ME/CFS South Australia

ME/CFS South Australia Inc. provides support, education and advocacy for people with ME/CFS and those who care for them.

[ME/CFS South Australia @mecfs_aust_sa]

Politicians line up for Parliament House event promising new beginning for South Australians with #MECFS and #LongCOVID, and those who care for them.
Experience it on our web page!
Listen to Ministerial speeches, see #MM slide show, lived experience videos
https://t.co/wY09nLQbyb

[Dr Maria Alejandra Pinero de Plaza, PhD @MariaAPinero]

Excited to discuss our findings on how telehealth can reduce healthcare utilization and enhance the quality of life and well-being for frail, homebound, and bedridden people. @Flinders @SAHealth @FlindersCFI @PenelopeJaneMcM #FHBP @mecfs_aust_sa #Impact

[Dr Maria Alejandra Pinero de Plaza, PhD @MariaAPinero]

@Flinders @FlindersCFI @mecfs_aust_sa @ILCconnect2care

[ME/CFS South Australia @mecfs_aust_sa]

Exciting news! @Mark_Butler_MP announced funding for new clinical guidelines.
ME/CFS SA, ME/CFS Australia and its other member organisations are grateful for this much-needed development for #MECFS, #LongCOVID and associated conditions.
Thanks to all who helped make this happen.

[ME/CFS South Australia @mecfs_aust_sa]

@FairlieHall @EmergeAus @MEAdvNetAu MEpedia has collected the journal articles on the Adelaide outbreak:
https://t.co/aXVHpuC0zD

[ME/CFS South Australia @mecfs_aust_sa]

@FairlieHall @EmergeAus @MEAdvNetAu Susan, there used to be a newspaper article from 'The Advertiser' about the Adelaide outbreak on Trove, but recent searches of Trove haven't found it.
The multiple medical journal articles about it reflect a psychological bias, e.g. discounting reported neurocognitive symptoms.

[Dr Maria Alejandra Pinero de Plaza, PhD @MariaAPinero]

Our consumer co-researcher, @PenelopeJaneMcM, presented to policymakers in #Australia on behalf of the #FHBP community, specifically focusing on individuals affected by ME/CFS. Advocating for policy changes to better support patients' needs. @flinders @FlindersCFI @mecfs_aust_sa

[ME/CFS South Australia @mecfs_aust_sa]

@Pflegeherz12 Auf Deutsch:
https://t.co/l7oRwb7RqJ

[Terry Field @AlongsideME]

Alem Matthees was one person w #SevereME in my thoughts yesterday.
The personal cost of taking on FOI to access discredited PACE trial, exposing flawed research, was beyond what any individual should suffer.
#MillionsMissing w #MECFS are indebted to Alem.
PCH changes are overdue.

[PZ *ME Lobbyist* @pzneedsrest]

Here's a clip from a presentation by @PenelopeJaneMcM for the Parliamentary Friends for #MECFS meeting on 13 June 2023.

It pays tribute to Carmel Johnson🕯️
and honours Alem Matthees. 💙

#SevereME
#DontLetMEDie
#pwME
#MillionsMissing
#MyalgicEncephalomyelitis

[ME/CFS South Australia @mecfs_aust_sa]

Do you see M.E.?
What hope will you offer Alem & 100,000s of Australians with #MECFS?
When will you act on @NHMRC Report & #LongCOVID Inquiry Recommendation 8? @Mark_Butler_MP @gedkearney @healthgovau @Anne_Ruston
#SevereMEDay
It is NOT fatigue.

[ME/CFS South Australia @mecfs_aust_sa]

#SevereMEDay
Watch this video to understand some major challenges people in Aust face with severe #MECFS.
https://t.co/uPOPBS28vd
Ask your federal MPs, Senators & staff to watch the video and to contact the Dept of Health & the Minister, to act on clinical guidelines.
#auspol

[ME/CFS South Australia @mecfs_aust_sa]

@ALeighMP @miller_frost @alpsa @VSA_NT @CommCentresSA @ConservationSA @VinniesSA @welcomingaus @AusRationalist @OzHarvest Thank you for the opportunity to ask important questions and have them answered thoughtfully.
Charities that are tiny, financially, but huge in the vulnerable community they serve, need the help that is being forecast to remain viable and continue to meet their charitable purpose

[Science for ME online forum @s4me_info]

Australian Parliament

@mecfs_aust_sa recently covered the launch of the parliamentary friends of #MECFS, including video and slides of their presentation.

#MEAwarenessHour

https://t.co/gkpJGh408I

[ME/CFS South Australia @mecfs_aust_sa]

#ParlFriendsOfMECFS
Due to a delayed start, Spokesperson for ME/CFS Australia Penelope McMillan was asked to cut her presentation time in half.
Here is the planned presentation with transcript and slides.
https://t.co/80f9nQQ7lx
@SenatorJordon @MariaVamvakinou #PACE #MECFS

[ME/CFS South Australia @mecfs_aust_sa]

@TomKindlon Thank you, Tom!

[ME/CFS South Australia @mecfs_aust_sa]

Parliamentary Friends of ME/CFS
11am-12pm AEST Tues 13 June
Join the event online: https://t.co/562bsQ44lN

https://t.co/Pg8w6a1lUM

@Griffith_Uni #MECFS #pwME

[ME/CFS South Australia @mecfs_aust_sa]

Invitation from Parliamentary Friends of ME/CFS.
Co-Chairs @SenatorJordan, @MariaVamvakinou
11am-12pm AEST Tues 13 June
Join the event online: https://t.co/562bsQ44lN
Webinar function with a Q&A box
All parliamentarians and their staff have been invited to come along in person.

[ME/CFS South Australia @mecfs_aust_sa]

Thank you to the following for supporting #LightUpTheNight 2023

@TheAdelaideOval
@DFIT_SA
@sahmriAU
@SAPowerNetworks
@University
@UnleyCouncil
and Parliament House of South Australia.

More photos and events:
https://t.co/oNEzR8Rzik