The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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My meeting with The Minister for Health, Simon Harris, TD

Discussion in 'Action Alerts and Advocacy' started by BurnA, Nov 12, 2016.

  1. TiredSam

    TiredSam The wise nematode hibernates

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    Excellent job, well done :thumbsup:.

    cough *voters* cough ;).

    First politician to pull their finger out gets 10,000 votes. Don't care which party they're from, they can have them all with my blessing.
     
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  2. OverTheHills

    OverTheHills

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    @BurnA

    Great work. Any update yet?
     
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  3. Barry53

    Barry53 Senior Member

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    Oh @TiredSam ... such a cynic! :)
     
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  4. Jan

    Jan Senior Member

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    How did I miss this?? Well done @BurnA you are a star!
     
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  5. mirshine

    mirshine Senior Member

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    I'm only seeing this now too! Well done @BurnA Has he given you any feedback on doctors' responses to him mentioning ME yet? Or is it too soon?
     
    dangermouse likes this.
  6. Noirin08

    Noirin08

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    Great stuff @BurnA and thanks.

    He's well aware of M.E. as I've been in touch with that ministry for a number of years about M.E. and have had emails from him and his predecessors - all circular, mind you, and almost word-for-word identical :-(
    Great to know that somebody actually managed to *speak with him.

    Did Minister Harris get back to you, seeing as it's well over 4 months?
     
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  7. Noirin08

    Noirin08

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    @BurnA Have you heard anything back from Minister Harris?
     
  8. BurnA

    BurnA Senior Member

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    Sorry, was waiting for an update before posting again, thanks for the interest, I will post here as soon as I have more news. I do have an appointment planned but no date confirmed yet due to his ever changing schedule.
     
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  9. Noirin08

    Noirin08

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    Thanks for update.

    Just to let you and others know that we're holding a #MillionsMissing demonstration outside of the Dáil on Thursday May 11th from 11am to 3pm in an effort to get our government to recognise the neglect of M.E. patients here and what's needed. It's part of the worldwide #MillionsMissing campaign.

    Would appreciate if people can let us know if you can come along. (Probably should have started a new thread for this, sorry. I'm new to participating here).
     
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  10. BurnA

    BurnA Senior Member

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    So i have an update of sorts.

    I didn't mention it before, but along with my meeting with the Minister, I also met with another TD in my constinuency. We agreed to write a letter to the minister calling for CBT and GET to be removed from the HSE website. I was basically following a two pronged approach because I knew meetings with the minister are hard to get and I don't like waiting!

    Today we got a reply which sated :


    Progess of sorts I would say.
     
    lemonworld, Cohen2, Izola and 22 others like this.
  11. JoanDublin

    JoanDublin Senior Member

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    That is bloody great news! The fact that they took it down is just brilliant. I cannot see them putting it back up as is. They will have to make some changes. Good timing for the demo on May 11th! In the meantime I am attaching an Info Pack just completed this morning which will be sent to all TDs today so if you want to send one to Stephen Donnelly feel absolutely free to do so! Well done
     

    Attached Files:

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  12. BurnA

    BurnA Senior Member

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    Thanks, yes I thought so too but didn't want to get too excited, the review could still be disappointing but it's certainly a step in the right direction.

    So if anyone is on twitter and would like to say thankyou to Stephen, his twitter handle is @DonnellyStephen

    If you're not on twitter but would like to say thanks his website is stephendonnelly.ie and contact info is on there.

    Even if you are not from Ireland, I am sure he would appreciate a thankyou from around the world.
    If politicians realise that their work is really appreciated it will help with future endeavours.

    BTW, I can't be sure that the Minister is actually aware of this news because the response letter came directly from HSE. However, the original letter from Stephen would have been addressed to the Minister, who presumably instructed HSE to reply directly.
     
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  13. JoanDublin

    JoanDublin Senior Member

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  14. mirshine

    mirshine Senior Member

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    Absolutely. It's fantastic to see someone making an effort on our behalf, and getting a result.

    Emailed my thanks.
     

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