taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
Hi all, Im really disliking what my states ME/CFS society.. SA ME/CFS society is doing (which is generally a fairly good society, there are some really nice people there who do really try to help others with this) but it's helping push what I see as being false views over ME/CFS by republishing crap at thier website. http://sacfs.asn.au/ (top article there right now is a UK one "UK model beats her demons to become a model and fashion designer)
"Ella ... fell ill last year with fibromyalgia and M.E. (chronic fatigue syndrome).
'It was disabling and I was bedbound for a few months and really struggled to work,' she said. 'These illnesses are often caused by trauma.'
She conquered her illness within six months by changing her lifestyle and adopting relaxation, meditation, arts and creativity. 'I suddenly became very creative and arty. It was then that I started sewing and designing clothes.'"
It makes me really upset to see the ME/CFS society which I support as a member doing this as it will only lead to drs etc I may direct to this website, filling thier heads up with more false ideas on my ME, making this website a very poor advocacy site for me and one Im not going to be able to use. (It isnt the first time Ive seen articles along this line there).
What hope is there for us when our own ME/CFS society are promoting this kind of stuff by republishing things like that? and that I have to join as a member such societies just in the hope they help push the seriousness of this illness to my local government (im feeling so dismal about it all right now).
This kind of crap articles there is helping to sabortage those of us who need this illness to be seen as a serious one as its causing us serious issues which are not fixable by simple lifestyle changes. I wish I was well enough to start up a pure ME support group in my country and state to which I didnt have to read crap articles which play down the illness I have like this one.
I worry about possibly dying as I cant get the help I need in Sth Australia (cant get to doctors or my specialists etc) why this (my) ME/cfs society, they play down things around the illness by publishing this. (I spent last night in hospital suicidal over my current situation with not being able to get the help I need with the ME and then read that.. that's not support for me).
"Ella ... fell ill last year with fibromyalgia and M.E. (chronic fatigue syndrome).
'It was disabling and I was bedbound for a few months and really struggled to work,' she said. 'These illnesses are often caused by trauma.'
She conquered her illness within six months by changing her lifestyle and adopting relaxation, meditation, arts and creativity. 'I suddenly became very creative and arty. It was then that I started sewing and designing clothes.'"
It makes me really upset to see the ME/CFS society which I support as a member doing this as it will only lead to drs etc I may direct to this website, filling thier heads up with more false ideas on my ME, making this website a very poor advocacy site for me and one Im not going to be able to use. (It isnt the first time Ive seen articles along this line there).
What hope is there for us when our own ME/CFS society are promoting this kind of stuff by republishing things like that? and that I have to join as a member such societies just in the hope they help push the seriousness of this illness to my local government (im feeling so dismal about it all right now).
This kind of crap articles there is helping to sabortage those of us who need this illness to be seen as a serious one as its causing us serious issues which are not fixable by simple lifestyle changes. I wish I was well enough to start up a pure ME support group in my country and state to which I didnt have to read crap articles which play down the illness I have like this one.
I worry about possibly dying as I cant get the help I need in Sth Australia (cant get to doctors or my specialists etc) why this (my) ME/cfs society, they play down things around the illness by publishing this. (I spent last night in hospital suicidal over my current situation with not being able to get the help I need with the ME and then read that.. that's not support for me).
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