International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Things are heating up in Canada!

Discussion in 'Action Alerts and Advocacy' started by Kati, Jan 14, 2017.

  1. helen1

    helen1 Senior Member

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    @ScottTriGuy
    You're an inspiration! Sending thanks and admiration...
     
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  2. Christian Godbout

    Christian Godbout

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    This newsclip is just perfect to show how it's done - first you ask for something, and if you are not satisfied, you ask LOUDER! Simple as that! Thank you @ScottTriGuy. If every PwMe in Canada were like you, things would move faster for sure (and thanks to everyone else involved in this event of course)
     
    merylg, shannah, actup and 8 others like this.
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    Thanks @ScottTriGuy for your persistence. It's much appreciated.

    Not committing to the obvious is just a tactic to avoid taking responsibility. If she agreed to the biological nature of this disease she would then be more obliged to render proper assistance.

    The sticking point with this position is this: If she won't state that ME is biological than by default she is suggesting that it may be psychological in nature. How does she support that position as a medical professional? Given the diverse nature of the ME population and their previous lack of psychological issues and going from living a full life that they were fully invested in how do people come to all of a sudden be psychologically vulnerable to believing they're sick when they are supposedly not?

    Waffling on this is, as I said, just a tactic.

    I hope that the meeting with her will be recorded in some way. It's the only way I see to hold her accountable. Politics is all about perception. This particular administration has chosen First Nations people as their poster cause in the health portfolio (and FNP deserve gov't assistance in solving some up to now intractable problems). So long as they can be seen to be responding to real needs then anything else that doesn't improve their standing doesn't get attention. Unless we make it necessary for them to pay heed.
     
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  4. perrier

    perrier Senior Member

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    I agree. It's not defensible,it's disgusting! Has she forgotten how years back women were called hysterics and in fact had MS.
    There's enough research out there to call this biological. Shameful
     
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  5. perrier

    perrier Senior Member

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    Excellent observation
     
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  6. Kati

    Kati Patient in training

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    The thing is this: she is one of the first health ministers to also be a MD. She was a family practitioner, and also served in Africa for many years and she holds HIV/AIDS very close to her heart.

    She trained at University of Toronto where it is safe to say, there has been no adequate teaching regarding ME for decades now. If it was otherwise, patients in Ontario would receive adequate care and appropriate research funding. She may have been in contact with Edward Shorter and she may be receiving briefings and updates from the british psychs from him or others.

    We cannot assume that Dr Philpott reads any of the information on ME, or where she source this information from. One cannot assume that she is reading the tweets that many of us address to her in regards to science. She may have blocked people like me for a long time. She only retweets people who congratulate her on her work which usually surrounds First Nations, mental health, HIV/AIDS and social determinants of health. And she tweets on champions for these causes.

    It's a tough nut to crack (not her, the issue!) in order to reach to her.
     
    Last edited: Jan 15, 2017
    merylg, helen1, Chris and 9 others like this.
  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @Kati
    I agree with what you've said above. I've thought it very likely that she pays selective attention to things that come across her desk so to speak. Not any different from any other politician--there is a lot that comes to their offices from constituents from many different fronts.

    But using the psych card (or the not sure it's bio to phrase it different) is just the easy way to dismiss having this issue become something to attend to. I'm sure she's very busy dealing with many health issues.
     
    merylg, ScottTriGuy and Kati like this.
  8. Old Bones

    Old Bones Senior Member

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    I wonder what the response would be if a person with ME were able to present their case at one of PM Trudeau's damage-control town hall forums (along the lines of Kathy Katula's dire energy poverty story that "blew up" in the media after the Peterborough meeting).
     
  9. Woolie

    Woolie Senior Member

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    I differ here: I feel this was an unfair request. I feel that requests to a politician should be largely about policy, about what strategies will be developed to research and treat this illness in the future, and how these will be funded. They shouldn't be expected to make pronouncements on factual matters that are outside their expertise.

    Maybe she could have been asked what sorts of research/treatment approaches she will be supporting/prioritising? Gets at the same issue, without requiring her to make pronouncements.
     
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  10. meadowlark

    meadowlark Senior Member

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    Scott--first of all, bravo a thousand times!

    I assume this was in Ottawa (?) I would have loved to have gone, as I'm having a good streak, but couldn't have managed it financially.

    You were great!
     
