Tuesday, February 24, 2009


I thought the W-FIVE story turned out well and didn’t contain any misinformation or a biased perspective. All viewpoints were presented in a fair manner and other than Dr. Freedman’s personal opinion; I don’t feel that there was a negative slant towards stem cell treatments offered in China. On the contrary, I found Dr. Freedman’s case to be less persuasive and convincing to someone like myself who is on the suffering end of this debate. Not to take anything away from his amazing achievements because I truly appreciate and recognize the importance of the research he is doing but it does not offer a direct treatment option.
I have seen how fast this disease can turn and completely devastate a body, I actually feel lucky when I compare myself with others that have deteriorated to complete incapacitation within one or two years. When one faces this possibility a sense of desperation is natural as I stated in the interview. The point I really hoped would be expressed by the documentary is that hope does exist. Judging by the feedback I’m receiving, that point was successfully conveyed! I had over a dozen email messages by 10 o’clock that evening, all of them very positive. I’d like to thank everyone who is sending out such encouraging support to me, I really enjoy the communication that has opened up. I’ve had several phone calls from out of the blue from people wanting to discuss my experience and ask questions which I think is great. The more exposure that is created the easier it will be for people to find information on what options exist. Travelling to China for stem cell transplants might not be the best option for everyone, this is a personal decision for every individual but everyone should at least have knowledge of what is available.
I think Dr. Freedman’s study began in 2000, now nine years later and only 18 people have taken part with one of them dying. There are very similar studies occurring simultaneously in the US and elsewhere but again the number of participants is very low and it is difficult to find a control group because everyone wants the treatment! As promising as this research may look, it will likely be past 2020 by the time anything is approved and made available. At the same time there are plenty of new and promising research projects going on throughout the world and somebody could come up with a breakthrough anytime but this is hopeful speculation and doesn’t offer any current alternatives. Of coarse the mainstream medical research bodies will be sceptical of what the Chinese are doing but the point is that they are doing something and that something is tangible and real now. What they are doing is creating hope and after being there myself, this is a hope based on real life experiences not just fictitious episodes or placebo induced improvements that many researchers would claim. Beike Biotech is operated as a business but the compassion and caring demonstrated by every person involved in the stem cell program was amazing so I have to refute Dr. Freedman’s statement that the only reason for their existence is to take peoples money.
I am happy to report that Beike seems to be responding to its patient’s recommendations and has initiated a more thorough follow up procedure. Just yesterday I received an email requesting information about the results I’ve experienced since leaving China in order to help Beike with their own research as well as improve their treatments for new and returning MS patients. One form is an MS Daily Life Functional Rating Scale and the other is clinical data from blood and urine tests that have very comprehensive requirements. I’m not sure what my doctor or the lab will think of their request but I am impressed that they are now taking this seriously and that the information request is not generic to stem cell treatments but focused on multiple sclerosis. I really believe that what the Chinese are doing is world class and they represent the future for development of stem cell treatments and yes cures!
I realize that there are many new people becoming aware of my blog since the W-FIVE documentary so those that haven’t followed are all curious about how I’ve been doing. Without getting into the details of my post transplant recovery that I may have already written about, I’ll just say that I feel better than before I went. Not that I can claim any great improvements and I still experience many MS difficulties but overall I think I’m better and more importantly, I know I’m not worse. Describing my progress is like watching your children grow up, you hardly notice them changing because you see them all the time but when you look back 6 months or a year the changes are huge. Although I still have many problems I can do things today that were not possible before I went to China. It still depends on the day but when I’m feeling good I often surprise myself with how well I’m able to walk or climb stairs. Time will be the ultimate judge of success but I still feel encouraged and yes I am still very happy that I made the journey!
I’m always happy to discuss my experience or share information with others who are interested in stem cell transplants so please keep up the communication. I can’t promise that I’ll be able to reply to all enquiries and emails but I’ll do my best.

No comments: