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Dear Ray / Charles / everyone Thanks a lot for your opinion and advice. I will send a letter to the local newspaper to discuss this matter. I have been reading your articles and have learned a lot from them. The main problem about Parkinson's care in any part of the world (especially my country) is lack of scientifically correct information. I'd like to thank all of you for creating this wonderful parkinson's network - I will inform the Malaysian Parkinson's community about joining this network. It is touching to know that some of the most wonderful things that Parkinson's patients receive are coming from the fellow patients. Even I, as a doctor, have a lot to learn from the Parkinson's patients. Thank you again. Dr Chew, Kuala Lumpur. > Date: Sat, 27 Jun 2009 19:43:41 -0700 > From: [log in to unmask] > Subject: Re: Unproven stem cell treatment > To: [log in to unmask] > > Dr.. Kong > > It sounds to me like you are doing a good job of informing patients and I > like your idea of getting something in the local paper about it. > > People in the US have gone to China for PD stem cell treatment and it is > pretty much an individual decision. The government doesn't do anything, > except if certain proposed laws had been passed, patients could have been > jailed and fined if they got embryronic stem cell treatments somewhere else > and came back to the US. > > Jim Finn had fetal pig cell brain implants (a treatment most of us would > decline) in the US and it seems to have worked well for him. I think > people will still try things even if they know it is unproven and they can > afford it. PD is an awful disease and I felt that DBS might kill me but I > didn't care. No treatment today guarantees a good outcome. > > I think the best we can do is to inform people so they can make educated > choices and it seems you are doing that. > > Ray > > Rayilyn Brown > Director AZNPF > Arizona Chapter National Parkinson Foundation > [log in to unmask] > > -------------------------------------------------- > From: "chew nee kong" <[log in to unmask]> > Sent: Saturday, June 27, 2009 2:37 AM > To: <[log in to unmask]> > Subject: Unproven stem cell treatment > > > Dear Ray and everyone > > > > Thanks for all the wonderful information that you have provided through > > your parkinson's network. > > > > I'd like to share my experience with you and appreciate if you can give > > your comments. Two weeks ago, I discovered that one of my Parkinson's > > patients had undergone a "stem cell treatment" at Kuala Lumpur. This > > patient's daughter heard about the "stem cell centre" from her friends. > > The patient spent RM53000 (which is a huge sum of money) for a course of > > "stem cell" injections (administered into the shoulder muscles). > > > > I explained to the patient that currently stem cell treatment for > > Parkinson's has not been shown to be consistently beneficial for > > parkinson's patients. I also mentioned to her the guideline which was > > issued by the International Society of Stem Cell Research in 2008, which > > aimed to educate the public on the possibility of unproven stem cell > > treatment. > > > > Recently, another stem cell company approached me and claimed that they > > had successful stem cell treatment for parkinson's - direct injection of > > stem cells into the brain. > > > > In my country, people are so gullible and accept "treatments" which may be > > unproven, without consulting the relevant specialists? Does this happen in > > the US? What has the US government done to prevent this problem? > > > > I am considering bringing up this issue in the local newspaper to alert > > the general public about such unproven treatment. Otherwise, more > > parkinson's patients will be victimized. > > > > I'd appreciate your advice. > > > > Dr Chew Nee Kong, Kuala Lumpur. > > > > _________________________________________________________________ > > What can you do with the new Windows Live? Find out > > http://www.microsoft.com/windows/windowslive/default.aspx > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn _________________________________________________________________ Join the Fantasy Football club and win cash prizes here! http://fantasyfootball.malaysia.msn.com ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn