This Is MS Multiple Sclerosis Community: Knowledge & Support

Willy,

>So is this source someone different than the one you cited in the other thread?<

This person has absolutely nothing to do with the other thread and being a 9 year volunteer with the NMSS and particular chapter, knows an awful lot of what goes on in the MS Society. But the NMSS protects itself quite well by obtaining confidentiality and non-disclosure agreements with those paid employees who leave or who get terminated. Why this is necessary for a non-profit organization indicates to me that there may be a lot to hide!

>you and Harry acting as if the NMSS somehow ought to say something. I really don't get it.<

I don't believe that I indicated that the NMSS ought to say something. I replied to another reader's question by saying they wouldn't likely reply to such a news article (like you said, they weren't implicated) unless someone asked them to comment. Geez Willy, I wish that you wouldn't continue to make incorrect references to what I said....I have a hard enough time trying to follow some of your logic as it is

To be clear: It is not the same person who provided information you cited in this thread and the other one? You are referring to two different people? It's a little vague to me. Probably my own fault, by the way. I have real problems with anything that requires me to count. Even to two. I'm not kidding.


I don't believe that the NMSS uses NDAs for employees, with the possible exception of someone who has filed employment-related litigation. Oh, and by the way, as someone who has signed many an NDA and requested they be signed by others, here's a dirty little secret: Those things are wallpaper. No one takes them seriously anyway.


The whole tenor of this discussion has been to imply that the NMSS somehow should have something to say about the story. And that's just absurd. The article had no relevance whatsoever with anything the NMSS or anything that it does.

Willy wrote:


Oh, for heaven's sake. Nobody "implied" anything. I asked a simple question out of pure curiosity. That is not an implication of anything.

Remember, many researchers are simply individual MS doctors who treat patients and do research and clinical trials for MS and MS drugs on the side! Of course there could possibly (I say possibly) be a connection, backlash, and/or a possible conflict of interest, etc. for the NMSS! My former neuro was doing many clinical trials sponsored by pharmaceutical companies (he had about 5 of them going at the same time) and getting paid for them, of course, as he should be. BUT.....It IS possible for a doctor who is in "tight quarters" with a pharmaceutical company to feel a little "pressured" from the pharmaceutical company (like the article mentions), if he's then asked to do a clinical trial that is NOT related to a pharmaceutical company. Nobody can say that "might" not happen. And then this WOULD relate and/or reflect on the NMSS because they also provide grants to those same doctors!

UNLESS, does the NMSS have a policy that if an MS doctor is already doing a clinical trial sponsored and paid for by a pharmaceutical company that that neuro can NOT apply for grant funds from the NMSS to do another trial?

I tried to get my neuro to apply for grant funds from the NMSS, but with him doing so many pharmaceutical sponsored trials, it put him in a difficult spot, shall we say, but I don't think that "difficult spot" came from or was caused by the NMSS - which leaves me "wondering" if the pressure wasn't coming from the pharma company (which AGAIN relates it directly back to Harry's article). And if that's true, then how many MS drugs that are currently NOT being marketed and "pushed" by pharma companies for MS ARE being ignored due to this involvement and/or possible pressure (if the article proves correct) from the pharma companies? And if so, then maybe the NMSS is NOT getting totally unbiased research back from the "field"! Maybe there IS a policy such as that with the NMSS [i.e. that you can't receive grant funds from the NMSS if you are receiving funds from a pharmaceutical company for one of their clinical trials? I will only say that I doubt that there is, because the NMSS encouraged me to get an MS neuro - whom as I mentioned, most of them do pharmaceutical clinical trials on the side - to get involved (Coetzee said the word "engaged") in outside research, also.]

NOW do you see why I was wondering? My FIRST question after reading that article (which was posted on an MS forum - so I figured I wasn't the only one who was making a connection between it and MS) was "hmmmmm.....I wonder if that same sort of "pressure" from pharmaceutical companies is being applied to the MS doctors who are "partnered" with them for MS clinical trials. And if so, then I wonder if the NMSS will address this possible problem? It was NOT that far of a reach. And if I thought that, many other people will, also. I know I'm not THAT nuts, you guys!

Don't tell me nobody knew this?

Like Harry mentioned earlier, you just never know.......money talks.

Remember, MS researchers are also simply "doctors", who treat patients. My next regular neuro appointment is with the Vandy "researchers".

Deb

Plus, ask around. How many MSers feel "pressured" from certain neuros to take ONLY MS injectable drugs, and those same neuros won't even consider outside MS therapies? (And I'm not referring to "quakery" MS therapies, Willy.) Why the narrowed thinking by those neuros? How closely are THEY involved with pharma companies who "might" practice disreputable behavior AGAIN as the article describes? How much pressure are those neuros under to "push" that pharma company's more expensive drugs? (Go do some research on some of these pharma companies, especially the ones who make MS drugs, and get a feel for what drugs they make the most money on and are fighting for market share on.)

No connection to MS, you say? (And anything that connects to MS in any way, shape or form, "may" then reflect back on the NMSS - right or wrong.) I say.........think again.

Thanks for your time.

Deb

Willy,



Yes, two very different people. This thread involves a person who spent years volunteering for the NMSS and to whom I was introduced only a couple of weeks ago.



