When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
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Things are heating up in Canada!

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

  1. Woolie

    Woolie Senior Member

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    Why is this any different, @Kati? To make this distinction buys into the idea that we are especially troubled about the psychological stigma for its own sake. We've tried for so long to explain that while these incorrect psychological models abound, really effective research isn't getting done. And that's what we are really concerned about. In my example, this was also the case.

    And the parity of the examples is neither here nor there. The point is about whether ministers should be asked science questions they're not qualified to answer and criticised with they decline to.

    I explained my view in lengthy detail because you asked me to. Even though I think my earlier post did it okay, and using in the number of words it was worthy of (a quick point to indicate that not everyone was of the same mind on your minister being at fault here). I guess I also thought it was worth pointing this out as general advocacy issue, but that's all. I was not interested in finding fault with the asker. Or questioning the importance or value of the campaign in any way. Let's not sidetrack this thread any further on this minor issue.
     
  2. Kati

    Kati Patient in training

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    I am especially troubled by the psychological stigma, because ME is not a psychological illness, and in 2017 wondering whether ME a psych illness, it delays research and precious time and energy into finding cause and treatments.

    In your case with MS I would welcome a tirade between EBV as a hit and run or EBV as perpetuating agent because such scientific argument would further the science more precisely.
     
    Last edited: Jan 19, 2017
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  3. TiredSam

    TiredSam The wise nematode hibernates

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    Why is she not qualified to answer it - she's the health minister.
     
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  4. Woolie

    Woolie Senior Member

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    Please see my posts above. You'll find your answer there.
     
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  5. TiredSam

    TiredSam The wise nematode hibernates

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    I appreciate that you have already written a lot on this (which I have just re-read) and agree that it's a minor point and we don't need to go round in circles about it. I just don't think that the MS / EBV analogy quite fits.

    Whether ME is biological or psychological isn't really a difficult scientific question, or if it is, only in the same sense that asking whether the earth is round or flat is a scientific question. The only reason a health minister would not know the answer to such an easy question is because their department is continuing to ignore evidence which is under the nose of anyone who cares to look, and a health minister should care to look when a sizeable proportion of her voters and taxpayers have suffered 30 years of shocking neglect and abuse.

    Given the scale of human suffering involved she should look with a sense of urgency and give it her top priority (easy to forget when it's been neglected for years, but just because people have lost half their lives to this doesn't mean that one day more is acceptable). If she isn't ready for an easy question yet about something that falls within her area of responsibility, then she should be.

    The false BPS claim that we are concerned about the stigma of mental health is best ignored. They'll carry on making it and indulging in all kinds of other labelling and name-calling anyway, it's just what they do.
     
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  6. Woolie

    Woolie Senior Member

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    @TriedSam, I wasn't going to respond, but something in your email hinted at a bigger advocacy issue that I thought was worth disucssing
    No, every time we implore people to state that MECFS is biological not psychological, we give the BPSers a gift. We confirm the "fear of psychological stigma" stereotype. We present ourselves as a crazies that will only listen for the answer we want to hear. We need to focus on arguing the evidence that supports a biological account, presenting the case for why we need more biomedical research, better treatments. And demonstrating the degree of suffering the illness causes. Ask what sort of funding will be allocated for MECFS, or what sort of research initiatives will be sought, or what supports will be provided for sick people. You can ask how the government intends to approach its health and research policy about a disease. But you can't ask them to make pronouncements on the state of science. They shouldn't do that, its not their place.

    I think you agree with most of this, @TiredSam, so I'm really not sure what the argument is.
     
    Last edited: Jan 19, 2017
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  7. Kati

    Kati Patient in training

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    This was just tweeted by our health minister :


    And all they can do for ME is a 200,000$ grant. (25 cents per patient)
     
  8. Tunguska

    Tunguska Senior Member

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    I'm more damaged than anyone I know, I see 0.00$ in government funds, medical system has been utterly useless (nevermind damaged me permanently), I manage to make a salary and pay taxes with no write-offs and where does it go - to the fricking psychology department with 5 billion dollars. Just pour the salt.
     
