84 replies to this topic

[love&hate]

sci1988.If you feel so passionate about this I think you should join some organization. If you wanna help the community so much join U2FP. I think you could use your energy to benefit us all instead of looking for small battles on forums you could actually do something that matters in a long run. Even though we dont agree about SCInet i think we should put this behind and work together. We are on the same team.

http://unite2fightpa....wordpress.com/

You can find all the info in this blog. Heres the quote from recent blog entry. I think we all fell the same way.

“I’m a hard core SCI advocate in the purest form. I have no preference on which type of cell, growth factor, inhibitor or country to discover. I have no pre-concieved notion about the ultimate SCI cure. I consider it all nothing more than a calculated dog and pony show until something is actually proven safe and restoring function. I am willing to listen and learn about the science and others ideas. I am willing to advocate for a sci cure by helping in any way possible to get the therapies to clinical trial so we can find the very best and not waste time or money on anything that’s going downhill. I remain open minded and interested.”

[sci1998]

are you so uninformed that you don't know that Wise Young is a controlling factor on unite to fight? It's run by his worshippers/moderators. And that's why I post here and not on carecure! You will learn. Instead of telling me to visit Wise's satelite site what do you feel about how methylprednisolone was issued standard of care, and how ampyra with Andy Blight in Young's lab chose to screw us and have a shrewed work around to efficacy? Or why Young needs results from china to get permission to do cord blood and lithium? You ignore important stuff!!!!!!!!!!!! I'm not saying Wise belongs in jail, but it sure ain't far fetched. Answer the questions, all you give is full respect to get screwed once again.

Edited by sci1998, 16 July 2011 - 06:51 PM.

[sci1998]

Quote

“I’m a hard core SCI advocate in the purest form

Meaning you settle for crap? Hate to have to say that, but thats the truth, your blind faith will get us no where.

[love&hate]

Oh god, you never stop do you? All I care about are results. If trials in China/HK will yield no results they wont be able to start trials in US and they wont sell anything. I would assume they will just move to something else. You repeat yourself. I know all of this. Like I said we are on the same team. Why theres so much hate in you. If you dont like U2FP find some other organization. Do something that matters. Picking a fight here wont change anything.

[sci1998]

Did you read my links and see how Wise screwed us? Does that make any difference to you? I mean methylprednisolone and ampyra and his cord blood and lithium even with such lax fda approval he couldn't get it because it lacks pre-clinical data- whats your answer. Mind you, I hold you responsible for allowing us to be given crap that don't work!!!!!!!!!!!

Hey spend billions on a treatment to wiggle your toe, which the placebo group can do just as well. Your hurting a decent cure by your blind faith. Thanks

Hey, methylprednisolone was crap, ampyra is crap how much more leeway we should give this guy?

suck it up am I right. and I bet you can walk. I can't

And yet I rather see research that helps vents breath on their own. Your selfish

Edited by sci1998, 16 July 2011 - 07:53 PM.

[sci1998]

All you've shown is hopeful blind faith and ignored all my documented posts. You give Wise more reason to give us crap. Oh and I should not challenge senor Wise cause he may leave us. OMG. He's collected millions and made millions already and tell me what and how did he help you? As far as I am concerned his credibility stinks. He's not alone, this happens with cancer research too. But, being I am sci he Wise got a big mouth He just doesn't deserve the blind faith newbies give him. And he works hard on your support. It's sad to say the least.

Think again next time you say he dedicated his life to you. His pockets are full and you still a sci. In my opinion this is no better than Bernie Madoff. Both schemers

sci1998, on 16 July 2011 - 07:56 PM, said:

All you've shown is hopeful blind faith and ignored all my documented posts. You give Wise more reason to give us crap. Oh and I should not challenge senor Wise cause he may leave us. OMG. He's collected millions and made millions already and tell me what and how did he help you? As far as I am concerned his credibility stinks. He's not alone, this happens with cancer research too. But, being I am sci he Wise got a big mouth He just doesn't deserve the blind faith newbies give him. And he works hard on your support. It's sad to say the least.

