Canadian Neurovascular Health Society conf. tweeting now

[cheerleader]

First day is completed
Dr. Juurlink, Dr. Code, Dr. Haacke, Dr. Arata---
lots of info on twitter

https://twitter.com/CCSVI_Society

cheer
@JoanBeal on twitter

[1eye]

Dear cheerleader:

(I met you in Sherbrooke --- hi!) Thank you for all you have done and are doing in this fight of ours. You don't have to do all this, and yet you do. It is wonderful. One can easily see that the effort, the research, the interest in CCSVI is far from dead, moribund, over, as some propaganda-types and drug company lackeys would like us to believe. The research and other crap that they keep trying to publicize, and the work they do to thwart other peoples' efforts to help us, is the most cynical and desperate attempt to somehow stem the tide of truth that you represent. For what? Money.

So I, and the other pw"MS" you help, cannot thank you enough. It is happening. Not just treating CCSVI is happening. The learning, the questioning, the Eurekas are all coming thick and fast. I feel we are on some kind of verge.

So thank you again. I will not tweet, but I expect the filtered version will get to me somehow.

[Cece]

Dr. Zivadinov: drug companies interested in whether their drugs will work better if drainage of brain fluids improved

That's interesting. Big Pharma has the money to make this happen if they want to research this.

Dr. Haacke: Traboulsee study: researchers used % stenosis, which is not a valid measure. Researchers need to recalculate!

I am frustrated by the Traboulsee study. Poorly designed studies muddy the water when we need clarity.

Dr. Haacke: diamox can be used to increase cerebral blood flow

I would very much like to see Diamox tried in CCSVI patients.

Dr. Juurlink: micro vessel pressures may be relieved by lifestyle changes: exercise, diet, supplements, meditation

Exercise, diet, supplements, meditation.

Very helpful to read the tweets! Thank you.

[cheerleader]

Hi 1eye---I sure do remember you. And am always glad to read about your recumbant bike adventures and thoughts about MS...even if I don't reply online or PM. And, although I've never met Cece, I have her lovely picture in my head. You guys are the real heros.

Glad the tweets were informative! Seems like it was a well attended, interesting conference. The ISNVD keeps getting larger and more involved in the patient population, and that's a good thing. It feels like a start over for the NMMS. Real, grass roots growth with real answers. Not funded by industry. I hope to get to Italy next year for their conference. But mostly, I hope to get this research funded, mainstream, and implemented-so it can help real people living with neurovascular disease--- while Jeff and I are still in the earthsuits.
cheer/Joan

[Cece]

But mostly, I hope to get this research funded, mainstream, and implemented-so it can help real people living with neurovascular disease--- while Jeff and I are still in the earthsuits.

The researchers seem to be making progress towards that goal (which I share too, fervently).
I'm looking forward to Dr. Zamboni's Brave Dreams results and to the NASA funded research, which bolsters the legitimacy of his work.

[happy_canuck]

Hi cheer and Cece!

It's been ages since I've been on TIMS, but I am delighted to see some of my tweets made it online. I agree I need to do a summary of all my tweets and get them out there. Right now, I am still chasing loose ends from the conference and sending out thank you notes

I think this conference struck a really good balance between current research and practitioner recommendations. Attendees came away with concrete ideas to improve gut, endothelial, and brain health. Because some speakers got together before the conference began, they were constantly referring to each other's research and presentations, which made it both fascinating and integrated. I heard so many comments afterwards that the sessions flowed naturally one to the other. I made this recommendation to our Board in our debriefing that we need to facilitate these meetings ahead of time so this continues year-to-year. We also had many more Health researchers and practitioners in the audience then at our previous three conferences, Including some of our former speakers. I would imagine we had at least 20 from the science/research/health field (neuroscientists, radiologists, physicians). Traboulsee's co-researcher, Katherine Knox also attended. Next year we are going to hit up Dr. Traboulsee (again) to attend. We will be in Vancouver, so there should be no excuse

Cheers,

Sandra
Canadian Neurovascular Health Society (formerly National CCSVI Society)

[kengriff]

Researchers always try to invent new things for the welfare of human being. Canadian Health Society opens up a new window in our life, this is my thinking.