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  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thank you @meadowlark , the Millions Missing Canada team, most too ill to be out and vertical and very verbal, have done all the heavy lifting on social media, so they get your thanks too.

    Minister Philpott's meet and greet was in her home riding in Markham just up the 404, targeting her constituents so it would've been great to have you there too.

    We're planning other stuff so if you're not already on our contact list, send an email to MillionsMissingCanada@gmail.com and we'll keep you in the loop - and mention you're in Toronto so we know who to reach out to for location events / campaigns.
     
    merylg, shannah, L'engle and 4 others like this.
  12. Esther12

    Esther12 Senior Member

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    I've only skimmed through the thread and not watched the clip yet, but my instinct is that it's best for political campaigning to stay away from the 'it's physical not psychological' type issue as i) politicians can want to avoid getting involved in things like that and risk treading on the toes of 'experts' and ii) it can end up playing into the 'stigmatising mental health issues' type meme if not done incredibly carefully (and even then it can still get twisted).

    Thanks a lot for the work getting media attention onto things!
     
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  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    "HIV is the best thing that ever happened to me."

    It took me a while to get to that point. But first I experienced a lot of sickness. Guilt. Anger. Shame. Fear. The hope and motivation and appreciation only came with life-saving treatments.

    Then came truly meaningful work increasing access to HIV meds in Malawi. And working with wonderful, empathic and impactful people. Many of them physicians! And that's how HIV became the best thing to happen to me.

    And then came ME.

    And it is the worst thing that has ever happened to me.

    Yet I consider myself to be fortunate.

    The ME folks who were able to drag their bodies out yesterday to protest are paying for it in multiples today. They knowingly sacrificed their health to make change. And the ME folks too sick to attend, they do so much hard work online to bring public awareness and community engagement.

    I am in awe of my ME friends and know that if I was only half as sick as them, I still wouldn't accomplish half of what they do.

    They are my inspiration to push forward. Hard. And they are a reflection of my fear for my future self.

    So I have the meaningful ME experiences. Check. With wonderful and impactful ME people. Check. Now I just need the life-changing treatments.

    And then I'll be able to say, "ME is the best thing that ever happened to me."

    That is my hope.
     
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  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    In terms of what we asked of her - I agree, it would've been hard for her to commit to our ask in the moment.

    But we were looking to maximize value of this opportunity.

    Our primary intent was to leverage that expected lack of commitment to our ask into taking over the event agenda to create conflict and give the media a story to cover.

    If we had of gone with an easy ask, like 'can we have a meeting?' and she says 'yes' than we would have had success - but there's no conflict for the cameras.

    So we got the big bonus of national media coverage, increased public awareness and a freshly motivated community.
     
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  15. Kati

    Kati Patient in training

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    Hi @Esther12 I understand what you mean, but there comes a time when you have to nudge things a little bit and start using stronger actions in order to get the show on the road, as they say.

    Here in Canada, there has been over 30 years of attempts at getting the Canadian government involved. Abysmal amount of funding has been allocated to ME, and despite having a case definition called Canadian Consensus Criteria, the Canadian government never paid attention.

    What exactly are we supposed to do? What is the procedure we are supposed to use for a case such as ours? Unfortunately, there is no protocol, no instruction booklet, and more often than not, patients run out of energy or get sicker before an action can be successful.

    So I welcome any questions to the health minister. It was delivered very kindly and professionally, I'd say lovingly, even. Just watch the clip, it's not long.
     
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  16. CCC

    CCC Senior Member

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    Okay, so I'm agreeing with everyone.

    You were never going to get a major policy commitment in a one-off confrontation, but as you said, the publicity is great.

    The next hurdle will be in your meeting, when she has a briefing paper from her department, which you are unlikely to ever see (politicians never meet without first being briefed).

    All the best for the your recovery then preparation for the meeting.
     
    merylg, L'engle, Comet and 3 others like this.
  17. Woolie

    Woolie Senior Member

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    What you all did was great, @Kati. I only mentioned the thing about the unfair question because there were quite a few members saying how outrageous Philpott was not to have confirmed that ME is biological.

    I just wanted to point out that I didn't think it outrageous at all, it was totally reasonable for her not to have answered that.
     