Think again next time you say he dedicated his life to you. His pockets are full and you still a sci. In my opinion this is no better than Bernie Madoff. Both schemers

I document my points, you have blind faith and nothing else.

[love&hate]

You keep repeating yourself over and over again. Like a broken record and yet you refuse to do anything about it. You keep whining and at the end of the day it does not matter. I understand your frustration but I dont understand your attitude. You feel so strong about it and yet you are useless. You are not going anywhere with this. So much unnecessary anger.

You do realize that so far there was no successful restorative treatment for SCI. That means most of the research and trials failed to deliver. Yes, including those attempted by Wise. Do you really think that all the research done to this day that failed was useless. I tell you not. I think they learned from their past mistakes and moved forward for better future. We all learn from past mistakes. Small steps, soon we gonna get there.

Also, you might wanna learn how to use "you are/ your".

[sci1998]

Hey answer my questions?

If the fda allowed trials with bird poison(ampyra) how come he can't do his cord blood and lithium? Why should it depend on data from china?
and if it's that far away from even being allowed to be tried why the heck should he want to try it globally? He got a license with stemcyte which the corrupt NJ governor gave a grant to. And I should trust him?

love&hate, on 16 July 2011 - 08:11 PM, said:

You keep repeating yourself over and over again. Like a broken record and yet you refuse to do anything about it. You keep whining and at the end of the day it does not matter. I understand your frustration but I dont understand your attitude. You feel so strong about it and yet you are useless. You are not going anywhere with this. So much unnecessary anger.

You do realize that so far there was no successful restorative treatment for SCI. That means most of the research and trials failed to deliver. Yes, including those attempted by Wise. Do you really think that all the research done to this day that failed was useless. I tell you not. I think they learned from their past mistakes and moved forward for better future. We all learn from past mistakes. Small steps, soon we gonna get there.

Also, you might wanna learn how to use "you are/ your".

THEY LEARNT THEY COULD GET AWAY WITH USELESS TREATMENTS BEING APPROVED! READ MY POSTS AGAIN! http://www.acorda.co...1-10_InVivo.pdf

Edited by sci1998, 16 July 2011 - 08:24 PM.

[sci1998]

Your blanket statement I don't know anything is wearing thin, I posted good evidence and all you have to show is hope based on hype.

[love&hate]

Your evidence is useless if you are not going to do anything with it. Stop this pointless rant and do something about it. If you wish to stay passive in your comfort zone you are not helping at all.
Every time I try to to give you my hand you cut it off with another angry post. Take a deep breath and do something meaningful for gods sake

Edited by love&hate, 16 July 2011 - 09:06 PM.

[love&hate]

I'm not your enemy. For third time, we are on the same team. Its not like I'm taking an active approach to sponsor Wise. I just chose to believe that people have hearths is the right place. I was always surrounded with good people and I tend to trust strangers. How horrible person he would have to be to fit in your accusations. Even if you are right which i think you are not I still will be interested in his trials. I think you exaggerated the situation. Your attitude is just awful and you are not helping in any way. We all gonna have to wait for trials to end with our final judgment.

Edited by love&hate, 16 July 2011 - 09:29 PM.

[sci1998]

Wrong and this is what you don't get. Drugs can get approved and it takes years to find out they didn't work. Methylprednisolone was approved in 1990 twenty years ago. The trials prove nothing. The scary part is you would trust Wise even over logical proof of wrong. That's my beef in a nutshell.

Edited by sci1998, 16 July 2011 - 09:59 PM.

[sci1998]

BTW, love and hate I know you mean well and are not saying what you say so drug companies and unscrupulous researchers can rip us off. You want to believe. But just think about the harm we let happen when we believe in poor treatments. Did you read how Wise and his buddies got a treatment approved by manipulating a trial? http://www.acorda.co...1-10_InVivo.pdf You think that was good? Love the part when they figured out how they could pull it off and they bumped chests.

Edited by sci1998, 16 July 2011 - 10:14 PM.

[jscott92064]

Thank you SCI1998 and love&hate for taking the time to post on this forum. I learned so much from both of your viewpoints. Thanks!!!

[sci1998]

Why don't you share what you think?

