28 replies to this topic

[25femalepara]

In delhi india dr.geeta shroff has made hundreds walk again with her stem cell research. !!

[topperf]

And she still wont let the international SCI research community (if such truly exist - still, I think you catch my drift) in on what it exactly is she is doing.
That makes it a no go for me - there are better alternatives and research you could support with your money.

[25femalepara]

Maybe because she doesn't want people stealing her ideas. Selfish? Yes. But she has made people walk again.

And what better alternatives are you talking about maybe you do know better ways to break free from this hell.

[evilmac64]

I dont have any thing to say but if this doc can heal and wont share with the world she should get her back broke

[chrisarnold6]

I don't think intellectual copyright is an option in medicine. Surely the whole medical community should talk. If this is a genuine cure, it should not be rationed to one country. We're not talking about a computer program here, but of course just credits should apply to this work. Jenner and Pasteur are remembered for their achievements, and they shared their knowledge.

[mcferguson]

25femalepara, on 17 August 2010 - 05:18 AM, said:

Maybe because she doesn't want people stealing her ideas. Selfish? Yes. But she has made people walk again.

And what better alternatives are you talking about maybe you do know better ways to break free from this hell.

There aren't any scientifically verifiable therapies yet, but clinical trials, like this one, are starting:

Richard Garr, Neuralstem’s President & CEO, said, “2010 continues to be a year of major milestones for Neuralstem. We started by moving into the clinic to treat Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease) with our spinal cord neural stem cell therapy. We also completed the necessary financings to fund our transition from the laboratory into the clinic for multiple trials that we expect to start in the balance of the year. Towards that end, we expect to file an IND for a Phase I safety trial for chronic spinal cord injury with the FDA later this month. We also expect to file an IND for a Phase I safety trial for major depression for our small molecule drug in the fourth quarter.”

[greybeard]

25femalepara, on 17 August 2010 - 05:18 AM, said:

Maybe because she doesn't want people stealing her ideas. Selfish? Yes. But she has made people walk again.

And what better alternatives are you talking about maybe you do know better ways to break free from this hell.

When the guy on their promotional video claims to have seen patients with a complete cord injury walk just four days after treatment, I'm afraid I start to disbelieve all of their other claims as well.

[chrisarnold6]

I had a look at web searches on her. Apparently there have been successes. These are the sort that change the life of the subject. If these claims are false, then without a doubt such fraud should be exposed. On the subject of rip offs, let's consider the current status quo in the western hemisphere. There are many agencies with large annual turnovers, (w/chair manufacturers, surgical appliance suppliers etc) who have a strong motive for not finding a cure for SCI. A terrible thing to say? Perhaps, but there is no doubt that while circumstances remain the same, a lot of people are able to rake in the bucks, and any supporting health system has to bear the financial cost of a spiraling need.

[mohit_para]

25femalepara, on 09 August 2010 - 06:21 AM, said:

In delhi india dr.geeta shroff has made hundreds walk again with her stem cell research. !!

i have talked to her assistant many times regarding stem cell treatment..their is nothing scientific she can explain to you regarding stem cell therapy. she is unable to explain the actual mechanism of working of stem cell to heal spinal cord injury..so i did not chosen her. i have taken stem cell bone marrow stem cell injections from some other place in India.. the major changes i felt after injection are total disappearing of neurogenic pain and a slight improvement in muscle tones..

[love&hate]

Human trials beginning this year in USA. Patience is a virtue. We have been waiting for so long. Might as well wait another few years. We should know everything once the real documented and transparent information is delivered to us from lead researchers in USA. Lets rely on facts rather than emotion. We will have our answer soon. Meantime I am investing all my money into education to grow intellectually and expand my horizons. Something that will pay for my future stem cell therapy if those will end up being effective.

Edited by love&hate, 01 November 2010 - 12:09 AM.

[chrisarnold6]

mohit_para, on 30 October 2010 - 08:31 PM, said:

25femalepara, on 09 August 2010 - 06:21 AM, said:

In delhi india dr.geeta shroff has made hundreds walk again with her stem cell research. !!

i have talked to her assistant many times regarding stem cell treatment..their is nothing scientific she can explain to you regarding stem cell therapy. she is unable to explain the actual mechanism of working of stem cell to heal spinal cord injury..so i did not chosen her. i have taken stem cell bone marrow stem cell injections from some other place in India.. the major changes i felt after injection are total disappearing of neurogenic pain and a slight improvement in muscle tones..

I wonder if Dr Jenner fully understood the micro biology of smallpox vaccine? Surely much less than today. He was controversial because people did not believe it was a cure.

