Here are a few of the highlights through the eyes of just a simple MS'er that has been Liberated and any relevant information worthwhile of reporting.
A group of people maybe around 10 attended early and were advised by 3-4 staff to wait as it is a closed door meeting wrapping up before the room will be available. At exactly 5:50 this group of 10 went to the room and were told there is no more room and we had to go an overflow room where they had space for 400 people.
We told the staff member how can the room be full already? The doors only opened 2 minutes ago and why were people eating a snack and having coffee? They couldn't explain this just we needed to go upstairs. Some tables were removed and chairs were stacked against a wall. The chairs were brought to the open space and those in wheelchairs could have access to the room.
Bottom line I don't think they expected the numbers of MS'ers in attendance as what not advertised that this was a part of the Cardiovascular meeting that had taken place earlier in the day.
Meeting started with introduction by Dr. Rubin listing his qualifications and Involvement in the CIHR.
He did make very clear he had no involvement in Drug companies or $$$ in the industry.
Slide of CTV News anchors Lloyd Robertson and Lisa Laflamme:
Spent about 10 minutes on the effects of media reporting of CCSVI and MS. Also talked about and showed in body language regret about the lack of advancement in therapies for persons with MS.
What is CCSVI?
Showed many slides of veins and examples of blocked veins and healthy veins, 20 minutes was spent talking about veins and the importance of blood flow.
Talked in great deal about studies done by Zamboni how they were not "controlled or Double blinded" how they are flawed due to this:
Spent time explaining what controlled and double blinded means and how important this is to the advancement of medical science and regarded amongst those in the medical industry.
As an MS'er I felt after the 30 min talk of veins, blood flow, MS, showing Dr. Zamboni's slides NEVER was an introduction included of Dr. Zamboni's credentials or experience spoken of and this is a very sore point with Dr. Rubin .When one slide of Dr. McDonald’s numbers were put up of ultrasound testing this slide was removed within 5 seconds and was unable to view the results. Dis mention in his words how he was in Barrie On last Tuesday and viewed ultrasounds and spoke to a few patients.
Moved to BNAC and talked about 30 minutes about Dr. Zivadonov Showed slide of Buffalo study and talked about 8,000 waiting list for entry in study:
56% result was talked about in great detail and how people were chosen for this study.
Slides were shown of Dr. Ludyaga's numbers in Poland:
Again to an MS'er these numbers are significant but was not talked about in detail compare to that of Buffalo. Lusyaga was never mentioned once or Prof Simka.
Slides of studies done in Sweden were shown and discussed:
A lot of ECTRIMS conference was talked about almost without saying I could guess he was there in attendance, the amount of time maybe 15 min was spent on the European study and the CIHR meeting listing those involved and working group which has 1 MS'er included where a big sigh from the crowd happened when this slide appeared.
You really could sense from the timeline on Aug 26, 2010 the meeting of CIHR was crucial to the ECTRIMS meeting.
Stents were introduced with slides what they are and what they do:
About 10 minutes was spent with a slide that got put up of the complications from Liberation therapy listing the 3 deaths that have occurred and their dates of passing. Also talked of 1 person who had complications with the clinic in Mexico. Information was discussed at great detail about Canada's responsibility concerning "refusal of care" this was spoken that must not happen anywhere in the industry but was not discussed into the cause of the Burlington man that passed away but rather the cause was the level of blood thinning medication he was given in Costa Rica and if he had stayed in Canada how this would not have happened.
Very briefly talked about medical Tourism and the ethics of Canadians doing this and need of quicker research and studies how this is a time period "never seen before" how $$$ have been allocated to help speed this process:
The MS Society in conjunction with the USA Society are very involved and slide of money allocated and mention of the 1 Million dollar holding back for a future study is ready and on hold for further research and data.
Talked about W5 and effects of Social Media:
Spent about 15 minutes talking about these news media and Internet reports are NOT valid as they are considered anecdotal and not accepted in the medical field. Talked about how social media is planning behind the scenes meeting such as in Ottawa and Government. he did say how Feb 8 2011 is a perfect example. A comment from the crowd came out "you had to know about this meeting taking place" his reply came back" I say to you sir I was not aware of this meeting" visibly shaken you cold tell as big sigh with deep breath was included to get back on track of presentation.
Slide was shown what Canada and its province's are doing concerning CCSVI:
Nfld and Labrador spending money planning on tracking those going out of country for treatment and following them NS planning on following suit Sask was briefly talked about and the effects of their 5 million dollar contribution and you tell from the brief description Dr. Rubin DEFINATELY NOT IN AGREEMENT with Sask involvement although he did state they have the highest number of MS'ers in Canada.
30 minutes were spent taking questions from those in attendance:
One question came from someone asking why Hamilton was not included in the 7 studies that are happening. You could tell again by body language he was uncomfortable answering this question.
Another woman talked about how her 46 yr old daughter is declining fast and had a VERY emotional plea to Dr. Rubin:
Dr. Rubin did express his heartfelt but yet Professional emotion on how difficult to see a loved one declining in health but the need of data and research was important to be wait for the research.
About 20 questions were taken most were personal involvement or Liberation success of therapy:
Dr. Rubin did ask those in attendance to raise their hands of who has had the therapy: about 12 people raised their hands.
A great question from a gentleman on the effects of "the placebo effect" His improvement of liberation is bladder control this cannot be proven placebo but physical.
I can also state personally I went 5 hours with no bathroom needed. I agree with the statement no placebo seen in this body either.
The meeting closed around 9:00pm and it appeared that about 30 people had left before the meeting ended.
Jamie