This Is MS Multiple Sclerosis Knowledge & Support Community

That is outrageous. They can't even be corrected or asked a question? What kind of society is this? Thanks, I'll donate (if I ever have any money left over at the end of the month) directly to Fondazione HILARESCERE, no need to go through such a dishonest middleman as the MSS, and I certainly wouldn't want any of my money going to their "experts" (my ass).

Hi Sandra,

I hope you are having a wonderful holiday in Hawaii!!!! You certainly deserve to have a lovely break after all the great work you have been doing on the CCSVI front.

They probably think our "simple" minds would not notice their editing. They have made a mockery of the "patient voice" issue they pretend to be in favour of.

At another point in the webcast, Yves Savoie mentions (3:04/8:05) that the patient voice is important. He says that for regular competitions, they have just started the process of engaging a patient to bring the perspective of patients to the debate at the expert review table. He goes on to say...in the context of CCSVI - because of the speed in which they developed an association with the American Association to form an expert review team, they don't have a patient voice, and for that he can only say he is sorry....????? Try and listen to it for yourself... paraphrased a bit. Unbelievable!

A patient's voice is definitely needed in the context of CCSVI - and not just the patients who are willing to wait however long the MSS and neurologists decide is needed (the only ones being allowed to speak on panels at the moment), BUT also the patients who recognize that "time is brain" as has been coined by someone else, and we cannot afford to wait...lease of all those in further stages of this disease. We should demand this.

Sandra, I don't mind you re-posting to your BC site. Perhaps others, who said anything contrary to what the "powers that be" at the webcast said, should also check if their remarks/questions were edited out.

Take care and have a lovely time!!!

God Bless,
Chrystal

http://www.mssociety.ca/en/research/ccs ... tm#webcast

PART 5 of Webcast (7:55/9:38...)
Yves Savoie is speaking, saying - living with MS is not easy....etc., etc.....

And then it goes right into the Moderator (8:03/9:38) asking a paraphrased 1/3 version of my question and comment re: double standards in advice from MSS and neurologists for CCSVI testing & treatment vs. MS Drug treatments that have now proven to be harmful to some patients.

Immediately prior to that 8:03/9:38 spot was my correction of Dr. Murray and then my question/comment re the latest March 29th news of MS Drug Treatments, which has obviously been edited out.

Sorry, I forgot to write down which "PART" to find Yves Savoie's comment re patient voice...CCSVI context. If anyone else comes across it, please post it here...need to hear again "for that I can only say I'm sorry," in reference to not having had the time to include a patient voice to bring to the table in the CCSVI context. Don't be sorry, fix it, include one now. Actually, please include TWO patients! One patient that reflects the MSS and the neurologists' view (the only ones being given a chance to speak even on the CCSVI Info panels) and one patient that reflects the view of the rest of us.

Some may think I'm being "picky". I am picky about the truth. Our health depends on the truth being paramount with all parties involved in CCSVI.

Hello WhyRwehere,

If you are thinking of stopping donations to the MSS, please let that decision be based on your personal experience and feelings, not what I've written.

I have read accounts on CCSVI Facebook sites from people who have been helped by the MSS when they needed help...and I've also read accounts from those who said they were turned away when they sought help.

My big/huge issue is with the incorrect statements that are repeatedly being thrown out there. The duplicity. For my truthful comments/question (and who knows how many other comments from other MSers) to be deleted from the web-cast - is just unbelievable. If I see duplicity and falsehood triumph in one area, how can I ever trust any other areas? That is my own personal struggle at the moment.

Take care and God Bless,
Chrystal

Absoutely agree Chrystal, we all have to make our own decisions, and based on what I keep seeing coming from there, I've decided. Anyhow, I don't have any money, so they aren't losing much!

Have a lovely evening, WhyRwehere.

Take care and God Bless,
Chrystal