79 replies to this topic

[sci1998]

 love&hate, on 05 July 2011 - 05:30 PM, said:

 sci1998, on 04 July 2011 - 01:50 PM, said:

I understand many want a cure and so do I, but when you become groupies of a researcher with blind faith you show them they can get away with crappy treatments.

I never understood the "half empty glass" people. We have this one life and I really wanna make the best of it. I will stay positive about everything in life no matter what because It makes me happy. It helps me get out of bed every morning and helps me motivate myself for things that need to be done. Even though it may sounds unreasonable I can tell from my experience it often pays up. You probably think you are just being realistic but honestly you do not have enough information about all the trials to come up with such ridiculous claims. Wheres your proof? Show us some data if you wanna convince us. Just dont come up with another conspiracy. Its probably Obamas fault ... or the communists ..they are after our life savings .OMG ..what we gonna do...ZOMG

I sent you an email asking to clarify your post. Hope you didn't mean you love hearing false expectations cause they make you feel better. As I said, I believe a cure is possible, but then again there are those media savy researchers who don't have a clue, that will steal the spotlight and waste good funding. They even can get meaningless treatments approved that take a huge bite out of funding. If you want proof I have plenty. I think there are those though that still would support this fake science and manipulated clinical trials.

[sci1998]

 sci1998, on 05 July 2011 - 08:25 PM, said:

 love&hate, on 05 July 2011 - 05:30 PM, said:

 sci1998, on 04 July 2011 - 01:50 PM, said:

I understand many want a cure and so do I, but when you become groupies of a researcher with blind faith you show them they can get away with crappy treatments.

I never understood the "half empty glass" people. We have this one life and I really wanna make the best of it. I will stay positive about everything in life no matter what because It makes me happy. It helps me get out of bed every morning and helps me motivate myself for things that need to be done. Even though it may sounds unreasonable I can tell from my experience it often pays up. You probably think you are just being realistic but honestly you do not have enough information about all the trials to come up with such ridiculous claims. Wheres your proof? Show us some data if you wanna convince us. Just dont come up with another conspiracy. Its probably Obamas fault ... or the communists ..they are after our life savings .OMG ..what we gonna do...ZOMG

I sent you an email asking to clarify your post. Hope you didn't mean you love hearing false expectations cause they make you feel better. As I said, I believe a cure is possible, but then again there are those media savy researchers who don't have a clue, that will steal the spotlight and waste good funding. They even can get meaningless treatments approved that take a huge bite out of funding. If you want proof I have plenty. I think there are those though that still would support this fake science and manipulated clinical trials.

Are you the type that doesn't want to hear negative reviews of researchers and rather be fooled by the salesmanship they offer? Rather than the truth and a meaningful cure? Yes soonerthen later sounds good. So does you couldn't tell the difference if you had a sci or not. I do have info if you want, but it might wipe away your hope.

[love&hate]

 sci1998, on 05 July 2011 - 08:31 PM, said:

 sci1998, on 05 July 2011 - 08:25 PM, said:

 love&hate, on 05 July 2011 - 05:30 PM, said:

 sci1998, on 04 July 2011 - 01:50 PM, said:

I understand many want a cure and so do I, but when you become groupies of a researcher with blind faith you show them they can get away with crappy treatments.

I never understood the "half empty glass" people. We have this one life and I really wanna make the best of it. I will stay positive about everything in life no matter what because It makes me happy. It helps me get out of bed every morning and helps me motivate myself for things that need to be done. Even though it may sounds unreasonable I can tell from my experience it often pays up. You probably think you are just being realistic but honestly you do not have enough information about all the trials to come up with such ridiculous claims. Wheres your proof? Show us some data if you wanna convince us. Just dont come up with another conspiracy. Its probably Obamas fault ... or the communists ..they are after our life savings .OMG ..what we gonna do...ZOMG

I sent you an email asking to clarify your post. Hope you didn't mean you love hearing false expectations cause they make you feel better. As I said, I believe a cure is possible, but then again there are those media savy researchers who don't have a clue, that will steal the spotlight and waste good funding. They even can get meaningless treatments approved that take a huge bite out of funding. If you want proof I have plenty. I think there are those though that still would support this fake science and manipulated clinical trials.

