Reflection

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

Reflection

Postby smokey » Wed Jun 16, 2010 2:44 pm

I felt distress/dismay when I saw the recent research appearing to strongly dispute the existence of CCSVI. I didn't realise quite how much I have emotionally invested in, as well as attempted to understand this new theory. For those of us who have undergone the venogram/angioplasty it's going to be confronting to read vigorous argument against the theory. It's clearly going to be an area for robust debate in scientific journals of one persuasion or the other - as well as the media, for quite some time. This is something we should expect and prepare for. The challenging of strongly held beliefs about MS being an auto immune disorder will lead many to hold even more tightly to their beliefs and current research agendas, and I can understand this. Years of career development, funding etc etc is at stake. Maybe we'll get to 'it's not either/or but both.' Perhaps there will be room for all..... in time.
Last edited by smokey on Wed Jun 16, 2010 9:38 pm, edited 1 time in total.
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Postby Shueywho » Wed Jun 16, 2010 2:47 pm

I agree with you Smokey. I also like to think that the more opposition and uproar I see, means there is credibility to this. They wouldn't be so agitated if progress wasn't threatening their position. It is a huge shift in thinking and it is hard to temper myself at times.
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Postby garyak » Wed Jun 16, 2010 2:52 pm

This is a classic paradigm shift going on here.
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Postby babiezuique » Wed Jun 16, 2010 3:09 pm

I'm a philosophy teacher ( in french:) and there is a concep that i like to work with my students... our capacity to change our way to think''. Some people just cant change the way thay see things. I agree with you... even if the majority will admit by the forces of the proof.... some are going to resist until the end....

Here in Quebec, the Man who represents all the neuros... Said that this vascular thing was like the venim bee...hot bath thing.....! THis man is my neuro....;( Well i go to see him only to have mri!

You want to know...Four years ago wen i stoped Rebif....I did not told him. We were in 2006 than i just did an mri i had 12 lesions at the time. I just told him this year that i stoped rebif... He said we will do anather mri an compare..... with and without rebif!

I just received the results... 4 years without REbif....12 lesions ;) Nothing moved since i stoped. The only thing i did was Swank diet! I told it to him an than he looked at me like if i was a child thinking that she is going to save her mom dying of cancer with a popcicle!

Change the way we think can be challenging for some, exiting for other... impossible for the most reluctant.
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Postby smokey » Wed Jun 16, 2010 9:44 pm

Thanks Shueywho, Garyak and Babiezuique, I was shocked at my own reaction to the new journal article, and needed to remind myself this is the nature of scientific debate.

It's hard to keep a sense of equilibrium when you are clinging on to hope and that wish that CCSVI will 'come through', and then the theory is so strongly challenged.

I had the angioplasty 3 weeks ago, and I'm doing just fine. Consistent with many other reports, my fatigue has disappeared. Placebo? I would like to think not.

Hang in there us!
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