This Is MS Multiple Sclerosis Community: Knowledge & Support

Everyone who's fed up with Stephen Rheingold, the current VP of Research for the NMSS (described as an "autocrat" a few times on this board due to his overwhelming control of current MS research and his unwavering faith that MS is an autoimmune disease)-- I have good news for you. He's retiring in January 2005.

I'm not very much in the industry loop, but as far as I can tell the NMSS hasn't named his replacement yet. We, the people with MS, need to step in and beat them to the punch. Let's make a list of good replacements for Rheingold, and then try to come up with enough publicity for that list so that the NMSS can't ignore us and hire another drug-company stooge.

I can't do this myself, but I can lay out what the project needs. We need:

-- A short list of good candidates. No one who even bears the slightest whiff of being a quack. (i.e. no Bihari-- this is to ensure that we can be taken seriously). No one from within the NMSS structure. (This should be a sticking point of any publicity we make, so that we don't get a Reingold Jr.) The best candidate would be an intelligent and well-respected thinker and leader from outside the field of neurology, or at least of MS research. We need someone who would come at this with a fresh perspective. Good candidates could be economists, mathematicians, or business leaders noted for their integrity. 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.

--A temporary website for this movement. This could theoretically be attached to another site such as this one, so long as the site doesn't feel too quacky and the NMSS can't dismiss it offhand. The site should include information about the NMSS's financial dominance of MS research. Anyone good at building websites?

Let's make this discussion a productive one. The big first question we have address is: who is a good candidate for this position?

What is a "drug company stooge," and what evidence do you have that the NMSS has hired such an animal in the past?


Why not? If you are ruling out anyone from the NMSS for the job, why should the NMSS even listen?


What?! You want someone with no prior experience who will set about reinventing the wheel?


Why?


This is nonsense. Someone with MS would likely lack the stamina required, and having an MS-afflicted relative has no bearing whatsoever on someone's qualifications.


It's clear that you have a grudge against NMSS. Hey, it's a free country and anyone can have a grudge. But the NMSS would be nuts to take advice from people who are opposed to it.


Au contraire, the first big question is what's the point of such a foolish exercise?

The previous message was from me. I had forgotten to log in before posting it. All these allegations about the NMSS irritate me. Not because of the dissatisfaction, but because they consist of little other than overheated invective and ad hominem attacks. When asked to provide specifics, those making the allegations invariably do two things:

1. Refuse to provide specifics.

2. Lauch ad hominem attacks on whoever requested the evidence.

I'm really interested in what's causing the evident dissatisfaction with the NMSS. Yes, they posted an inaccurate memo on their website about LDN. But, other than that, I've seen nothing documented here. Just a bunch of adjectives and something that Harry says he was told at a conference by someone he thought was believable.

Hi onemike, your suggestion of action is a valid one, when ever a group with a common specific is to have something or someone interjected into a role that has an effect on everyone in the group, then it is very important to hope that the group as a whole will have some input into the selection of the (in this case) person, who will be overseeing something that will impact each and everyone of them..

now as for the process, oh my , to pick a single person out of the huge number who would very likely be qualified and competent to do the task at hand, is a somewhat mind boggling thought.

Perhaps it would be better to start with the concept of laying out a statement that would encompass what the collective considers to be the qualifications of this entity.

Also if input is needed and the NMSS would consider input from outside sources, , what about a group of individuals representing the whole of people with MS, a council more or less, decided on by groups such as ThisIsMs. A representative from each of the forums or workgroups or oraganizations across the net who come together with the thoughts inputed by the members of thier specific group..

Just a few thoughts on this important idea you have posted onemike, and thanks for the post, take care..

Philip

I don't want to get in to this debate but I have been following it with interest and I take offence at Willy writing that someone with MS would likely lack the stamina.

I have just got in from work - 12 hour day - which is most days. I am a CEO for a large non profit with revenue streams not far off that of the NMSS. I manage a core team of 25 people, responsible for over 100 other staff and countless volunteers.

Guess what I have MS and no it is not benign. And I have had MS for 15 years, so please don't make such sweeping assumptions. It is bad enough that the rest of the world make these assumptions. In my expereince the main disability is not MS but peoples attitude to it and sometimes that can also include people with MS.

A



This is nonsense. Someone with MS would likely lack the stamina required, and having an MS-afflicted relative has no bearing whatsoever on someone's qualifications.


It's clear that you have a grudge against NMSS. Hey, it's a free country and anyone can have a grudge. But the NMSS would be nuts to take advice from people who are opposed to it.


Au contraire, the first big question is what's the point of such a foolish exercise?[/quote]

Willy,

>Just a bunch of adjectives and something that Harry says he was told at a conference by someone he thought was believable.

