iiinova — where your digital self keeps evolving

Reposted by FionaMECFS

Alem Matthees @alemmatthees.bsky.social · 07/10/2026

Scary facts in #DecodeME presentation (Ponting): Stigmatised illness. Symptoms not always believed. 75% of people with #ME/CFS say they have little or no access to healthcare. One in four patients are housebound or bedbound. Across Europe, it takes nearly seven years on average to get a diagnosis.

youtube.com

Decoding ME: ME/CFS genetics and biomarker studies with Professor Chris Ponting, 24 September, 2026

YouTube video by ME Support

13113

FionaMECFS @fioname.bsky.social · 09/10/2026

So glad you can read again 😊 And yep, 'WTAF' is right! The world, including Australia, have changed a lot since 2017. Even the ME landscape has moved a tiny bit.

050

Reposted by FionaMECFS

David Milner @davemilbo.bsky.social · 08/10/2026

The Sunday Shot will be back the Sunday after next (18th) with Hannah Ferguson and an in-depth exploration of why she is attempting to unseat the Prime Minister and her ideas for a better/less overtly shitty Australia

Dave and Hannah sitting in the park talking politics

2526177

FionaMECFS @fioname.bsky.social · 08/10/2026

Sunday Shot and Hannah! Something to look forward to 😊

030

FionaMECFS @fioname.bsky.social · 07/10/2026

And yet the article provides zero info about WHY we experience more pain - even though it's thought to be hormone & immune-related.

000

FionaMECFS @fioname.bsky.social · 04/10/2026

My #auspol feed is full of rugby league grand final guff. How very Australian 😆

010

Reposted by FionaMECFS

Anthony Klan @anthonyklan.bsky.social · 02/10/2026

🚨The Coalition's "MAGA arm" – billionaire-funded disinformation group Advance – has banned media from a public event featuring Senator Bridget McKenzie. Major questions for Coalition, follows One Nation's bans. Gina Rinehart biggest funder of both... theklaxon.com.au/gmvn

theklaxon.com.au

Coalition's “MAGA arm” bans media - The Klaxon

Media has been barred from a “public” event featuring National Party Senate leader Bridget McKenzie hosted by far-right lobby group Advance.

910261

FionaMECFS @fioname.bsky.social · 01/10/2026

They have the balance of power in the Senate. Are you suggesting they shouldn't use it?

000

FionaMECFS @fioname.bsky.social · 01/10/2026

I think yogic breathing is great if a pwME has the spoons to do it - but anyone who insists that it'll 'cure' ME is sadly mistaken.

000

FionaMECFS @fioname.bsky.social · 30/09/2026

Thank gawd for dextromethorphan, which gives me a little bit more in the tank so I can still do a very short, modest practice once or twice a week #mecfs 2/2

000

FionaMECFS @fioname.bsky.social · 30/09/2026

I started yoga classes in 2001. I maintained a fairly substantial home-based yoga practice for some time after I developed #mecfs in 2010. More recently, as I crossed the Rubicon into moderate-severe & low-end severe, my practice shrunk to a stub of its former self. 1/2

210

FionaMECFS @fioname.bsky.social · 30/09/2026

Yep - and eroding the superannuation balances of #pwME who can no longer work 😏 I'm in my 50s and worry about this a lot.

000

FionaMECFS @fioname.bsky.social · 29/09/2026

Crikey, you've been through the mill! Glad you were treated successfully & have good ways to manage the cholesterol issue.

060

Reposted by FionaMECFS

Apoorva Mandavilli @apoorvanyt.bsky.social · 26/09/2026

I’ve been reporting on the CDC for years, and have written about many of its troubles over the past year. I was still shocked by the extent of the staff losses and political interference I found when reporting this one. www.nytimes.com/2026/09/26/h...

nytimes.com

‘Zombified’ C.D.C., Hobbled by Cuts, Struggles to Fulfill Scientific Mission (Gift Article)

The agency has lost its independence and nearly a third of its staff, as Health Secretary Robert F. Kennedy Jr. and associates have tightened control.

381378576

Reposted by FionaMECFS

Mrs. Betty Bowers @mrsbettybowers.bsky.social · 25/09/2026

And speaking of childish things, I've decided to give Florida a far more accurate and important name—America's Flaccid Dong. Please act accordingly. Thanks in advance . . .

4923809747

FionaMECFS @fioname.bsky.social · 25/09/2026

Yes! This is a point I've made many times. Here in Oz, the Uni of Tas published a 2023 study estimating that #mecfs costs the nation up to $10 billion annually - yet successive federal govts haven't even invested $10 MILLION in biomedical research over the last 25 years. Egregiously false economy!

