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Cfs story on abc 24- Aussie TV

Discussion in 'General ME/CFS Discussion' started by knackers323, May 24, 2014.

  1. knackers323

    knackers323 Senior Member

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    I only caught the end of it. Did anyone see it this morning at about 7:30?
  2. taniaaust1

    taniaaust1 Senior Member

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    Sounds interesting. I would of still been asleep at that time.
  3. alex3619

    alex3619 Senior Member

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    Many shows are repeated. At that time it might have been a morning talk show. Why not email the ABC and ask?
    taniaaust1 likes this.
  4. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Last edited: May 25, 2014
    rosie26 likes this.
  5. alex3619

    alex3619 Senior Member

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  6. knackers323

    knackers323 Senior Member

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  7. end

    end Senior Member

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    All of her joints seem to be greatly affected
  8. rosie26

    rosie26 Senior Member

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    I was quite shocked at the way this lady was walking. I have not seen this level of severity before.
  9. taniaaust1

    taniaaust1 Senior Member

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    end likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    I havent seen it but I can get a lot of trouble walking at times with the ME, I dont think this is at all uncommon in ME. When my neurological symptoms are having a big flare Ive been like a MS patient with my walking.. eg foot drag (and my whole leg will drag behind me)

    I can also have great trouble coordinating my legs to walk (which usually when I'll like that will end up making me fall over), when Im like that I often cant even walk with two people holding me either side.

    I really hope one day I can get someone to film me during some bad crashes (while Im still able to walk, at times I cant even sit). I think the reality of severe ME needs to be out there far more, its rarely seen and it needs to be.

    I can also get spasticity during a bad crash. I'll see if I can borrow a video camera and get someone to film my next major crash episode. It would be very shocking, it would probably distress me watching it back.
    Last edited: Jun 7, 2014
    rosie26 likes this.
  11. end

    end Senior Member

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    I could not watch the whole thing. Too sad
    rosie26 likes this.
  12. rosie26

    rosie26 Senior Member

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    @taniaaust1 @end I could not watch it all either - it is distressing to see.
    Last edited: Jun 7, 2014
    end likes this.
  13. minkeygirl

    minkeygirl Senior Member

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    Wow, I have never seen anyone like this. Usually you see people collapsed in a bed unable to move. I'm really curious as to what is going on with her neurologically that is affecting her walking so severely.

    One thing I noticed is the narrator has referred to the disease as "chronic fatigue" throughout and not CFS. That bothers me in an otherwise good piece.
    rosie26 likes this.
  14. k-AUS

    k-AUS

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    The lady "Amity" has ME/CFS and lyme disease. This walking style is indicative of late stage neurological lyme disease. She chose to focus on the CFS/ME aspect of her illness to help gain more public awareness of ME. I'm part of a lyme group in Australia and Amity spoke openly about the need for more recognition of ME. It seems a little misleading by not mentioning the lyme, but if it brings more ME publicity then it achieved its purpose. It was a brave move by Amity :)
    Valentijn, end, rosie26 and 1 other person like this.
  15. minkeygirl

    minkeygirl Senior Member

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    I think it's more than a little misleading. All they needed was a disclaimer saying she also had Lyme's. By not telling it leaves her open to criticism from those who already think we are faking it.
  16. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Well that clears that up. If that is the case, then I applaud her efforts. This is one of the most sympathetic news items I have seen on a major network. I came away with a deep sense that her illness was very serious. The idea that there was fakery involved did not enter my head.

    My earlier disquiet was that I thought she might have received a misdiagnosis and may have needed to get a further opinion - this is a common issue with the me/cfs diagnosis.
    k-AUS and PennyIA like this.
  17. rosie26

    rosie26 Senior Member

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    Thanks for explaining. I thought there had to be more to it. Although in saying that - ME can throw up the unexpected but I had just not seen that kind of severity before.
    Last edited: Jun 7, 2014
    k-AUS likes this.

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