[Tinbasher]

chrisarnold6, on 01 November 2010 - 03:50 PM, said:

I wonder if Dr Jenner fully understood the micro biology of smallpox vaccine? Surely much less than today. He was controversial because people did not believe it was a cure.

That was almost two hundred years ago.

We cannot seem to say this often enough.

The person who successfully finds a therapy for Spinal Cord Injury will win the Nobel Prize. Why would they keep it secret just to earn a few dollars?

Just because we wish it will not make it true.

Tin

[Rainey]

I am a wife to a C4 complete quadriplegic and what I do not understand is why not try something to help one move especially in the case of a quadriplegia? I can understand that Dr Shroff is considered a maverick in her field, does not publish her findings but what about the results? Has anyone who made the comments above actually been and experienced her stem cell treatment in Delhi? Have you met or spoken with anyone who has been there? and what were their results?

The FDA approves Geron in the first stages of trials with embryo stem cells. Their trials are based on paraplegics who are newly injured by 14 days. I nearly laughed when I read that. Who on earth is going to predict an accident leaving them a paraplegic and who are the ones chosen to actually be accepted in this trial?

It is a fact that pharmaceutical companies earn big bucks from either a quad or para, I guess I don't see how embryo stem cells will be the way forward in Western life as how will Governments allows this to proceed with such great losses at hand. People in power have a tendency to show they are only after the bucks, not human life itself. Pharmaceutical companies will not be happy about losing their chunk from paralysed patients plus, what about the religious people, how will they allow embryo stem cells to go forward without them thinking its a life taken away? Seems to me its got more legs than an octopus!

Simply, I get we are all different and will have our share of opinions but how can one truly know what its like having your quality of life changed so dramatically. Your mental health is the only thing that will survive and without proper support, if that fails, what hope does a paralysed person have?

I believe Dr Shroff offers hope. I speak from personal experience. We have been to Delhi and received our first round of treatment and, without any doubt, I have met people who now move, cut spinal cord and all! Quadriplegics who now have a better quality of life, 100% feeling back in their bodies, bladder, bowel sensations, lyme disease patients on the road to recovery, paraplegics who are walking with the help of a walking frames and many more stories. From our first trip my husband gained a significant amount of strength and yes movement! We will be endeavouring to take another trip in a few months time to continue the process too.

I did not find Dr Shroff to be a greedy, selfish human. She is very open about her work with her patients. In fact, once a month she has a Q&A meeting with all her patients and carer givers, local and foreigners. Hearing everyone journeys is amazing, yes pure amazing. Dr Shroff is open to all questions and my husband and I have certainly entertained and narrowed down such questions which we thought she would find it difficult to answer. At no time did we ever find her to be unavailable, not willing to answer us, help, advise and even simply listening to our experiences and all about our lives. Still to this day she emails us wanting to know my husband's progress. Dr Shroff has also administered these stem cells to her own mother who suffered a stroke and her mother is back to her life prior to the stroke. We met her so that is a fact I know for certain.

My point is, I don't believe anyone should knock something unless you try it. Many avenues in life are a gamble. I'm certain you all know someone who is doing something that is either financially, emotionally, physically or even spiritually wrong. We are all entitled to our opinions and our journey is experiencing embryo stem cell with Dr Shroff and many who choose to wait for Geron to make this available to the general public then you are entitled to wait for this road to open up too. Good luck everyone and for those who want to know the future progress of my husband or any other questions, please let me know.

Thanks.

[sci1998]

This illustrates the power of the placebo effect, and most of the time that's all you'll be getting from expensive FDA approved medicine also.



Lies, damned lies, statistics… and then there’s clinical trials

[chrisarnold6]

sci1998, on 28 July 2011 - 11:06 AM, said:

This illustrates the power of the placebo effect, and most of the time that's all you'll be getting from expensive FDA approved medicine also.



Lies, damned lies, statistics… and then there’s clinical trials

Oh God! Not again! Science also involves keeping an open mind. Obviously you think that Rainey is delusioned, or maybe intoxicated!

The term placebo is bandied about as an explain all, and I don't think it applies here in any case. If someone has been cured by way of this mysterious beast, good luck to them!

[mcferguson]

sci1998, on 28 July 2011 - 11:06 AM, said:

This illustrates the power of the placebo effect, and most of the time that's all you'll be getting from expensive FDA approved medicine also.



Lies, damned lies, statistics… and then there’s clinical trials

Gimme some placebo!

[sci1998]

mcferguson, on 28 July 2011 - 07:08 PM, said:

sci1998, on 28 July 2011 - 11:06 AM, said:

This illustrates the power of the placebo effect, and most of the time that's all you'll be getting from expensive FDA approved medicine also.



Lies, damned lies, statistics… and then there’s clinical trials

Gimme some placebo!

