I’m planning to document and collate more of my advocacy on this site. Mostly so that others can use my words with a template to save them some energy (though my words are never perfect nor are they the only words you can use) and to remind myself on bad days (I’m having one right now as I type this) that I have done good things and do make what impact I can on the world. I have yet to unlearn fully that my worth isn’t tied to my ‘doing’ and I don’t know if I ever will unlearn that, to be honest. I’ll collect the links on one page eventually, but this post is a start for now.
We’ve just had an election in Australia. In the days before the election, one political party shared info and support for ME/CFS on their social media, so I wrote to them to thank them. The email is below:
Good afternoon Senator and team,
I want to thank you for your public support of ME/CFS recently. It means a great deal for anyone to speak up publicly for my community, and even more so during the final days of an election campaign where disability has been largely ignored. I know even some ME/CFS people overseas were grateful to see your support – it feels absurd to write this but you may be one of the few politicians globally who will support this condition.
I’m not sure if you are aware, but the RACGP recently wrote a submission to NHMRC (who are updating the ME/CFS guidelines) which I struggle to describe with kind words. The best I can say is that it is outdated and stigmatising. You can read it here.
As you can see, when highly influential bodies that dictate primary care have such an offensive view towards ME/CFS, we really need the public support of politicians and as many people as possible. I hope to see support from the Greens and yourself continue post election.
Kind regards,
Vanessa Smith
What a great plan and idea Vanessa!