MS Society of Canada'a "advice" to Labs???

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby annad » Mon Apr 12, 2010 12:24 pm

PCakes,
"They" are all spewing the same weak arguments to us. It's getting old!
We're bigger than they are and we will win!
a
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Postby Chrystal » Mon Apr 12, 2010 1:47 pm

Beautifully said, Annad and PCakes. Thank you for replying on our behalf.
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Postby NZer1 » Mon Apr 12, 2010 2:13 pm

After reading the blurbs that the MS Societies around the world (New Zealand included) I would have thought they would have realised that most PWMS do not believe Neurologists. The process of getting a diagnosis has shown most MSers that Neuros are not the specialists on MS, there are too many areas of MS symptoms that can not be explained by neurology. Let alone the billions of dollars neurology has directed into research that is supporting the research industry/ Pharma, not patient wellness and cures. The Pill industry!!!!!!!!!!!!!!!!!
If the MS Societies want to be heard they should talk to the emerging experts, VASCULAR experts, and then consider the best advise to PWMS. The credibility of MS Societies has pretty much gone, something they need to be aware of now and for their and our future!!!!!
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Postby eric593 » Mon Apr 12, 2010 2:19 pm

KPawlak,

Your blog states that you won't offer even imaging for CCSVI because: "If the patient is not in a trial then what will be done with the information?...In short, to offer these scans at this time with the current data would violate the core principles on which our clinic was founded and on which it operates."

I see that you offer people many different types of scans including full body preventative scans.

What assurances could you possibly have that the results of these imaging scans will only be used in a manner consistent with established medical research? How could you possibly know whether risky or questionable treatment methods will be sought, or whether wild alternative therapies won't be implemented based upon the results of your scans? Do you have people sign waivers agreeing that they will only follow accepted medical protocols using the results of your scans? If someone has a brain MRI that reveals a brain tumour, do you somehow prevent them from going down to Brazil to see John of God to have needles stuck up their nose into their brain to attempt a healing?

I find your reasoning on this point... illogical. Certainly you do not strictly offer your services based upon the acceptability of what your clients will do with the results. I am quite certain you have no idea what ANY of your patients do with the results of screening undertaken by your company. What possible core principle might you have that only permits testing based upon what people do with the results? That explanation is... baffling in the least, obfuscating at best.

To scan for CCSVI is to produce information. I thought that's what you were in the business of doing, providing information to patients. You are drawing a distinction with CCSVI and denying diagnostics to MSer's that has really no sound, logical basis.
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Postby Johnson » Mon Apr 12, 2010 2:44 pm

All of your responses are beautiful.

I want my brain back.
My name is not really Johnson. MSed up since 1993
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