ME/ CFS South Australia Inc

22/08/2025

𝐏𝐋𝐄𝐀𝐒𝐄 𝐍𝐎𝐓𝐄 𝐓𝐇𝐀𝐓 𝐓𝐎𝐌𝐎𝐑𝐑𝐎𝐖'𝐒 𝐒𝐄𝐌𝐈𝐍𝐀𝐑 𝐁𝐄𝐆𝐈𝐍𝐒 𝐀𝐓 𝟐.𝟑𝟎𝐏𝐌!!

We apologise for any misunderstanding around the start time.

To attend you must be a Member (a whole $5!) so if you aren't already, join now at https://43660467.hs-sites.com/membership-sign-up

15/08/2025

EDIT: Please note that the start time is now 2.30pm!

A reminder about our upcoming Seminar:

To attend you must be a Member (a whole $5!) so if you aren't already, join now at https://43660467.hs-sites.com/membership-sign-up

is holding an online Seminar on 23rd August at 2.30pm, by Savita Sandhu.

Savita is a patient-turned-practitioner who is passionate about bringing ease and clarity to the nutrition journey of those living with invisible illnesses.

She has a particular interest in Ehlers Danlos Syndromes and co-existing conditions like POTS, MCAS, and abdominal vascular compressions due to lived experience of these.

For more information - https://mecfssa.org.au/event/seminar-mcas-and-me-with-savita-sandhu

This seminar is for members of ME/CFS SA only. Annual membership is only $5, and you can join here - https://mecfssa.org.au/get-involved/membership

08/08/2025

Severe ME Awareness Day is held every year on August 8th.

Twenty-five percent of people with ME/CFS have severe or very severe ME, meaning they are almost completely housebound, permanently housebound or bedbound.

Today we acknowledge those in our ME/CFS community who are rarely or never seen by others, as patients or as dedicated carers.

07/08/2025

NEW national website! https://mecfs.org.au/
ME/CFS Australia is the peak body for patient-led ME/CFS charities in Australia.
As a member, ME/CFS South Australia has contributed to the production of this website, together with the other member organisations. Take a look and let us know what you think!

ME/CFS Australia is excited to announce the launch of our new website!

Designed and written by people with ME/CFS, checked and edited by medical experts.

Take a look… let us know what you think. 😊

www.mecfs.org.au

31/07/2025

is holding an online Seminar on 23rd August at 2.30pm, by Savita Sandhu.

Savita is a patient-turned-practitioner who is passionate about bringing ease and clarity to the nutrition journey of those living with invisible illnesses.

She has a particular interest in Ehlers Danlos Syndromes and co-existing conditions like POTS, MCAS, and abdominal vascular compressions due to lived experience of these.

For more information - https://mecfssa.org.au/event/seminar-mcas-and-me-with-savita-sandhu

This seminar is for members of ME/CFS SA only. Annual membership is only $5, and you can join here - https://mecfssa.org.au/get-involved/membership

17/07/2025

New peer-reviewed article released yesterday! The Flinders University Frail, Homebound and Bed-ridden People project has just released their new paper on telehealth for homebound people. Read a news release about it here:

https://www.eurekalert.org/news-releases/1091388?fbclid=IwY2xjawLldgZleHRuA2FlbQIxMQABHlKkfZBWeoqJ4rHTkXpOPxc7p4OIPsYJ9UtsM8BE5HS2L3lrVEdj4UOnbSj-_aem_ZUQPptPIVh2MDPLpIulrEw


Our own Advocacy Lead, Penelope McMillan, is the consumer co-author on this academic paper and will be on the radio with Dr Maria Alejandra Piñero de Plaza, live-to-air on ABC North and West SA on Friday 18th July at 7.10am SA time, available afterward on their website as a recording.

https://www.abc.net.au/northandwest

Also, ABC Radio Riverland will play an interview on Friday 18th July on or after 7.50am SA time, available afterward on their website as a recording.

https://www.abc.net.au/riverland


Read the academic paper here:

https://onlinelibrary.wiley.com/doi/10.1155/hsc/7224151?fbclid=IwY2xjawLlc2FleHRuA2FlbQIxMQABHnbDwohf8pIQ7gMfMETmpnwtKISj6Oyqx-IONfXnl0e8EfGs684Kf7sYpwi3_aem_359tR18U_QNYgBCJmwmQ0Q

This evidence will help support advocacy toward access to telehealth for people in Australia who are homebound.

09/07/2025

For those who listen to podcasts, this recent Australian story may be picked up by print media if the podcast attracts enough listeners. It features Peter McCluskey, full-time carer for a severe ME/CFS patient. Available on Red Circle website
https://redcircle.com/shows/tcrp or where you get your podcasts.

Thank you to host Peter Hoysted (known as Jack the Insider) and to Peter McCluskey.

26/06/2025

ME/CFS SA members can join the zoom social catchup every Thursday afternoon, starting at 2.30pm and finishing at 4pm.
Open to members of ME/CFS SA. ( Join here https://mecfssa.org.au/get-involved/membership )

Head to the Member Resource Login and then to the “Upcoming events: links”

Make a cuppa, get comfy and join us for a chat. Everyone is welcome to stay for as little or as long as they need, health depending.

Hope to see you soon

16/06/2025

Want to talk with other patients of ME/CFS?

Join our weekly Zoom chats every Thursday at 2.30 pm. For more information, please visit https://mecfssa.org.au/event/online-catch-up

16/06/2025

June Fundraiser
We are grateful to Grill'd Unley for supporting our community again this year during the month of June.
Please let your friends and family know. Your support helps us all!

HOW IT WORKS
Every burger equals a token, to pop in a jar for voting, in person or online.
At the end of June the jar with the most tokens receives $300. The other charities receive $100 each.
Dine-in · Takeaway · Delivery
https://grilld.com.au/restaurants/south-australia/unley
Unley Shopping Centre, 204 Unley Rd, Unley
Open: 11am-9:30pm (Fri till 10pm)
Menu: grilld.com.au
Phone: (08) 8271 9881
Grill'd offers a wide menu, including low-carb, vegetarian and vegan options, with zero artificial colours, flavours and preservatives.

01/06/2025

HALFWAY!

500for500 marathon runner Jack Hewitt has completed his fourth of eight marathons raising awareness for ME/CFS.

The picture is of Jack with his finisher’s medal after taking part in the Eva Air Brisbane Marathon yesterday.

“I’m very glad that’s done! It was hard - harder than I was expecting,” said Jack.

“That felt like a big one done...three marathons in four weeks. “

“Now a lovely break of eight weeks until the next one!”

If you would like to donate to Jack’s fundraiser for the MEA, please visit:

https://www.justgiving.com/page/mecfsmarathonsaus

31/05/2025

Jack is running his 4th marathon in Brisbane tomorrow!

His third within two months, an amazing accomplishment, all to raise awareness of ME/CFS.

If you can, please support Jack by making a donation: https://www.justgiving.com/page/mecfsmarathonsaus

For more information please visit: https://mecfssa.org.au/event/500for500-8-marathons-for-me-cfs-in-2025.