IVCC/CCSVI, vidéos, radio et échos de murs de ce vendredi.

Publié le par Handi@dy

ccsvi-droit-malade.jpg 

(Droits du patient au traitement de son choix, y compris expérimental, avec un médecin éclairé.)


Barre google de traduction très utile pour la fin!

*Radio: le témoignage d'Anna. L'animateur a un frère attteint de SEP.

*Radio: témoignage d'un SEPien et proposition de 5 centres d'étude!

AVANT:
APRES, le lendemain: tête plus claire, retour de la marche, disparition de la fatigue. Plus de diplopie, vision claire.
Une animation créée par Zamboni pour expliquer le flux sanguin et ses conséquences quand il est perturbé.
Un peu d'humour pour finir! Les CCSVISTES de facebook ont demandé à ce que leurs neurologues leur fassent cette danse lol (vidéo contre le SIDA)
*TV:
 
Norman Fetterley with an MS patient who has her life back
*Echos de murs:

*Annie Turcotte  Bonjour,
quel serait le meilleur lien pour un journaliste qui veut comprendre la découverte du Dr Zamboni depuis ces débuts jusqu'a toute l'histoire d'aujourd'hui?
Pour faire une histoire courte il veut m'aider et parler de mon histoire, mais il veut que je lui envoi cela et même si j'Ai regardé pleins de lien je me dem...ande LEQUEL lui envoyer?
Merci beaucoup à l'avance!
Merci pour tous les espoirs, je me rendrai en Bulgarie moi aussi le 1er novembre d'ici là je travaille fort avec tout mon entourage afin d'ammasser les sous nécéssaires et ce journaliste peut m'aider donc avec votre aide je pourai lui donner les bonnes informations Merci encore à l'avance
Annie Turcotte

Francine Deshaies Voici un lien Annie qui regroupe beaucoup d'information mais c,est en anglais. Il est sur notre site CCSVI-IVCC dans la portion discussions.Tiens moi au courant.

http://www.facebook.com/note.php?note_id=10150213664460608&id=1231836744

*Tina Marie Veach  There are two types of people who deal with MS. Those who live with it and those who live off of it. I have looked at how much money the NMSS spends on certain things and was shocked considering how much each study for CCSVI got $342,857.14 (we all know the total was $2.4 million . The Society spent $4,208,473 on posta......ge, tracking, and express alone last year. The total of the salaries of the NMSS are alone $14,593,310. CCSVI has shown more promise than any medication. Lets hope that the NMSS will spend less money on themselves and more on those who live with the disease. This is what I just posted to the NMSS wall.
Afficher davantage
Annual Reports and Financial Statements : National MS Society
www.nationalmssociety.org
Download annual reports and financial information.

*Tessa Rushton  I agree with Shirley (yet again!) THIS MUST BE DONE RIGHT NOW!!!!!

Jenny Talliya
I asked my neuro about going into trials in Sask,, I was told.. if it doesnt come to Alta, then too bad for me. nice eh.
also.. I believe I read somewhere that Zamboni mentioned that not all strictures are just in the neck, they can be dete...cted there, but that they can also be inter cranial in the back of the head or be in the veins that run down into the spinal column after C3, C4 level.. and having had lesions at those points causing issues myself I can see it. Basically though, I think what he's getting at,is that anywhere there are lesions along the neuro pathways blocking the neuro transmissions, that means there is blood pooling and iron is being deposited to damage the mylin.
and who says that ms is the cause of ccsvi.. what if.. its the other way around?