  18. Kati

    Kati Patient in training

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    Hi @Woolie I need to make it clear that I did not participate in these efforts and that the instigator was @ScottTriGuy. His efforts and those who participated to this projects are to be commanded. I was simply reporting on the various media covering the story.

    i am curious about the reasons why you think it is reasonnable that Dr Philpott did not answer?
     
  19. Woolie

    Woolie Senior Member

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    I did talk about it above a bit.

    To understand the problem, you need to take it out of the context of the ME debate and consider another example. Its hard to see the problem in an area where we "know" the correct answer. Here's another current medical debate: whether one of the perpetuating factors in MS is EBV virus. Some researchers say it is. Others say that EBV and the immune response it initiates may have a role to play in setting up the conditions for the immune dysfunction, but not in perpetuating them once the disease is initiated.

    Lets say the evidence is mounting for the first view (EBV is a key initiating and perpetuating factor), but the studies favouring this view have so far been small and need replicating with larger samples.

    Then a patient group approaches you, who strongly believe that the EBV is the primary cause of MS, and that research that does not focus on EBV is a waste of valuable resources that could be dedicated to new treatments. They ask you to declare that EBV is indeed the primary cause of MS.

    Would you do it? Remember, you're not an expert, you probably have scant understanding of this illness and might not even have a view yet, let alone a properly considered one. You might not have had time to commission a report or even read reports commissioned by others.

    Okay, what if you did have a view on it - you personally agreed with the lobby. But you still only had a scant understanding of the details, and little in the way of firm evidence to back up your view.

    Would you do it then?

    For me, the answer is no both times. One reason is that politicians are not there to state facts. I'm not going to start believing the world is flat just because POTUS says it is. He doesn't have any greater authority on this matter than any other person. Potus can report the results of a report, enquiry or commission on earth shape, but even then, I'd still wanna be sure he had been briefed accurately, and that these reports etc. were not agenda-driven.

    Okay, going back to our previous example, what if instead, the group asked you to give guidance on where you'll be putting your MS research funds in the next period - EBV or immune dysfunction theory? This question doesn't require you to make statements of fact you're not qualified to make. It is a question of policy. You can answer that right away, if you know your government's policy. You don't need to produce evidence.
     
    Last edited: Jan 18, 2017
  20. Kati

    Kati Patient in training

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    Hi @Woolie thank you for taking the time to explain, however I find your example a bit weak. Moreover regarding MS patients requested research funding towards CCSVI (carotid enlarging) and got 5 millions for a clinical trial.

    But your example refers to 2 causes to MS that are of biological origin. It would have been a bit stronger when Ms was called hysterical paralysis and patients asking th health government if MS was psychiatric or biological in origin.

    In our case, the most reputable source for medical information, the IOM has made it clear that ME is a biological disease.

    Unfortunately, still in 2017, the influence of the psych lobby makes it difficult for health care professionals and policy makers to decide what it is, in the light of what they have learnt in school, from their peers, from Cochrane reviews and services like Up to Date.

    Was is inappropriate for @ScottTriGuy to ask the question? No, I don't think so. Asking the question opens a dialogue, or at least starts a questionning and signals the need for her to do some research about it.

    Did she have to answer? Well, in my opinion she was put on the spot. Is it right or wrong? Well, there comes a time when you have to be creative in order to get answers or to get actions. For our current state of affairs, in my opinion it was necessary to ask the questions in front of a rolling camera. The state of the stigma and neglect is unbelievable here in Canada. There is no federal strategy, there is 0$ for research funding with a 200,000$ just announced but there are chances there is no applicants on this, or like it happened last year, the reviewers reject an applicant because they believe that ME is all in the head.

    You also need to understand that the Canadian physicians turn towards the UK for physician training more than they turn to their neighbors of the south. In order to access off-label drugs in Canada, you need a special permission from the government. Doctors are being told they would be deemed responsible should they use off-label drugs not designated for the disease. There are no approved drugs for ME. - you will say that the US doesn't either- however the off-label practice south of the border if much more liberal- anti-virals, LDN, Immune modulators, for example, have all been used. Here in Canada, you'd be lucky to have a dr prescribe LDN.

    We desperately need a federal strategy and we desperately need the government to find out how we the patients are treated (well, how we are not treated).

    Each one of us in Canada paid into a socialized health care system, in which you are supposed to be covered for any disease you have. That is, except if you have ME, and a few other diseases (lyme, fibro, mast cell come to mind). This has to change.
     
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