Posted: Sun Apr 11, 2010 6:20 pm
...and I also wanted to thank Sandra (HC) for all of her postings and advocacy for CCSVI treatment. Much appreciated, from a fellow Canuck!
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I too am on the "verge of being permanently in a wheelchair", I could not describe my health more accurately than that. But I am a patient who wants studies because they are more important to ME than anecdotal evidence that is extremely selective and biased. It is not just societies and doctors' insurance who want studies, so please don't make sweeping generalizations that are just not true.whyRwehere wrote:Meanwhile, I think it is up to the patients, if they want to wait for a very long time for studies, which seem more important for the societies and the doctors' insurance, than for the patient who is on the verge of being permanently in a wheelchair or much worse. Personally, my family has decided not to wait and we are very comfortable making up our own minds and not being dictated to by the neurologists or the societies. Amen.
My questions were hypothetical since we don't have any data or research on angio or stenting of jugulars to look to for answers.whyRwehere wrote:I welcome you to wait if you want, because you have to decide for yourself. I notice you did not ask Dr Scalfani about stents after balloning of the veins, but that is okay, because i have asked for you already.
You and I are in agreement, Chrystal, I don't feel it is the MS Society's role to make any recommendations. They are comprised of neurologists and others on their board (or they seek out neurologists' opinions on certain issues). They aren't in any position to be putting forth recommendations as an organization, they don't "represent" us because we didn't vote them in as our representative body. They are an information provider and a research funder. That's why I think they are in a role to let us know whether there is any research into any particular treatment, but limit their remarks to information disclosure and not take a position on the merits of any treatment. Just give us the information, and fund promising treatments, especially when MSer's are demanding it.Chrystal wrote: As I said after the brain fog cleared, the MSS has no business recommending or advising for or against any treatment/procedure not now and not even after the years/decades?? of research they need/want to prove/disprove CCSVI. And yet they have been advising (which is recommending in a sense) against patients being tested and receiving treatment in Canada. WHEN ARE THEY GOING TO STOP THIS, RETRACT THEIR ADVICE…and simply state that it is the patient’s decision whether or not they wish to seek testing and treatment in Canada?
Well, luckily (again) for you, the people who have decided they can not wait any longer are providing valuable data for the future.eric593 wrote:My questions were hypothetical since we don't have any data or research on angio or stenting of jugulars to look to for answers.whyRwehere wrote:I welcome you to wait if you want, because you have to decide for yourself. I notice you did not ask Dr Scalfani about stents after balloning of the veins, but that is okay, because i have asked for you already.
Unfortunately, any data that may be gleaned through individual treatments is of limited value to anyone else than the patient themself at this early stage and outside of the auspices of proper scientific method. Anecdotal evidence never replaces scientific method although it can certainly contribute to the knowledge base. But when you haven't had fundamental questions on efficacy answered, the data being collected is of extremely limited use. No context to place it in or extrapolate from beyond that particular patient.whyRwehere wrote:Well, luckily (again) for you, the people who have decided they can not wait any longer are providing valuable data for the future.