[sci1998]

Tell u what, before you answer, do u think any sci would rather not be cured? Do you think old timers love bowel and bladder, depending on others? No ejaculation, hey and I am a para, I have it easier than my quad buddies. I ain't attacking reseach and biotech for the pleasure, they are being attacked by me cause they screw us. They offer bullshit. And I don't think we should give them any credit. I despise Wise Young. He even went as far as saying ampyra is the first treatment that address symtoms and not just progression of MS. He should have said also ampyra doesn't stop the progression of MS. 1/2 a second and placebo group not far behind. Yet they will steal a billion bucks that should have gone to better care, yes care, wheelchairs, walkers, whatever. But these researchers stealing your quality of life with no cure in site.

[jscott92064]

sci1998, on 17 July 2011 - 05:28 PM, said:

Tell u what, before you answer, do u think any sci would rather not be cured? Do you think old timers love bowel and bladder, depending on others? No ejaculation, hey and I am a para, I have it easier than my quad buddies. I ain't attacking reseach and biotech for the pleasure, they are being attacked by me cause they screw us. They offer bullshit. And I don't think we should give them any credit. I despise Wise Young. He even went as far as saying ampyra is the first treatment that address symtoms and not just progression of MS. He should have said also ampyra doesn't stop the progression of MS. 1/2 a second and placebo group not far behind. Yet they will steal a billion bucks that should have gone to better care, yes care, wheelchairs, walkers, whatever. But these researchers stealing your quality of life with no cure in site.

Everyone wants to be cured and no longer have SCI. To me, that's a given.

Everyone has their own ideas on what price they will pay in search of "the cure" and to be cured. Also, to me - that's a given.

I think we have to question everything and all motives as to why something is being offered to us.

I appreciate researchers like Wise Young engaging with the SCI community. I hope people like you, SCI1998, question him directly in open forums and he provides answers for all to see.

I also want to see people like "love&hate" encouraging research and reminding us to be hopeful. There are days hope seems so far away for me.

This post has reminded me to look at all sides and opinions. I do not trust the medical community blindly. That is what drew me to your posts, SCI1998.

However, I do not want to become jaded because then I may miss an opportunity. And this is what draws me to love&hate's posts.

I do not know enough about Wise Young to be beneficial to this discussion. I think you've both made some very good points that I am taking to heart.

[sci1998]

JSCOTT
Your sentiments are appreciated. All I am looking for is higher standards so we get something that works. Not lower standards, just so we can have an fda approved treatment that's not better than the off shore ones. A treatment that doesn't need jiggling the data to make it look good.

[jscott92064]

sci1998, on 18 July 2011 - 10:20 AM, said:

JSCOTT
Your sentiments are appreciated. All I am looking for is higher standards so we get something that works. Not lower standards, just so we can have an fda approved treatment that's not better than the off shore ones. A treatment that doesn't need jiggling the data to make it look good.

Makes sense and seems fair to me.

It's easy to fall prey to good medical marketing. I know because I did. Everything about the procedure made sense, there were good references, and on paper everything looked wonderful. I did what I thought was a ton of research.

Only one guy said something not very positive and looking back now, how I wish I had explored why he said that.

Fast forward to now, I am paying the ultimate price for not checking out the theory of that "one guy" whose opinions was so different from all the others.

Because of the situation I am in, I cannot say much more and will leave it at that.

You remind me of "the one guy" who I wished I had listened to and/or at least explored why he may have been right.

I need to make time to explore why you may be right in your thinking because you remind me of "the one guy" that in hindsight I should have listened to.

Don't know when I will get to reading everything you posted (as well as check out what others say about Wise Young), but I will.

Edited by jscott92064, 18 July 2011 - 02:32 PM.

[sci1998]

jscott92064, on 18 July 2011 - 01:56 PM, said:

sci1998, on 18 July 2011 - 10:20 AM, said:

JSCOTT
Your sentiments are appreciated. All I am looking for is higher standards so we get something that works. Not lower standards, just so we can have an fda approved treatment that's not better than the off shore ones. A treatment that doesn't need jiggling the data to make it look good.

Makes sense and seems fair to me.