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  9. dangermouse

    dangermouse Senior Member

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  10. Old Bones

    Old Bones Senior Member

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    Yesterday, the National ME/FM Action Network faxed, emailed, and sent a letter to the Canadian Prime Minister, Justin Trudeau. The entire letter can be read here:

    https://www.facebook.com/MEFMActionNetwork/posts/1483836851636253

    Here are a few excerpts:

    "Imagine coming to work one day and catching a nasty virus that goes on for days, then weeks and then months. . . . You feel abandoned by the health system, by the social system, and even by family and friends."

    "That is the fate of many Canadians with Myalgic Encephalomyelits, often called Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia (FM). Many have been ill for over 30 years. Many were ill as children or teenagers and never had a normal childhood. Imagine how you would feel if this happened to your child."

    "The sad part of this story is that information has been available for physicians to diagnose and treat ME/CFS and FM since 2003. Our organization, the National ME/FM Action Network, a Canadian registered charity, worked with Health Canada and 24 experienced and renowned ME/CFS and FM experts chosen by their peers, from Canada and around the world to develop diagnostic and treatment protocols. The protocols have sparked international interest. Overviews have been translated into English, French, Spanish and Italian, with the ME/CFS overview available in German and Dutch as well. I received the Meritorious Service Award from the Canadian Governor General for my role in their development."

    "The problem is that the protocols have not been endorsed or publicized here in Canada. The only dissemination is what our Network could afford to send out. The Canadian government has made no effort to educate government departments dealing with health issues and has shown no leadership in encouraging their use or their inclusion in medical education. In fact, the Canadian government has been ambiguous whether it even thinks that ME/CFS and FM are real and serious."

    "Research funding is desperately needed. While we have an open dialogue with CIHR, funding is still abysmal. Canada is way behind other countries in the race to understand ME/CFS and FM, to find biomarkers, and to find effective treatments. Canada is not even in a position to follow developments in other countries and bring that knowledge to patients. We need dialogue with the Minister of Health on research and other issues but that dialogue is not happening. We are also encountering difficulties opening dialogue around disability issues."

    "Canadians with ME/CFS and FM are getting a raw deal that needs to be corrected. Mr. Trudeau, . . . "

    Sincerely,
    NATIONAL ME/FM ACTION NETWORK
    Lydia E. Neilson, MSM
    CEO, Founder

    I concur with Lydia's bolded statement. Despite requesting one, I have not received an acknowledgement or response from Health Minister Jane Philpott to my letter -- both faxed, and "snail mailed", almost a month ago. Perhaps it's time for me, also, to request direct action from Mr. Trudeau -- "because it's 2017!"
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    This is a bit of an offbeat statement to an approach. I wonder if bringing it to the attention of the PM's wife might have some effect?

    I know this is a political issue so ME/FM going to the PM and health minister is totally the right thing but someone interested could craft a more emotional appeal to SG/PMW with maybe Jen Brea's TED talk linked?
     
  12. Kati

    Kati Patient in training

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    Who is SG/PMW?
     
  13. Old Bones

    Old Bones Senior Member

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    @Kati I believe @Snowdrop was referring to Sophie Gregoire, Prime Minister's wife, in her comment. Her suggestion is a good one, and something I have considered.
     
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  14. Kati

    Kati Patient in training

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    Thx. I think it is best to avoid abbreviations because no one outside of Canada would know who she is. Heck this is the first time I see her abbreviation.

    I think that reaching out to the Prime Minister is a good strategy (and why not, his wife). The reason is he gave his health minister her mandate. And her mandate does not include us patients with ME. Today an announcement was made of a 5 billions investment for mental health. The investment for ME is under 200,000$.
     
    Last edited: Apr 8, 2017
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  15. concepcion

    concepcion Senior Member

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    The letter is really great.

    The question is how many great letters does the Prime Minister receive, and how does it get to the top of the pile?The PM will most likely repeat what he did with the emails that flooded his office last year through the Millions Missing Canada campaigns - he let the Minister of Health take the lead.