090

Reposted by FionaMECFS

Emerge Australia @emergeaustralia.bsky.social · 23/09/2026

💙 A gift in your will can help Emerge Australia continue supporting people living with ME/CFS, long COVID and other energy-limiting conditions for generations to come. Every gift can make a lasting difference. Learn more: zurl.co/U14jt #SupportEmerge #GiveHope

052

Reposted by FionaMECFS

Emerge Australia @emergeaustralia.bsky.social · 24/09/2026

The Australian: 600,000 Patients Risk Losing Care Over $220k Grant emerge.org.au/news/the-aus... @markbutlermp.bsky.social @sophiescott2.bsky.social @traceyspicer.bsky.social @mmissingaus.bsky.social

076

FionaMECFS @fioname.bsky.social · 23/09/2026

The way he often refers to himself in the third person is so creepy. It's like, if he can't see his own name all the time, he has no identity and will cease to exist 🙄

010

Reposted by FionaMECFS

Jon Douglas @atranscendedman.bsky.social · 23/09/2026

University of Alabama at Birmingham, 6,364 patients. Worsening cardiometabolic health after COVID was linked to 36% higher odds of Long COVID, with rises in BMI, glucose and triglycerides contributing. www.diabetesresearchclinicalpractice.com/article/S016...

diabetesresearchclinicalpractice.com

045

FionaMECFS @fioname.bsky.social · 23/09/2026

Or someone who wrote the press release doesn't know the difference between Old and Middle English.

000

Reposted by FionaMECFS

Tom Kindlon @tomkindlon.bsky.social · 23/09/2026

(Melbourne, Australia) Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID redcap.unimelb.edu.au/surveys/?s=W... #MEcfs #LongCovid #PwME #CFS

Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID - The University of Melbourne
We are conducting a brain imaging project to investigate potential differences between healthy controls and patients with ME/CFS and/or long COVID with or without Postural Orthostatic Tachycardia Syndrome (POTS).

You or someone you know might be suitable if you/they are:

Female aged 18-70 years old (inclusive)
Diagnosed with ME/CFS or long COVID
Interested in brain imaging, brain blood flow and inflammation
Participation in this research would involve:

5 online questionnaires and 1 cognitive test (~3 hours in total).
2 visits to the Melbourne Brain Centre Imaging Unit with a total participation time of ~8 hour. This will include:
An hour-long MRI brain scan.
2 separate hour-long PET brain and calf scans.
3 venous blood draws.
Providing urine samples
Time spent will be reimbursed at $20/hour.

Interested in participating?

https://redcap.unimelb.edu.au/surveys/?s=WK34J7TR3AX4D9Y3

053

FionaMECFS @fioname.bsky.social · 20/09/2026

Well, well, well ... that explains a lot!

041

Reposted by FionaMECFS

The Cathy Wilcox @cathywilcox.bsky.social · 20/09/2026

Good to see this finally get coverage in my old paper. This is the same mob who campaigned against me, but it wasn’t sufficiently newsworthy then.

32602263

FionaMECFS @fioname.bsky.social · 18/09/2026

Welcome to social media, Alem 🙂 I'm across the Nullarbor in Melbourne. I've had ME for over 16 years and deeply appreciate the work you did to uncover the rotten 'data' underneath the PACE trial.

070

Reposted by FionaMECFS

Nick Feik @nickfeik.bsky.social · 13/09/2026

Pro tip: if a politician uses the phrase “we’ve been very clear…” it means they’ve been completely incoherent on that policy

421466240

FionaMECFS @fioname.bsky.social · 14/09/2026

And how much of the $368bn price tag will we have forked out by then? Oh, I know ... all of it, and more 😏

010

FionaMECFS @fioname.bsky.social · 09/09/2026

Today, misinformed practitioners worldwide continue to exhort #mecfs patients to exercise - even though exercise is clearly contraindicated for the disease. The @nhmrc.bsky.social clinical guidelines can't come soon enough @markbutlermp.bsky.social @racgp.bsky.social 2/2

092

FionaMECFS @fioname.bsky.social · 09/09/2026

10 years ago, Australian #mecfs sufferer Alem Matthees became significantly more unwell because he fought to uncover the truth about the highly flawed 'PACE' trial of graded exercise therapy & cognitive behavioural therapy. 1/2

12010

Reposted by FionaMECFS

Jon Douglas @atranscendedman.bsky.social · 27/08/2026

🧫 Primate gut organoids >1 year post-infection to study viral reservoirs 🦠 SARS-CoV-2 RNA found in gut, skin & bone marrow 🩸 Muscle biopsies showed capillary thickening + impaired oxygen 💊 VSL#3 probiotic 68% fatigue responders + gut/immune shifts islc-pais.org/abstractbook/

islc-pais.org

2026 Conference Abstract Book | ISLC-PAIS

Explore the official Abstract Book for the 2026 Amsterdam ISLC-PAIS Conference, featuring keynote, oral and poster presentations on Long COVID and PAIS.

0112

Reposted by FionaMECFS

tonywindsor.bsky.social @tonywindsor.bsky.social · 28/08/2026

Thankyou @cathywilcox.bsky.social for your outstanding work and advocacy for many Australians through your brilliant cartoons. Like many I hope to see you bob up in our media in the future but whatever you do you will always be respected and well remembered. 10.

