Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Ontario MEAO Call To Action

Discussion in 'Advocacy Projects' started by shannah, Mar 23, 2015.

  1. shannah

    shannah Senior Member

    Messages:
    1,366
    Likes:
    1,638
    MEAO’S E-NEWSFLASH
    Dear Members and Friends of MEAO:
    We have some very exciting news for you! You all know of MEAO’s involvement with the business case proposal for the Ontario Centre of Excellence in Environmental Health –-- now to find out more, go to this great new website and follow all the links:
    Campaign for an Ontario Centre of Excellence in Environmental Health – The Time is Now
    www.recognitioninclusionandequity.org
    How can you help? Follow this link:
    Take Action
    http://www.recognitioninclusionandequity.org/take-action/
    More information and news from MEAO will follow very soon.
    Best Wishes from the MEAO Board of Directors,
    Denise Magi
    Vice-President MEAO
     
  2. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Ugh... environmental illnesses... Branding ME and FM as environmental illness is going to further stigmatize.

    Will the Center of Excellence treat Asbestos exposure? How about lead exposure in children? My best guess is no.
    How about Lyme disease, and sick building syndrome, which are more of an environmental illness than both ME and FM?

    ME and FM are as much linked to the environment as are rheurmatoid arthritis, lupus, multiple sclerosis... You get the gist. Stop stigmatizing ME and FM (and the patients in Ontario who seem unable to access mainstream medical care)
     
    Last edited: Mar 23, 2015
    Kyla, Mij, barbc56 and 2 others like this.
  3. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,092
    If it means I can get effective treatment and ME gets recognised for the disease that it is I don't much mind.
    To me it would be a step forward from where we are now and things can change and adapt as new evidence comes to light.
    Since we're still kinda short on that confusion will reign.
     
  4. barbc56

    barbc56 Senior Member

    Messages:
    3,652
    Likes:
    5,008
    I think ONLY focusing on environmental factors would only serve to sidetrack any research into our illness. It may play a part but I would think there are other factors at work that have higher research priorities.

    Barb
     
  5. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,092

    I'm somewhat naive about these things. And for all my fervour to get political about having ME recognised it is all new to me.
    Until recently I had been focussed on raising my kids and much energy went into moving from place to place. Only now that I'm more or less bed/couch bound (and hooked into this really savvy community) have I begun to explore this.

    Soooo what I mean is that you may have a very good point there. I have no idea what being designated as an environmental illness does to any future research. But now that you bring the topic up it is certainly worth considering.

    So now I'd like to know from MEAO why they might have pursued their goal along this particular avenue and if and how much of an impact would the designation of environmental have on future research. Although beyond Patrick McGowan at Scarborough UofT I don't know of any research being done here in Canada and PMcG's work (I'm not sure on this) may not be ME specific research?

    Possibly like many others here, I seem to be constantly straddling the line between criticism of the raw deal being handed us by the medical community and being hopeful that what's offered will break me free of these bonds.
     
  6. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,092
    PS

    What can we/should we be doing about this for those of us in Ontario?
     
  7. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Actually Dr David Patrick in Vancouver. is running some pretty good research at the moment. He has a pathogen study, hopefully well in the way of publication by now, and a gene expression exercise test study which is still recruiting for.

    also worthy of mention a researcher from Alberta has been funded by Solve CFS to identify a biomarker. We haven't heard fromor that project in quote a while, I wonder what happened?
     
    barbc56 likes this.
  8. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,092
    Good to know. I'll try and see if I can find more info. If I find something I'll share it here. It's good to keep tabs on developments.
     
    Kati likes this.
  9. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,092
    Valentijn likes this.
  10. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    'complex Chronic Diseases Study' has a facebook group and occasionally recruits participants. Right now they are recruiting for 2 consecutive days exercise test for gene expression.
     
  11. Daffodil

    Daffodil Senior Member

    Messages:
    4,923
    Likes:
    4,707
    a place where we can go and get disability letters, maybe a vitamin IV or 2, some understanding would be better than nothing. i am very cynical about getting good treatment here.
     
    Valentijn likes this.
  12. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,092
    Yeah, I've been thinking (however slowly) and I don't see how a COE will hinder research that doesn't exist, at least in Ontario.
    And getting something up and running would be good. As the understanding of ME develops the fact that the COE is under an alternative heading--I'm not really sure how that would play out as unfortunate.
     