Since I posted the initial article my intention was to point out the corruption that goes on in the world of pharmaceuticals. This comment comes up now and then on this forum and others and some readers write that they simply don't believe that a drug company would falsify information to docs about medicine. Just the opposite is true and with the money that is at stake here, these companies are notorious at what lengths they will go to ensure they get their piece of the pie.

Now, while this article is directed at how the drug companies influence the docs, one could easily take it a step further and see how it could influence hospitals, clinics and any kind of health organization. After all, it's the docs who run these places and decide what happens within their walls. And if anyone thinks that the CRAB drug companies don't have any major influence on the NMSS and their direction, then think again! Now one may understand why NMSS employees are under confidentiality agreements.

Harry

Deb,

>How closely are THEY involved with pharma companies who "might" practice disreputable behavior AGAIN as the article describes? How much pressure are those neuros under to "push" that pharma company's more expensive drugs? <

I can let you in on an incident that happened a few years ago involving Prokarin. EDMSS (company who developed it) was trying to find a neuro who would test the drug. The research documentation about Prokarin was presented to a particular neuro who read it and thought the science made sense. The doc decided that she would test the drug but had to present the information to the Clinic's Board of Directors. The day before the trial was to begin, EDMSS got a call from the neuro stating the trial was off. It was learned shortly after that the makers of Betaseron were heavily involved in this Clinic and that was the end of any possible Prokarin trial!

I don't think it takes much imagination here to see what happened.

Harry

Thank you, Harry.

Deb

My reading of the NMSS website leads me to believe that it doesn't operate, finance or participate in drug trials. Schering-Plough was accused of essentially bribing docs not to join trials run by competitors; it wasn't accused of interfering with the kind of research that NMSS funds.


If I'm correct that the NMSS doesn't run or finance drug trials, your suggestion that your neuro apply for a grant to run a trial was irrelevant.

Harry, so you know: I am one cynical bastard. I can easily imagine the drug companies doing all kinds of evil things, and it's not beyond my imaging that the NMSS or others could be in cahoots. If you read my posting in the ethics thread that I started, you will see that I asked a pointed question to Art of the Boston Cure Project regarding not only the NMSS's ethics but his own ethics. I am very interested in Art's response, if one is forthcoming.

Making an allegation doesn't make it true. I am very uncomfortable with your style of hinting at "insider" knowledge without stating it. I will consider only the cards you lay face up on the table. Everything else is worthless to me. I use the same standard of ethics and proof for everyone, friend and foe alike. I wish more people would do this, because if the same standard were to be used we might wind up seeing a little more clearly who is really friend and who is really foe.

Willy,



Geez, I'm glad you said it and not me.

I don't have a problem with anyone who is cynical or who wants proof of anything. The unfortunate part is that this comes across very clearly in the way you correspond with everyone and I believe it has a tendency to turn a lot of people off. At first, when I started reading your posts, I perceived that you were in an "attack" mode with me but after reading many of your posts, have come to realize that this is how you communicate most of the time. I participate in 7 different MS forums and can assure you that if you wrote the same way in any of them, the reaction that you would get would be quite predictable! I'm not going to tell you how to write but can say that doing it the way you do now will continue to make most readers feel uncomfortable and/or upset.




I agree with the allegation comment and don't have a problem with you stating that you are uncomfortable with my "hinting" of inpropriety by the NMSS. I can understand that and respect your opinion. It's the satirical comments that you make about this (not just about me BTW) afterwords in other posts. That's the kind of writing that doesn't gain my respect nor do I imagine the respect from many others on this forum. Again, I'm not telling you how to write but that your style doesn't win many supporters.

I would like to place "my cards" on the table on this forum and others but as usual, there are people who have told me information in confidence and I can only generalize what I know. Now that's not the greatest thing when it comes to writing either but I will not betray those who have confided in me. And that leaves the reader either believing me or saying I simply can't accept what you have said as proof.

Harry

Again, Harry.............well said.

And I'll be proof of the pudding today. As far as I'm concerned at this juncture, I feel I have nothing further constructive to add to this thread, so Willy, I respectfully ask that you excuse me for not responding in any manner to your additional comments to me herein.

It's one thing to actively debate an issue, and totally another to debate a person's opinions, integrity and/or character.

I personally will not continue in such an exercise.

As a wise man once said, there is such a thing as a wild goose chase. I'm done chasing this particular wild goose.

All the best to you.

Deb

Oh....and if anyone might be interested; if you read the NMSS website closely, you will find many references to their support of drug trials.

As only one example, I draw your attention to pages 12-15 of the following general publication issued by the NMSS:

http://www.nationalmssociety.org/pdf/re ... search.pdf

That's all folks.

Deb

I haven't "debated" your integrity and/or character, but please tell me what on earth is wrong with debating someone's opinions?! That's what a "debate" is for!

Willy, that last statement was totally beneath you. There is perhaps a more appropriate way to do so. Think about that one for a while.

And this is neither the time nor the place for this type of discussion.

Again.............if you will excuse me.............

All the best,

Deb

Not the time or the place? What, is this a 4th grade classroom, or is it a discussion among adults in a public forum? Unless the moderator of this website wants to declare it a support group where we need to coo at each other and say You poor thing, if you spout nonsense you can expect to be called on it. If you want to take it personally, be my guest.