ForSEPs in France !

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

Postby Fred1208 » Fri May 07, 2010 4:29 am

Hi Why,

During my next meeting with one of the members of scientific comitee from Arsep, I won't forget to ask him how it is possible to find on their home page (www.arsep.org) an article with many mistakes regarding CCSVI (AAN report 2010), the main important one concerning past problems being occurred in Stanford.

This Arsep's representative claims for instance there were "two deads" following the stent surgery (instead of one, due to one chronic reaction to blood thinners) with the hidden aim probably to frighten patients who could be interested in the intervention procedure.
I cannot describe here all the article, but to keep your terms, it is clearly a position against CCSVI, arrogant..

In my mind, it does explain why 130 pages regarding this subject recently disappeared on their forum without any explanation to the patients, neither yesterday nor today and I'm afraid, without any warranty against a new censure for tomorrow.

It was one of the reason for the creation of ForSEP.org, as indicated in my first post.

I hope we will contribute to the change needed in the community of French neurologists, including Arsep.

Have a good day :)

Fred
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Postby whyRwehere » Fri May 07, 2010 5:04 am

Hi Fred,
When and where are you meeting this representative of Arsep. Perhaps it is best to go with a number of people...to feel stronger, to be more demanding...
If it is not too far and at a possible time I would join you, although my French might hinder the process!
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Postby Fred1208 » Fri May 07, 2010 5:57 am

This meeting will be at la Pitié the 11th of May.

But it is first a medical appointement, because the director of scientific comitee from Arsep is also my physician, but we have typically very open discussions.
In this configuration, I think it would be difficult to '"invit" other people :)

However, I will take this opportunity to ask her the possibility to have a wider meeting, in order to discuss CCSVI with some other patients.
I cannot ensure you the result, but I will try :)

Fred
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Postby whyRwehere » Fri May 07, 2010 6:01 am

That is a good idea Fred, and don't forget to put fliers on all the chairs and tables!!!
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Postby Fred1208 » Fri May 07, 2010 6:24 am

Why, could you please tell me where I could find english version for these flyers?
Thank you.
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Postby whyRwehere » Fri May 07, 2010 6:35 am

Ugh, finally found it!! The info is in this thread:
http://www.thisisms.com/ftopicp-105738.html#105738
Gotta go, I am late!!
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Postby Fred1208 » Fri May 07, 2010 6:50 am

Thank you very much Why :)
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Postby Fred1208 » Sun Jun 20, 2010 5:20 am

Hello Everybody :)

We have got now on Forsep's home page a link to Thisisms, because this website contonues to be for us an important source of information !! :)

Have a very good day,

Fred
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Postby whyRwehere » Mon Jun 21, 2010 2:07 am

Hi Fred...you need to put in your signature a link to your homepage!
Have you been to Poland yet? Any news?
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Postby Fred1208 » Tue Jun 22, 2010 4:08 am

Hello Why :)

Yes, I have been in Poland the 25th of May.
I had balooning both sides in jugulars.

I feel improvement in my ability to walk a longer time, but at this moment there is a small improvement, and it is difficult to appreciate if it is really there..

Have a good day,

Fred
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