Are you the type that doesn't want to hear negative reviews of researchers and rather be fooled by the salesmanship they offer? Rather than the truth and a meaningful cure? Yes soonerthen later sounds good. So does you couldn't tell the difference if you had a sci or not. I do have info if you want, but it might wipe away your hope.

Its really easy to recognize so called fake clinics and I dont think anybody who is up to date with research would fall for anything not proven to work in any way. Also, saying that people would willingly gave away their hard earned money to fake organizations looking for profit only rather then to legit institution seems odd. All i can see is a speculation. Post your data and proof for everybody to see. I would love to see it. I dont share your particular view regarding SCInet.

[sci1998]

 love&hate, on 05 July 2011 - 08:56 PM, said:

 sci1998, on 05 July 2011 - 08:31 PM, said:

 sci1998, on 05 July 2011 - 08:25 PM, said:

 love&hate, on 05 July 2011 - 05:30 PM, said:

 sci1998, on 04 July 2011 - 01:50 PM, said:

I understand many want a cure and so do I, but when you become groupies of a researcher with blind faith you show them they can get away with crappy treatments.

I never understood the "half empty glass" people. We have this one life and I really wanna make the best of it. I will stay positive about everything in life no matter what because It makes me happy. It helps me get out of bed every morning and helps me motivate myself for things that need to be done. Even though it may sounds unreasonable I can tell from my experience it often pays up. You probably think you are just being realistic but honestly you do not have enough information about all the trials to come up with such ridiculous claims. Wheres your proof? Show us some data if you wanna convince us. Just dont come up with another conspiracy. Its probably Obamas fault ... or the communists ..they are after our life savings .OMG ..what we gonna do...ZOMG

I sent you an email asking to clarify your post. Hope you didn't mean you love hearing false expectations cause they make you feel better. As I said, I believe a cure is possible, but then again there are those media savy researchers who don't have a clue, that will steal the spotlight and waste good funding. They even can get meaningless treatments approved that take a huge bite out of funding. If you want proof I have plenty. I think there are those though that still would support this fake science and manipulated clinical trials.

Are you the type that doesn't want to hear negative reviews of researchers and rather be fooled by the salesmanship they offer? Rather than the truth and a meaningful cure? Yes soonerthen later sounds good. So does you couldn't tell the difference if you had a sci or not. I do have info if you want, but it might wipe away your hope.

Its really easy to recognize so called fake clinics and I dont think anybody who is up to date with research would fall for anything not proven to work in any way. Also, saying that people would willingly gave away their hard earned money to fake organizations looking for profit only rather then to legit institution seems odd. All i can see is a speculation. Post your data and proof for everybody to see. I would love to see it. I dont share your particular view regarding SCInet.

Are you kidding. You at this point should show me why you believe in Wise. All his efforts has not produced anything. Even his methylprednisolone(which is no longer a standard of care, and not because somehingworks better, but, because it just don't work). Or his 4-ap even though it was approved it doesn't work either which is scary that drug companies can get useless treatments approved by the fda. So will his umbilical cord and lithium be approved because people like you support meaningless treatments. And I don't think that helps our cause one bit, but puts money in Young's pocket and the companies he has ties with. And you still won't walk, have good sex or shit or pee normally

[love&hate]

So you conclude that because his previous treatments didnt work everything he does in future has no chance of working either? Interesting. The animal studies say otherwise. Instead of getting all defensive tell us which trials according to you are those that are worth our attention. Also, I still do not see any information that disproves the potential of umbilical cord and lithium. Why dont you go confront Dr.Wise about your doubts on Care Cure forums. I'm sure he will answer to all your accusation.

[sci1998]

It hasn't been tested in animals

Quote

We were not able to test the therapy that we want to try in humans in rats... i.e. we want to test HLA-matched umbilical cord blood cells and lithium. This cannot be done in animals because if there is no HLA-matching for rats and we don't have a library of rat cells to do such matching. So, we have to transplant human umbilical cord blood cells into the spinal cord. If we don't give cyclosporin after transplanting human cells into rats, the cells would be rejected within 2-3 weeks.

