Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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SBS Australia documentary on ME

Discussion in 'General ME/CFS News' started by AndyPandy, Mar 12, 2018.

  1. AndyPandy

    AndyPandy Making the most of it

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    Emerge has just posted this on FB.

    "SBS is looking for people to go on camera who are severely affected with ME/CFS and have had difficulties with the NDIS. The Feed, a daily news and current affairs program on SBS Viceland, is making a 10-15 documentary about the latest research around ME/CFS and will feature stories of people with ME/CFS who have faced challenges getting the support they need, particularly in relation to accessing the NDIS. Please contact us if you'd like to be on camera."

    This is an important opportunity to be heard in Australia. Please contact Emerge if you are interested in participating.
     
    Molly98, panckage, JayneM and 7 others like this.
  2. AndyPandy

    AndyPandy Making the most of it

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  3. AndyPandy

    AndyPandy Making the most of it

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  4. taniaaust1

    taniaaust1 Senior Member

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    yes certainly thanks for the tag. I just came here to write in my journal as im now about to get into trouble as I dont know how im going to vote in the compulsary SA election coming up (ive been fined before when I couldnt get to vote). .. I only found out there is that election coming up today and dont know how to get the postal voting forms i need to get to me in time and then back in in time.

    Ive been phoning about trying to sort this out with no luck.. and being sent in circles between a website and their phone numbers with me unable to even get a real person the phone. https://www.ecsa.sa.gov.au/voting/voting-at-the-state-election/postal-voting and how am I meant to follow these instructions :( im going to be in a shit again

    "
    here are three ways you can get an application:

    Option 1: Download the application below and follow the steps (you will need access to a printer).

    Option 2: Pick one up at Australia Post outlets.

    Option 3: Phone us on 1300 655 232 and we will post or email an application to you."

    well my i dont have a working printer currently.. so option one is out. I cant get to the post office.. my shopping support was yesterday and I didnt know about this then, and I dont get support again till next week.. option 3.. no help either.. it tells me to look at their website im getting this info for and tells me "its too late to enrol".. they do not even have a phone number for me to speak to a REAL PERSON and not recorded message.

    So naughty naughty me.. Im going to in breach of our compulsary election rules of must vote.

    this suck im always in trouble due to my disability and lack of support for ME. I'll try to contact EMERGE
     
    AndyPandy likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    done.. ive put my name down on EMERGE list of people who would be interested in being interviewed about this... Thou Im currently on the NDIS "waiting list" (and have been told its a "long one" even thou i said i needed urgent ME support due to failure of the other services). I havent had my assessment via them yet to know how that will go.

    So dont know what the outcome of the NDIS will be for me at this point.. I can certainly share thou about the discrimination of getting government disability services and how government services ignore ME/CFS.

    They'd be quite welcome to come out and film the state of my home to due to lack of services thou it would be highly embarrassing.. my floors havent been done since I agreed to leave prison last time (where i was staying to keep out of the mess of my home) umm 5mths now? and still gear everywhere from house move 4 years ago due to lack of support to help me sort things out. Its squallor here right now
     
    Last edited: Mar 13, 2018
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  6. AndyPandy

    AndyPandy Making the most of it

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    @taniaaust

    I might be able to help sort something out with the postal voting. I will PM you.
     
  7. panckage

    panckage Senior Member

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    Interesting that VICE is picking up a story about ME. We will become mainstream soon I can feel it :nerd:
     

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