    A multi-level response is probably the way to go. Letters from individuals, advocates and organisations, along with organised community actions, and inside lobbying. The National ME/FM Action Network has been speaking with bureaucrats. Millions Missing Canada has also been dealing with Ottawa, and their update can be found here: Back to Ottawa: Measuring Success.

    Hopefully all these actions will lead to a strong push on the inside to get what we need from the government - the millions of dollars missing for Canadian research, and the Canadian Consensus Criteria in every doctor's diagnostic toolkit. Strategising, consistent campaigning, as well as collaboration between all our advocates and patient organisations will really up our game. This wretched illness robs people of the one thing strong campaigns need - energy. Working together can help us maximise our efforts.

    Given the tidal wave of research that is coming out, along with Jennifer Brea's amazing TED Talk and feature documentary "Unrest", the rise of the Millions Missing international movement, and all the press that the fraudulent PACE study is now receiving, we are at a turning point for ME. We now have a seat at the table. It's not a matter of IF we can get what our community needs, but WHEN.
     
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  16. Daffodil

    Daffodil Senior Member

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    things are awful for sure...but I got disability benefits right away when I applied in Ontario, even though my doctor said there was NO way I would get it.
     
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  17. meadowlark

    meadowlark Senior Member

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    I'm glad to read this. I'm in Ontario, and had to fight the bureaucracy for two and a half years, appealing every denial. I was finally scheduled to go to tribunal to stare the government down when, out of the blue, I got a letter granting disability. The reason? The backlog of unfinished cases was so huge that a few months of them were pushed over the dam, no questions asked. So, in the end, I benefitted from the inefficiency and stupidity of the system. If my tribunal date had not been cancelled, I am absolutely convinced they would have turned me down flat. (P.S. This happened about eight years ago.)
     
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  18. Daffodil

    Daffodil Senior Member

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    wow. I'm so glad you got it. I really wrote a hell of a long letter about my 13 yr experience with the disease (over 23 years now), all the tests, out of country doctor visits and diagnosis etc...and how many years I tried to work part time with the CFS. but in the end I wonder if I didn't get it cuz my doctor also said I had bipolar disorder lol
     
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  19. Old Bones

    Old Bones Senior Member

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    Canadians, mark your listening calendars!

    "CBC RADIO interview with JENNIFER BREA & LYDIA NEILSON

    FRIDAY, APRIL 20, 2017 CBC Radio – The Current

    JENNIFER BREA and her documentary “Unrest” are touring Canada and on Friday, she was interviewed by CBC Radio in New York. As Jennifer was interviewed first, I was able to listen to the interview while waiting to be interviewed in the Ottawa CBC Radio Station.

    Jennifer is very impressive when she relates her experiences with ME/CFS and the way she explains it, anyone listening will get a very good idea what’s like to have ME/CFS. This program will be edited before it airs.

    I know there will be a time restraint so don’t know how much will be kept in of Jennifer's interview but no matter what the length, Jennifer did a great job and makes an excellent spokesperson for the cause.

    LYDIA NEILSON: This interview was more about what it is like to have ME/CFS which Jennifer took care of and therefore don’t know how much of my part of the interview will actually be aired. However, we had sent a copy of our letter to the Prime Minister to CBC Radio – The Current as some of the questions asked were answered in our letter to the PM

    The interviewer wanted to know if we had received a reply. When responding in the negative, she asked what we thought of that and what that meant to us. I gave the Prime Minister a little bit of an out by stating that at this early date we are not sure he has had a chance to see the letter. I’m hoping that if this is kept in the final version for airing that our letter will get a bit of a nudge and one way or another the PM will hear about our letter.

    Will let you know more details as they become available.

    Lydia"

    Text of email received today from the National ME/FM Action Network.

    https://www.mefmaction.com/
     
  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    For me this is really exciting news that this is an interview with such a heavy hitter as Anna Maria Tremonti.
     

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