This Is MS Multiple Sclerosis Community: Knowledge & Support

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http://www.thisisms.com/ftopict-9766-billmeik.html

fwiw: this is a thread I started about a month ago called 'how ccsvi could be wrong'. It's kind of surprising to me how much I have changed my opinions. I am more into exploring patient run science now. Could patients run their own studies? How can we replicate putnam?

Lyon said:


It seems to me that urging caution is actually a kindness. I am a seeker or truth. I don't think the majority here are lemmings blindly thrusting themselves off a cliff into the ocean. Lemmings don't discuss.

Granted I haven't read every post on this forum, but what is not kind is using words that make people feel demeaned and defensive. Anyone (not just you Lyon) who feels they are being "shredded" can try this experiment: consider how to word your objections, consider whether they could be perceived as personal attacks. I, for one, find debate healthy, but mean-spirited vitriol is not healthy. Sometimes it's not meant that way but no one can "hear" tone in a written message. We have to be careful.

We are all big girls and boys, we can disagree, but we should all be respectful and when we say something harsh in the heat of the moment, we should be big enough to think better of it and apologize.

Please. Thank you. Now bring on the opposing viewpoints. I want to know, there may be a cliff ahead!

Allright, so I've read this entire thread (phew) and the only sound conclusion I can draw is that we have a bunch of numbers without knowing what any of them really represent. We're all a ways down the line on the game of 'telephone' and we're trying to make sense of what we're hearing.



I would go further and ask why he would release numbers at all right now. Maybe he didn't expect them to be reported so vaguely, but in my mind, it seems a tad reckless to give any numbers to the media before the study is published. We all want answers, and we want them ASAP, but clear answers are the only ones that will serve us well.

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Well said, JoyIsMyStrength. And right now many people are trying to read a lot of information out of a little bit of data. We know that Zivadinov told one reporter that CDMS patients had an 80% rate of "CCSVI" (however that was defined). We don't know how or on what basis these CDMS people or the others (such as CISers) were categorized. We're not sure what it means that over 20% of the control group (normal people?) also had "CCSVI". Until the methodology and results are published and data made available for re-analysis in April, we are not likely to know more than this. So, in the short term, those of us who are facing imminent deterioration have to make decisions with incomplete information.

In my own situation, there continues to be enough a case for CCSVI having a reasonable possibility of being some sort of cause of at least some of my MS symptoms and, perhaps, disease progression that I am still intending to travel to Poland for assessment and, if appropriate, treatment. The potential improvement is, for me, worth the the time and cost and inconvenience and risk.

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

i guess dr ziv would argue that he hasnt released any numbers yet. Just given some anecdotal reports, nothing formal. Still my hope wavered bad. What was that! I decided I was going to spend the rest of my life pushing a noteworthy cure just to find that it's only a piece of a huge complexpuzzle. This 80% is better, although I wish it was dms..

And when I have an attack, like I did in November for the first time since I was diagnosed 8 years ago, I get obsessed with MS. I spend hours reading about it each day. I think about it when I wake up at night I think about it while I'm typing this message. How my left hand isn't numb anymore but the right one is just a little tight, like I'm wearing a glove covered in mud and the mud dried...


sorry went lateral..

Is there a way to get a clarification from the reporter that it is cdms we're talking about, and not those with more symptoms?

Billmeik,
can you explain what you mean by "cdms" and "those with more symptoms"

Billmeik, my guess is that we wouldn't be able to get more clarification since she wrote up what she was told. And, by the way, as you probably noticed, she never used the phrase CDMS: that is just something we assumed Zivadinov meant when he compared the rates for CIS subjects to "those with more advanced symptoms of the disease".
...Ted

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

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My wife has MS that has her unable to move any part of her body from the neck down. She was just recovering from a serious UTI when the CCSVI story broke, so she was in no mood to hear from more doctors. I held off telling her anything.

Now I am SO glad I did. The last thing she needs is to be riding on this emotional roller coaster. I will wait and wait and wait if I have to, until the CCSVI numbers are solid, before I tell her anything.

My respect, admiration (and condolences!) for those of you on this forum who actually have this horrible disease and have no choice but to take this bumpy ride.

Salute! Here is hoping at least it ends well!

Starting a "List of Questions for Zivadinov" thread is a good suggestion, Lyon, and not because I necessarily expect any real answers from him before April (he may already be in hot water with his colleagues for divulging too much to the Canadian Press reporter), but because it could help us clarify for TiMS people (through discussion and debate) what the REAL questions about the research project should be. Then, when the research results come out in April, people can compare those questions to the published results.
...Ted

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

ya I dropped him an email. It's kind of asking for the results before they're published don't see why he'd answer.

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