people with NMO misdiagnosed with MS

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people with NMO misdiagnosed with MS

Postby scorpion » Wed Nov 11, 2009 10:55 am

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Postby sou » Wed Nov 11, 2009 11:24 am

Doing so will help patients get the appropriate treatments and will help more researchers collect the best data in their pursuit of a cure.


Be it MS or NMO is not that different. None of them can be treated and the symptoms are more or less the same, so no appropriate treatments to consider. CRABs or Tysabri are out of the question since they don't seem to affect the course of the disease.

Now, about the cure... I would agree if instead of the word "cure" they used a more sincere expression i.e. "something FDA approved to bring us money regardless of effectiveness."

I get angry when I hear about researchers looking for "cures". No disease has been cured in the last 50 years. Researchers look for products worth selling.

Real breakthroughs come from people caring for some loved one: Lorenzo's oil, DAC, LDN (a little), CCSVI

Little scientists in white suits looking for money under the microscope are of no interest to me.

That 's just my personal opinion, mostly biased and maybe inaccurate.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Loobie » Wed Nov 11, 2009 12:21 pm

The Japanese call NMO, or Devic's, OSMS, or Optico-Spinal Multiples Sclerosis. I agree, not that much different. I carried the NMO diagnosis for about the first 4 years.
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Postby scorpion » Wed Nov 11, 2009 3:03 pm

I disagree with you Sou. There is a big misconception about researchers making lots of money and being indebted to drug companies. My wife has worked in the field of cancer research for 10 years, and trust me, she does not make lots of money. Even when she worked at NIH her salary was not enough that we could even afford to buy a house in the community we lived in (of course I am a social worker which did not help either!). Although I have met scientists and researchers like you describe the majority of them are in the medical research field because they care about people. And in the last 50 years, vaccines for hundreds of strains of influenza have been made, as well as vaccines for hepatitis A and B, HPV, chicken pox, and many more.
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Postby sou » Wed Nov 11, 2009 4:22 pm

Don't take it personally. Researchers can not spend their time on projects they find promising. They follow the orders of the high command, who provide the means of performing research.

Vaccines definitely train our own bodies to detect and find viruses and bacteria before they pose a threat. They are excellent in preventing diseases but worthless for treating them. And those are a breakthrough of the late 19th and early 20th century. The other major breakthrough of drug science was antibiotics, which is probably thanks to them that we are alive and talking right now.

The last major breakthrough came from technological advances of other sciences, not drugs. We have the technical means to see inside our bodies in realtime, intervene surgically even in the heart and head. We can make transplantations.

But how about the medical science itself? Able to diagnose nearly everything and cure nothing. When was the last time a disease was cured? Good or bad, curing diseases is not profitable. How many thousands of people would lose their jobs should MS was cured tomorrow? What about cancer? Drugs of today have the same mode of action with chemo of the 50s.

I don't mean that there is some kind of conspiracy and other stupid stuff. I only believe that NOBODY is going to research a drug that will put them out of business.

Who is going to make research on DAC? Who on LDN? Who on natural remedies? Carnitine works better than amantadine. Why is it not prescribed, instead? I disagree with the romantic point of view that there are some people researching for the good of humanity. There are only employees of companies wanting to make as much as possible by making products of pharmaceutical nature. There is nothing wrong with the employees. They have to survive, somehow. But having our society to devote their knowledge to building products and not to improving the life of humans disgusts me. There should be some other way to use these great brains instead of looking for boss' money under the microscopes.

sou

DISCLAIMER: I am not a communist!
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby scorpion » Wed Nov 11, 2009 4:48 pm

Since the early 20th century the average lifespan has more than doubled. I guess this is the result of greed on the part of the scientific community? It also shows the progress humans are making in treating and even curing certain conditions and diseases. If we want to talk about money as being the primary motivator, ok. Imagine the money a company would get for finding a cure for cancer, heart disease, diabetes, etc. As I personally know wonderful people working 14 hours a day looking for the cure for cancer because of their desire to help people I once again disagree with your assumption about the research community. I guess we will just disagree on that point Sou. These scientific greed machines have spent time in my living room processing the horrible deaths they have seen people endure. If anything else it gives them more of an empathy for the people who have the diseases they are spending 14 hours a day trying to cure. Are there people doing it just for money, sure, but they are the minority.
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Postby dignan » Wed Nov 11, 2009 5:34 pm

I think the lack of disease cures over the last 50 years is mostly about technology. The diseases we haven't cured are all very difficult to decipher and we haven't had the technology we need to really figure out exactly what is going on and how it can be stopped. The technology is coming along though.
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Postby sou » Wed Nov 11, 2009 9:29 pm

Again, I have no problem with the researchers themselves but the heads that define where the research should head to. And yes, they are motivated by greed and only by greed. The researchers should be used for the sake of humanity, not targeting a good selling product but a cure.

About the cure of cancer. What if a cheap, not patentable, natural substance is found to be a potential cure? Is anybody going to hire researchers to make proper trials? I doubt it. And this is why I doubt about the motivation, not of researchers themselves, but the money-centric system.

The fact that we are now alive is because of drugs and breakthroughs of the early 20th century. Life expectancy has doubled in the western world. Less wars after 1945, no child mortality, no chickenpox, no polio, antibiotics.

But what about the modern drugs? What is the breakthrough? Statins? Viagra? Taxol? Glivec? Tysabri? Vioxx?

sou
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