The State of ME/CFS & FM in our State (NSW)
October 15, 2017
ME/CFS & FM Association NSW
Not long ago I had the pleasure of being invited to join the NSW ME/CFS & FM Association committee meeting one Saturday and to find out a bit more in depth about what's happening in our state.
Now I knew very little about this group before rocking up. I've always wanted to get to their AGM and find out more. But have been prevented by the obvious health and distance factors. I had met members of the group through a couple of meet ups, and I had communicated online...but that was my extent.
I knew so little that I am not even a member of the association...which when I thought about there was no reason for not being one. I seriously had just not got around to doing it. Life gets that way!
This group is in it's early days (relatively speaking). But are already have big goals and are ready to be a voice for the so many in our state who are struggling day in, day out with these diseases. They are keen to focus on instilling education (in particular with medical professionals and students), investigating self-management courses for sufferers, and awareness, awareness, awareness.
To start with, why don't you take a moment to check out their website... MECFS & FM Association NSW What can you find on here...there are details on support group meetings across the state so that you can connect personally or online with those near by. You can find fact sheets to print out and leave not so subtly placed in the path of those around you. You can find articles and research. Hey, you can even find an article of mine on there! (They must have good taste!)
Connecting with others can also happen through the MECFS & FM Support Facebook Page which I have found super helpful for asking questions and sharing my past experiences and ideas with others. Sometimes I find the national and even worldwide web of information overload so confronting, and so it is nice to be able to connect on people with a local focus. To be able to chat through the ins and outs of living with these diseases here in NSW.
Somedays, I wish people could take just a small glimpse into my life with this disease. They may see me up and about, but that is often masking the depth of the pain, and the implications of living for years with a disease without a cure. I don't know about you, but I want to further the advocacy of FM & ME/CFS in my state and Australia and the world! I want people to be aware. I want to be able to advocate (as much as I can) for all those battling alongside me. So this is where connecting with a local association such as these guys makes us all a little stronger in this battle.
Be warned, bring your tissues. This one will get you. And so it should. There is nothing about this disease which shouldn't. Go check out the movie trailer. Unrest Trailer. Have a watch. I could write bits (actually lots) about this...but the trailer says it better. Go check it out. Now.
If you are free and able to get to The Entertainment Quarter this Saturday, or the following Monday evening, tickets can be purchased here.
You may have even seen the producer/creator Jen Brea's TED talk not long ago...I highly recommend it.
Coming up with the Association is the AGM...you may want to put in your diary
Coming up with the Association is the AGM...you may want to put in your diary
The ME/CFS & FM Association NSW Inc. Annual General Meeting (AGM)
Details: TBA (please ignore the date I previously put...brain fog moment!)
In the process of writing this piece, I went online and completed my application to join the Association... that simple! $5 joining fee and $5 yearly membership. Seeing as I compare my finances to coffee...2 coffees is all it will cost you!
If you have ME/CFS or FM, or know someone who does (I am presuming you do if you are reading this!)...I encourage you to get involved. As simple as joining the conversation, and knowing what is going on in NSW.
Thank you to the committee members for what you are doing to raise awareness, support and education! Because really, think about how tricky it is to rustle up a committee for your school fete, or a local organisation that is filled with hundreds of healthy people...and how many people complain about doing that. Now think of the extra extent that a committee needs to go to when chronic illness is at the core. Yep. My hat goes off to you. So, a big thank you to the association committee members!!!
Have a look. Get involved. Join. Read. Watch. Have your say. Join the advocacy. Be supported. Connect with those who get it.
Hopefully, see you all at Unrest!
If you have ME/CFS or FM, or know someone who does (I am presuming you do if you are reading this!)...I encourage you to get involved. As simple as joining the conversation, and knowing what is going on in NSW.
Thank you to the committee members for what you are doing to raise awareness, support and education! Because really, think about how tricky it is to rustle up a committee for your school fete, or a local organisation that is filled with hundreds of healthy people...and how many people complain about doing that. Now think of the extra extent that a committee needs to go to when chronic illness is at the core. Yep. My hat goes off to you. So, a big thank you to the association committee members!!!
Have a look. Get involved. Join. Read. Watch. Have your say. Join the advocacy. Be supported. Connect with those who get it.
Hopefully, see you all at Unrest!
0 comments