The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Millions Missing for ME Canada: developing persistent & consistent campaign

Discussion in 'Millions Missing Campaign' started by ScottTriGuy, Jun 28, 2016.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Hello ME folks,

    An aide to one of the MPs targeted by the #MillionsMissing Canadian virtual campaign in May sent a message after the event:

    "I know from the Hill side that the campaign was effective. Many staff people mentioned it to me last week. Re: media, keep hammering them. It's really a game of persistence with them. The more you send them news releases, the more you attempt to contact them, the more likely it will be that they pick up on the story. It's frustrating, but it will bear fruit. I've seen other health/illness-related campaigns make media breakthroughs after many months of persistence."

    And that was with just a few weeks of preparation!

    Imagine what we can do with more time to organize and execute a consistent and persistent campaign plan targeting both Minister Philpott / politicians and the media. The squeaky wheel gets the grease.

    To build on the momentum created, a group of ME patients and carers are meeting via conference call in mid July to develop a consistent and persistent #MillionsMissing for ME Canada campaign plan.

    We are forming a Core Team with defined roles such as Public Relations Coordinator, Campaign Coordinators, Writer, Researcher, Social Media Coordinator, and Media Coordinator. Some roles or some aspects of some roles may by online only (so no skype or conference calls meetings). Of course, many hands make light work.

    If you want to see positive change for ME patients and are passionate about advocating for increasing access to ME healthcare and research in Canada, have skills or abilities to provide, and want to contribute to the growth of 'Millions Missing for ME Canada', then you may be a good fit for the Core Team.

    Let me know if you are interested in joining the conference call Sat July 16. (Or if you have any questions).

    Thanks,

    Scott
     
  2. Sasha

    Sasha Fine, thank you

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    That's terrific, @ScottTriGuy.

    Have you thought of using the video of Jen Brea's TED talk, when it's out? I think we should be spreading it all over the place.
     
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  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Great idea - I can easily see that being incorporated into our campaign.
     
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  4. Groggy Doggy

    Groggy Doggy Moved to S4ME.info

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  5. Comet

    Comet I'm Not Imaginary

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    So proud of you! :trophy:
     
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  7. panckage

    panckage Senior Member

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    I'm slowly writing a presentation to show my local MP. Basically it is copying meaction's material and @Kati's presentation :hug:

    I'm trying to focus on the $0.11 spent per CFS patient per year and contrasting it with the study that found CFS has worse QOL than MS and the other 20 chronic diseases compared to.
    And
    - treated like I'm faking it by medical professionals
    - how I have become a criminal because i import medicines for treatment since there are none approved here in Canada


    And for the future hope part how research is being done by CFS sufferers (Mark Vink) and family - how Whitney's father had to raise money on his own since governments are failing to do anything


    So to summarize:
    Because the government doesn't support us we are forced to fund raise to have any hope or research being done and how this has made me a criminal because this is the only way I can hope to get treatment
     
  8. Kati

    Kati Patient in training

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    That's great, @panckage, good luck with your presentation.

    The one comment I have for you is that not much fundraising is going on because patients are too sick and too poor. The significant funds that OMF has been able to raise comes from very few donors who gave very generous gifts.

    In fact the research has been further slowed by the paucity of the private donation for private research, forcing researchers to use small samples.

    Compare private donations for Cancer, HIV, MS and ALS and you will see that our disease is still at the bottom of the list for private donation.
     
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  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Great way to frame. I hadn't considered the 'healthcare system creates criminal patients' angle. Very Dallas Buyer's Club.
     
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  10. Old Bones

    Old Bones Senior Member

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    Although not directly associated with @ScottTriGuy 's new Millions Missing for ME Canada initiative, an email response to the original campaign, received today, is encouraging:

    "Dear Friend,

    Thank you for taking the time to write regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and the #MillionsMissing campaign.

    ME/CFS is a debilitating illness affecting hundreds of thousands of Canadians, their families, communities and caregivers. More must be done to promote research, improve the quality of care and provide appropriate financial support for those suffering from the disease.

    The #MillionsMissing campaign has done important work raising the profile of this illness and calling for concrete action. I want to congratulate the meaningful efforts of this campaign.

    ME/CFS patients continue to be misdiagnosed, in part, because of the absence of a biomarker to properly diagnose the illness. Yet, Canada has dedicated virtually no funding to research this illness. It is time for the Canadian government to invest more in research to find this biomarker and improve care.

    Many ME/CFS patients raise concerns about inadequate training for caregivers to support the needs of patients with ME/CFS. This can result in ME/CFS patients receiving inappropriate care – which can further aggravate the illness – or sometimes no care at all. The Canadians government should promote efforts to standardize and disseminate appropriate ME/CFS care practices to health care providers across the country.

    While government leadership lags, hundreds of thousands of Canadians are missing their lives as they suffer with this debilitating illness that has no cure. Far too many patients go without appropriate care and without appropriate financial support. This is an unacceptable situation, and it must be changed.

    As a New Democrat MP, I will continue to call for more support, more research funding and better care for ME/CFS patients and their families.

    Sincerely,

    Don Davies, MP

    Member of Parliament Vancouver Kingsway| Député Vancouver Kingsway
    Critic for Health |Porte-parole du NPD en matière de santé
    New Democratic Party | Nouveau Parti Démocratique"


     
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  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Another political ally (in addition to Elizabeth May of Green Party) - Don Davies is especially important as he's the NDP's Health Critic tasked with keeping Minister of Health Dr. Philpott accountable.
     
