drsclafani wrote:you know, the more i learn, the more I really don't know what we are treating. If MS is symptom complex related to demyelinization that leads to poor electrical conduction that causes all the symptoms, how can those symptoms so abruptly and dramatically resolve?Certainly there is no remyelinization in an hour. It has to be circulatory. and that IS CCSVI not MS
or is it all the same
and besides who cares right now what we are treating. its the relief that counts, right?
Not to disagree, but I think it is how persuasive the results are in terms of gaining acceptance of the fact of CCSVI and the benefits of treatment that is really critical.
It has been suggested that we focus on something simple such as fatigue which the National MS Society says effects 84% of people with MS and we know from anecdotal reports is relieved by venoplasty.
Looking into the various instruments for measuring fatigue suggests that this would be a good thing to measure pre- and post- treatment because;
** It is an accepted part of MS disability
** Current theories of what causes it are extremely weak
** There is a logic to why improving cerebrospinal blood flow would address this problem.
As such, if we can show that Liberation lessens fatigue, we go a long way toward validating CCSVI and its treatment and help sort out what is electrical and what is plumbing in a very convincing way.
But . . .
As you dig a little deeper, there are many aspects of fatigue. It is a symptom of depression and as such is a mental state. It is also physical, a measure of the ability to perform various activities without having to rest.
This suggests to me that we need something broader than just the standard Fatigue Severity Scale and the Modified Fatigue Impact Scale.
I believe that Dr. Zamboni used the MS Quality of Life Scale which includes both, but also looks at a whole range of other self-assessed aspects of the disability which is currently known as MS.
I have about 5 days free to put the whole MSQLI series of questionnaires on line for our use if that makes sense. (Of course, I'd rather not if someone has already done this.)
It takes about 45 minutes to complete the NMSS version of the MSQLI.
Another benefit of using this is that it has been specifically designed for the purpose of having a quantitative set of uniform measures for MS clinical trials.
The manual for MSQLI is available here.
I think the suggestions that we also specifically look at what people with MS believe are their most pressing symptoms, pre- and post- Liberation, is an excellent idea because it can provide a new CCSVI QLI test and perhaps capture things that will be missed by the MSQLI questionnaire.
Since this is already too long, one more thing that may be useful is to administer the questionnaire twice before Liberation to establish the internal consistency of the questionnaire and then do the same at several post-Liberation intervals such as the beginning and end of the first week post-Liberation, beginning and end of the 6th week, post-Liberation.
We will need healthy controls as well as people with MS who do not receive treatment to also participate at each of the test stages, a lot to ask!