ForSEPs in France !

Fred1208 · Post by **Fred1208** » Mon May 03, 2010 6:05 am

Hello Everybody

I plan to go very shortly in Katowice, Poland, the 25th of May for a potential liberation procedure, if they found CCSVI.

I already posted some messages here, I'm French, I posted also some details in CCSVI tracking subject.

Due to a large censure on the French "official" forum ARSEP regarding CCSVI (130 pages cancelled without any explanations with links, videos, articles, translations of articles found here), and also the cancellation of some linked subjects such as inclined bed therapy, we decided to establish a new forum dedicated to the disease, with the aim trying to convince neurologists to start at least some studies on this subject.

For instance, we initiated some actions in order to place articles in newspapers, because in France there are unfortunatly a few people who heard about this.

Here is the address : www.ForSEPs.org

Have a very good day

Fred

Asher · Post by **Asher** » Mon May 03, 2010 6:22 am

How is this possible? Freedom of speech is inshrined in French law?

cah · Post by **cah** » Mon May 03, 2010 7:00 am

Fred, do you know http://csvi-ms.net/fr ? Much info can be found in french there.

At the moment, the swiss forum is linked there. We can collaborate in this (my french is very bad, but there are others who speak french fluently). Just send me an email to cah@csvi-ms.net or directly to contact@csvi-ms.net

Cheers

Cah

whyRwehere · Post by **whyRwehere** » Mon May 03, 2010 10:11 am

Hi Fred!
I saw that you were going to Poland, but you had left the arsep site (I went there the other day and it was down). Glad you are still checking in here, as I want to hear how it goes for you!!
Why

Fred1208 · Post by **Fred1208** » Tue May 04, 2010 12:38 pm

Hi Why,

Thank you for your support

Fred

laracr · Post by **laracr** » Wed May 05, 2010 9:17 am

Hi,
Arsep is always a forum on which we contribute to become known CCSVI. There was, indeed, a punctual problem bound to hostile persons, but the information continues for many patients.
Cordially
Laracr

NineEleven · Post by **NineEleven** » Wed May 05, 2010 1:06 pm

I've been reading for months on ARSEP.
There was a "punctual problem" ?
The terms "relapsing-remitting" or "progressive" (both primary and secondary) seem better suited to the silence and skepticism shown by french medical authorities, which ARSEP is a representative.

Last example of this, the link to the report published by ARSEP after AAN: http://www.arsep.org/library/media/othe ... n_2010.pdf

The author of this report is a doctor, neurologist, not a journalist. Journalists sometimes misrepresent facts, it does not surprise anyone. But a doctor can not. This one does, like many others all over the world. And like you here, writing "ponctual" about www.forseps.org dissidents.

"The information continues for many patients". Yes, but what information !

Fred1208 · Post by **Fred1208** » Thu May 06, 2010 2:23 am

Thank you to confirm NineEleven.

Laracr apparently is not aware, or more probably doesn't want to be aware about the facts.

It is not possible do deny that 130 pages regarding CCSVI have been cancelled without any explanation from ARSEP's Website.
It is not possible as you noticed NineEleven, to ignore false information given to patients regarding CCSVI.

It is sad.
Normally, any patient should consider these points, before its own interest (?) to keep alive one forum, which is not in my mind the best place due to the censure, to communicate about CCSVI..

laracr · Post by **laracr** » Thu May 06, 2010 5:00 am

I am aware of the problem and so aware of what allowed to arrive there specially cause to certains members... Besides, the problem is not any more there but in the idea than it is necessary to convince doctors of the urgency of the ccsvi's therapy and while leaving a forum of a Foundation which has a scientific reputation which we shall advance.
It is necessary to participate in the congresses it operates and to be imperative at these moments, rather than to avoid them.
Best consist in fighting where the scientists meet rather than in the space.
Have a good day.

Fred1208 · Post by **Fred1208** » Thu May 06, 2010 6:21 am

Please Laracr,

You wrote yourself a letter to Arsep "Fondation" to claim about this unacceptable censure regarding 130 pages.
Did you forget?

