Aussies - has anyone contacted their local MP about ME/CFS?

[Tulip]

If so what was their response?.

I have been prompted to do this by my rapidly declining health so I am going to do this sometime this week. My federal member for parliament is well known in the media Australia wide, so i'm hoping his high profile helps. I am planning on giving him a short personal story, then giving him biomedical evidence that this illness is very serious, studies have shown it is the worst chronic illness you can have, that it causes death and it is not what most doctors think it is.

I noticed that it was also mentioned in parliament on the 11th of may this year for awareness day and that is pretty much what the speaker said..

 

[alex3619]

Hi Tulip, I have done this once, by email. It was passed on to Nicola Roxon, who then ignored me. To get change, we need people in media and government to act. It might only take one to start the change - although unlikely to make a difference, not trying means a guarantee of no change. You might like to mention that research has been massively underfunded. In comparison with MS for example, one year of MS research is more than has ever been spent on us, for the last eighty years. Bye, Alex

 

[Tulip]

Hi Alex, That's disgusting! It must have been too hard for her to deal with. I plan on sending mine by snail mail as a bit of an info pack, hopefully that will help.

Isn't the $$$ going into research something only like $100,000 a year?. Be good to find out the actual amount.