It's easy to fall prey to good medical marketing. I know because I did. Everything about the procedure made sense, there were good references, and on paper everything looked wonderful. I did what I thought was a ton of research.

Only one guy said something not very positive and looking back now, how I wish I had explored why he said that.

Fast forward to now, I am paying the ultimate price for not checking out the theory of that "one guy" whose opinions was so different from all the others.

Because of the situation I am in, I cannot say much more and will leave it at that.

You remind me of "the one guy" who I wished I had listened to and/or at least explored why he may have been right.

I need to make time to explore why you may be right in your thinking because you remind me of "the one guy" that in hindsight I should have listened to.

Don't know when I will get to reading everything you posted (as well as check out what others say about Wise Young), but I will.

Thanks for your understanding and how you relate to some of the things on my mind.

[chrisarnold6]

greybeard, on 14 July 2011 - 11:00 AM, said:

I don´t go to the "other place" so have no idea what is or is not said there. But don´t you both think that you have now made your points clearly enough to remove any possibility of doubt from your readers? Repeating them over and over is not going to bring any new converts to your causes. It will simply make them disinclined to read any further posts from you.

It appears that this good counsel as been ignored!

[mcferguson]

Below is a summary provided by Dr. Young of some current treatments, based on sound science, that need to be evaluated. I understand that data can be manipulated and that if something is FDA approved, it may not work as promised. However, the clinical trial system is the best we have right now, and infinitely better than the system we had 60 or so years ago. I am glad there are scientists dedicating their time and efforts to fix us, and I am glad there are companies willing to invest their resources also.

Dr. Young responded to the question "Wonder can a 100 million fix me?"

"$100 million will help. I don’t know whether it will be enough, considering that it now takes over $1 billion for a pharmaceutical company move one therapy from discovery to market. On the other hand, we can do it more cheaply with standing clinical trial networks that are set up to do trials, reducing the cost of having to set up and train staff to do trials for each therapy.

Many therapies have been reported to regenerate the spinal cord of animals. Few of these therapies have been tested in clinical trials. Let me name a few of these therapies:

• Olfactory ensheathing glia (OEG). Over 100 papers have been published since 1992, reporting that OEG cells will stimulate regeneration when transplanted into the spinal cord of rats. In China, they have transplanted these cells into over 1600 people and while there has been some controversy over the efficacy of OEG, it is clear that they can be safely transplanted into the spinal cord. The problem is that we don’t have an immune-compatible source of these cells yet. Fetal OEG are not immune-compatible. While OEG can be grown from nasal mucosa, nobody has reliably done so. OEG can also be isolated from a person’s own olfactory bulb but there needs to be more data that these cells restore function before people give up an olfactory bulb for this purpose.

• Umbilical cord blood mononuclear cells (UCBMC). Over a dozen laboratories have reported the UCBMC improve recovery in rats when transplanted into the spinal cord shortly after or up to a week after spinal cord injury in rats and dogs. Lithium strongly stimulate these UCBMC to proliferate and to produce growth factors (neutrophins) known to regenerate. ChinaSCINet is testing each of these treatments and in combination to treat chronic spinal cord injury. If this treatment improves function, this would be the first therapy to do so for chronic spinal cord injury. UCBMC are available from cord blood banks. Lithium has been used for over 50 years to treat manic depression.

• Nogo antibodies. This was the first treatment shown to regenerate the spinal cord of rats. First discovered by Martin Schwab in Switzerland to regenerate the spinal Novartis is now testing human nogo antibodies in people with subacute spinal cord injury. The company is evaluating the data to decide whether or not they will go into phase 2 or 3 trials. There is substantial evidence from multiple laboratories that nogo does stop axonal growth although much data suggest that Nogo is not the only axonal growth inhibitor.

• Cethrin. Nogo acts on a receptor that activates an intracellular messenger called rho and that is turned on by rho kinase. Activate rho turn off growth responses in neurons. Many drugs block rho kinase or rho and are called rhok and rho drugs. A bacterial toxin called C3 blocks rho. A version of C3, modified to enter cells and called cethrin, has already been tested in clinical trials. The initial results of the trial are quite promising, converting as much as 30% of patients who are ASIA A (complete spinal cord injury) to ASIA C (motor incomplete spinal cord injury). Unfortunately, the company that was taking the drug to clinical trial ran out of money.

