Date: March 31, 2011 11:18:23 PM PDT
Subject: letter to the editor
Good morning,
Attached is a letter that I felt I had to write after Barb & I went to the MS Clinic in Kelowna. We don’t know if they did put up the poster. They told us that it would be up to their superior.
There was was a temporary nurse at that time. She attended a CCSVI conference not too long ago. She kept repeating to us how that the media only painted a good pictures of CCSVI. That they saw many more that got worst from the procedure and that many were taken advantage and lost all their life saving. You get the draft I’m sure.
I felt that she was so condescending I just had to get it out of my system.
I have no problem to send it to the editor.
Please let me know if you disagree with any statement made as I don’t want it to reflect bad on our group. If you any way to make it shorter please let me know as well. It will be easier on the editor to approve it I’m sure.
Thanks!
Jacinthe Gomes
jacintheb2@shaw.ca
H 250-768-4834; C 250-863-3248
Skype jacinthe.gomes
I’m writing this letter to the editor with a certain amount of hesitation as I am concerned about possible retributions from some who worked in our medical system or from MS Society BC Division. I am writing first as a taxpayer and then as a person who happens to have been diagnosed with Multiple Sclerosis in 1980.
I am doing relatively well at this time and I am not looking to go on the 1st approved pill in Canada at $30, 000 + with a list of serious side effects (as usual). I am not even considering getting the CCSVI procedure done at an estimated cost of $5,000 when it comes to Canada.
I believe many more should have priority to have it done if they choose to do so.
For many years, I volunteered for the MS Society as board member, fundraiser, peer support group, etc. One could say that I kept quite informed on the subject over the years by attending seminars and doing research as it used to be part of my paid work. However, I am offended when our concerns are being minimised by those who work for the MS Society and the medical system because as we are not paid professionals. We just have MS or our lives are affected by someone who has Multiple Sclerosis. We are to fundraise for more research.
Note that both researches are base on theory:
• MS Research in Canada strongly support that MS in Autoimmune disease.
• CCSVI is characterized by blockages in the neck and chest veins
We are told that the media only show the success story about CCSVI.
• I know 16 people who had the treatment done. None expected miracles or have regrets in spending $10,000 or more. They knew it involved risks as any possible treatments, prescriptions, surgery, etc. To them the benefits outweigh the risks.
One did not qualify & wish he could have been checked first right here in Canada.
• In March the International Society for Neurovascular Disease (ISNVD) held its first annual meeting. MacLean’s published 2 well researched articles. The journalist Anne Kingston approached “Julian Spears, co-director of the neurovascular program at Toronto’s St. Michael’s Hospital, who will sit on the Ontario after-care committee; the MS Society of Canada sent Karen Lee, assistant vice-president of research and programs. What they took away from the conference is unknown, at least publicly.
Both declined to be interviewed by Maclean’s.” http://www2.macleans.ca/2011/03/22/this-is-what-it-must-feel-like-to-wit...
We are told that some have lost their “Life-Savings” in their quest to improve their quality of live. Do they realise what it means?
• Less money to give for MS research;
• This kind of money could improve our economy if MS clients got any better.
We are told they are charlatans looking to grab our money:
They do not argue the fact that right now “Drug therapies for MS is a $10 billion industry primed to grow to $15 billion by 2015”. It is estimated that there is 75,000 Canadians with MS. By my revised calculation that mean as of now we spend $133,333 per each affected Canadian.
http://www2.macleans.ca/2011/03/22/this-is-what-it-must-feel-like-to-wit...
• It is estimated that the CCSVI Procedure would cost an estimated $5,000. WOW!
• If they are charlatans why would they want to assist us in developing a protocol to start investigate & treat the condition. I guess WE in Canada we are Mighty Special.
I applaud Darrel Gregory, a member of the Alberta Chapter MS Society, for being so humble and facing possible backlash, as he went public on CTV saying: "We are sorry, I think we came down too heavily on the side of research and not enough empathy for patients and what they're going through” - "We want it to be available for people because we know that it works for some people," says Gregory. "Some people have said that it has resulted in an improvement in their quality of life and that's worth something and those stories need to be told." http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110326/edm_ccsvi_11032...
I am a proud member of a local committee of members of the Westside Multiple Sclerosis (Westbank & Peachland) who have established a working relationship with the Reformed MS Society of Canada. Our goal is to hold an unbiased informative session for our area on this straightforward procedure (CCSVI) that has been beneficial for so many who have been affected by Multiple Sclerosis. The main goal ultimately is that the treatment be AVAILABLE right here in Canada so it can be available to those who choose to have the treatment done if they qualify.
Sat. April 9, 2011 – 11am to 2 PM. FREE ADMISSION Emmanuel Church 2600 Hebert Rd., Westbank, BC. Reserve a seat: 250-768-4834, 250-768-4677 or email admin@reformedms.org. Look for more info & video on www.reformedms.org
