Cfs story on abc 24- Aussie TV

[knackers323]

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

 

[taniaaust1]

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

 

[alex3619]

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

 

[RustyJ]

@knackers323 Would this be it: http://www.abc.net.au/news/2014-05-...opeful-of-chronic-fatigue/5459154?section=qld

Not a bad report. I was shocked at the state of the first woman. I know they have given her a diagnosis of cfs, but it is not the same illness I have, or not the same level of illness at least. Very troubling if it is the same illness. What makes it worse in her?

 

[alex3619]

There is also an ABC radio report on CBT, which wont play for me. However it appears to be pro-CBT.

http://www.abc.net.au/radionational/programs/lifematters/web-based-therapy-for-cfs/3865870

 

[knackers323]

@knackers323 Would this be it: http://www.abc.net.au/news/2014-05-...opeful-of-chronic-fatigue/5459154?section=qld

Not a bad report. I was shocked at the state of the first woman. I know they have given her a diagnosis of cfs, but it is not the same illness I have, or not the same level of illness at least. Very troubling if it is the same illness. What makes it worse in her?

Yes that is the same one

 

[end]

All of her joints seem to be greatly affected

 

[rosie26]

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

 

[taniaaust1]

There is also an ABC radio report on CBT, which wont play for me. However it appears to be pro-CBT.

http://www.abc.net.au/radionational/programs/lifematters/web-based-therapy-for-cfs/3865870

***sighs***

 

[taniaaust1]

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

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.

 

[end]

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

I could not watch the whole thing. Too sad

 

[rosie26]

@taniaaust1 @end I could not watch it all either - it is distressing to see.

 

[minkeygirl]

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.

 

[k-AUS]

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

 

[minkeygirl]

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.

 

[RustyJ]

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

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.

 

[rosie26]

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

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.