ME CFS and Lyme Association of WA

20/05/2025

This evening on SBS from 8:30PM - 9:30PM, Insight will be running a story on ‘Invisible Illness’.
Their blurb reads: “Invisible illness or 'all in the mind'? What are millions of Australians with unseen conditions experiencing and how can our healthcare system better diagnose, support and treat them? Insight explores the daily realities and impacts of living with invisible, chronic illnesses.”
https://www.facebook.com/InsightSBS/videos/1260338158990192/
https://www.sbs.com.au/ondemand/news-series/insight

15/05/2025

The PolyBio Research Foundation online symposium on Friday 16 May 2025 has a very interesting line up of topics. Registration is free: https://us02web.zoom.us/webinar/register/WN_SadjigUvSEyNUTqItpCpgQ

11:00-17:00 [USA] Eastern Standard Time (EST)
15:00-21:00 UTC
23:00-05:00 Australian Western Standard Time (AWST)
01:00-07:00 Australian Eastern Standard Time (AEST) (Saturday)

12/05/2025

https://www.youtube.com/watch?v=3P9fDPQxkxU

‘This is Me’ from The Greatest Showman shows the inner fight from those who were cast aside but needed to be seen and better acknowledged. This fits with the...

06/05/2025

Is there really Lyme Disease in Australia, or is the definition of Lyme Disease so terribly specific that authorities have essentially defined their way around the problem?

Aussies are getting sick after tick bites, with symptoms that look a lot like Lyme disease. But the government says it doesn’t exist here, because the usual bacteria haven’t been found in our ticks. Still, people are getting really sick, and doctors are asking questions. It was a big topic at a ...

29/03/2025

Social Catch up with special guest David Tuller, Tuesday, April 1st at 4pm, at The Niche.

David Tuller, DrPH, is a public health academic and journalist from Berkeley. For more than a decade, he has been covering the controversy over the PACE trial, which looked into graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for the treatment of chronic fatigue syndrome (ME/CFS). More recently David has been investigating the many parallels between ME/CFS and Long COVID.

David will be visiting Perth this week, and would love to meet with our local community, so this Tuesday at 4pm, there will be an opportunity for our community to speak to David, participate in a round circle discussion, hear all the latest news, catch up with friends, and hopefully gain some insights that will help us plan for the future.

Location: The Niche, 11 Aberdare Road, Nedlands, WA 6009
Google Map link: https://maps.app.goo.gl/cgKkUmkUUkQcnf5H7
Doors will open at 3:45 pm. There will be some free parking out the front of the Niche.

Coffee, tea, light snacks provided.

Please be mindful of hyper chemical sensitivities in ME/CFS patients and refrain from wearing any perfume or fragranced personal products.

Disposable face masks are available.

You can see the presentation he gave last time in Perth (2018) here: https://www.youtube.com/watch?v=sukZJbuVEuA
David’s most recent talk on Long Covid is available here: https://www.youtube.com/watch?v=V9f_kjlz6Ho
David’s blog: https://virology.ws/david-tuller-posts/
More about David: https://me-pedia.org/wiki/David_Tuller

Facebook event page here: https://www.facebook.com/events/543286158800199/

03/01/2025

Household items to give away - this week only.

ME/CFS and Lyme Association of WA has partnered with Good360 to receive a huge number of donated goods for distribution for free to our members! Have a look at what we have to give away here:

Video: https://www.youtube.com/watch?v=OdOAFE770dE

If you'd like to put in a request to receive some of these donated goods, please click on the link below and fill in the application form:

Application form: https://form.jotform.com/91708565201859

I’ll follow up by email with feedback on available stock and further details on how they can be collected and membership. Please note that we only have until Sunday, 5th of January 2025 to distribute everything to our members, after which anything remaining will need to go off to other charities.

26/09/2024

NCNED is calling out for research participants. Details below.

30/07/2024

NCNED Research Update, Thursday 8 August, 12 pm at The Niche

ME/CFS researchers Professor Sonya Marshall-Gradisnik, Dr Natalie Eaton-Fitch and Etianne Martini Sasso from the National Centre for Neuroimmunology and Emerging Diseases (NCNED) in Queensland will provide an update on research data and plans for future research including clinical trials. Their presentation will outline the involvement of faulty transient receptor potential ion channels - or threat receptors - in the pathology of ME/CFS, and potential use of low dose naltrexone as a therapeutic target. This will follow with an update on brain MRI changes identified by the team. Additionally, the team will provide information on how to get involved and participate in research.

Duration approx. approximately 30 minutes plus an opportunity for Q&A.

Thursday 8 August, 12 pm

The Niche - Conference room
11 Aberdare Rd
Nedlands WA 6009

Tickets are free, but registration is required. For additional details, please visit

NCNED researchers will provide an update on their ME/CFS research data and plans for the year.