I guess you have got "selective reading syndrome"...choosing only what you want to remember and forgetting about everything else that was said.

Harry

I'm glad you can put in a 12-hour day, but I think it almost by definition means you've got a mild case. This is a good thing. I'm glad for you. But I stand by my statement that it's ridiculous to make having MS or having an MS-afflicted family member be a pre-requisite for a job as the NMSS research director. O.K., someone with MS won't automatically be debilitated, but the chances are far higher that he or she will be unable to work a full schedule.

And to say that someone will be more effective as a research director because a family member has MS is an insult to all concerned. It says that MS is a horrible tragedy that deeply scars everyone concerned in all cases, and it denies the human ability to have empathy for people's troubles even though they don't share them. And it's just plain dumb. Did Salk or Sabin have polio? Did the inventor of penicillin have syphilis? Did the inventor of heart transplants have congestive heart failure? Should the director of a trauma unit be required to have been in a serious car accident?

A preference for MSers in the research director job is emotionalism and illogic run amok. I truly hope, and trust, that the NMSS won't consider such an idiotic qualification.


And now who's making the assumptions? In my opinion, the karma merchants have caused a lot more harm than good with their constant preaching that a "positive attitude" will overcome physical ailments. The only thing this stuff really does is make disabled people feel even worse by implying that their inability to function normally is somehow their own fault. That kind of stuff is nothing other than recycled religion; what was once "God's judgment" is now termed "a poor attitude." A distinction without a difference, I say.

I hereby invite anyone with deep masochistic tendencies to read the thread in question and decide for themselves.

Answering Willysnout


I agree with the poster who said that sometimes the worst disability is peoples attitude to MS and think you are indulging in some amazing telepathic ability to suggest they are saying that a positive attitude overcomes MS. I read it as them saying that making assumptions that someone with MS is almost definitely limited can be worse for many of us than the MS itself. This isn't getting into some weird one upmanship of who is suffering more. I too work full- time as a Marketing Director. I too have had MS for a long time and yes, for me the worst aspects - a lot of the time - are other peoples attitude that I MUST be unable to do things.

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. There is no single sterotypical person with MS and I don't want to fit in to someones narrow view of what it means.

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. 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?

Finally, I want to thank you for helping me to make my mind up that looking at sites about MS is dangerous to my health, your posts have a very robust affect on my blood pressure.

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.



Felly

Uh.........I almost hate to even butt in here (but not enough to stop me, or course).

Solely addressing the bottom line topic of illiciting ideas of who or what qualifications we'd like to see for a new NMSS figurehead, the first person who popped into my mind (without a lot of supporting reason) was the man I personally communicated with at the NMSS. The Research Director. But, thinking along Willy's line, I don't really know a thing about the man, overall qualifications-wise; but if compassion, patience, empathy, and responsiveness to people with MS and their concerns (no matter how small); knowledge of how the NMSS operates because he is already on the inside, etc. are up there on the preference scale for consideration, I'd throw his hat in the ring. IF I had anything to say about it, that is.

That man responded to me from being en route to Europe for a conference one time (I got the feeling he wrote to me from an airport even)! That took time and effort, because frankly........who am I, really? JUST an MSer. And he DID take my research (as poorly written as it was - Willy IS correct on that), to others within the organization for review and comment. IF (and I say IF) the NMSS was truly in a pharmaceutical company's "pocket", as the saying goes, he must have taken quite a personal risk to even get my stuff on the table for review. So, does that indicate anything?

Those are just my immediate thoughts. I'll go back to my little cave now.



Deb

Hi Deb.

you wrote
'who am I, really? JUST an MSer. '

No, you are a person with an identity separate from having MS and have just as much right as anyone to be heard or not heard as the case may be.

The national society was set up for people with MS and should work hand in hand with the people who have MS. And this means listening to them. Sometimes they do not.

I am in the UK so can only speak from this perspective. I offered my marketing services as a volunteer to help the national society here. For the record I am Cambridge graduate with a first in biological anthropology and have an MSc in Biochemistry as well as an MA in marketing and work as a Marketing Director. I have a track record of raising money and a special interest in cause related marketing and as someone with MS I think I have something to input into how MS is presented to the general population.

Guess what they got back to say they didn't know how I could help. I put it down to the fact -some- people get a bit shaken and insecure when the supposed 'victims' come along and can do things for themselves. It's the same in every aspect of the work, everyone likes to defend their own territory and fear the outside.

Great if a person with MS wants to answer the phones or can counsel, I have complete admiration for people who do this but we all have different skills and abilities and it seems that when those trespass on the work of the so called 'professional charity worker' then they don't want to know.

