But NO...this was not the case at all! It seems anytime one mentions the word "TYSABRI" on the Internet, the Investment Community goes wild. I think nearly TWO HUNDRED of today's visitors on BrainCheese have come from a site called "Investment Village"...yes, that's right...I am able to track back on my so called "visitors" and see exactly where their contact originated.
Let me quote exactly the message I discovered on Investment Village--the Elan Corporation message board (remember dear brain lesioned MSers reading this post...because we ALL must be stupid...Elan and Biogen Idec are the MAKERS of TYSABRI):
"Re: Brain Cheese/CORLEY
Thanks for bringing this to the attention of the Board. I have continued to read her Blog even after she was taken off TYSABRI (for said allergic reaction) because I have found it to be quite entertaining at times. Rx1"
Hmmm...what should I make of this? There is just so much fodder in that message on soooo many levels. But, let me FIRST say, I am SO FRIGGIN' HAPPY someone out there has finally found me "entertaining at times"...I can rest easier at night knowing this. I can die an "entertaining at times" person now...peacefully. LOL
SECOND...I am a bit alarmed there is a "BOARD" out there who is monitoring the daily activities of those of us with Multiple Sclerosis. But, at the same time, perhaps I should be comforted BIG BROTHER is out there "watching" me...my every breath and fart...my every lesion forming in my brain. Which only brings me to my THIRD point.
THIRD...unfortunately, THIS Big Brother is NOT a government agency who is actually trying to DO SOMETHING ABOUT THE DISEASE OF MS...but rather, AN INVESTMENT COMMUNITY TRYING TO MAKE A PROFIT FROM IT! To this, I can only say clearly and with the voice MS has yet to take from me...BITE ME!!!!!!
For those of you from the "Elan Investment Village" site who have only stumbled onto this blog because of the above comment left on your message board (and there have already been hits on BrainCheese from NINE different countries...you folks DO spread your money around wisely), I ask you this: What have YOU done for the cause of Multiple Sclerosis? Have any of you turned those "investments" around and DONATED any of your hard-earned INVESTMENT MONEY BACK to the MS Society or any other group who's goal is to find a cure for Multiple Sclerosis or ease the difficulties MSers have in dealing with the disease? Or is the devastating disease of MS just that to you...something to MAKE A PROFIT ON? (And if that LAST question is the only one you can answer "yes" to then, GET THE HELL OFF MY BLOG!!!)
Now, don't get me wrong here...I DO understand the goals of a capitalistic society and that type of society is exactly what we live in. And drug therapies cost a butt load of money to invest in their research and development...AND, MS is only a small niche of that market...it only makes sense those of us with MS should have to GO BROKE TRYING TO GET THE LATEST TREATMENT OUT THERE ON THE MARKET. I mean, why should we be any more "special" than the HIV/AIDS community?!?
And I'm also not against ANYONE making an honest buck...I only wish I had thought of investing in the Elan/Biogen corporations early on...I know a LOT of people with MS that I could convince to take the drug (because I am "entertaining at times"), thus shooting up my stock investments. LOL
But, as someone LIVING WITH MS, it is not my goal to dupe anyone, deceive anyone, or especially MAKE A BUCK OFF ANYONE WITH MS. And ANY POSITIVE ADVERTISING I give toward TYSABRI here on BrainCheese is because I have done my own research, been on the drug, and BELIEVE it has efficacy in my own, personal experience. That's NOT to say it is by any means "the cat's meow" for everyone with MS...no drug therapy is.
And finally FOURTH...I am most intrigued by the bracketed part of the comment on the Investor Village message board...the one that says "(for said allergic reaction)". Perhaps I am taking offense where none is deserved but, ARE YOU QUESTIONING MY NEUROLOGIST'S MEDICAL JUDGMENT?!?! The very neurologist who PUT me on the drug in the first place? The very neurologist who has dedicated her practice to treating MSers and who doles out a BUTT LOAD of TYSABRI infusions every month??? I'm sorry, but I don't recall YOU sitting in the infusion chair next to me when I broke out in a rash and had hives during my last TYSABRI infusion...if you WERE there at the time, I apologize profusely for taking any offense to this part of your message. LOL And if you'd like to clarify your message HERE on BrainCheese, I welcome your input...
