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February 5, 2010 at 1:42 am

This discussion is rather painful and probably pointless based on the fact that many people are attacking rather than debating, but I have one last entry to make on the subject. I am one of the few people, if not the only one, who works each day in the medical field and is currently participating on this forum. As such I sometimes feel the importance to try to make sure that both sides of a subject are presented. As I stated repeatedly, I did not intend to rain on anyone’s parade and I certainly would not have taken the cautious way to state what I did if I thought people here were to “ignorant” to be able to gather and assemilate the facts. I work with children and teens and scared parents and often will restate important pluses and minuses of treatment just to make sure that they are understood and to allow people the dignity of not having to say that complex options are not clear. This is never meant to insult people–it is meant to educate. I apologize to anyone taking offense at the fact that I wanted people to understand that there are very real postives and real negatives with stem cell transplantation because it is important to understand. Also that this process is very young and not a lot of people have undergone it nor has much time passed for most yet. Being a Phase I trial means that it is not “proven” in medicine; it is experimental and will be treated so at least until the trial is completed and results are reported.

For people that work in the medical field–especially oncology care and research as I do, cure is a well defined term and it is extremely important for it to be so. As was pointed out, 5 years may seem arbitary, but because it is used the same in each study, one can compare treatments and outcomes. One has to have defined words and defined goals to show if something works. One of the biggest problems with CIDP research is that there are not great definitions of “improvement” that can be applied to all individuals in a study–because the manifestations of the disease are often different in different people and because some damage, once done is irreversible. It is much easier to understand a person being cured of a bad infection in the bloodstream, for example, in which one looks for when the blood cultures stop becoming positive with the infectious organism. With a complex illness like those in neurology, it is harder to define improvement because some people will walk much better, some people hurt less, some people have more endurance–just think of all the ways that people are affected with CIDP. It is important to have a stable definition of cure and what one is looking at in a study in order to be able to say if the treatment working and if it is better than what was done before. Sure, people on the forum do not need to use every word as is used in medicine, but if people do not understand how it is used in medicine, it is hard to really understand the risks and benefits of options. Having no evidence of disease return for five years may have been “arbitrary”, but it the standard and it is long enough to estimate “forever” without meaning that people have no conclusions for decades. Having disease go away for a few months is great, but, as stated before, what we want is that the disease never come back in new treatments for patients. We want cure. Five years is the best standard approximating that.

Linda, you ask if I am a medical editor. I sometimes have that role in life, but most of the time I spend my time taking care of patients and helping them to understand and better fight their illnesses (and in doing clinical research). I do not do it from an attitude that I know more or that they are “ignorant”, I and others that work with me do it with the attitude that information is power. I fully acknowledge because I work with people undergoing stem cell transplant, I am sensitive to making sure people know what this is and that it is a hard procedure. Because it is, it is even more important to be educated about it. I wish all of you the best on this forum and that you find knowledge. Even more, that you find support given with kindness.

I hope that people return to trying to support and help each other. It is so hard to go through illness without this.

WithHope for a cure of these diseases and for peace