thornyrose76 wrote:I actually yesterday received a letter from the MS clinic here in Winnipeg, there having a special meeting next week, the discussion about ccsvi...there basically saying what other clinics are saying, continue on with therapies that don't really work.
Yes, the MS Clinic voice mail spends about two minutes saying "Please leave a message about anything that DOES NOT involve ccsvi"
But a pharmacist told me there was going to be some Big Name guy (name not provided) and wouldn't it be exciting to hear what he will say? I suppose it would be too much to hope that will be our friend Dr. Omar Khan from Wayne State speaking on "Emerging Therapies" as Shannon, reported he did in Detroit?
That would almost make it worth going to just to see if his schtick had changed.
But the letter itself seemed to promise it was just one of those public meetings designed to control the message. Early days, small sample, can't extrapolate, go back about your business. No we won't run tests on just 5 volunteers as a pilot project, that couldn't be done for (mumbledy-mumbledy) reasons.
And to be honest, it IS early days. And the MS Clinic has only helpful, caring, and as far as I can tell upfront with me about, for example, the only limited help the various injections might provide. But they're operating out of a bureaucracy, and I would rather medicos generally be more cautious than not, so I’m not without sympathy for their position what with all the hundreds of patients in Manitoba calling and asking to be put on non-existent trials...
But for pete's sake, for the cost of putting on this meeting they could run MRVs on a few volunteers, and see if that warranted testing a few dozen more ... and so begin adding to the sum of knowledge rather than working to slow the process down...