This Is MS Multiple Sclerosis Community: Knowledge & Support

Deb,
I agree that there will never by a true "cure", but I consider a therapy which totally halts the progress towards disablilty to be a cure. So let's not worry about the term "cure" and it's exact meaning here. The point is that if such a therapy were discovered, the NMSS society and other similar organizations would have significantly less reason for existence. Sure they can be a resource for getting people lined up with the treatment. But let's face it, that reqiures only a small fraction of the resources that they currently hold.

It may seem like a silly question, but when you look at these organizations simply as employers with a will to survive and thrive, it is a very interesting predicament: would they really want to find something which will essentially dissolve them. Perhaps they would be able to refocus their efforts (though that is painful). That is the question to pose to them - "what would you do?".

I'm not suggesting a conspiracy. It is altogether natural and resonable for an organization to seek to survive and prosper. If they didn't have that will they would not be very successful, so I do not fault that desire. But I do feel some concern that this desire to succeed causes some loss of focus on the very reason that the organization was started in the first place.

It's not even the so much answer to this question that is of interest to me even if I could trust it (again, I'm not saying "conspiracy"). Rather, it is simply the asking of the question, and the pressure that puts on the recipient, which I think is useful.

Thanks

My personal view is that the way the "system" is setup is the problem, It is actually a social issue, not only in the world of MS and other diseases, but In the entire structure of how our world functions.

Everything is about money, a sad but true fact, everyones exsistance is based on the need to have money, It is how we all live, that is our social structure, and It goes from living day to day and trying to pay the bills, to living to have as much money as one can get, anyway they can get it.

It is a true paradox, I have no problem with the term conspiracy, no problem at all, I have been an investigator in another area for over 30 years, I know conspiracies in depth, and they are real and they are part of how our world operates.

In the vast majority of these situations, It is all about money and power, It is greed mixed with ego and that equals what we have in our world.

If one looks at the medical profession from a logical point of view, the goal is supposed to be to "cure", but on the other hand, If a cure is found, someone has put themselves out of business.

There is a sad fact in life, and It is that the world has good people, and the world has bad people, all operating on different levels of how they are.

But there is also something in the world that is one of the main causes of how our world is, and this something is "us", for the most part people stay in their bubbles and just try and do the best they can, and it is understandable that not everyone wants to stand up for what they know is right, It is not a easy task, It is thankless and mentally and physically demanding, and those whose health is bad, they have other battles they must fight every second of their lives.

But hope is something that we all must hold on to tightly, and never give up the battle, no matter how winless the war seems.

Bill,

Yes, I see now what you were referring to exactly. It is a weird conflict of interest position, isn't it?

And truthfully, I'm one of those people who scream the loudest about all this. (I even had drafted an article to send to our newspaper here in Nashville The Tennessean.)

And like Philip mentioned, "It is not a easy task, It is thankless and mentally and physically demanding, and those whose health is bad, they have other battles they must fight every second of their lives." That was how I felt all last year when I was practically "down", i.e. couldn't walk, so tired I could barely lift a finger, etc. etc. (whether what I have is called MS or not is irrelevent. The symptoms are so identical that I can literally almost choose what to call it, since nobody in the health profession can agree, really. One says definite MS, another says Fibro.......(my PCP was thinking ALS, for crying out loud! Philip can attest to THAT day!).......oops, I digress. Anyway, what I was saying is that all last year, I was SO frustrated with all of this that I SWORE that I wanted to do SOMETHING about it, but couldn't because I didn't have the health to do so. Now that I DO have my health back, I'm still looking for ways to help somehow. But I've got these doggoned HUGE ideas! (The NMSS told me, though, "Think big, Achieve big")

I tend to "work behind the scenes" a lot. I make a lot of contacts, drop a lot of "suggestions", write a lot to various people, etc. I'm still not sure what I'm meant to do yet, but I haven't stopped working on it. Sometimes getting something rolling takes a lot of setting the groundwork first.

I have asked something "similar".......really it was more of an accusation once to an organization.......I said something to the effect that I wasn't stupid, I knew that if I was "right" at all about ANY part of the research I had done, that that would put a world of hurt on a lot of organizations, etc., and certainly wouldn't be popular. Let's just say that an answer to that was "skirted".

Deb

EDIT: (Here we go with my edits again.) Maybe a question they MIGHT answer is something more along the line of "What is the incentive for your organization to find a cure or therapeutic management?" hmmmmmmmm..........

Deb,
agreed! So let's start writing!

"What is the incentive for your organization to find a cure or therapeutic management?"