Well, after THAT rant, I guess it's time for me to wrap this up and get ready for work again...of course, not before I ADD INVESTMENT VILLAGE/ELAN TO MY PERSONAL WATCH LIST...
What goes around, comes around...
15 comments:
All I can say is... DAMN! Remind me never to ever get on your bad side! :)
There's more than one out there with an extra asshole, after our gal carved it out for them.
Let me state that I was not aware that your Blog entry was posted on Investors Village today until you just mentioned it.
For anyone that calls up an internet search for Tysabri blogs, yours, mine, and a whole slew of others come up.
I am deeply saddened by your remarks and have a couple of comments of my own to make to your post though...I happen to frequent that site quite often as I am a very small retail investor in Elan.
I happen to 'know' many of the investors there, including both of the posters there that you referenced and they are both kind-hearted, caring, and very understanding individuals who have given deeply, showing true compassion to those of us that suffer daily from the damage inflicted upon us by this devastating disease known as MS, as do MANY of the investors there.
Now let me give you a small example of their kindness and generosity - SOME OF THOSE INVESTORS PAID OUT OF THEIR OWN POCKETS to help fund some of our patient efforts to SPEAK AT THE FDA AC TYSABRI HEARINGS IN MARCH 2006 IN OUR QUEST TO BRING TYSABRI BACK TO THE MARKET FOR THOSE OF US THAT NEED IT AND WANT IT, including you.
Some of them housed out-of-state patients and their families that testified, some picked up patients and their families at the airport, some arranging and paying for my video taped testimony that was accepted and played by the FDA when I couldn't travel due to an exacerbation I had in 2/06, and so on...furthermore, what the HELL did the NMSS OR BIOGEN do to assist us in that endeavor??? NOT A GOD DAM* THING!.
Lastly, it was ELAN's scientists that discovered Tysabri (Antegren), not Biogen's, you remember the peeps at Biogen that said you could never have Tysabri again? The company Biogen that combined Avonex with Tysabri which resulted in PML?
Let's not confuse Biogen's greed with the generosity, kindness and caring of the majority of the investors at Investors Village Elan Board, including Elan's brilliant scientists working on Crohn's, Alzeimer's, Parkinson's and a host of other auto-immune disease therapies.
I am DAM* PROUD to be a small investor in Elan, and DAM* PROUD to know many of it's investors.
Fyi, MANY investors, patients, their friends and families read the IVMB because they are looking for help for themelves and/or their ill loved ones.
Many of those investors were honestly devastated for you, as I was, when you had previously reported you could no longer have Tysabri.
So I guess your BITE ME remark applies to me too.
Nevertheless, I'm truly happy you have Tysabri as an option once again, and will always wish you well.
Lauren :/
But you are ALWAYS entertaining!
additional evil snickering will now commence ...
The investors seem to be discussing you the way a scientist would discuss the status of his lab rats.
STEVE:
Actually, no one is even on my "bad side"...I just needed to rant about something!
LD
ROJOO:
Tame as a kitten, I am! You KNOW this about me...say it...LOL
LD
LAUREN:
Thanks for taking to the time to post a comment and set the "record straight" as you see it. It's also nice of you to let us all know about what is behind the Elan Investor Village...
LD
MISS CHRIS:
You say that like it's a...I don't know..."bad thing"?!? LOL
LD
MDMHVONPA:
You are an eeee vile man...one of the qualities I like most about you, frankly. LOL
LD
HARKOO/JOYCE:
Well, in many ways, we are ALL lab rats in the scheme of things when it comes to MS...simply because NO ONE knows how or why we have it...or really what to DO about it either.
LD
wow!! I went on the Elan board just because you raised my curiosity . I guess I am a naïve little investment /internet virgin . Had no idea there’s this crude financial facet to our miserable disease .It’s like I saw Santa fell off the roof and the police drew chalk marks around the spot where he splattered. Albeit , I’ll say:Shalom !LOL!!!
I missed the party! :-[
I thought it was odd that MSers were happy about their Tysabri use, even though they had no Miracle Improvements. Now I know the Rest of the Story! Investment Village MY EYE!
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