• Chondroitinase. This enzyme has been shown to break down chondroitin-6-sulfate proteoglycan (CSPG). Present in extracellular matrix and secreted by glial cells, CSPG stops axonal growth. Chondroitinase breaks down CSPG and allows that axons to grow across the injury site. Over 100 laboratories have reported beneficial effects of chondroitinase on many conditions, ranging from spinal cord injury to brain injury. The drug itself is sensitive to heat or oxidation and must be freshly applied to the spinal cord. However, several modified versions of the drug have been reported, including a less heat-sensitive form.

• PTEN inhibitors. Recently, a study from Harvard and UC Irvine showed that blocking a factor called PTEN remarkably allows corticospinal tracts to regenerate in the spinal cord. This factor appears during development as the brain matures and loses its ability to regenerate. It inhibits an intracellular messenger system called mTOR. Inhibition of PTEN and activation of mTOR increases growth of cells and contributes to cancer. Axonal growth inhibitors such as Nogo and CSPG are not the only factors that prevent regeneration. Blockade of PTEN and boosting of MTOR allows axons to regenerate.

• Combination therapies. Miami Project pioneered the first combination therapy to regenerate the spinal cord. Xiao-Ming Hsu, for example, showed that combination neurotrophins (NGF, NT3, and GDNF) remarkably stimulate axonal growth through Schwann cell channels placed in the spinal cord. Many laboratories have confirmed this finding. They also showed that increased cAMP in neurons, using a phosphodiesterase inhibitor called Rolipram, 8-dibutryl-cAMP, and Schwann cell transplants, resulted in substantial regeneration in the spinal cord. Lithium has been reported to enhance the effects of chondroitinase. ChinaSCINet is testing the first combination therapy, i.e. UCBMC and lithium, for chronic spinal cord injury.

These are just the first treatments. Many more are waiting in the wings. Funding is necessary to develop these therapies and to take them to clinical trial.

Wise."

[sci1998]

Sorry, but he gets paid to raise money. What do you expect him to say? So far the 2 treatments he had his fingers in, MP and Ampyra are not worth it. MP is no longer a standard of care and I predict Ampyra will follow, although look at the money that will be miss spent until Ampyra follows the same fate as MP. The sad part about Ampyra is the FDA did it's job and it's reviewers gave negative reports, however it was overturned by higher ups and because of pressure from the MS Society. Just like big pharma pays doctors to prescribe their meds they also donate to the patient groups that are supposed to look after our well being, but wind up supporting the arm that feeds them. It's human nature. Most doctors at first have the best of intentions, but in order to survive they cave in.

I miss Christopher Reeve, He warned us about this

Quote

Why do we have to base it on the bottom line for companies? Where is the idealism that should form medicine?'...I don't want to turn this into a political forum, but I do have to ask questions that are very troubling." Reeve's final thought for the graduates was to be daring because he sees all doctors as ethical and monitored: "And so my hope is that all of you, whatever your political persuasions are, whatever your religious persuasions are, whatever your own personal feelings are, again, that idealism that you have today about service, about what medicine means, about what you can do, please don't lose that. Please don't lose that in the middle of your path as you go on in life because we need pure medicine. We need the best medicine. We need ethical behavior, ethical conduct but doctors are ethical. Their conduct is monitored. I believe in doctors." http://chrisreevehom...com/n-2002.html

That's why this forum is so necessary. You wouldn't stand a chance trying to get this message out on Young's forum, although I agree much information there changes hands there about cathing sores, etc, but that's not worth being bullied to put him on a false pedistal, when it comes to research and cure and funding it's set up for the benefit of Dr. Young and protecting his interests with selling low hanging fruit treatments for biotech monetary gains.

Edited by sci1998, 19 July 2011 - 04:12 PM.

[Hikkakaru]

lots of armchair bio-tech scientists in this thread. I'll get a kick out of reading back on all this in 5 to 150 years while I'm doing my cardio routine on the treadmill.

[Tyran21]

Any way still hoping for a cure. Cheers everyone!