12/05/2024

Today is ME/CFS awareness day, has anyone planned anything or wearing blue for this important day? 💙

15/06/2023

Thank you to Senator Jordon Steele-John and Maria Vamvakinou MP for relaunching the Parliamentary Friends of ME/CFS, and to Penelope McMillan (spokesperson for ME/CFS Australia), Anne Wilson (CEO of Emerge Australia) and Andrew Bretherton (Call for Change Australia) for their presentations.

Here is a summary of the event by ME/CFS Australia, with a link through to ME/ CFS South Australia’s website with a video of Penelope McMillan’s slideshow, transcripts of the other presentations, and some media links.

https://www.facebook.com/MEcfsAU/posts/pfbid0z3MvuPLBAq2J6za7ZeWrYmbKwTSiuwm5Vg68GtEoNa4X8KKD1jmVBd8CciZYskvVl

Thank you to Senator Jordan Steele-John and Maria Vamvakinou MP, Co-Chairs of the Parliamentary Friends of ME/CFS, for convening this meeting and to their staff for coordinating the event.

Due to a delayed start, Spokesperson for ME/CFS Australia, Penelope McMillan, was asked to cut her presentation time in half; and due to technical difficulties, she was unable to share the slides.
Due to many requests from the ME/CFS community and others, the planned presentation appears here, with a transcript and the slides.

In addition, this page contains links to media coverage and other material related to the meeting.

Thank you to the many people who attended, either in-person or online, to learn about ME/CFS and the challenges facing our community.

Thank you to the other presenters, Andrew Bretherton of Call for Change Australia, and Anne Wilson, CEO Emerge Australia, for so clearly portraying the need for urgent action.

Thank you also to the moderator, Sophie Scott.

https://mecfssa.org.au/event/parliamentary-friends-of-me-cfs-1

12/06/2023

A message from Jordon Steele-John
Greens spokesperson for Health and Disability Rights, inviting everyone to watch proceedings tomorrow.

"I am so proud to let you know that I am a Co-Chair of the new Parliament Friends of ME/CFS.
We are launching the Parliamentary Friends group on the 13th of June at 11 am-12 pm AEST / 9 am - 10 am WST.

This event will ensure Members of Parliament engage with patient advocates and stakeholders from across the country. Members of Parliament will hear about how they can best assist in achieving better outcomes and government support for people with ME/CFS.

As a passionate member of the community, you are invited to observe the event on Zoom. Here’s the Zoom link: https://us02web.zoom.us/j/88962701771

The event speakers include Penelope McMillan from ME/CFS Australia, Anne Wilson from Emerge and a community advocate to speak about their lived experience. I and my co-chair, Maria Vamvakinou MP, will also make remarks."

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02/05/2023

𝗡𝗼𝘃𝗲𝗹 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗱𝗲𝘃𝗲𝗹𝗼𝗽𝗺𝗲𝗻𝘁

NCNED researchers are embarking on the implementation of high throughput data acquisition to measure changes in immune cell structure, as well as TRPM3 ion channel responses. Our aim is to work towards translating our research to improve patient outcomes through the development of a diagnostic test.

NCNED would like to thank Perkin Elmer for providing the Opera Phenix Screening System over the coming weeks.

Best wishes,
Sonya and the NCNED Team

The NCNED would like to express our sincere gratitude and appreciation to all the volunteers, Support Groups and the following Organizations:
• The Stafford Fox Medical Research Foundation
• National Health and Medical Research Council
• MERUK
• Mr Douglas Stutt
• The McCusker Charitable Foundation
• Mr Adrian Flack
• Ian and Talei Stewart
• The Alison Hunter Memorial Foundation
• The Buxton Foundation
• The Henty Community
• The Blake Beckett Foundation
• Change for ME Charity
• QLD ME/CFS/FM Support Association
• WA ME/CFS and Lyme Association
• Fibromyalgia ME/CFS Gold Coast Support Group Inc
• Tweed ME/CFS/FM Lyme Support Group
• ME/CFS South Australia Inc
• ME/CFS & FM Association NSW Inc
• ME/CFS Australia Ltd
• National Advocacy Advisory Council for ME/CFS

, Menzies Health Institute Queensland, Griffith University, Griffith Health, , , , , Tom Kindlon's ME CFS & related page: News, Research and more, , ME/CFS Australia, , ME CFS and Lyme Association of WA, ME/CFS/FM Support Association QLD Inc, Australian National Advisory Advocacy Council for ME/CFS Research - NAAC, Fibromyalgia me/cfs Gold Coast Support Group Inc., Chronic Fatigue Syndrome & Fibromyalgia NSW, Australia, ME Research UK, ME-ICC & other marginalized diseases (public group), , ME/CFS San Diego, , , , National Health and Medical Research Council - NHMRC, ME/ CFS South Australia Inc, Myalgic Encephalomyelitis M.E Chronic Fatigue Syndrome CFS Science, Myalgic Encephalomyelitis Group Australia Ltd, Leeds ME Network, Stichting ME Research, Australian Healthcare & Hospitals Association