And you know as me that this whole censure cannot be explained by very few posts, consequence of bullshits written by your old friends about Dr Zamboni and his research team.
Did you forget?

You admitted yourself that this "Fondation" was not able to establish any moderators on its forum and also was unable to initiate any real research on CCSVI.
Did you forget?

They published some days ago on their website false informations on CCSVI, that you should be able to recognize, with a minimum of honesty.
And you recognized that, because you wrote on the Arsep's forum indicating that my comments were justified.
Did you change (again) your mind?

I don't care about them, and the patient don't care too, because it is clear they don't want to hear anything about CCSVI, as NineEleven tried to explain you without success.

Be sure also that the story won't stop there, because in France people will know at the end what happens with this "fondation".

whyRwehere · Post by **whyRwehere** » Thu May 06, 2010 6:32 am

Before you guys continue this, can I just say, "STOP!" Please don't bother arguing over the petty. Arsep was a lousy forum, because people seem only to insult each other there and the only moderator action was to kill the CCSVI pages- the first real hope for the SEP patient in years!!!
Obviously you both want to support CCSVI, so my suggestion is, print out lots of flyers on the subject and start leaving them at Pitie Salpetriere in the waiting areas and also leave them at different neuros offices (God knows we sit there forever with only tatty Madame Figaros from 2005 to read!).
Someone has already made a flyer, but I have no time to search the thread right now...now it needs translating to French.
Another user (although she hasn't said much on here) has told me she doesn't bother with the Arsep site because of all the attacking each other...if you want the information to get out stop scaring off the reading public!
We shall overcome.....

Fred1208 · Post by **Fred1208** » Thu May 06, 2010 6:59 am

Hi Why,

You're right.
It is the reason why we created Forseps, to really promote CCSVI.
If you come on this forum, you will notice constructive posts between members, with a real team of moderators to avoid old problems.

It was just difficult here to read in the first edition of Laracr, again some polemic sentences..Sorry, normally I don't reply.

I plan to go at La Pitié the 11th of May. I already tried to give them information, but without any success for the moment.
I met one of the manager of scientific comitee of Arsep.
I started to tell him what I knew about this subject. He just told me (many times in fact) he was not convinced, neither giving me any argument nor reference.

At the end, I gave him all printed articles from Zamboni, and other litterature.
He took that telling me :
"Interesting, I didn't have the opportunity to read these documents.."

So let's try, let's try again, I will translate this flyer if I find it.

have a good day

Fred

Rider · Post by **Rider** » Thu May 06, 2010 7:13 am

I agree with WhyRwehere !
Stop the fight, we now have another forum in France, and we have to take care to promote CCIVS and its treatment in France and elsewhere...
This is the good fight !

whyRwehere · Post by **whyRwehere** » Thu May 06, 2010 12:24 pm

Thanks for agreeing...we must be like Ghandi in this fight...the naysayers and neurologists at P-S (amongst others) will have their true colours seen in the end....ignorant, arrogant, unsympathetic, controlling, what else can we add? Definitely not Dr House

I would place the flyers where the patients are....then you have any army of people educating themselves...while waiting for the appointment to start...and then they will annoy the neuro by asking about the subject. One should probably add that to the flyer, that the neuros will try to dissuade them without any logical reasoning....when my husband went, the neurologist said that they had used this treatment in France 30 years ago (so she would have been 10, and they would have not known as much then about it, as they do today which is still not all there is to know). She said there was no proof ballooning the veins helped. I emailed her that evening, asking for her references/papers/studies, so that I could read them. She never got back to me...she had answered a previous email, so I know the address was correct and she does read her email. I wonder that she did not tell me where to find this proof of what she was saying.
Anyhow it is late, I am tired...good night!

laracr · Post by **laracr** » Thu May 06, 2010 11:55 pm

I completely agree to assert that the fight is not there but I wish to rehabilitate the arsep forum which forbids nobody to post on ccsvi, the proof is above made. Anybody censors today.
I wish you an excellent day.