New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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For those of us in Ontario: I found this on the MEAO website

Discussion in 'Advocacy Projects' started by Snowdrop, Mar 16, 2015.

  1. Snowdrop

    Snowdrop Rebel without a biscuit

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    I don't often go to the MEAO website as I have discovered that the information there is fairly static with nothing much new.

    Since following the IOM report threads I found myself wondering what might be happening in my own home area. And also what I might do about ME advocacy here (the short answer being--not much in the short term. In my current situ it will take me some time to get a grip on organising any action on my part).

    When I went to the website I found a new document. I'd like to share it here if you have not yet found it.
    With the mea culpa that I have not yet read it through, it would seem to be very long.

    Here is the link:

    http://www.meao.ca/events-dec5a.html

    Edit to add: About the document:

    Recognition, Inclusion and Equity – The Time is Now: Perspectives of Ontarians Living with ES/MCS, ME/CFS and FM

    On December 5th, 2013 at MEAO's Community Engagement Day, MEAO released its major new report,'Recognition, Inclusion and Equity - The Time is Now: Perspectives of Ontarians Living with ES/MCS, ME/CFS and FM.' Funded by grants from the Ontario Trillium Foundation and Ontario Ministry of Health and Long Term Care, this report has been submitted to the Ministry as a major supporting document for a business case proposal to establish the 'Ontario Centre of Excellence in Environmental Health' - a network of new clinical, support, research, policy and education and outreach services for our community. We are pleased to make available both the full report and the shorter 'Highlights'.
     
    Last edited: Mar 16, 2015
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  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @redviper

    So you are Canadian.
    I agree about the lack of networks. It's time for us to get together maybe and change that.

    (I have a lot of nerve saying that as I'm likely not even good at talking the talk let alone walking the walk). :aghhh:

    But I just put that out there. If we all start at least conceiving the idea eventually we'll slowly progress forward hopefully.
    It took a lot of time and effort to create the MEAO document I expect.

    For me though, I find that it's the hot weather that is the problem. An arctic vacation sounds like the ticket in the summer. :cool:
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    Also, just to defend myself here, I mean to remember and act on this intention to do something.
    Starting small along the lines of commenting on media stories or suggesting the media consider the biomedical POV or sending a letter to an MPP.

    Having said that I'd strongly advice anyone to not hold their breath in anticipation of said intentions.
     
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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Given this past Ontario winter, I have to admit even for me it was a bit much but I'm housebound. If cold causes worse symptoms for you then I can imagine this winter would certainly cause you to explore your living options.

    I do have pleasant memories of vacationing in Arizona. The dry heat is easier to bear than the sticky humidity here.
    But as time goes on I have increasing issues with bright sunlight, hopefully that's not a problem for you if you're considering relocating.
     
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  5. waiting

    waiting Senior Member

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    There is Canada's National ME/FM Action Network: www.mefmaction.com

    They have accomplished --and continue to accomplish -- a ton in advocacy.
     
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    @waiting
    Fair point. My memory of their website was pretty much the same as MEAO but I see they have a lot more there now.
    It's been a while I guess and my memory as ever sucks when trying to recollect these things.

    I'll have to have a look around there.
    But for today, I'm getting past my best before date/time with posting.
     
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  7. Ember

    Ember Senior Member

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    Here's an example of an advocacy group using a Facebook page. I've joined a local support group, but attendance for our patient population can be a problem.
     
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  8. Kati

    Kati Patient in training

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    MEFM Bc is not an advocacy group, they are a patient support group. Their goal is to support patients living with ME and FM and inform the public about these illnesses.
     
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  9. Ember

    Ember Senior Member

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    Can you clarify the difference?
     
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  10. Kati

    Kati Patient in training

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    While advocacy work has been done by National MEFM Action Network, so much more needs to be done. i myself have offered my services to help and nothing ever came from that. So I am doing my own thing, including writing to the ministry of health and CIHR reps regarding the recent news including the IOM report and the Lipkin paper. These are very important because they are showing ME/SEId is a real disease, and showing that there is presence of inflammation (cytokine patterns)

    The government should be briefed and reminded that there are, as of 2010, 411,466 pts living with ME in Canada, a large portion of us unable to work, sick without health care. In 2001 Stats Canada counted 200,000 of us.

