Recently stented man set to wave fist angrily in general direction of MS establishment

Barbering, grooming, and sartorial finish not exactly as illustrated

Tomorrow, Friday the 9th of April, I’ll be speaking to a meeting of interested MS patients organized by Rebecca Cooney of http://www.msliberation.ca. I’ll try to keep my remarks temperate, but certain auditory cues may prompt frothing at the mouth. To avoid forcing the group to witness my spontaneous imitation of late-stage hydrophobia, I’ll hope the Q and A steers clear of the phrases “Big Pharma”; “let’s wait for more testing” and “high-risk surgery”

I’ll be at the Jack Purcell Community Centre, just off Elgin near Gilmour, and the time of my presentation will be 11.30.

If you are in the neighbourhood and would like to hear about my experience in Poland getting the Liberation procedure, pop by –  I’d love to meet you!

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13 Comments

Filed under Post op

13 responses to “Recently stented man set to wave fist angrily in general direction of MS establishment

  1. LaVonne

    Hope you tape it and then post PLEASE! I am in US but would love to see it!

  2. prairiegirl

    Can’t “pop by” as I am not in that neck of the woods (a few provinces west), but look forward to hearing about the presentation. Thanks for being such a great advocate for CCSVI testing and treatment.

  3. Susan Rochon

    What you will be doing tomorrow is fantastic. I wish I could attend, but I work from home, and have three
    scheduled teleconferences at the same time tomorrow. I will have friends and family there. I would very much like to meet you and speak with you. We should all have the proper medical treatment availalbe in Canada – that is our right as Canadian citizens. What is wrong with the MS Association. It’s not representing its patients.
    Thank you for speaking out. Much appreciated and good luck tomorrow.

  4. Raymonde Leblond

    A big Thank you for what you are doing for us and keeping us informed. Good luck tommorow!

  5. Mandy

    I would love to, except I would probably be late and be toting my 3 year old with me. Is being late a problem?

  6. John O'Connor

    Your MS Association is just like our MS Society here in the UK. They are subsidised by donations from all the major drug companies and so, they have a vested interest in maintaining the status quo.

    They are more interested in manufacturing and dispensing billions of dollars/pounds worth of their drugs all around the world. They have no interest whatsoever in helping those of us afflicted with this terrible disease !

    But, we will get there in the end – it is our right !!!

  7. Penny White

    Dang, I cannot go on Friday, though I would love to meet other MS patients and especially would love to meet YOU! Oh, if it’s a success (and I’m sure it will be) please please please choose another date and plan to do it again!!! Maybe in the west end? However, that doesn’t matter, I am willing to drive far to such a meeting! (alas, cannot tomorrow..)

  8. Sarah

    Hi Evan,

    I have been following your blog and appreciating the updates.

    Like many of the others, I would love to come today but will be unable to 😦 Please update us if you will be speaking again and i will plan to attend!

    It occurred to me today that with the annual MS walk coming up in Ottawa (April 25) , there might be an opportunity for people living with MS to make a statement about this issue? There is always media present at this event as well.

    I thank you so much for being a pioneer. We need to keep this dialogue going. We need to come together as a group to work towards this common goal. It is an exciting time for us… if we can get by all the red tape!

    Sarah (Ottawa)

  9. Dale Woolsey

    I wish you luck Evan. Unfortunately Saskatchewan is too far away for me to atend today. I’d love to and I know you’ll do well speaking about a subject you well know.

  10. Bridget

    how’d it go, how’d it go, how’d it go? I wish I could have been there but I live in the US and couldn’t. Where will it be posted so that I can watch it, I can’t wait!!!!

  11. xtine

    Hi Evan and Duncan:

    Heard the interview on CBC today about your talk at Jack Purcell. I have been following research in MS field for five years and frankly am amazed, in a positive way, about how galvanized the MS community is about the ‘liberation’ procedure. I remain a sceptic about this as a ‘cure’ for MS as recent research seems to indicate different genotypes and trajectories in people with MS. What I am gobsmacked about is that in the province of Quebec both IVIG and tysabri are funded while in Ontario neither treatments are. The CRABs are the least effective current treatments available yet these are funded in Ontario. I really hope that you and your brother expand your critiques so that these treatments are available for those who may not qualify for the ‘liberation’ procedure. Anyone with a chronic disease, I expect, wants to have a number of choices available in terms of treatment and these choices are not available in Ontario to people relying on publicly funded health care (they are available in a number of other provinces in Canada). The ‘liberation’ procedure does pose a small risk, risks are associated with these other treatments for MS which are not available in Ontario, and risks are associated with the CRABs treatment that most people (including you have taken). People with MS have to make informed decisions about what risks they are prepared to take but they should have as many available options as possible in my opinion. It is wonderful that you are advocating for public coverage of the ‘liberation’ procedure but there are other treatments for MS such as tysabri (do a search on youtube for testimonials) that have documented incredible improvements in the quality of life, etc. Why is tysabri not available in Ontario other than through some private health care plans? While tysabri has received a bad rap because of incidents of PML – if one looks closely at the data, it is most likely to occur in people with MS who have a history of taking immuno-suppresant drugs (with their own risk profiles). This is all to say that there are other potential treatments for MS other than the ‘liberation’ treatment – which some people with MS may not qualify for in the first place – that are not available in Ontario.

    I hope that you and Duncan continue to experience an enhanced quality of life. But please, in your quest, please be aware of the other treatments for MS that are available that are not available in Ontario.

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