Wise Young

[love&hate]

So you respond to correct my mistake and ignore all the important questions in my post . How can we take you serious? Maybe umbilical blood wasnt tested for obvious reasons but stem cells were proven to work in animal studies and umbilical blood is one of the best sources of them. Yor responses dont convince me. So far you provided nothing but speculation. Wheres the data? Where are legit trials you are talking about?

Edited by love&hate, 06 July 2011 - 05:28 PM.

[sci1998]

Please don't say how can we take you serious, its as if you think everyone else feels the way you do. I think its pretty clear the info I have offered makes sense, whats also clear is you want to believe a cure is moments away, as Young says a person couldn't tell you had an sci. You can even tell its all about hype and marketing, otherwise why do the same trial in china, the usa , norway and india? I rather see other treatments get a chance before going all out on cord blood and lithium. Not here to argue. Here to discuss, learn and share ideas.

[love&hate]

Obviously, we have different views. I assume you cant answer the key questions i keep asking in my posts. You did not provide any information whatsoever. If you are so sure that its all hype why dont you make a post on Care Cure forums in "Cure" sub forum and confront Wise. If what you are saying is true you will save a lot of money from going to waste and keep thousands of people on SCInet from false hope. Its your moral obligation to do so if you know something that so many people do not. Of course i think you are wrong and I have reasons to believe it. I know the treatment is experimental and i know it might not give the results we all would love to hear but that does not mean it will have no effects at all. For instance for some people bladder and bowel is more important then walking or looking like ab. Just dont misdirect again cause for the past few posts you were just picking the easiest part to answer and ignoring everything else.

Edited by love&hate, 06 July 2011 - 08:09 PM.

[love&hate]

I thought so.

[sci1998]

I told you I don't want to argue. With your attitude I certainly wouldn't post on carecure. I have seen how wise's followers torment any opposing view. They even pick on Rick Hansen and the Christopher & Dana Reeve Foundation for being to care oriented. When they see a scientist or a project like Miami Project get a large donation they always say "what a waste it should have gone to Dr. Young" Yes, I'm done chatting with you.

Edited by sci1998, 07 July 2011 - 08:19 PM.

[love&hate]

You are questioning someones work having no arguments to back up your theory. Even though i asked you many times for any bit of information to confirm your accusations you did not provide anything but speculation. You also dont want to confront anybody with opposing view. Its obvious you have no real data/info. If you do not want to post on Care Cure cause you know you have no way to back up your story do not spread misinformation regarding SCInet. I have no desire to continue this discussion. Its a waste of time cause we are not going anywhere with this.

[sci1998]

Quote

In summary, except for some companies funding spinal cord injury clinical trials in the United States we are at the lowest funding level for spinal cord injury research in my 35 years of working in the field. We are of course not alone in these dire straits. Many other conditions, including brain injury and stroke, are in similar funding difficulties. Simply put, the cure bus is almost out of gas and we need to find some gas soon or the bus will stop. (posted today on carecure)

Wise.

Fear tactics!

It just don't add up. Wise the founder of Acorda who will bring in over a billion in revenue soon, even a 400+ million dollar payment from Biogen for a lisensing agreement for distribution of Ampyra in Europe. Don't cry poverty and ask for a dollar a day from poor sci'd. And I understand 4-ap was about 60 or so bucks a month and the timed release ampyra is now about 1300 bucks or more a month, tons of profit on a very marginal if any at all benefit.

[Edinburgh Colin]

My link

ABC news story on first human embyonic stem cell treatment restoring feeling, positive?

Edited by Edinburgh Colin, 13 July 2011 - 06:19 AM.

[lizzyg]

Go for Adipose FAT derived stem cells and they have the best profile for treatment in most cases.

I believe that if in the case of recent injury their is a greater potential for your own stem cells to be of greater benefit.

The reality is that if your body is in bad shape already then your own stem cells may not be as useful.

New techniques mean that your adult stem cells can be expanded and differentiated.

My new friend at www.stem-cell-solutions.com.au said on twitter that they are putting together some article or paper about the potential for expansion of cells.... not sure what it is exactly but Im looking for it now.

