society explains his dynamic relationship with GrantsNet.org. 'When I was a postdoc, I used GrantsNet to research funding opportunities. Now as a grants administrator and a funder, I see it as a way to reach a new audience. We're always interested in pulling in people with varied skills and experiences. GrantsNet gives us a way to do that.' "

In another article from a year or so ago, he is quoted as saying:

"Epstein-Barr joins the list of infectious agents that might be related to MS, says Timothy J. Coetzee, director of research training programs for the National Multiple Sclerosis Society. The list now includes HHV6, another herpesvirus, and chlamydia, a bacterium. The measles virus was once a suspect but has been cleared, Coetzee says.

"A causal relationship has yet to be established between any infectious agent and multiple sclerosis," he says. "With all of these infectious agents, there is no smoking gun."

Research should be pressed Coetzee says, because identification of an agent that causes the disease would mean that "you could start thinking rationally about devising some treatment. If it is a viral agent, you could think about antivirals. If it is a bacterium, you could think about antibiotics."

Such a treatment is a distant prospect now, he says."

Looking past the actual literal interpretation of the subject matter of this quote and the fact that it was voiced some time ago, I personally (based on very little, I realize) see where he shows evidence of being able to advocate more "focus" from the research community, and perhaps shows preliminary signs of very good leadership. (?) Maybe I'm reading too much into it, of course, but I sort of hear the underlying encouragement from Coetzee for researchers to "get their act" together and stop wasting valuable time and money.

Excerpting from another article from 2002, Coetzee is quoted as saying:

"Timothy Coetzee also noted ambiguity in establishing funding levels at his organization. Years ago, stipend amounts depended on how much the postdoc requested in his or her application. Now, NMSS adds 10% to current NRSA guidelines. Others stated that their organizations also use NRSA levels as a starting point--the panelists’ consensus seemed to be that their stipend amounts are all "a little higher than NIH," as Coetzee remarked."

Again, personally speaking, from my perspective, this again indicates his ability to realistically view where changes may be required within his own organization, and respectfully and professionally express those views without fear of reprisal, and again, not only does he "talk" about it, he actively participates in trying to affect change.

He participates in and sits on a few panels, including one at the NINDS entitled "Genetics and Multiple Sclerosis: Future Prospects", indicating to me his openness at considering several avenues of MS research. I don't get the feeling that he is "stuck" on MS being purely an autoimmune disease (as someone else mentioned that Reingold is - I'm truly not familiar with Reingold or his positions at all). Frankly, I myself sincerely appreciate someone in research who advocates openness to consider all avenues, and yet balance that with focus.

In a letter written by Coetzee in April, 2004, to the National Postdoctoral Association advocating committee change, he writes:

"The re-organization of committee structure will benefit the NPA by:

-Allowing the Executive Board to focus its efforts on the critical strategic and fiduciary responsibilities required for sound governance of the organization;
-Providing the organization with greater flexibility to address the future needs of the membership.

Finally, the new committee structure is consistent with the best practices for non-profit governance and will increase the effectiveness of the Executive Board and the membership in striving to achieve the organization's mission to improve the postdoctoral experience."

In addition to the above, Timothy Coetzee holds a PhD and has performed quite a bit of his own research into MS, oligodendrocytes, and the possible pathogenesis of MS.

Perhaps my support of someone with actually very little known about him appears unrealistic at this point, but combining the above with how I was treated by him after contacting the NMSS out of the blue, certainly impressed the heck out of me! I can be quite difficult due to my expressiveness and activism, and he never once got "rattled" or lost his cool. That says a lot about someone. I like someone who can stand up under pressure.

Personally speaking, I'd really like to know more about the man. What little I've discovered (or uncovered) shows indication of the man's integrity, character, and acceptance of change when the need arises. Flexibility to change directions if the old one is proven to be a dead end, is a characteristic that I admire.

Well, that's my two cents.

Deb

P.S. Willy - now be kind to me when you respond. hehehe........... Remember, hold it down to only what you really think.

willysnout wrote: I need to clarify, because apparently reading comprehension is a real
problem around here. I did not argue that Rheingold isn't a
drug company stooge. Rather, I asked for a definition of the term and
some evidence. It is quite possible that he's a drug company stooge,
but merely calling someone such a thing doesn't make it so.

