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One of the fundamental cracks in the accepted foundation of knowledge about "MS"/CCSVI has to be inherent in acceptance and continued use of the terms clinically definite, relapsing-remitting, progressive, secondary and primary, as if the use of these terms confers additional legitimacy to any statement made about the disease, or syndrome, or whatever it is being called lately. At least one of these assessments/diagnoses is made primarily based on EDSS. The EDSS, or any measure of disease severity, worsens with age.The usage of these terms, to categorize people for purposes of either drug development, or research, is a generalization that may prevent determination of real causes of disease. These terms smack of actuarial purposes. They are often used, by gatekeepers of medical treatment to exclude those who are most expensive to spend precious shared resources on: research money, insurance settlements, etc. That may or may not be a legitimate goal.The danger is that the use of these ad-hoc characterizations to limit the cost of research may have the effect of preventing the researcher from finding fundamental disease mechanisms. What if these may only be elucidated by looking at older, or more disabled groups, or by examining, as Dr. Zamboni did, the entire panoply of "phenotypes." He might not have made the progress he has if he had limited the scope of his studies that way.You, the person with "CIS", or "PPMS" have something fundamental in common with every "MS" sufferer. I think only by ignoring the insurance coverage and the "course" of the disease will we ever find out anything universally valid about that fundamental something. The bell tolls for every form of 'MS'. One of the fundamental cracks in the accepted foundation of knowledge about "MS"/CCSVI has to be inherent in acceptance and continued use of the terms clinically definite, relapsing-remitting, progressive, secondary and primary, as if the use of these terms confers additional legitimacy to any statement made about the disease, or syndrome, or whatever it is being called lately. At least one of these assessments/diagnoses is made primarily based on EDSS. The EDSS, or any measure of disease severity, worsens with age.The usage of these terms, to categorize people for purposes of either drug development, or research, is a generalization that may prevent determination of real causes of disease. These terms smack of actuarial purposes. They are often used, by gatekeepers of medical treatment to exclude those who are most expensive to spend precious shared resources on: research money, insurance settlements, etc. That may or may not be a legitimate goal.The danger is that the use of these ad-hoc characterizations to limit the cost of research may have the effect of preventing the researcher from finding fundamental disease mechanisms. What if these may only be elucidated by looking at older, or more disabled groups, or by examining, as Dr. Zamboni did, the entire panoply of "phenotypes." He might not have made the progress he has if he had limited the scope of his studies that way.You, the person with "CIS", or "PPMS" have something fundamental in common with every "MS" sufferer. I think only by ignoring the insurance coverage and the "course" of the disease will we ever find out anything universally valid about that fundamental something. The bell tolls for every form of 'MS'.
Because MS is different for each individual with different rates of progression and relapse rate, researchers have had great difficulty in MS clinical trials controlling the variables and not having trials last for 10 years to account for people who don't have frequent or annual attacks but that would still differ pre- and post-treatment. Top researchers have held meetings for decades in an effort to tighten the trial criteria in order to produce reproducible results. There has been extensive discussion for many, many years about ways to produce accurate trial results in MS research. Aging and disability levels have their own sets of variables that they would need to factor in if they didn't set limits on age and disability as well. It's all about controlling the variables in clinical trials.
No drugs so far would ever have shown a stastically significant benefit if PPMS and SPMS people were included since we know now the meds don't work in the non-inflammatory kinds of MS. The categories have some significance and value, they aren't arbitrary labels but were intended to help with consistent trial participant selection. To overcome the dilution of the non-inflammatory group that we know the meds do NOT help, it would have required far greater numbers of trial participants to show the difference in the people it does help to offset this dilution. Of course, no one would know what type of MS the drug actually worked on if all MS types were included together, so people would be taking unnecessary risks with their health and unnecessary costs for meds that didn't even help them. I can't see how that helps anyone. Either that or the meds would never have been available to anyone because they would not have shown a stastical benefit in the trials. Many MSer's who HAVE been helped by them would have been deprived under your plan.
Isn't it better that they try the meds on SPMS and PPMS separately to determine if there's a benefit there too, and continue to try to find effective treatments for those types on their own, now that we know that distinct differences exist between those groups and RRMS??
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