From Julie Stachowiak, Ph.D., your Guide to Multiple Sclerosis
This was intended to go out last week, but a glitch delayed it. In that time, I have received some comments about the ISSCR indicating that not everyone thinks they are unbiased scientists. Take a look at the blog below and see what you think (and leave a comment in the blog comment section – help us all out if you are “in the know” or have an opinion).
(From last week:) Check this out – a professional organization, The International Society for Stem Cell Research, has become tired of all the claims of “cures” and “treatments” offered by so-called stem cell clinics. They have set out to educate potential patients with educational materials and questions to ask, as well as look into the patient protections offered by the clinics themselves. They are doing this to keep stem cell science reputable and to help people make good choices, not to limit them.
I wish someone would do this with places offering CCSVI diagnostics and treatments, as well as maintain a database of outcome data – in other words, follow what happens to all of these folks getting treated in other countries (as well as in the US). Since clinical trials are just getting started and demand far outstrips spaces, a collection of case reports (the good and the bad, as well as the neutral outcomes) would start to give us a much more comprehensive picture than the “miracle stories” and couple of “tragedies” that we see on YouTube and portrayed in the media. Just a thought. Take care of yourselves, my friends.
Learn More About Stem Cell Research and Treatment
This is a great initiative. The International Society for Stem Cell Research has recently started a a the ISSCR Task Force on Unproven Stem Cell Treatments to investigate individual clinics that claim to be providing stem cell treatments and cures. Called “A Closer Look at Stem Cell Treatments,” their website gives people the opportunity to submit the name of clinics for review. From what I understand, the Society is not going to look at patient outcome data, but really wants to make sure that patients’ rights are protected and that the clinics are being supervised by regulatory bodies in their countries or regions. Read more…
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