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Congressman Jack Bergman becomes Champion for ME

Discussion in 'Advocacy Projects and Campaigns' started by rvallee, Jun 14, 2019.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    https://www.meaction.net/2019/06/14/congressman-jack-bergman-becomes-champion-for-me/

    Always good to thank those fighting for us. They are rare and appreciation always leads to more advocacy.
     
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    I sent this, in case it inspires anyone:
     
  3. duncan

    duncan Senior Member (Voting Rights)

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    I am a Democrat, so it pains me to observe that Republicans seem to step up with orphaned diseases. The same can be said with Lyme, where a leading Congressional advocate/champion is Republican named Chris Smith.

    Edit to add: Although Blumenthal is a Democrat, and he hauled the IDSA into court over its 2006 Lyme Guidelines. :)

    So maybe there is more of a cosmic balance to the political medical thing than I thought...
     
    Last edited: Jun 14, 2019
  4. Barry

    Barry Senior Member (Voting Rights)

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    I just emailed this ...
     
  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    I have emailed also -

    Dear Congressman Bergen


    I’m writing to thank you for your support for those with ME/CFS. As you will know this is a worldwide issue, and the US has taken a lead in its recent assessment of GET as being an ineffective treatment option for ME/CFS. Whilst we are not in the US, we hope that this decisive stance will be replicated elsewhere.


    My daughter, now nearly 18, has had this illness since an episode of glandular fever aged 15. Once a straight A student with every option open to her, she now struggles to be out of bed for a few hours, or to read the books she once loved.

    Life has been stolen from her, and unlike other conditions, her doctors have little knowledge of the condition: she has no treatment pathway, little medical support, and little understanding of her condition. Prognosis is better for teenagers and we hope that recovery/ improvement is possible for her.

    She has no wish to be dependent on us, and yearns for the opportunity to achieve her hopes and dreams as any young person would.

    We count ourselves fortunate as we have not been forced into inappropriate treatment, not had the threat of our child being removed ,nor been threatened with psychiatric treatment for a physical illness.


    Hopefully, advocacy such as yours can help turn the tide on this devastating illness.


    Many thanks for your support
     
  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you @rvallee for posting this, and thank you to all who have written to Congressman Bergman.

    As with MP, Carol Monaghan, and Senator Marky, pwME world-wide are expressing their thanks to Congressman Bergman.

    I hope more politicians will join this group soon.
     
  7. Alvin

    Alvin Senior Member (Voting Rights)

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    Don't overthink this.
    The right is hostile to healthcare. A few "bad apples" is great when they break from orthodoxy and go to bat for us but until McConnell puts a bill to vote with say $500 million for ME research and it passes the right is not on our side.
    That said perhaps the idea here is to approach right wing candidates because if they get on board the left will as well. Its a good bet if you were to speak with left wing heavyweights like AOC or Ted Lieu or Sanders or many others they would be happy to vote for a bill for medical research on such a devastating disease.
     
    DokaGirl, duncan and Sean like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    I'm a bit hopeful that the economic loss argument would have sway with conservatives. The losses truly are staggering and a strong component of conservatism, at least in ideas if not necessary in implementation, is self-reliance and it's a genuine waste to have raised so many well-educated people only to have us become a "drain" on society.

    So far support for ME seems to be about divided between Rs and Ds and I think that's one of the reasons. McCain was one of the early promoters and Collins was a co-sponsor. You can always get conservatives on board with money being left on the table and here we're talking about billions annually.

    Sometimes the arguments that work aren't necessarily the moral ones but if they do work then it's all the same for us. Let's just say that, so far, the moral argument has been a pretty total failure since it can always be chalked down to stubborn refusal to pull ourselves together, or whatever it is people tell themselves to justify leaving us to die.
     
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  9. duncan

    duncan Senior Member (Voting Rights)

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    I was being silly. Sadly, I agree.
     
    DokaGirl likes this.
  10. Hutan

    Hutan Moderator Staff Member

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    A reminder:
    Thanks for complying with the rule so the conversation is constructive.
     
  11. Alvin

    Alvin Senior Member (Voting Rights)

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    Since i am not permitted to reply i will just say its not this simple. Would be nice if it were.
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    Just had a short but very encouraging reply:
     
  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    Yes.
    I had the same reply today too
     
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