Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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"ME/CFS: Discrimination Within Social Institutions"

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Nov 8, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    [Abstract from the IACFS/ME 2016 Conference]

     
    TiredSam, Wildcat, J.G and 10 others like this.
  2. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Wow, how about that:
    This is interesting too:
    On the down side, I wish they had defined discrimination more tightly. Some of the sources of negative discrimination listed in the Discussion are failures to provide positive discrimination, such as adequate accommodations (e.g., putting patients in noisy, smelly physical environments, without properly tailored furniture, giving them unhelpful time frames, no remote access). These issues are equally important, and I know in the end that they all lead to MECFS people getting unfair treatment. But conceptually, they're different, and they may require different kinds of interventions.
     
    dyfalbarhau likes this.
  3. taniaaust1

    taniaaust1

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    Sth Australia
    Great to see this being put out, I wanted to join this study but was too sick to be able to have done so.

    I wonder if this will help support my current court case that Im being majorly discriminated against here. I've been discriminated against by so many of our government depts and places.... drs, hopsitals, centrelink, the court, the state disability service etc.

    Me complaining about so many places having discriminated against me sounds unbelievable.... so that probably impacts things now too as it makes me look like just someone who is probably complaining for no reason at all when Ive had very major discrimination and abusive situations done against me.

    Ive even been physically abused by them eg when I was in jail and collapsed a guard wouldnt believe me that I was disabled and sick and he stepped on my head with a boot, grinding his boot into my head to try to make me get up, really hurting me but I couldnt get up.

    Jail, taking away my wheelchair and expecting me to walk when I couldnt and refusing me things cause I couldnt walk far enough. Jail dr told me CFS wasnt real, and he wouldnt allow me to have my normal treatments in fact I was completely denied many of them eg I couldnt even get headache pills when I needed them

    in jail was left badly constipated till I was having to pick poop out of my arse as I couldnt go (note jail have cameras on you too while toileting so you could imagine how appalling this was to be constipated to that degree and having to do that with a camera on one)... so left in worst state while there.

    and then Centrelink abuse, refusal to accept my sickness certificates when I was on the dole while trying to appeal disability pension knockbacks and then they told me I'd be cut off completely if I didnt get to my part time work... this forced me to drive when I knew I wasnt safe which caused me to fall asleep at the wheel and hit another car.

    Hospital, breaches of state MCS policy and forcing me to wait outside in the cold in my wheelchair even when inappropriately dressed (after taken there by ambulance) and leaving me crying and shivering out in the cold.

    Told me I'd have to wait with my MCS in the public waiting room where I was unable to wait without collapsing..and then this causing me to be found collapsed on hospital floor as they had forced me on another occassion to wait there.

    I was unable to take Centrelink to court for blackmail forcing me to have to drive a car when too sick and then smashing up too cars due to it cause I wasnt well enough at time to take them to court and by the time I able to start to try to follow up some legal discrimination action, I was told it was too late. (time lines dont cater for us, we can be too sick for years and years to try to take any court actions and unfortunately there seems to be no allowance for our condition)

    and the list go on.. major abuses. This is how you get treated here in Australia with this illness and from my experience having a wheelchair doesnt mean they are going to treat you better.

    I use one whenever i leave my home and cant do much at all at home but they wont give me appropriate home support or even care support when I need it as ME/CFS isnt covered by state disability and has not also been included in the new National disability scheme currently being rolled out throughout Australia. Our ME/CFS societies over here are fighting to have it included as a proper disability.

    One cant get legal aid here if its against the government. Believe me I tried and many of the Aussie legal advice places are funded by our government and arent allowed to give advice to you if you want to do a case against the government. (so you cant not just get a lawyer but you also cant easily get legal advice either)

    Im now got aid though a special clause on the grounds that winning my court case would be of public interest and helpful to others too so on that ground I can get legal advise and a wee bit of legal help..

    Im getting aid through the equal opportunity commission but they can only put my particulars together (as I was screwing up the court particulars so putting the judge in a difficult position as judges arent supposed to advise) and I still are being forced into representing myself (phone hearings).

    Well lets hope I will be one of the first here then. Im trying but I still dont know if I'll be able to follow through and win just due to my health being so bad so dealing with a discrimination court case is very hard. My case goes back to court sometime this month (Im going to phone my lawyer tomorrow to find out where its at).

    Since last year, I no longer answer my phone to those I do not know due to the abuse Ive had from having ME/CFS, abused over the phone by someone working for a disability support agency (this abuse made me try to kill myself and end up in the ICU for nearly a week). So I now no longer answer my phone to any strangers or ones I know who may abuse me to protect myself.

    My phone is now a trigger of the feelings and memories of that abuse. I feel a lot of fear now whenever I have to deal with new people over my disability. Im sure I now got PTSD over the being abused here in Australia by government agency people etc
     
    Last edited: Nov 8, 2016

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