Everyone should read this link...

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Chris55 » Mon Oct 16, 2006 6:56 am

Bob--go to websites that actually post drug trial "specifics". You may not understand all of the terminology or percentages, but you will get the gist when you read the "Conclusion". Perfect example: Betaseron just did a trial for using their drug at the first moment of suspicion of MS. The results: Only 50% went on the develop MS when using their drug immediately! Sounds really good, huh? Ha, ha! I came across a trial done years ago that studied how many people who presented with initial symptoms of MS actually went on to develop MS (NO CRAB drugs involved). Uhhh--about 50% went on to develop definitive MS!

I do agree MS research is a catch 22. It is "almost" an orphan disease (was for many, many years until the huge increase in diagnoses recently). MS research is not going to reach the same population as those who are impotent or have headaches! Your doctor MUST support the new drugs so the research companies will continue to research a disease that effects a small percentage of the population. I understand the vicious circle. However....

I find it unbelievably insulting when Copaxone conducts a HUGE study to determine the rate of antibody build-up of its competitors! This is just disgusting! I find it offensive when a drug that showed great promise--Minocycline--is snatched up by Copaxone so that is will never see a drug trial again--much less make it to market!

How about the recent conclusion from England--the MS drugs really aren't very effective! We just got an article on the drugs for Schitzophrenia (sp?) here at work (Dept. of Mental Health). The dangerous/serious side effects did not justify the amount of help offered.

One more example of the "corruption" in the drug industry/FDA: Do we all remember the 5 day Z-pack? Well, this drug company requested--AND RECEIVED--funding to develop a "brand new drug": the 3 day Z-pack!!

A former (prominant) member of the FDA wrote a scathing book about just these such practices. (And if I could remember her name, I would provide it.) She was very prominant in the agency.

How do we stop the practices that hurt you MS sufferes and their loved ones? I simply do not know! Talk about "Big Brother"--me thinks this industry and its greed are just too big for the common man! Maybe some of you have the answser(s)...

But until then--keep reading, investigating, sharing!
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Never Shut Up

Postby notasperfectasyou » Mon Oct 16, 2006 7:24 am

Lyon wrote:
notasperfectasyou wrote:again, I agree. But, I don't believe in complaining without proposing something that is realistic to get to the end. IMHO, folks complain all the time. Complaining is cheap and easy, like monday morning quarterbacking. Hey, I'm a very unhappy redskins fan, ok. My point, talk is easy and finding others to share in ones anger is easy to. But, why not choose then to not be a victim? I say take this energy and run for public office. Or start a protest and get media attention? It's not that hard if you do it with compassion and smarts. napay
Hi napay,
It's Monday morning, I need to put up or shut up :oops: Somehow the prospect of one person against the drug companies doesn't seem to be very good odds.

Until this thread I hadn't even considered the fact that there is no one in this whole great world whose only incentive is to find the "cure" for MS as we would like it to be. In that I mean by leaving no stone unturned and by any means necessary, regardless of the prospect of profit.

Now I find it understandable why the cure for MS has been so long in coming. If there is anyone out there who is leaving no stone unturned and by any means necessary, regardless of the prospect of profit in their search for the cure for MS I would love to know who it is.

Bob


Bob,
Don't ever shut up. Friendly debate, discussion and argument is the kind of activity we all need. This is why, I believe, we are all here. OMG, There's hundreds of folks working on this illness. We likely have thousands of MS dedicated "Patch Adams Doc Dudes" out there running round in white lab coats. I'll name Howard L. Weiner as one person.

Our world is not full of completely unselfish, totally giving Saints. I'm sure there are Saints amoung us. But the vast majority of humans are by nature not so freely giving and living a life free of all possessions.

I know Howard needs to earn a living and doesn't want to live in the slums of Calcuta. I'd be happy to have our own Micheal J. Fox. We don't have a Michael J. Fox, Jim Brady, Cindy Sheehan, Martin Luther King, Christopher Reeves or Bono. But when I look at the pipeline post, I see hope. Not blind hope, but hope in percentages. Someone's gonna win a Nobel Prize curing this one day - soon.

There's billions being spent, maybe not in the most ideal ways, but when boiled down to the 100k and 10k level's the folks who are doing the work, I believe, are feeling that what they are doing will advance the science. OMG, science didn't even find the Dendritic cell until the 70's!!! Stuff is happening.