The same goes for the NMSS in general. To quote a phrase: Where's
the beef?

Willy, you're going to need to consider the possiblity that writing
capability is the problem. This isn't a forum filled with legal
documents to pick apart by looking at each and every word, yet you
seem to see it this way. Humans are quite capable of handling
imprecisions in speech - at least most are. It is
obvious that many of your responses are taken differently than you
intend and that you make many people feel defensive. This is not a
good prelude to having your concerns listened to, in my opinion. It
might serve your purposes (what <i>are</i> your purposes?) better to
consider how your responses might be taken by others rather than how
they might be evaluated in a court of law (or
spelling/syntax/grammar).

It would be nice to hear your arguments on the points being discussed
rather than your analysis of the meanings and definitions of words and
phrases. Anyone can rebut with "why?" or "what do you mean by X", but
it takes a little thought to respond with counter-examples and
logic. I'm not saying this to be insulting - I'm guessing you have
some very salient points to make. Go beyond just questioning what
someone says - <i>add</i> something to the discussion and we'll all be
better for it. Right now it looks like the main result is people
being afraid of your reply.

I'll come back to your "reading comprehension" comment when we discuss
the provided definition of "ad hominem".

willysnout wrote: Why? (In the interest of reading comprehension, the question "Why"
does not mean that I disagree. I just want to know "why" you hold that
opinion.)

Did you think the additional definition of "why" was actually adding
information to your post. Or did you realize it was just going to be
taken as a snide comment? My hypothesis: you are intelligent enough to
know how what you write will be taken, but choose to write it that
way anyway. This just makes it unappealing to me.

Well, I explained in other parts of my post, but I'll elaborate. I
think the things I do regarding the NMSS because 3 years ago I quit my
job to work full-time on understanding what was going in MS research
and what might be done. I have talked with over a hundred top MS
researchers, visited their labs, met with the folks at the NIH, I have
had discussions with present and past NMSS employees and board
members, and I have read hundreds and hundreds of MS research papers,
text books, and reports. I have 4 people working for me right now who
are doing further research into what's going on in MS research.
I have formed my opinions based on these experiences. That's why.

Granted, I'm not the most qualified person in the world to hold an
opinion on this topic, but I think I've done my homework. Just so we
know how seriously to take you, what are your qualifications?

willysnout wrote: This is a good, intelligent, thought-provoking answer. Or at least
it's a start. What is "fresh" about Lander's perspective, and what
would this "freshness" bring to the research effort in MS? Be
specific, i.e., no promotional cliches but some real analysis.

I'm not suggesting him. He was a template. Come on Willy, if you're so
desperate for analysis do some yourself. Where's the analysis that the
status quo is working? I'm not going to all the work for
you. (Actually, I probably am, but that's just the nature of what I do
for a living now).

willysnout wrote: But why economists, mathematicians or business leaders in particular?

Again, just an example from another discipline. For genetics Eric
brought an analytical perspective that was sorely lacking in much of
genetics. He went on to hire astronomers and physicists to work at the
whitehead and they went on to make significant breakthroughs that
traditional life scientists probably never would have.

willysnout wrote: Not sure about Fox, but Reeve isn't qualified to be research director
of anything. He doesn't have the stamina for the job. This doesn't
make Reeve a bad guy, but it's a good reason not to make him research
director.

OK, let's play your game: how do you know this? Do you know Reeve? Do
you even know someone who knows him? Reading comprehension? I didn't
say they were research directors. They both have very demanding and
time consuming jobs. Somehow they manage to do them. Hmmm. FYI, I
<i>have</i> met with both of those organizations - just in case you
needed to know.

willysnout wrote: Presumptions are easy, but knowledge is difficult. Exactly what do you
know about Salk's acquaintanceships and their influence on his
work? In any case, even if Salk was motivated by acquaintances with
polio, it remains that the history of science teaches that politics,
religion (which is politics on steroids) and science shouldn't be
mixed.

And make no mistake about it, a demand that the research director of
the NMSS be "MS-affected" is a political demand for a form of
"group representation." It has utterly nothing to do with the
job itself. I couldn't care less who comes up with the answers. I just
want them. Hire the best person, not the politically attractive
one. And frankly, I don't care if he's well-liked unless that's
something a research director needs to be.