Liz

[FlyPelicanFly]

 lizzyg, on 14 July 2011 - 06:22 AM, said:

Go for Adipose FAT derived stem cells and they have the best profile for treatment in most cases.

I believe that if in the case of recent injury their is a greater potential for your own stem cells to be of greater benefit.

The reality is that if your body is in bad shape already then your own stem cells may not be as useful.

New techniques mean that your adult stem cells can be expanded and differentiated.

My new friend at www.stem-cell-solutions.com.au said on twitter that they are putting together some article or paper about the potential for expansion of cells.... not sure what it is exactly but Im looking for it now.

Liz

Please do not make such recommendations without really knowing what you are talking about. These adult stem cell centres that are popping up all over the world are not helping but hindering the scientific field!

Edited by FlyPelicanFly, 17 July 2011 - 11:15 AM.

[sci1998]

 FlyPelicanFly, on 17 July 2011 - 11:15 AM, said:

 lizzyg, on 14 July 2011 - 06:22 AM, said:

Go for Adipose FAT derived stem cells and they have the best profile for treatment in most cases.

I believe that if in the case of recent injury their is a greater potential for your own stem cells to be of greater benefit.

The reality is that if your body is in bad shape already then your own stem cells may not be as useful.

New techniques mean that your adult stem cells can be expanded and differentiated.

My new friend at www.stem-cell-solutions.com.au said on twitter that they are putting together some article or paper about the potential for expansion of cells.... not sure what it is exactly but Im looking for it now.

Liz

Please do not make such recommendations without really knowing what you are talking about. These adult stem cell centres that are popping up all over the world are not helping but hindering the scientific field!

That might be true, but the scientific field is also no better. They only make it appear they are giving you something worthwhile. They go to the extreme of even trying to remove placebo responders from trials, so basically the so called science field is selling a placebo effect.

Quote

What that means is that in most of the trials reviewed, patients who took a sugar pill recovered from depression just as often as those who took the active drug. This study may come as some surprise to both physicians and the general public, whose faith in the efficacy of these drugs has led to over 118 million prescriptions in 2007 and over $16 billion in sales.

But should this really come as a surprise? Antidepressant drugs are thought to act by altering levels of brain neurotransmitters; however, it takes several weeks before these changes can be measured. Yet patients often report symptomatic relief within hours or days of receiving an antidepressant. http://thehealthyske...antidepressants

[sci1998]

Quote

The roots of the placebo problem can be traced to a lie told by an Army nurse during World War II as Allied forces stormed the beaches of southern Italy. The nurse was assisting an anesthetist named Henry Beecher, who was tending to US troops under heavy German bombardment. When the morphine supply ran low, the nurse assured a wounded soldier that he was getting a shot of potent painkiller, though her syringe contained only salt water. Amazingly, the bogus injection relieved the soldier's agony and prevented the onset of shock.

http://www.wired.com..._placebo_effect

[sci1998]

As an sci, I feel so abused by so called legitimate science when they approved ampyra. And look at the amount of lobby money spent by big pharma to have their way. So I guess we shouldn't look for a cure that's better than a placebo!!!!

I don't just blame Pharma I blame the astro turf patient orgs that are also bought by big pharma, like the MS Society.

The system is so corrupt and yet many spinal cord injured still are suckers for the hype.

And just think about how many sci still think Wise is a blessing to sci while he still promotes his career launching methylprednisolone treatment as it has been disproven.

Is it they haven't been exposed to reports that it doesn't work, or do they want to rather be medicated and uplifted and hold on to the hype Young is a master at deliverying?

Guess what, offshore clinics may find a real cure before established junk science does.

Established medicine is not an appropriate way of deliverying a cure. In fact cancer treatments that work in our fda system would not be approved, cause they measure tumor growth as apposed to life extension. Established medicine is a way of just marketing treatments and not on their worth. It's about money-and only money and power, otherwise how come they allow cigarettes?

[sci1998]

At present you'd get more bang for your buck or pound if instead of donating to http://www.adollarplease.org/ you bought someone a wheelchair.