On the otherhand, there are rules, administration and red tape to most anything. 3 people died in the Tysabri trials - it's a personal decision regarding how much risk we are willing to assume in order to get a cure faster. Example, some couldn't wait to get on Tysabri and today there are still others who want to see more info about effectiveness and safety. In the case of the FDA, we have some of these decisions made for us by our government, so we can't easily get our hands on very risky treatments. There at stops and checks and balances put in that slow things down. There's medical research protocol. There's the statistics they have to generate. There is the P value.

Frustrating, YES. I'd ask if you have read Dr. Weiner's book. If not, you might get a picture on this that is more positive for you and somewhat explanatory. Cure? No, but right now, I'll settle for being informed and yes, if you run for President, I will vote for you. napay
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Postby Lyon » Mon Oct 16, 2006 11:33 am

oo
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Postby Chris55 » Mon Oct 16, 2006 12:03 pm

Bob!!! One of my best friends in the whole world works for the U of M! She is one of your surveyors (I believe an instructor now also). She has been doing it for about a billion years.

Don't worry..she will never know the 2 of us "met". I live in SC. However, you guys really do do some very interesting survey work and enjoy an excellent reputation! Wouldn't it be wonderful to do an across-the-board generic survey of all MS patients covering every subject in the world, especially the ones we cover here. No telling what would come out.

Keep up the good work! Chris
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Postby robbie » Mon Oct 16, 2006 12:44 pm

First of all i want to thank viper for reposting my link it got quite the responce 2nd time round. I will be angry till the day i die about this and to justify it in any way shape or form just dosen't sit well with me, we are being taken for a ride and myself and every other sick sole are the ones who pay the price, don't talk about not enough money thats BS , don't make any excuses just get it done.. If the future looks so bright then how long will it be??? It could be now but it's not going to happen .Its a joke! After reading some of these posts i think i will run for office , if you can't beat them join them..
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Postby Lyon » Mon Oct 16, 2006 1:13 pm

oo
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Postby Chris55 » Mon Oct 16, 2006 1:55 pm

Bob, now you have me confused--is it U of M or MSU? Such weighty questions. On to my irritating "examples":

Are you familiar with Lorenzo's Oil? If not, I URGE you to rent the movie and watch it. The man--a common lay person--found a CURE for a deadly disease in young boys--all of whom died before reaching age 5. The cure--diet (lots of olive oil)!

Headaches??? CLASSIC, CLASSIC symptom of Chronic Lyme Disease--the disease that will not be recognized--period. And yet, many LD symptoms are identical to MS. Additional symptoms--MANY of which my daughter has--that are not compatible with MS are either ignored by my daughter's neuro or she is told they are in her head.

Food for thought: A few years ago, there were about 29,000 LD cases reported to the CDC. CDC states this disease is underreported by least 7 times (changed from 10 and very conservative). 7 x 29,000 = 203,000. What do you suppose would happen if these 174,000 cases had been misdiagnosed as MS? What do you suppose would happen to the MS community if the total cases went from 400,000 to 226,000? Can you see the picture really clearly?

We do have better "treatments" for cancer. We do not have a "cure for cancer". I stand by my position--too much money lost in a cure.

IT IS ABOUT THE ALMIGHTY DOLLAR. Unfortunately, we have lost all sense of honest and integrity in big business. Call me a cynic, call me sour, call me whatever you want....I consider myself honest with an all-too-clear picture--and it ain't pretty!

Again..what can we do? Use our voting powers? Are we just too small to have an impact? The scuzziness of the FDA makes headlines every day. Anyone going to EVER do anything? Well yes..just last week, the government health org. refused to accept the findings on the link between autism and the mercury-laced vaccine. FDA has been told to go back and do a better job this time. Maybe someone really is listening?

Again, my prayers for ALL of you! Chris
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Postby bromley » Mon Oct 16, 2006 1:55 pm

I've never been a supporter of the drugs companies are bad / greedy / obessed with profit / found a cure but not telling us / only interested in selling us drugs for life brigade. I've never worked for one or own shares in one, but the researchers who work for these companies are people like some of us - went to University, excelled in biology etc etc, got a job in an industry where their skills were needed. I can't believe that they are forced to sign a form saying "if you find a cure for a disease keep it to yourself".

So for those who do support this view - what should they do. Never buy a drug from these companies again? Petition government to close them down? Why don't we transport ourselves back to the 1750s when life expectancy was probably 40. When childhood mortality was incredible high? No cure for smallpox then. No operations. A simple world where people got diseases and died from them because there were no treatments!