:-/ I tire of sand in the bulls eyes.

willysnout wrote: And what makes people think the NMSS is unable to do this on its own?
More to the point, why should they take suggestions from a bunch of
people who regard them as stooges for the pharmaceutical companies?

Obviously you have a different opinion - what is it? What's it based
on? Enlighten us. I'm guessing you have some good points to make. Stop
dancing around the edges.

willysnout wrote: It takes more than a strong opinion and pointed language to make
something an ad hominem attack. If you don't believe me,
look
it up.

accusations of reading comprehension abilities
"this is nonsense"
"Someone with MS would likely lack the stamina"

And I didn't even have to go to any of the other threads.

willysnout wrote: That's not limited to NMSS. You're right about there not being a cure
or even very satisfactory treatment, but it's not enough to simply
note this.

Huh? I think 50 years of no success while using a method is ample
evidence that trying something different might be a good idea. I'm not
sure if you've been paying attention, but this problem is not just in
MS - the entire medical research world is having problems (e.g. see
the Fortune article on the War on Cancer).

If you disagree, again, I ask you to provide your own analysis rather
than just demanding others do it for you.

willysnout wrote: I want to know more specifically what you think is wrong with the way
the NMSS goes about it funding of research. How can anyone make an
intelligent change of direction without such as analysis? Otherwise,
it's just an idle political contest fought by a bunch of people who
have nothing but frustration and sentiment as their guides.
A mob, in other words. And let me say a couple things about crowds:
They are tempting to join; always stupid; and usually wrong.

You can follow the 3 years of my (and others') analysis on this topic
at http://www.bostoncure.org and http://msnews.bostoncure.org. It's
our opinion. It's based on extensive research, analysis, and
synthesis. Let's see yours, willysnout, and we can have a fun debate
on the facts rather than the wording. I'm happy to change my opinion
when presented with contradictory evidence.

Your turn.

OddDuck wrote:Willy - now be kind to me when you respond. hehehe........... Remember, hold it down to only what you really think.

Hey Deb, wanna know what I really think? I really think your posting on Coetzee was the best posting I've seen in any thread on this site. It was informative, analytical and thorough. Bravo -- bravissimo! This is the sort of information that could form the basis for intelligent and reasoned discussion here. I sure hope you'll hang in here and keep posting!

art wrote:Humans are quite capable of handling imprecisions in speech - at least most are. It is obvious that many of your responses are taken differently than you intend and that you make many people feel defensive.

A couple of jihadists here with an ax (with a pretty dull blade, in my opinion, and that's a comment on the ideas not the people involved) to grind against the NMSS have interpreted my requests for substantiation of their claims as blanket support for the NMSS's approach and actions. They are imputing motives and opinions that simply don't exist. Or as I was once told by a wise man: Never assume anything.

art wrote:This is not a good prelude to having your concerns listened to, in my opinion.

I think fair-minded people on this site will be able to see my point. Those intent on grinding their ax against the NMSS will not.

art wrote:what <i>are</i> your purposes?

To give my opinions within discussions of MS and related topics. You might have noticed that I tend to favor discussions focused on fact and analysis rather than personalities and unsubstantiated accusations. I also favor a free and vigorous exchange of ideas, even if it involves some bruised egos.

art wrote:Anyone can rebut with "why?" or "what do you mean by X", but it takes a little thought to respond with counter-examples and logic. I'm not saying this to be insulting - I'm guessing you have some very salient points to make. Go beyond just questioning what someone says - <i>add</i> something to the discussion and we'll all be better for it. Right now it looks like the main result is people being afraid of your reply.

Asking "why" is not a means of rebuttal. I have asked you and others for more information because I want to understand your thinking before trying to reply to it. My purpose in seeking more information is not dilatory. By the same token, my purpose in critiquing Deb's writing wasn't dilatory or destructive. I'd like to see her contribution be more effective than it was. At least she understood that, thank God.

art wrote:Did you think the additional definition of "why" was actually adding information to your post. Or did you realize it was just going to be
taken as a snide comment?

"Yes" to both questions. I'm a curmudgeon. So sue me.

art wrote:I think the things I do regarding the NMSS because 3 years ago I quit my job to work full-time on understanding what was going in MS research
and what might be done. I have talked with over a hundred top MS researchers, visited their labs, met with the folks at the NIH, I have had discussions with present and past NMSS employees and board
members, and I have read hundreds and hundreds of MS research papers, text books, and reports. I have 4 people working for me right now who are doing further research into what's going on in MS research.
I have formed my opinions based on these experiences. That's why.