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  12. panckage

    panckage Senior Member

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    Hmm i wonder if there are any specific ways to get them to help us?
    Random brainstorming
    - private member bill (funding equity?)
    - attend our September rally? Maybe they could help with organizing due to our limitations?
    - utilize their publicity network... Maybe there is someway to ally on something?
    - it sounds like an emergency meeting was called on health/science funding http://www.cbc.ca/beta/news/health/health-minister-philpott-cihr-funding-scientists-1.3667090
    Maybe they could help put the word out for us there for a piece of the funding?


    Argue this part of the Canadian health act:

    In other words we pay for health care (through taxes) but we don't have access to treatments and the provinces have not shown good faith by investing in research either. Our group is not provided service (and according to their own numbers we are a large group 400,000+ so they can't play dumb about us)
     
    Last edited: Jul 6, 2016
  13. Kati

    Kati Patient in training

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    Hi @ScottTriGuy I think we need careful with the language. Dr Philpott has been in power for 9 months. THe situation of stigma and neglect has been happening for decades.

    I am not sure the best route is saying she is responsible, at this time. Her mandate as given in October or November, includes HIV, aboriginal health, and help for the thirld world for HIV and Ebola, if i am reminded well.

    We need to find a way to her, may it be via friends we made, Carolyn Bennett being one, perhaps via lobbying, perhaps via campaigns to our MP andI agree with what @panckage said on the post above.

    If she is able to meet with different health care groups, we should also be able to reach out to her and explain our situation.

    Our strategy and tone of voice at this time is crucial. Due to the lack of social support, an angry tone will not give us the support of the health minister or society.

    Following my meeting with my MP he strongly suggested that patients reach put to their MP. I agree. That is one step that should be encouraged.
     
    Last edited: Jul 6, 2016
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  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    @ScottTriGuy didn't sound angry to me. It sounded like he was suggesting that DD has been seen to be responsive to us and that might help with seeing Dr P remembers who we are and our needs. I may not be remembering but I can't think of any positive responses from Dr P to date.

    It is early days and she does have a lot on her plate.
     
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  15. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Good ideas - Elizabeth May championed the Lyme bill...it took something like 4 or 5 years - perhaps we can play off Philpott's emergency meeting to discuss CIHR processes as we can point to ME as egregious example of CIHR gone wrong (and CIHR 'pays' 18 health reporters...yet ME gets no coverage)

    I wonder if the CIHR Act is the way to go, http://laws.justice.gc.ca/eng/acts/c-18.1/page-1.html

    This is one example of their failure to ME patients; section 4:

    (f) addressing emerging health opportunities, threats and challenges and accelerating the discovery of cures and treatments and improvements to health care, prevention and wellness strategies;
     
    Last edited: Jul 7, 2016
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  16. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @Kati

    I hear you - it is a delicate dance of reaching out to collaborate - my meeting with policy advisor Kancir ended when he became flustered and embarassed ("This meeting is over") that he knew less about how the govt worked then Dr Bested - and he's been basically non-responsive since then in spite of knowing we are being harmed by the healthcare system.

    Last week I went to Minister Philpott's constituency office unannounced - yesterday I received an email from Min Philpott's assistant in part reads "I’ll be sure to pass this article along to our liaison at the Ministry of Health. I’ve also made them aware of your visit and the information about Louise that you dropped off." - so the door to meeting with ME patients is very much open from our side.

    "Responsible" for creating the ME crisis, Minister Philpott is not.

    Bur she is "accountable" as Minister of Health to address the ME crisis.

    As someone living with HIV and working in HIV research, there is no doubt that ME should be prioritized in her mandate over HIV. That is self evident.

    I concur, strategy and tone are important.
     
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  17. panckage

    panckage Senior Member

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    I know this sucks but the primary purpose of politicians is to get/stay elected. For this they need publicity. A politician isn't going to do anything just because someone comes to them with a good argument. A politician will do something if there is a vocal group that can make the issue big enough so that they can score political points on it. You are doing amazing work Scott and are an inspiration to me. But I think I agree with @Kati on this. We need to make this a big public issue before we think about turning negative

    In our democracy we only have power as loud vocal group. We aren't there yet. Making things negative at this point is more likely to hurt us I think. We don't want to burn possible allies before we have given them their side of the bargain

    Of course in your case the negativity is certainly warranted though
     
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  18. panckage

    panckage Senior Member

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    @ScottTriGuy for the legal angle I've been looking for law charities who might be able to say if we have a case or not... Unfortunately my googling hasn't found anything like that

    Anyone have any ideas for who we could consult? I guess if nothing else I could call the free dial a lawyer line and see if they know anyone who might handle potential federal health act violations... (is that the best way to describe it?) although it would be a provincial violations of the federal law as I understand it
     
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  19. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I've thought a class action lawsuit may be the way to go - a law firm can do it on a contingency fee basis - but I don't think all provinces have class action law (Ont does).

    Perhaps searching for health or disability specialists? Or a class action lawyer / firm?

    ETA: just remembered - last fall, before the election, I contacted the lawyer that did the Mernagh medical marijuana case (I knew him coz I contributed an affidavit) - he was interested but wanted time to wrap up other cases - then Philpott got appointed and I've been chasing that rabbit...so I will call him again.
     
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  20. Kati

    Kati Patient in training

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    We can make our voice louder and louder. More people going to their MP and making presentations, requesting action. Some pop up protests perhaps. Organized and simultaneous fax campaign to the health minister asking for response. Also requesting support of minister of science Kirsty Duncan.

    Thank you for your efforts @ScottTriGuy and everyone.
     
    Last edited: Jul 7, 2016
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