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