I like that! And I am aware of the importance of the healing properties of a doctor with a good bedside manner too! But, that won't cure cancer or reconnect nerves. That's why I am so against the FDA approving treatments that can't even beat a placebo effect. I ask again should we be paying a billion dollars for ampyra which is a me to drug in the past available for pocket change and now about 1,500 dollars a month and it wasn't even shown with out a doubt to beat the placebo. I am not against the cure, but we should expect for our bucks, lbs, pesos something worthwhile.

Edited by sci1998, 28 July 2011 - 11:10 PM.

[25femalepara]

I just need some type of hope it cant hurt to try it really cant get any worst than this

[25femalepara]

I see nobody had anythiny to say after she said she took her husband there and its not,bullshit !

[greybeard]

25femalepara, on 01 March 2012 - 08:38 AM, said:

I see nobody had anythiny to say after she said she took her husband there and its not,bullshit !

It had all been said already. No point in repeating it as nobody is going to change their minds.

[Tetracyclone]

Someone just posted a link yesterday to a study of 7 patients out of the 3000 treated by a certain neuro in Beijing. Actually, it can get worse- many of them suffered infection (meningitis) post-operation, and none had measurable function improvement. One experienced a bit of improvement in sensation.

Hope is a grand thing. Risking illness is not.

[julibugs]

I have just read this thread and it made me very sad. I agree that any doctor who finds a cure for sci should and would be shouting it from the rooftops to not do so is so unfair.

The point about wheelchair manufacturers making money out of the sci world is only partially correct - people with sci are very few in number compared to the general population, there is never going to be a huge profit to be made when the demand for your equipment is minimal compared to a manufacturer of goods for the ab market. Yes our equipment is overpriced but we should be grateful for the choice we have today compared to 15-20 years ago.

Stem cells are harvested from the inner cell mass of the blastocyst seven to ten days after fertilization, yes there are some who would consider this the sacrifice of a life but I think we can safely assume that anyone feeling that way will not want to be treated with stem cells.

Yes I believe that one day there may be a cure for sci and I hope and pray that there will also be a cure for cancer, autism and acquired brain injury, we are alive, we have friends here and we can participate in healthy debate.

We will all be thankful for the trailblazers who become the first to try the successful treatments first, but let none of us forget that there are some sci people who are vulnerable and easily taken advantage of.

[greybeard]

julibugs, on 01 March 2012 - 10:09 PM, said:

but let none of us forget that there are some sci people who are vulnerable and easily taken advantage of.

...........and there will always be plenty of unscrupulous people prepared to relieve the vulnerable of their wealth.

[Miss Donna]

greybeard, on 01 March 2012 - 10:28 PM, said:

julibugs, on 01 March 2012 - 10:09 PM, said:

but let none of us forget that there are some sci people who are vulnerable and easily taken advantage of.

...........and there will always be plenty of unscrupulous people prepared to relieve the vulnerable of their wealth.

And they really don't care if you have to 'sell a kidney' to get your wealth.

[edlee]

Has anyone heard from Rainy?? She is the one who claimed recovery for her husband. That was last July,, so there should, hopefully, be even more by now. We would all be very interested in what she has to say.

All too often, what one wants is hope. Not proof,, as you might want for some sort of investment,,,, but just the glimmer that some good will come of the tremendous risk and expense. Placebo effect isn't even a part of this. It's actually more of a ,, wishful thinking. One keeps looking for signs of success,,,, until ,, finally,, they believe they see it.

I sincerely hope that what they believe they see,, is real. I just can't see it yet.
ed

[love&hate]

It might be harsh to say but delussion comes hand in hand with desperation. My advice use your money to make your life better or save it for the real thing.. if the real thing ever comes.

[Heather Jackson]

How much does it cost, does anyone know? Is it reasonable price and have any of you expeirienced the shots?

[edlee]

There is a thread about a clinic in Arizona,,, the poster quoted a price of about $10,000,, but didn't say how many injections, nor about any therapy. Another went to Panama, and there total cost was around $50,000 but they got a number of injections and a lot of therapy over the course of a month,, and if I'm not mistaken, that included their apartment and plane tickets.

The ones in China run about $25,000 plus expences,, the one in Portugal was about the same. The ones in India, I have never heard quoted.

So, as you can see,,,, it's expensive,, and the quality of the facilities are QUITE varied. Like they used to say " Ya pays yer nickel, and ya takes your chance". The more desperate one happens to be, governs how good the offers sound.
ed

[Ferreira]

I don´t believe it a bit. Too good to be true. No real proof. Untill proven with undisputed facts nobody will really believe such thing. I would stay away, just my opinion on this Doc.