124842

Reposted by FionaMECFS

emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 24/08/2026

2026 Community Symposium on the Molecular Basis of ME/CFS is happening September 11th. Free registration here: stanford.zoom.us/webinar/regi...

Ronald W. Davis
19h • 0
...
2026 Community Symposium on the Molecular Basis of ME/CFS

I am pleased to announce that this year's 10th Annual Stanford Working Group Meeting on the Molecular Basis of ME/CFS will include a virtual Community Symposium again this year, in which patients, caregivers, doctors, and any other interested parties are invited to attend. The closed portion of the meeting will be held September 8 - 10, and the last day, September 11, will be open to the public. It will be held on zoom starting at 8 am PST.

*You must register to be sent a link to gain entrance to the meeting.* The link you are sent can only be used by the email you register with, and cannot be shared.
There is limited capacity so please be sure to register ahead. The agenda will be announced soon. I am excited to be hosting this again, and look forward to seeing you there!
Here is the registration link:

01911

FionaMECFS @fioname.bsky.social · 22/08/2026

But, but, but ... that'd be un-Australian! 😆

010

FionaMECFS @fioname.bsky.social · 16/08/2026

I guess money would be the limiting factor, as always in this field.

120

Reposted by FionaMECFS

ME/CFS Science @mecfsscience.org · 14/08/2026

1) 🇦🇹 Interesting study that tested brain blood flow and metabolites under experimentally induced hypoxia (they gave ME/CFS patients less oxygen while lying under the MRI scanner). The idea is that this might reveal brain differences during a stressor.

1327

Reposted by FionaMECFS

Anthony Klan @anthonyklan.bsky.social · 05/08/2026

🚨Networks of bogus “news” pages are being used to spread vast amounts of pro-Hanson and One Nation propaganda on social media — as Hanson bans actual media. Pages aggressively spreading calculated disinformation in mass MAGA attack. Investigation 👇 theklaxon.com.au/i7z3

theklaxon.com.au

Sham pro-Hanson "news" pages flood social media – as One Nation bans actual news - The Klaxon

Networks of sham “news” pages on social media are being used to spread vast amounts of pro-Pauline Hanson and pro-One Nation propaganda — as Hanson bans actual media.

1210263

FionaMECFS @fioname.bsky.social · 31/07/2026

This is way over the top. Why oh why is our govt so craven to the Z$onist lobby? Louise Adler's comments on Threads are interesting to read in this regard.

083

FionaMECFS @fioname.bsky.social · 29/07/2026

The results of all this will take years to manifest. I don't think I have the fortitude to survive another 16 (or 32!) yrs of #mecfs 😥 U hold the purse strings @markbutlermp.bsky.social @jimchalmers.bsky.social @albomp.bsky.social. U can change things - for me and 00s of 000s of other Aussies. 5/5

030

FionaMECFS @fioname.bsky.social · 29/07/2026

There's some cause for hope. Last year's huge #DecodeME gene study may have helped turn a corner. Here in Australia, the NHMRC is developing new clinical guidelines. The AIHW's decision to include #mecfs in official chronic illness statistics will also help put us on the map. 4/5

140

FionaMECFS @fioname.bsky.social · 29/07/2026

How many doctors are still profoundly ignorant about the true nature of #mecfs, despite the existence of excellent clinical guidelines from 2003, 2011, 2015 & 2021? How many more ppl will waste their lives in bed? How many will opt out bc they can't live in physical agony for one more day? 3/5

120

FionaMECFS @fioname.bsky.social · 29/07/2026

With the dearth of effective & targeted treatments, there's every possibility of my #mecfs getting worse still. It's 2026! How many research fields are still so behind the eight-ball re: tests & treatments? How much further can our dedicated scientists go without substantial govt investment? 2/5

140

FionaMECFS @fioname.bsky.social · 29/07/2026

This week marks 16 years since I developed #mecfs. In that time I've worsened from mild-moderate to severe. I'm bedbound 22 hrs/day with rolling, agonising post-exertional malaise (#PEM) that's near-impossible to get rid of. I'm only able to leave the house for essential purposes. 1/5

180

FionaMECFS @fioname.bsky.social · 24/07/2026

And the NDIS. It's one thing to clamp down on dodgy provider practices, but @mon4kooyong.bsky.social tweeted a Treasury stat that the clean-up will only account for 2.6% of what Labor wants to save. Ppl's plan amounts are being shredded, and that's unsustainable. Ppl with #disabilities vote too!

021

Reposted by FionaMECFS

David Milner @davemilbo.bsky.social · 24/07/2026

Well, it's nice to be able to provide good news for once, that's exactly what we're doing this week on Sunday Shot. We'll have a 30-minute long chat about disentangling "from the death cult" with @davidshoebridge.bsky.social from outside Pine Gap, totally uncut

520350