Your research may have been not as well written as it could be but so what- the fact you can see this and are prepared to keep going says a lot about you. Don't let anyone take that away from you. You are not just an Mser, whatever that really means.

It takes people with a good sense of self esteem and confidence in themselves not to react in a negative way, the guy you have been in touch with certainly sounds like he fits the bill.


Felly
Felly

Thanks, Felly!

And yes, I agree with you. I guess perhaps I meant that sometimes (if a person doesn't know another person at all), the initial thought (in the NMSS Director's mind) might or could have been that I was "just an MSer". Applying the thought that IF there is a majority outside impression that the NMSS truly does ignore us for the most part, at least THIS man did not. (Sometimes I don't make my comments very clear.) Shoot, MY ego tends to sometimes need taking down a peg or two. hehehe.......... Your voiced support to me is VERY much appreciated, Felly! Thank you again.

Anyway, that truly is disconcerting that a person with your obvious skills, knowledge, and compassion was turned away. That doesn't make much sense, does it? Sometimes I have found that people in any walk of life or occupation, accidentally allow themselves to feel intimidation and that in itself gets in the way of their otherwise good sense and judgment.

Perhaps that's what happened in your case? Of course, I don't know at all. It is just a suggestion based on what little I can ascertain at the moment. There are insecure people fighting for their livelihood all over, which as I mentioned, sometimes tends to overrule good judgment. It's a shame that that happened to you.

I would encourage you to keep trying, though. Perhaps you just ran into an isolated opinion from the NMSS over there? Just a thought.

We need people like you to join the cause, Felly!

Deb

As clarification, I was referring to "insecurity" and/or intimidation via your obvious impressive qualifications, from whomever you contacted at the NMSS.

Deb

I'm going to chime in on Willysnout's first volley



I think I'd have to agree that Reingold is not a drug company stooge, nor is anyone at the NMSS. They have a monopoly position for access to large numbers of MSers and as such don't really do much for the drug companies other than cash their checks. I believe that most of what you see (if it took any effort) that is promotional is done by the drug companies themselves under guidance from the NMSS. I've spoken to quite a few pharma reps who have complained about being over a barrel in terms of working with the NMSS.



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. The current president (also on his way out), Dugan, came in as a complete outsider - so they aren't averse to the concept.



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.



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.



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.

So I don't have to reply to the separate thread, I'll comment on whether having someone with a connection to MS (direct or indirect) is a good idea - I believe it is. To have a personal reason to commit to a cause is widely recognized as being a good motivation. Did Jonas Salk have polio? No - but I'm sure he knew plenty of people who did. Someone who will be completely satisfied to spend another 50 years trying to figure out MS because nobody they care about will suffer in the mean time is not the kind of person I'd like to see in the position. I don't think it should be a requirement, but it sure would be a great bonus.



This I'll have to agree with. Any effort along these lines has to be rational and presented fairly. I think the idea of creating a list of desired qualifications (as was proposed elsewhere) is probably a neutral way to go about it.



For someone who doesn't like ad hominem attacks, you certainly are full of them! 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. Copaxone was developed in Israel (as were Interferons). Copaxone was supposed to induce MS, not treat it - how's that for a bad hypothesis? Interferons were developed for other disorders and tried in MS on a lark by Larry Jacobs (who really made it happen - without him we wouldn't have them). MRIs weren't developed for MS. Antegren is the first treatment to be based on a theory of the disease and proven to work in the manner it was designed - and that was from a Pharma company. So where are all the great breakthroughs that have made our lives better due to the money spent by the NMSS? They try to lay claim to helping these discoveries, but the facts speak a different story.

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'm going to leap in and defend them on this one, since it's something I was surprised by until I started running my own nonprofit. I've heard stories like this from many people, and it sounded crazy. Then I started working with volunteers on a daily basis and it started to make sense.

Unless you offered free, full-time (or part-time on a regular schedule) help, it's hard to just plug you in. People who say "I have these skills - use me" are hard to place because anything important requires someone who will surely get it done, otherwise it hurts the organization.

An approach you might take if you are up to trying again is to think of a project that has these 3 characteristics: 1) You are good at it 2) you enjoy it 3) you have time to do - and then propose you do it for them. It can't take any resources from the main organization (other than a little staff time or access to mailing lists, etc.) otherwise it isn't worth them doing it with a volunteer (you need to pay for something, you want a vendor).

We've been fairly successful using this model. You'd be surprised how many people ask to help, you give them something to do, and they don't do it. If it was important, you're screwed. So guess what - you start telling people - we don't need your help or you start them out on small projects until you've worked with them for a while.

So see if there is something specific you can think of and tell them you want to make it happen for them. If they dismiss you then, run away!