drsclafani wrote:In the meantime, I thought it would very helpful to all of us to review the concepts of research and clnical practice and the value and the procedures by which IRBs work.
Dr. Simka has been informed about Noreen’s experience in India and has responded as follows:
"We have already operated on 212 patients and in 10 of them (5%) no venous blockage was found intra-operatively, despite obvious sonographic and MR evidence for CCSVI. We cannot interpret these findings unequivocally. One explanation is that in some patients we are over-interpreting sonographic and MR findings. But also - standard venography is not 100% sensitive, since (an) intravenously situated catheter changes slightly (the) behavior of the vein. Interestingly, one of our "negative" patients was readmitted and during (a) second intervention (2 months after the first one) obvious pathology was found and after balloon angioplasty the patient experienced (a) big clinical improvement. So, perhaps these venous lesions are more "active" than can be suspected and are not always seen. The other argument for this option is that in several our patients who were found pathology only on one side, (a) follow-up after one month following procedure has revealed a stenosis on the other side that has been initially found normal. Please find the above-stated as conjectures rather and not as clinical evidence. Nevertheless, the things are very complicated."
drsclafani wrote:Almost all of these narrowings occur near the confluens of the jugular vein with the subcclavian where valves are seen normally in about 85 per cent of patients. Problem is these valves are highly dysfunctionally developed in patients with MS. I think the IVUS really shows this really well.The venogram shows narrowing but the IVUS shows that the narrowing is valvular.
These narrowings are not inflammatory strictures and they are not "buildup of tissue on the wall of the vein (sort of like plaqeu).
I have fantasized about creating research measurement tools to learn about the subjective experiences after liberation. Imagine capturing the data and partnering on such a project.
I have been thinking about how to harness the energy and experience of patients on this site. I have fantasized about creating research measurement tools to learn about the subjective experiences after liberation. Imagine capturing the data and partnering on such a project.
what do you think?
I really like this idea. The neurologists assess MS patients using the EDSS and FSS scores, but they are complicated and over-emphasize the ability to walk.
To gather subjective information from patients, a much simpler list of symptoms in a questionnaire with a numeric rating would be more effective I think. Something easy to fill out, for example using a scale from 1 to 5.
Once we have a tool like that, we could start gathering control data by having members of this forum rate themselves every month. We could plot the collective control data against the patients ratings who receive the liberation treatment. By keeping the symptoms separate, we would be able to see which are improved (or degraded) by the treatment. And, we could see how they change over time for both groups.
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