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ME/ CFS South Australia Inc

Phone: +61 1300 128 339

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23.01.2022 AGM and Seminar via Zoom Please join us this Saturday, 26th September, for our AGM and to hear Dr Anne Steinemann speak on Multiple Chemical Sensitivity, ‘The Fragrance Problem’. Following the presentation, there will be question time and then an opportunity to catch up with others.... Call opens: 1:30pm (time to acquaint yourself with Zoom) Meeting starts: 2:00pm Members and their carers are free. Non members $5. Membership is only $5. If you are not currently a member and would like to attend the seminar online, please pay before 5pm Friday. Pay at https://bit.ly/369MJyP If you would like help in setting up Zoom on your device before Saturday, please let us know in the comments below. Management Committee #MECFS #MECFSSASeminar

23.01.2022 Social catch-ups are on again! Join us next Wednesday, 21 October. Location: Millswood The catch-up is held in a home, so there are sofas to lie on, places to put your feet up, tea, coffee, A/C....and it is ME/CFS friendly. ... Get in touch if it sounds like something you would enjoy. Email: [email protected] or Ph: 1300 128 339

19.01.2022 We send greetings to all fathers on Father's Day. We know that this day may be bittersweet for many: for fathers who have #MECFS and are missing out on life with their children; and for those fathers whose child has ME/CFS and grieve the losses this illness brings for their child. We hope that whatever your circumstance, today may bring you some joy and encouragement.

19.01.2022 TCR Funding Allocation for ME/CFS has been announced! ME/CFS South Australia applied for a TCR (Targeted Call for Research) for ME/CFS in late 2016. The time delay has been due to development of the NHMRC Report, with its list of recommendations for #MECFS in Australia, including research funding.... Many thanks to all the researchers who submitted applications and congratulations to the three teams who have been successful. https://www.nhmrc.gov.au/file/15682/download?token=xxUI-LiS

17.01.2022 Radio National ABC Life Matters with Hilary Harper on Wed morning had a segment on ME/CFS. It starts at 26:25 mins and is about 16 mins in length. Hilary interviews: - patient, Susan Collinson, who talks about her experience living with ME/CFS. - Emerge CEO, Heidi Nicholls ... - Deakin University researcher, Prof Ken Walder, speaks on the innovative 5 year research they will be doing. It sounds exciting! Broadcast: Wed 14 Oct 2020, 9:05am https://www.abc.net.au//being-a-carer-during-a-p/12764350

16.01.2022 This has been a topic of discussion. It's helpful to have a comprehensive article like this to inform our thinking.

15.01.2022 It is so important that consumers are embedded in medical research teams. Collaboration with those who have the lived experience can lead to research that is more relevant and influential. ME/CFS SA has a long history of engagement with local researchers. It is pleasing to see this systematic review of Consumer Engagement in Health Care Policy, Research and Services in preprint, with our Chair, Penelope McMillan, as one of the authors.

13.01.2022 People with ME/CFS are amongst those who are often excluded from primary healthcare due to being housebound. Thank you to Dr Maria Alejandra Pinero de Plaza for bringing the important issue of access to primary healthcare to national and international attention. The research aims to explore the experience of exclusion from primary healthcare; and this conference presentation explores how telehealth can create much-needed access.... #MEcfs #MillionsMissing https://blogs.flinders.edu.au//the-caring-futures-instit/

07.01.2022 We are thinking today of our South Australian members who have #SevereME, their families and carers.

03.01.2022 The global ME/CFS community has been waiting a long time for the first draft of the new NICE clinical guidelines (National Institute for Health and Care Excelle...nce). Advocate, Michiel Tack, has provided a helpful summary and discussion. https://mecfsskeptic.wordpress.com/.../the-new-nice.../... #stopGET #MECFS

02.01.2022 A wonderful piece on Channel 9’s Today show this morning, hosting #MotoGP world champion, Casey Stoner, discussing his experience of ME/CFS. The new Open Medici...ne Foundation (OMF) research centre for ME/CFS in Australia, with the return of researcher, Chris Armstrong, is a very welcome addition to Australian ME/CFS research. Thank you to Emerge for their role in facilitating the new research centre and bringing Casey Stoner on board. Many thanks to Casey for his willingness to speak candidly about his experience. #9Today @Official_CS27 https://9now.nine.com.au//racing/ckgih3lam000f0hpae3b7jgwk

01.01.2022 Thank you to Dr Michael Musker, one of our SAHMRI #MECFS researchers, for this clear explanation of how post viral fatigue syndrome, long-Covid and MECFS intersect. Those of you who took part in the 'Vampire Study', or attended our cytokine seminar, will be familiar with Mike's work. We are looking forward to stage 2 of #SAHMRI's cytokine studies. https://www.abc.net.au//coronavirus-post-viral-f/12733100