taniaaust1
Senior Member
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- 13,054
- Location
- Sth Australia
I dont know what to do, I support my local ME/CFS society as I believe its the right thing to do but they keep publishing articles on their website which are working against ME/CFS advocacy and helping keep the false views on ME/CFS out there which is very harmful to those of us who have severe ME.
eg in yesterdays news published on it http://sacfs.asn.au/ 16th Sept "UK ME Sufferer Ryan To Set Off On Mission To Prove Doubters Wrong"
Ryan has managed his condition to the point he then goes and does marathons This article misleads that we can "manage our condition" by gradually building up exercise and things like this are just leading to those of us already suffering abuse due to the views out there already on our condition ending up getting more abuse cause people read this website.
If I go to a new dr or get a new home support person or whatever and that person is after ME/CFS info, he can end up on their website and then guess who is told to try harder and gets treated shockingly (its things like this which are making me currently look into getting to the Switzerland clinic for assisted suicide, Im feeling like there is no hope of change for how Im being treated in the near future)
Im already suffering much harm from the wrong views professionals have out there which Im dealing with and this website is further inflaming things. I should not be having to stress out on our states ME/CFS website having negative impacts upon me due to what messages its sending to those who deal with me.
I have DisabilitySA and their physio ignoring how badly Im affected by ME (the physio wont even give approval so I could have my kitchen modified so I could use my wheelchair there) and Im having to take them to court for discrimination due to their wrong beliefs on this illness and you are posting things like this for them to read. Its highly upsetting to me.
I beg that if anyone from the states ME/CFS society reads this to please, please, please stop putting stuff like this on our website which is doing the severe patient group in this state much harm. Seriously what hope have the very severe ME group got when this illness is downplayed time and time again on the website to the point people think we can exercise our way to good health.
Our states ME/CFS website should be a place where any severe ME patient can send people to for more understanding on their condition, not something to be feared that people may read and which may lead to further abuse or neglect
eg in yesterdays news published on it http://sacfs.asn.au/ 16th Sept "UK ME Sufferer Ryan To Set Off On Mission To Prove Doubters Wrong"
Since then however, Ryan has learned to manage his condition, and has dumbfounded people time and again by completing three half marathons, a triathlon, and the Three Peaks trek over the last few years.
He said: ”At the start of my journey to recovery, I could only manage a 150-metre walk to the shops on my road.
“Gradually, I built this up and eventually started running after long months of slowly adding small amounts of distance.
“I would never have thought this would be possible 13 years ago.”
ME, or chronic fatigue syndrome, is a disabling disorder that affects around 250,000 people in the UK by causing severe and debilitating tiredness, painful muscles, and disordered sleep.
Ryan will look to defy the odds once again by completing the Brutal Extreme Triathlon, which consists of a 2.4 mile swim in a cold lake, a 116-mile bike ride, a 16-mile trail run, and a 10-mile ascent and descent of Mount Snowdon.
Ryan has managed his condition to the point he then goes and does marathons This article misleads that we can "manage our condition" by gradually building up exercise and things like this are just leading to those of us already suffering abuse due to the views out there already on our condition ending up getting more abuse cause people read this website.
If I go to a new dr or get a new home support person or whatever and that person is after ME/CFS info, he can end up on their website and then guess who is told to try harder and gets treated shockingly (its things like this which are making me currently look into getting to the Switzerland clinic for assisted suicide, Im feeling like there is no hope of change for how Im being treated in the near future)
Im already suffering much harm from the wrong views professionals have out there which Im dealing with and this website is further inflaming things. I should not be having to stress out on our states ME/CFS website having negative impacts upon me due to what messages its sending to those who deal with me.
I have DisabilitySA and their physio ignoring how badly Im affected by ME (the physio wont even give approval so I could have my kitchen modified so I could use my wheelchair there) and Im having to take them to court for discrimination due to their wrong beliefs on this illness and you are posting things like this for them to read. Its highly upsetting to me.
I beg that if anyone from the states ME/CFS society reads this to please, please, please stop putting stuff like this on our website which is doing the severe patient group in this state much harm. Seriously what hope have the very severe ME group got when this illness is downplayed time and time again on the website to the point people think we can exercise our way to good health.
Our states ME/CFS website should be a place where any severe ME patient can send people to for more understanding on their condition, not something to be feared that people may read and which may lead to further abuse or neglect
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