We have 1000+ members on this site with a lot of vigor. I think it's great that we spend so much time chatting with one another, but we're all in the same boat. Shouldn't we spend more of our time chatting (writing letters) with folks who aren't in the same boat!

If you can't tell already from this and other posts, my big campaign is for all of us to start putting more pressure on the organizations that we complain about. I'm glad we have a place here to vent and educate one another, but things aren't going to change if we're all just talking to each other. I'm not scolding - I realize that many of us are out there putting pressures on already. No, I am just issuing a rallying cry - let's do more, with more of us!!!

I wasn't sure to which thread to post this to, but has anyone seen this?

Calendar of Events
Biogen Idec & Elan Joint CFO Discussion of Antegren Accounting
Date: Wednesday, November 3, 2004
Event Time: 8:00 a.m. ET
Duration: 2 hours

It's a webcast that anyone can sign up to "watch".

HARRY! You gonna log on? I would if I wasn't working.

Deb

Greed? I don't think that MS drugs, or any drug for that matter, is flawed due to drug company greed. Drug treatments are flawed because of an ethical delima of the capitalistic system.

Because drug companies are publically owned, they have an ethical obligation to their shareholders to be profitable. But, drug companies also have an ethical obligation to provide patients with the best possible treatments. Which obligation deserves more? Who do you think?

Right, and/but the other-side deserves it more.

A cure coming from a drug or a single pill, injection, et. al. doesn't seem like a logical goal. Since none of the CRAB drugs are 100% effective in reducing exaserbations, it can be safely assumed that finding any one drug that "cures" this disease is not 100% probable.

There have been studies that suggest that the findings about antegren and lesion reduction are misleading, or misdirected. In the fall of 2003, I had an MRI (six years post diagnosis) that showed a reduction in lesions. I quit taking Avonex soon after because my research showed that I was stupid for taking it at all. It ain't a cure, it's not 100% effective, clinical research shows that it can have physiological damaging effects, and for the six-and-a-half years I was on Biogen's cash-cow, my blood profile was always out-of-wack, my blood pressure was boderline high, and it made me feel sick or depressed.

I started LDN soon after quitting "the most natural" of the approved MS drugs. Does LDN work? Maybe, probably not according to the experts. however, I have a healthy blood profile now, blood pressure is low again; thus, I am overall a healthier person. Is one of the CRAB drugs a best-bet treatment option? Yep, because my doctor says so: right?

As far as the new stuff, those on the Antegren trial who showed a reduction in lesions may have shown a reduction without the drug. Last month I had another MRI that showed a further reduction in lesions. Unlike my former neuro who said that "you show something we don't usually see," my current neuro was prepared with an explanation. She tells me that there have been other cases where lesions go away. Somehow, that defies the logic of MS being a progressive disease. Wouldn't it make sense to find those others like me who have shown a reduction in lesions to see if there are any commonalities? Logical thinking should lead to this conclusion.

Therein lies the doctors delima. In the Hippocratic oath, one thing that doctors swear to abide by is to support the findings and efforts of their predecessors. No room for "what ifs" or anecdote when one owes to his/her predecessors.

So much for logic in the medical industry. Want a "cure" for this disease in our lifetime? Start by throwing away the updated Hippocratic oath of the 20th Century, and go back to the original and rework it the right way; an oath that focuses on providing the right elements to the make the patient well today, not tomorrow.

http://www.pbs.org/wgbh/nova/doctors/oath.html

Without passing comment on your opinions RevL some of which I share, I must just say that the inference you draw here is not justified by its predicate. Maybe finding a cure is improbable but not because it hasnt been found already nor because current treatments work only for some people and then only sometimes.

EDIT:: Just thought I'd add that I am more optimistic about future treatment options even given the global politico-economic environment.

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John
I am what I am

Personally I think a great deal of the "non profit" organizations are also in some way influenced by the same financial greed that the pharmaceutical companies exhibit. 14 year cycles of profit generating protected patents most assuredly make investing in these companies a "sure thing" regardless if their current cash cow is about to tank. NMSS seems to me to be the "there, there, now" soft stroke on the MS sufferer's back while never really advocating in the more unprofitable but logical arena. As long as the drug companies string us along, the NPO's stay alive and kicking. I can't believe how blind folks can be to this really ugly reality.

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Dx RRMS 10/2000

Avonex-2000-2002
Rebif- 2002-present
Provigil- 2001-present
Baclofen- 2000-present
Lipitor(statin)-2002-present
Celexa
relapses since 2000------ZERO!!!!!