  13. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    I would say declaring it a purely environmental disease definitely hinders public perception (which hinders both research and treatment)

    The environmental aspect is far from proven. Attaching ourselves to what is currently deemed fringe science (which might one day be proven) just undoes all the progress we make by publicizing the reputable researchers who are conducting meticulous research (LIpkin, Hornig, Fluge and Mella etc)

    ME and CFS are held to higher standards of proof then anything else because the majority of the public thinks we are crazy or lazy, or have the "yuppie flu".
    I don't personally like the idea of giving them more ammunition by declaring we were made sick by Wifi and environmental toxins.
    I am not insulting these theories if you think they are factors in the disease, they are just ideas which are not super mainstream. If there emerges a robust, reproducible body of evidence to support this I would jump on the bandwagon.
    Until then I'd also rather that wasn't the ONLY approach available here.
     
    Valentijn, SOC, barbc56 and 1 other person like this.
  14. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Agreed. i hope these comments will be read by MEAO and that Ontario residents will make themselves heard in that regard.
     
    Daffodil, Kyla and barbc56 like this.
  15. Daffodil

    Daffodil Senior Member

    Messages:
    4,923
    Likes:
    4,707
    agreed.
     
  16. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,092
    @Kati @Kyla

    I hear what you're saying. As I'm thinking this through on the fly my thoughts regarding your above comments are that important studies and research (Lipkin/Hornig, Fluge/Mella) certainly won't be affected by a COE in Ontario that is under the rubric of Enviro illness.

    Understand that I think it's really not the natural home for a disease like ME. I also do think that it's difficult to understand from the sidelines the effort that went into accomplishing this much. The question then becomes: shall we wait/hold out until we get exactly what we want? And I expect that that really is the question. Had there been any real chance of us getting a COE under other/ better terms?

    I know that anything might seem better than enviro but given our present understanding of ME should it be autoimmune? Neuro? Infectious disease? Would any of these areas of medicine presently accept ME? I'd be careful with the neuro choice as it so easily fits in with the psychiatric model.

    It's quite normal to wonder how a thing will unfold in the future, what the ramifications will be, what consequences etc.
    It's been my experience that the future is seen through a mirror darkly.

    Today in Ontario we've got nothing, nada, squat diddly, zip. Soon we may have a COE. What that means for research I can't say.
    It could mean that research here takes an unlikely turn, gets off the mark, goes the wrong direction. I also do believe that real progress can come from unlikely places where ME wasn't even on the radar.

    So all in all, when I think about it I'm not quite so despairing. And I'm deeply grateful that while I can't do much at all there are those out there who are really trying to do something even while they must compromise. Ultimately it's all temporary even as it starts to feel almost a little too late in coming.
     
  17. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    How do you build a center for excellence with 1 maybe 2 doctors or the whole province, one of which thinks all patients need to see a naturopath before being seen?

    How does a disease get traction in the medical care system when so much is going wrong for the patients, multi-systemic, but none of the medical specialty is actually primed in.what is going on?

    What constitutes a center of excellence, and what makes you think that these doctors are the absolute authorities in these diseases? What treatments will be offered there? What research will happen there? What will a patient trajectory will look like?

    Here in Vancouver, patients are seen by physicians twice, are offered group therapy thence they are discharged. No testing. Treatments? If you call naturopath and voo doo medicine treatments, then you are in luck. If they call this Centers for Excellence, then I will ask them to go see the HIV centers for excellence and see if naturopaths have been taking over their care.

    Excellence begins with good science and good medicine. Evidence-based.

    How can we have centers for excellence when there is abysmal amounts of funding for research at CIHR.

    food for thoughts.
     
    Last edited: Mar 25, 2015
    barbc56, *GG* and Valentijn like this.
  18. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    Hi @Snowdrop
    I am not arguing against a centre of excellence by any means. Just the way they are positioning it, naming it etc.
    That may seem like semantics but it has very real consequences.
    As an "environmental" clinic will it attract immunologists, or virologists etc to work there? Or even ME/CFS specialists with a different approach? very unlikely.
    You are absolutely right that we are underserved and have no resources. that is why it is extra frustrating to not have a voice or options in what might be done.
    If they positioned it as an ME/CFS clinic or even a Complex Chronic disease clinic without a specific "environmental" agenda, that would leave some options open for a variety of approaches, not to mention being potentially more attractive for both traditional funding sources and the hiring of different kinds of specialists.
     
    barbc56, Valentijn and Kati like this.

See more popular forum discussions.

Share This Page