    There is no government efforts whatsoever to respond to this epidemic. 5 cents per patient per year for the last 10 years is where it's been at. (420$ per pt for Parkinson's)

    i am baffled with Ontario continuing to brand ME/SEID as an environmental disease. If it was so, then should HIV be branded as an environmental disease too? After all, it came from monkey in Africa.

    While I am also one to seek out health care in the US, at my own costs, this only reinforces to Canada and the provinces that it is perfectly ok to ignore us as a patient population. We need to speak up and demand health care and research in our own country. The government spent a billion for the CIHR (Canadian Institutes for Health Research) and virtually nothing for 411,466 pts with ME.
     
    Last edited: Mar 16, 2015
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  11. Kati

    Kati Patient in training

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    According to Wiki:

    Advocacy
    is a political process by an individual or group which aims to influence decisions within political, economic, and social systems and institutions. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research or conducting exit poll or the filing of an amicus brief. Lobbying (often by lobby groups) is a form of advocacy where a direct approach is made to legislators on an issue which plays a significant role in modern politics.[1] Research has started to address how advocacy groups in the U.S.[2] and Canada[3] are using social media to facilitate civic engagement and collective action.

    Patient support: telephone line, newsletter, AGM, support groups, advice on disability, advice on nutrition, pacing, etc, community ressources, advice on which doctor to see. Etc.
     
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  12. Ember

    Ember Senior Member

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    Isn't community awareness and informing the public about these illnesses a form of advocacy?
     
  13. Kati

    Kati Patient in training

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    Very mild one. For instance MEFM BC has held a booth at the Vancouver Health Show. While some may think it is a big deal, the social impact has been nothing at all, other than the few coming and wondering why they were so tired all the time.
     
  14. Ember

    Ember Senior Member

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    I believe that the MEFM Society of BC is an advocacy organization, but I don't believe that ME/SEID is a Canadian brand.
     
  15. Kati

    Kati Patient in training

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    Just ask MEFM BC about their charter. You'll see.

    As for the name, hell, i've called it {name the disease here} that will work too.
    Honestly I don't give a Sh&$ how it's called. It still means there is no health care and it is still stigmatized, regardless of the name. because even if you call it ME. The health care professionals soon realize what it means and what it implies = no care for you.

    Edit to add: why do I know this about MEFM BC? Because I have been one of the directors of the board for 2.5 years. i have been repeated over and over that MEFM BC was not an advocacy group.
     
  16. Ember

    Ember Senior Member

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    As a director of the board, can you provide information about their charter? From what you say, the MEFM Society of BC does engage in advocacy.
     
  17. Kati

    Kati Patient in training

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    I said I i have been. i am no longer.
     
  18. Ember

    Ember Senior Member

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    The 2012 ME Primer is freely available and provides management and treatment guidelines for medical practitioners.
     
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  19. Kati

    Kati Patient in training

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    I really have no idea why the MEICC never picked up in popularity despite many, many of our experts being the co-authors.

    My take is that patients can push and shove however they want, but until the doctors decide it is an important problem, nothing is going to move.

    And taking the problem in the alternative medicine world is not going to solve the problem. The self-management approach at the Vancouver clinic, harmful. The environmental health approach in Ontario, useless.

    What will it take? What will be the tipping point in Canada? Another Canadian Community Health Survey which will show there are even more of us? More suicide? A celebrity or a politician's child getting sick?

    And more importantly, we as patients have to stop waiting for things to happen.Status quo is too comfortable for all parties, except us of course.
     
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  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    A problem for Canadian ME sufferers is that health is a provincial responsibility. It makes it more difficult to unite as we are addressing ourselves to different groups.

    @Kati

    I was seen at the Ontario Enviro Heath centre at Women's College Hospital by K. Kerr.
    She was very lovely and caring but I found the whole exercise useless. But I'm curious when you state that it's useless are you now referring to the proposed future centre of excellence?

    I don't care if they want to call it environmental especially since along with ME they are attempting to provide service to MCS so long as they provide/offer proper medical treatment and avoid the psych nonsense.

    Anyway, I hope that those here on PR from all the various areas of Canada might spend some time cogitating on how we might best band together and (likely very slowly) move forward.
     

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