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'Getting By With “Bugger All”: The Invisible Suffering Of Australians with CSF'

Discussion in 'General ME/CFS News' started by aimossy, Feb 27, 2016.

  1. aimossy

    aimossy Senior Member

    Bob, Scarecrow, taniaaust1 and 3 others like this.
  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    could someone please .. cut and paste my response to that article for me? I don't do facebook but would really like to get a response onto it. It's a great article.

    Here's what I'd like to say there.

    The lack of formal training being given to doctors on severe ME/CFS has major repercussions on some of us. In my case it means I cant get the home help I NEED, I'm living in a house right now with vomit and faeces all over the floors which has been there for at least 10 weeks now, my floors often only get done every 4-5 months.. esp shocking seeing I cant always walk so at times are crawling on them. So its causing some of us to be forced into squalor. Due to no dusting either, my house gives me asthma attacks

    To try to get away from this distressing situation, Ive actually twice chosen to go to jail, last time I stayed there for 10 weeks refusing bail. Within days of getting out (I agreed to accept a bail agreement only after I was state the disability services in my state would me more help) I was very sick with diarrhea, it was through my bed and everything as my house being so bad is making me sicker. Its unhygienic as I'm not well enough to clean it

    I need to go back to court on Tuesday but without a suitable support worker, I cant get there and the judge has said if I don't attend I will be jailed.. he refused to allow me a phone hearing when I'm basically housebound and sometimes bedbound. (I can never leave my house alone and when I go shopping it takes two people to take me, one to push the wheelchair and one to push the trolley).

    I wouldn't even be able to get to court this Tuesday even if I did have a suitable carer to take me and take care of me if needed.. as its going to be too hot for me to be outside. I've ended up in hospital many a time to be put onto a drip due to going out when its too warm for me, it causes me to collapse and can cause me to go actually unconscious. I cant get a medical certificate for the court as I cant get to doctors and the National home doctors aren't allowed to write letters for court (its against their policy).

    The state disability service (in Sth Australia) gives me the shopping support as I have Aspergers and due to that I get 5hrs support a week but says its against their policy to help those with ME/CFS. So they wont help me with a support worker to take me to medical appointments, due to this I cant even get to my specialists etc and I have medical conditions which need monitoring. Last dr I had was doing phone appointments with me but then stopped doing them as she said it was too dangerous cause I need to be monitored properly .

    My epi-pen has way expired and I cant get a new prescription as our National home dr service don't do them for epi-pens and just tell me I need to get back to my specialist which I'm incapable of getting back to or say I need to get a normal dr (none of them will come out unless I can get into see them first and I don't have a careworker to take me).

    I currently have a ongoing court case against my states disability service for bullying and discrimination over the ME/CFS but there is some clause in our law in which they are allowed to deny services no matter what the persons need so I probably cant win the discrimination case. I believe I now have PTSD from the bullying and insults Ive had from our disability service over being sick and now to the point in which I now fear being alone with them.

    Yours Sincerely
    Tanya Selth"
  3. Justin30

    Justin30 Senior Member

    I dont know what to say......

    This is another example of human rights being violated.......

    Look what PACE trial did to us. I know Coynes pissed at us but if our ME organizations arent fighting it because they are run by.sick people then someone healthy needs to be fighting this!!!!!
    helen1 and Mel9 like this.
  4. Bob


    England (south coast)
    I've only just read this article, and I think it's exceptionally well-informed and well-written.
    Mel9 likes this.

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