That's not the "why" I was looking for. I was wanting to know why you think a fresh approach is necessary, and what sort of "freshness" you seek. You've stated your qualifications to hold an opinion, but you haven't given any real depth or insight into the opinion itself.

I want to know more detail about what you think and why, Art. Take all that time and experience and show us what you've learned.

art wrote:Granted, I'm not the most qualified person in the world to hold an opinion on this topic, but I think I've done my homework. Just so we know how seriously to take you, what are your qualifications?

A lot less qualified than you. I don't hold an opinion. I am asking for yours. What's wrong with that, for God's sake? Art, it's not enough to say that we need a fresh approach. You want new and different, and I am asking what kind of new and different?

art wrote:Come on Willy, if you're so desperate for analysis do some yourself. Where's the analysis that the status quo is working?

I'm not arguing that it is working. Art, you've made a point of telling us your qualifications. I accept them. All I'm seeking is more detail from you. In my prior life, I interviewed thousands of people. When I had opinions within my fields of expertise. Not only could I offer them in great detail but I was thrilled to be asked to do so.

But I never offered opinions without being able to support them with evidence, nor did I expect people to simply bow down and believe me because of my resume. On more than one occasion I was asked for an opinion on something that I wasn't qualified to talk about. I'd say, "Sorry, I don't know, but if it's important to you I can look into it." Occasionally, I'd be pressed for my speculation, to which I had a stock response: "I can do one of two things. I can tell you I don't know, or I can do what my competitors do and make something up. The choice is yours."

art wrote:I'm not going to all the work for you. (Actually, I probably am, but that's just the nature of what I do for a living now).

Yeah, Art, I'd say it's your job to do the work for me. Ain't it a bitch to work for people you don't like? But hey, at least you're not an ER doc.

art wrote:For genetics Eric brought an analytical perspective that was sorely lacking in much of genetics.

What do you mean by this, and I'm not being dilatory but I am genuinely curious. What analytical perspective did he bring that had been lacking, or are you saying that prior to Eric's arrival much of genetics wasn't analytical at all?

art wrote:He went on to hire astronomers and physicists to work at the whitehead and they went on to make significant breakthroughs that traditional life scientists probably never would have.

Got any examples?

art wrote:OK, let's play your game: how do you know this? Do you know Reeve? Do you even know someone who knows him? Reading comprehension? I didn't say they were research directors. They both have very demanding and time consuming jobs. Somehow they manage to do them.

I don't know Reeve. I made my comment because you brought up his name in the context of having objected to my comment that an MSer would likely lack the stamina to be a research director of the NMSS. I should modify this and say that if they hire an MSer they'd need to be careful to find one with a mild case, lest fatigue and cognitive dysfunction interfere with his ability to do the job.

Back to Reeve: All one needs do is look at the man when he's on TV. It is a great effort for him to speak. I admire him, but my admiration would not lead me to hire him as the NMSS research director. He'd be a good spokesman, though.

art wrote:Obviously you have a different opinion - what is it? What's it based on? Enlighten us. I'm guessing you have some good points to make. Stop
dancing around the edges.

I have no idea who to hire as the NMSS research director. Not a clue. It could be an interesting mental exercise, but not if the premise is going to be that the organization is a stooge for the drug companies; that the new person has to be "MS-affected"; and that he or she must come from outside the organization. To me, this is a prescription for hiring some alternative medicine quack.

art wrote:accusations of reading comprehension abilities
"this is nonsense"
"Someone with MS would likely lack the stamina"

I suppose one could argue that a vigorous assault one someone's ideas constitutes an ad hominem at least in a de facto sense. On the other hand, there's the question of how thin someone's skin is. Even using an expanded definition, I don't think there's any element of an ad hominem in my comments about an MSer likely lacking the stamina to be the NMSS research director. There was no hominem. At worst, I was indulging in group libel, not an ad hominem attack.

art wrote:Huh? I think 50 years of no success while using a method is ample evidence that trying something different might be a good idea.