Perhaps I have been lucky and have come into contact with MS researchers / experts who are dedicated to solving this complex mystery. Who work long hours trying to make some headway. The Professor for the UK MS Tissue Bank says that he was interested in researching MS because it was challenging and because he has a family member with the disease. Does anyone really think that he isn't working his socks off to solve this riddle?

I received the following comment from one of my contacts working in MS research:


RESEARCH IS A BIT LIKE A LOTTERY – YOU HAVE TO PLAY AND THEN SPREAD YOUR BETS IN THE HOPE OF HITTING THE JACKPOT. I THINK THE ODDS ARE GETTING BETTER.

An honest yet postive assessment of the challenges faced by such researchers. And if such research proves successful and the drugs companies trial and test and market treatments as a result of such research, are we going to deprive our children / grandchildren from having these treatments if they get this disease, on the basis that drugs companies make profits from them?

Our faulty genes are to blame for us getting this disease, and an environmental factor that our bodies couldn't deal with unlike the majorty of people. If we want someone to blame it falls closer to home. Blaming the drugs companies and researchers is not the answer.

I am as bitter as the next person for getting this disease. But incredible advances in technology (scanners, computer power, the internet etc); more money than ever poured into MS research; more companies than ever researching new treatments; incredible advances in understanding genetics, the immune system, how the brain compensates following damage; will lead to improved prospects for those with the disease.

I am as much a conspiracy theorist as the next person - but what's coming next on this tread? That drugs companies create these diseases? That MS is unknown in countries where there are no neurologists?

Hope is why I come on this site. To hear about breakthroughs, people doing well on new treatments. Let's try and be a little bit more hopeful. And put some faith in the fact that some of the MS researchers and the employees of drugs companies are there for the right motives - to alleviate suffering and give people a future to look forward to.

Ian
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applaud!

Postby notasperfectasyou » Mon Oct 16, 2006 2:36 pm

bromley wrote:I've never been a supporter of the drugs companies are bad / greedy / obessed with profit / found a cure but not telling us / only interested in selling us drugs for life brigade. I've never worked for one or own shares in one, but the researchers who work for these companies are people like some of us - went to University, excelled in biology etc etc, got a job in an industry where their skills were needed. I can't believe that they are forced to sign a form saying "if you find a cure for a disease keep it to yourself".

So for those who do support this view - what should they do. Never buy a drug from these companies again? Petition government to close them down? Why don't we transport ourselves back to the 1750s when life expectancy was probably 40. When childhood mortality was incredible high? No cure for smallpox then. No operations. A simple world where people got diseases and died from them because there were no treatments!

Perhaps I have been lucky and have come into contact with MS researchers / experts who are dedicated to solving this complex mystery. Who work long hours trying to make some headway. The Professor for the UK MS Tissue Bank says that he was interested in researching MS because it was challenging and because he has a family member with the disease. Does anyone really think that he isn't working his socks off to solve this riddle?

I received the following comment from one of my contacts working in MS research:


RESEARCH IS A BIT LIKE A LOTTERY – YOU HAVE TO PLAY AND THEN SPREAD YOUR BETS IN THE HOPE OF HITTING THE JACKPOT. I THINK THE ODDS ARE GETTING BETTER.

An honest yet postive assessment of the challenges faced by such researchers. And if such research proves successful and the drugs companies trial and test and market treatments as a result of such research, are we going to deprive our children / grandchildren from having these treatments if they get this disease, on the basis that drugs companies make profits from them?

Our faulty genes are to blame for us getting this disease, and an environmental factor that our bodies couldn't deal with unlike the majorty of people. If we want someone to blame it falls closer to home. Blaming the drugs companies and researchers is not the answer.

I am as bitter as the next person for getting this disease. But incredible advances in technology (scanners, computer power, the internet etc); more money than ever poured into MS research; more companies than ever researching new treatments; incredible advances in understanding genetics, the immune system, how the brain compensates following damage; will lead to improved prospects for those with the disease.

I am as much a conspiracy theorist as the next person - but what's coming next on this tread? That drugs companies create these diseases? That MS is unknown in countries where there are no neurologists?

Hope is why I come on this site. To hear about breakthroughs, people doing well on new treatments. Let's try and be a little bit more hopeful. And put some faith in the fact that some of the MS researchers and the employees of drugs companies are there for the right motives - to alleviate suffering and give people a future to look forward to.

