ME CFS and Lyme Association of WA in Nedlands, Western Australia | Non-profit organisation

ME CFS and Lyme Association of WA

Locality: Nedlands, Western Australia

Phone: +61 8 6457 7477

Address: The Niche, Suite B, 11 Aberdare Rd 6009 Nedlands, WA, Australia

Website: http://www.mecfswa.org.au

Likes: 1568

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• Medical and health
• Non-profit organisation
• Charitable organisation

22.01.2022 Here are the WA buildings and landmarks organised for Light Up The Night, part of May12th International ME/CFS Awareness Day. Thank you to the councils, and building and landmark owners for their assistance and for supporting awareness lighting. #May12th #MECFS #lightupthenight

19.01.2022 "Fighting Disbelief: Chronic Fatigue Syndrome An interesting investigation via The Feed: We used to think Chronic Fatigue Syndrome was imaginary. Now we know better. So why is it still so hard to get support from the NDIS?" https://www.facebook.com/watch/?v=1288442221489481 Look familiar? This was broadcast back in April 2018 and we also shared it back then. ... https://www.facebook.com/ME.CFS.Western.Australia/posts/1622330617815971 Worth another share or watch.

16.01.2022 The Mason Foundation has opened its grant round for ME/CFS. If you know an ME/CFS researcher who should apply, we encourage you to let them know. Alternatively, feel free to let us know and we can contact them. https://www.eqt.com.au//mason-foundation-2020-program-guid

14.01.2022 The Bell Tower in Perth is lighting up blue for May12th International ME/CFS Awareness, and have been supportive each year. Consider heading to the post below and saying thank you to them. #May12th #mecfs #lightupthenight... The Bell Tower Home of the Swan Bells Perth May 12th International ME CFS FM Awareness Day Australia

13.01.2022 Health Minister Greg Hunt confirms telehealth is here to stay. Our charity welcomes this announcement, and we know our community does too. Instead of waiting 10 more years (2030) for telehealth to become a fixture in our health care system, COVID has brought it forward to 2020. This is great news for those with a disability, those with chronic illness, and the elderly, all of whom can find making it to the GP clinic a burden. https://www.news.com.au///c6f4ff84b9563749b39e6a0a3227f225

13.01.2022 Our volunteers watched on tonight's news and saw that the dates of these two payments have now been announced: $250 paid from 30 November 2020 $250 paid from 1 March 2021 https://www.facebook.com/ME.CFS.Western.Australia/posts/3280615531987463

13.01.2022 If you would like to subscribe to our newsletter, you can opt in at https://eepurl.com/ceaYT9

12.01.2022 Fremantle Prison lit up in blue tonight for May12th International ME/CFS Awareness Day. We thank Fremantle Prison for their support. Please consider heading to their post to say thank you. #May12th #MECFS #lightupthenight... May 12th International ME CFS FM Awareness Day Australia

11.01.2022 Broome water tower has today let us know they will light up blue on 12th of May 2021 as part of May12th International Awareness Day. If anyone knows anyone who lives in Broome, please ask if they will take some photos for us. :-) https://may12th.org.au/light-up-the-night-australia-2021/

11.01.2022 Two years ago, we presented Alem Matthees with an award and framed certificate on behalf of the Australian ME/CFS community, and state and national ME/CFS organisations. His birthday happens to fall on May12th International ME/CFS Awareness Day. Alem was being honoured for his extraordinary contribution in fighting for information that allowed the PACE trial to be debunked. You can read more here: ... https://may12th.org.au/australian-me-cfs-advocacy-award-ho/ Our team wish Alem a Happy Birthday. #May12th #mecfs

08.01.2022 NICE guidelines 'Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management' The draft guidelines, released today, can be read here: https://www.nice.org.uk//gid-n/consultation/html-content-2

06.01.2022 A volunteering opportunity for someone who is able to contribute around 6 hours per month, plus can drive into our Nedlands premises to help with stock.

05.01.2022 The NICE Guidelines getting a mention in The Guardian. https://www.theguardian.com//fatigue-syndrome-exercise-the

04.01.2022 Via Whitney Dafoe. Pre orders now available. "I’m excited to announce that a book has been written about my family (mostly about Ron and myself) by a great author, Tracie White, and published by a major publishing company. In the US and Australia it’s called "The Puzzle Solver". The UK Publisher named it "Waiting for Superman". (I’m not sure about other countries but it will be available worldwide). It tells my life story as well as my father’s and intertwines that with my current fight to survive and Ron’s fight to find a cure for ME/CFS before its too late for me (and many of you)."

03.01.2022 NCNED have a new Facebook page (March 2020 - sharing again for those who missed it) "We have had a glitch with our current Facebook page and have now created a new NCNED Facebook page. We are hoping to eventually merge our old Facebook page with this new one in the future." https://www.facebook.com/NCNED/

02.01.2022 ME/CFS Australia - the national peak body - recently made a submission to this at our request as a member organisation. Thank you to everyone at ME/CFS Australia for their work and contributions. Our organisation also co-signed a submission on this a few years ago. It is great to see a number of ME/CFS organisations taking an interest in this and working together.... The list in Senator Rachel Siewert's graphic is telling, showing 58 organisations against, and only 6 organisations in favour. ME/CFS Australia

02.01.2022 David Tuller presented his talk The PACE Trial on Trial for ME/CFS and Lyme Association of WA in April 2018. You can watch a recording of the talk on YouTube here: https://www.youtube.com/watch?v=sukZJbuVEuA Duration 1h 16m.

01.01.2022 Suggest an event, seminar, or guest speaker We are always looking to find our next guest speaker, and ideas or topics for an event or seminar. Is there someone you have in mind? Is there a topic you want to learn more about, at an event hosted by us? Do you yourself want to speak at a seminar about your personal health, recovery, or illness management? Let us know on this form! http://bit.ly/suggestspeakerWA