I agree, but with a reservation. If a different direction is to be tried, I think it's only prudent to examine what the direction has been and to have a detailed discussion of what the new direction shall be. It's not enough to simply call for a "fresh approach." Some fresh approaches are disasters. Communism was a fresh approach for Russia.

art wrote:You can follow the 3 years of my (and others') analysis on this topic at http://www.bostoncure.org and http://msnews.bostoncure.org. It's
our opinion. It's based on extensive research, analysis, and synthesis.

The cure map appears to be byproduct of your effort to understand what's going on in MS research, Art. It remains to be seen whether it's of value within the field. I've known lots of high-tech executives and a lot of them are big on "connectivity" as represented by the Internet. I think all of this is oversold to some degree; I think of my job and how I'd spend a third of my time answering correspondence.

The arrival of e-mail in the mid-1990s made it possible for anyone to reach me. For a while, I even had a Blackberry wireless e-mail device. An awful lot of pointless wheel-spinning got done. I wound up ditching the Blackberry and putting a whole lot of people on my automatic delete list so I could get my work done.

The question, I guess, is whether MS research suffers from a lack of information exchange among researchers. If it does, then the cure map will help. If it doesn't, then the cure map winds up being one guy's well-intentioned addition to the volume of stuff in people's in boxes. I suppose that makes me even more of a jerk, but I always operated on the principle that it's not the volume of work that counts but the quality and originality that matters. A lot of high-tech is about volume of output.

My question about Boston Cure, Art, is whether there is any personal enrichment angle here. Will Boston Cure do any early-stage investing in biotech companies? If so, will you be co-investing your personal funds in those deals? It's an ethical issue, and with the high-tech community we've all learned that ethics is too often regarded as someone else's problem.

I am sorry to say this Willy, but in my opinion Your previous posts - especially in this thread - have not been intelligent argumentation, only provocative nitpicking. Boooring!

-finn

finn, to quote Cole Porter, you say to-MAY-to and I say to-MAH-to

Willy, in this case even editing won't help ;-)

-finn

Willy: Thank you for your complimentary comments!

(Oh.....and I probably shouldn't say this - and I'm not laughing "at"; not at all, just the opposite, matter of fact - For some reason, you crack me up, Willy!! You, too, Finn! Then again, I didn't name myself "OddDuck" for no reason, either.) Yes, I'll hang around. DEFINITELY!

Hi, Finn! I've wondered where you've been hiding lately. I haven't met you yet. "How do?"

Deb

Deb, I'd like to second the compliment to your post. Very interesting, very informative. I do agree to a certain extent that a little personal experience can tell you a lot about an administrator's openness. Thank you.

For the record, to whatever extent I said that being MS-affected and having a professional history outside the NMSS should be requirements for this search, I retract my statement. Coetzee might end up being a good example of someone who does not fit either of those criteria but is still a good candidate. However, so long as we're trying to come up with a finite number of candidates out of a huge field of qualified people, I think those two criteria could be good guides. I do stand by my previous statement that if we can identify people affected by MS who are qualified for the job, they will probably be much more likely to take the job than other similarly qualified people-- especially if our candidates come from outside the field of research neurology. I repeat again that when i say "affected by MS", that category includes family members of PwMS.

Having said that, I'd really like to encourage this thread to be an open thing where we can toss ideas around and not have to worry about looking everything up in the dictionary and having to say "for the record". let's put the judicious decision-making on hold for a week or two and try to come up with a bunch of ideas right now.

--What, as MSers, do we want to ask of the NMSS? (in terms of structure and organizational relationship with us) How could our greater capacity for participation, fostered in the last few years by the internet, help the NMSS to work better, especially towards achieving its research goals?

--If there was an election this november for VP of Research for the NMSS, who would you vote for? Who would you want to see on the ballot?

OK, kids. You'll have to find a different playgound where you can continue to throw sand at each other without disrupting the discussion the adults are trying to have.

It is infuriating to watch you guys pull each others hair and bite each other over trivial things, while in the meantime my MS progress - something not so trivial!

Look, at the end of the day we are all here for the same common purpose - to advance the understanding and treatment of MS. So, please, before you post anything ask yourself honestly if your comments are contributing to that end. If you cannot honestly say "yes" to that question, then please do not use this forum. The internet is full of forums where people can debate for the sake of debating. That is not what we want here. PLEASE!

by the way finn, I appreciate the compliment of calling me provacative, but I think to call me a nitpicker constitutes an ad hominem attack