Ian


That was well said. I'm going to add an idea #2 since no one has stepped forward to run for President.

Get media attention.

Again, I don't care what you think of guns, cars or 911. But, when someone like Michael Moore gets involved --- stuff happens. Al Gore's Inconvenient Truth movie did much the same thing. Being on Ophra doesn't realy work, why? The audience has short term memory. We need something that is pasting like a Michael Moore movie. Again, I'm not saying that I like Michael Moore or dislike Michael Moore, I'm saying the method of communication is effective.

Maybe we could all petition someone to do a movie about this. The only problem is that it's likely to go after AIDS and not MS. But, it's worth a shot. napay
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Postby Lyon » Mon Oct 16, 2006 4:35 pm

oo
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Re: conspiracy theories

Postby HarryZ » Mon Oct 16, 2006 4:54 pm

You can buy stock in the Pharma Industry. I own Pfizer, Biogen and Opexa. I'm not getting rich doing this. So you say, it's the management that's raping the ill. They have jobs. They might be making a million a year, but that's their job. They spent years in expensive colleges to get those jobs and made other personal sacrafices to get them. My job doesn't pay that much, but I'm not the lowest paid person at my office either. So if the cost of the drugs isn't unreasonably going to the shareholders or the employees, where does it go?


Buying stock in a pharma company, or any other company for that matter, doesn't mean you will make money on it. Financial management companies who do this for others study the companies, their upper execs, their history and everything else in a particular company and then decide whether to buy stock for their investors. These people usually make money for you. The average person who dabbles in the stock market usually loses their shirt! And pharma company stock is quite risky at the best of times.

Make no mistake, big pharma has little interest in the health of patients. They are in it for the money. There is nothing wrong with trying to make as much money as you can in business BUT, when you are dealing with the health and well-being of people, a very different aspect of doing business happens by default. Your success or failure will effect the health of thousands and perhaps millions of people and if your company just happens to bend the truth a little bit on clinical trials to make more money you have to ask yourself if this is ethical.

Look at the big four pharmas who make the approved MS medications. Talk about companies that fit into the description of what we read in the article that began this thread. I won't say any more about them because I have followed their actions for years and most of you have read my opinions about their operation. And nothing is sadder in how MS patients have benefited so little for decades because of this.

Harry
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Postby Lyon » Mon Oct 16, 2006 4:55 pm

oo
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Postby robbie » Mon Oct 16, 2006 5:21 pm

I think Ian has me in mind Bob, when it comes to most of the negativity, after all i'd like to think it was my link that started all this debate, it's been fun don't ya think! Maybe now it's time to post more hopeful drug breakthroughs or how your EDSS can go from 7 to 2 when you have SPMS, those posts give hope and thats what we need so it's all good. If anyone quits this site it should be me cause i don't have one ounce of hope in this whole thing. I always wondered how you can beleive in something so strongly but now i know it's just to bad its this , maybe some day in the near future what ever that means i will be wrong. I never wanted to be wrong so bad in life.
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Postby Lyon » Mon Oct 16, 2006 5:59 pm

oo
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Postby notasperfectasyou » Mon Oct 16, 2006 8:03 pm

Lyon wrote:I don't know if I'm getting tired from reading and typing but these really huge undertakings you are proposing are making more and more sense to me and are seeming less and less impossible :D
Bob


You and I are tired.

I've said about all I think I can say here. While free market capitalism may not be the best way to manage an economy, I've not found a better system underwhich I'd like to live. Of course if Bob is President, I would hope to be put in charge of the US Treasury. Then again, maybe we team Bob up with Michael Moore, we'll call the movie "Missing Scruples: The Big Pharma Farta". So in racap:

1) Bob for President
2) Bob the Documentary Film Director
and 3) ..........

Bob the Moral Boycott Organizer. This is idea #3. We smart MS'er (I know we're smart because we're here and not at some dorky place like Brainchat or whatever it's called) figure out what drug is the one that really works best of the CRAB's. We then threaten the company that makes the worst one that we're going to organize a moral boycott and get everyone switched over to best CRAB from worst CRAB. The out is, we give them 60 days to start a REAL cure project and we insist that ............ BOB will be incharge. EXACTLY! We put Bob in charge of the Cure project and they have to give him at least a few billion in funding. Jimmylegs can do PR. I will do the accounting. Deal?
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