Tessa Rushton  yoga, lunch with my cohort, nap, Okotoks... I see an early night in my future :)

*Jenna Machala  By BaBy Bart Bakker, Citizen Specialrt August 10,2010
Ontario should follow Saskatchewan's lead on MS

Recently, Saskatchewan Premier Brad Wall said his government is "willing to fund clinical trials of a controversial treatment for multiple sclerosis." He called the "liberation" procedure -- a treatment pioneered by I...talian doctor Paolo Zamboni -- an "avenue of hope" for patients stricken with the debilitating disease.
This is the best piece of news I have received since getting the MS diagnosis three years ago. It's also a refreshing take on a debate that has been pulling apart the world of people living with MS: Is the liberation procedure a true medical breakthrough, or nothing more than a sophisticated placebo effect, temporarily relieving the symptoms of people who want so badly to believe that they are better?


Read more:
Afficher davantage
Ontario should follow Saskatchewan's lead on MS

*Sonia Malenfant  Le 26 soût prochain, la ministre fédérale de la Santé va rencontrer des spécialistes de l'IVCC (je ne sais pas lesquels). Les provinces attendent de voir quelle orientation le ministère va ensuite donner au dossier de l'IVCC. À suivre...

*CCSVI VANCOUVER  By: Bart Bakker, Citizen Specialrt August 10,2010
Ontario should follow Saskatchewan's lead on MS

Recently, Saskatchewan Premier Brad Wall said his government is "willing to fund clinical trials of a controversial treatment for multiple sclerosis." He called the "liberation" procedure -- a treatment pioneered by Italian... doctor Pa...olo Zamboni -- an "avenue of hope" for patients stricken with the debilitating disease.
This is the best piece of news I have received since getting the MS diagnosis three years ago. It's also a refreshing take on a debate that has been pulling apart the world of people living with MS: Is the liberation procedure a true medical breakthrough, or nothing more than a sophisticated placebo effect, temporarily relieving the symptoms of people who want so badly to believe that they are better?

CCSVI VANCOUVER  By:Braden Corby
I went to a luncheon BBQ put on by the Victoria MS Society and Janet Palm, the head of MS Canada BC & Yukon Division Chapter was there.
She had just come from the long awaited Aug 11 meeting with representatives from the BC Health Ministry, College of Physicians, Reformed MS Society, and more.
A very nic...e lady, she chatted with us for quite a while – here are some comments I remember:
- Janet approached the ministry asking them to consider making MS and CCSVI separate issues. The ministry was receptive to this idea and will explore further.- Janet was impressed by the compassion demonstrated by the BC Health ministry representative. The representative talked about reading many moving letters that brought tears to her eyes.(The point being people that maybe the BC ministry does have a bit of a heart and YES they are listening)
- Janet reported that a top vascular surgeon at the meeting said that this is still a new and very tricky procedure – it’s not as simple as it’s often portrayed – and he would want 2~3 months practice before he felt totally comfortable doing this.
(My personal note – I’ve been seeing this coming up a lot lately – not all doctors are created equal and both the diagnosis and treatment take skill and specialized CCSVI training and equipment. Think about that the next time you hear of the latest clinic wanting to offer treatment
– do your due diligence and make sure the doctor knows what s/he is doing.
Janet said this was also discussed at the meeting).
- Janet asked what specific information & criteria needed to be met to allow the BC Health ministry to move ahead with treatment trials and treatment covered by BC Med. She did not say how this was answered.
- Janet doubted there would be any forthcoming announcement from BC Healthy Ministry concerning CCSVI as a result of this meeting.
- Janet mentioned the upcoming meeting August 26 with Federal Health Minister and various CCSVI “experts”. Her impression was that many of the provinces were waiting to see the outcome of that meeting.
- Janet asked the BC Health Ministry to allocate more money to do clinical trials. That’s about all I remember for now. I think the main impression I got was that we are being listened to – both by the BC health Ministry and the MS Society. Unfortunately, the research still has to be done – no one is willing to move until this happens.
Oh – Janet mentioned that the UBC study has not actually started yet – they have only just recently received approval from the ethics committee. So hopefully UBC will be starting that soon.
The wheels of industry move very slowly people.But Janet did give me some hope.And I thank her for that.
Braden Corby

 

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