Discussion in 'General ME/CFS Discussion' started by Kenny Banya, Jun 6, 2017.
Certainly things have progressed but before everyone gets too excited, these are Professor Kelso's words,"
.... First of all, I think that until we work out the scope of the targeted call for research, if there is to be one, it is hard to answer the question of whether any possible guidelines.....
'The months not years' is referring to the decision of whether they will decide to give a Targeted Call for Research to ME/CFS, not when.
So the gov. Australian institute of Health and Welfare completely ignored ME/CFS when it studied nearly 200 different diseases looking at burden impact.. oh why doesnt this at all surprise me as they have always treated this disease as invisible here in Australia... far more invisible then even the english treat their ME/CFS patients.
I wont think at all that things have progressed here UNTIL ME/CFS is recognised properly as a disability in Australia and we qualify as a disability for support services in our country. This wont happen until we are included in the NDIS (national disability insurance scheme) which then would allow us to get services from disability services rather then be ignored no matter how sick a person is.
Thank you to EMERGE and our state societies who are working very hard to help change things here.
If anyone knows of anyone who may be able help me with a current legal case against the government.. please pm me. I have a ton of court stuff Im dealing with against gov depts over ME/CFS discrimation and cant even understand their court response due to my brain going to spaghetti on reading it... and really needing help if Im to win the case
It goes back to court in the morning but Im going to have to adjourn my case as my brain cant understand the response). The case is as far as having all the court particulars properly into court (the only legal aid I could get) and having their crown soliticer back response.. I dont know how I will continue with this court case with not being able to understand things. We NEED to start winning some court cases so our government stops neglecting us.
Sounds promising. I hope they will consider including patients and patient's organisations when it comes to how these funds should be further distributed, as The Research Council of Norway did when they recently allocated money for ME-research
This is a terrific piece by the wonderful Sasha Nimmo. She is a powerful person fighting the good fight for ME in Australia!
Senator Scott Ludlam, who is doing great work for sufferers while other politicians sociopathically ignore & do nothing, just made the following statement on the video from 30th May on his Facebook page (no surprise he's a lefty):
A video of the meeting/announcement is now available:
You can also try a Google Site Search
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