FionaMECFS
@fioname.bsky.social
Victoria, Australia. Former professional wordsmith. 15 years living with the hell of myalgic encephalomyelitis (ME/CFS). Prone to so-called left-wing views & bingeing good TV 🤓
Pinned
FionaMECFS
@fioname.bsky.social
· Mar 8
Concerning message: "Engage in cognitive exercises, limit stressors, and consider professional cognitive rehabilitation therapy."
There needs to be an understanding that "cognitive exercise" can be as dangerous as physical exercise.
Need to learn more from #MyalgicEncephalomyelitis.
There needs to be an understanding that "cognitive exercise" can be as dangerous as physical exercise.
Need to learn more from #MyalgicEncephalomyelitis.
Agreed. Advice like this fails to grasp the basic nature of post-exertional malaise. The brain uses up approx 25% of the limited energy that compromised mitochondria can make in #mecfs & #longCovid ... and the more you do, the worse your symptoms get. These diseases turn everything upside-down.
Does anyone following #auspol know whether the ABC SBS is doing anything to mark the 50th anniversary of the Dismissal? Maybe I've missed the promos or I'm too early, but 11/11 is not far away and I've heard diddly squat 🤔
October 1, 2025 at 8:41 AM
Does anyone following #auspol know whether the ABC SBS is doing anything to mark the 50th anniversary of the Dismissal? Maybe I've missed the promos or I'm too early, but 11/11 is not far away and I've heard diddly squat 🤔
Reposted by FionaMECFS
On Australia's contributions this week.
September 26, 2025 at 1:51 AM
On Australia's contributions this week.
Reposted by FionaMECFS
Sidenote: Did you know that the NACC employs over 200 people, spends over $50m per year, has 5 offices, and in over two years of operations hasn't landed a single major corruption finding?
September 26, 2025 at 4:19 AM
Sidenote: Did you know that the NACC employs over 200 people, spends over $50m per year, has 5 offices, and in over two years of operations hasn't landed a single major corruption finding?
Reposted by FionaMECFS
I interviewed historian @emmashortis.bsky.social on the particulars of American fascism, comparisons with Nazism, the global crisis of democracy, and Australia's options. None of this is particularly cheery stuff, but you might find some clarity in it.
youtu.be/MM6cXjTBJ0U?...
youtu.be/MM6cXjTBJ0U?...
Historian Emma Shortis on American fascism and Australia's options
YouTube video by The Sunday Shot
youtu.be
September 21, 2025 at 1:03 AM
I interviewed historian @emmashortis.bsky.social on the particulars of American fascism, comparisons with Nazism, the global crisis of democracy, and Australia's options. None of this is particularly cheery stuff, but you might find some clarity in it.
youtu.be/MM6cXjTBJ0U?...
youtu.be/MM6cXjTBJ0U?...
Reposted by FionaMECFS
Again - I went to a Gold Coast public school while suffering from alopecia. Try as you might, none of you will ever be as casually devastating as 15-year-old mean girls. I don’t back down from anything I’ve written or said and your fauxrage and abuse just proves my points 😘
September 16, 2025 at 1:22 AM
Again - I went to a Gold Coast public school while suffering from alopecia. Try as you might, none of you will ever be as casually devastating as 15-year-old mean girls. I don’t back down from anything I’ve written or said and your fauxrage and abuse just proves my points 😘
Reposted by FionaMECFS
Posting a criticism of Charlie Kirk - much less noting something outrageous he himself said - is not “celebrating” his murder. Nor is it condoning his murder. It is simply saying that his political career and legacy are not something to be celebrated. And that is not the same thing at all.
September 15, 2025 at 10:06 PM
Posting a criticism of Charlie Kirk - much less noting something outrageous he himself said - is not “celebrating” his murder. Nor is it condoning his murder. It is simply saying that his political career and legacy are not something to be celebrated. And that is not the same thing at all.
Reposted by FionaMECFS
September 16, 2025 at 5:19 AM
Watching the redoubtable @maddow.msnbc.com on delay here in Australia. Thank you Rachel for your rigorous analysis of the sh$$show unfolding in America - and thank you for not mentioning CK, whom most media is making a martyr despite his rabid racism, sexism & homophobia!
September 16, 2025 at 5:41 AM
Watching the redoubtable @maddow.msnbc.com on delay here in Australia. Thank you Rachel for your rigorous analysis of the sh$$show unfolding in America - and thank you for not mentioning CK, whom most media is making a martyr despite his rabid racism, sexism & homophobia!
Reposted by FionaMECFS
That criticism of a proudly white supremacist has been so condemned over the past few days really does not do much for those arguing we are not a racist society
September 14, 2025 at 10:06 AM
That criticism of a proudly white supremacist has been so condemned over the past few days really does not do much for those arguing we are not a racist society
Reposted by FionaMECFS
Stanford Genome Technology Center - Community Symposium on the Molecular Basis of ME/CFS
med.stanford.edu/sgtc.html
stanford.zoom.us/webinar/regi...
Screenshot from latest Science for ME weekly update
#MEcfs #CFS
med.stanford.edu/sgtc.html
stanford.zoom.us/webinar/regi...
Screenshot from latest Science for ME weekly update
#MEcfs #CFS
August 25, 2025 at 2:25 AM
Stanford Genome Technology Center - Community Symposium on the Molecular Basis of ME/CFS
med.stanford.edu/sgtc.html
stanford.zoom.us/webinar/regi...
Screenshot from latest Science for ME weekly update
#MEcfs #CFS
med.stanford.edu/sgtc.html
stanford.zoom.us/webinar/regi...
Screenshot from latest Science for ME weekly update
#MEcfs #CFS
Reposted by FionaMECFS
It’ll be fascinating which if any major news outlets pick this story up, or follow the threads to the other cases that have rocked Australian cultural institutions recently.
The truth emerges.
The campaign to silence writers - which imploded the Bendigo Writers Fest - was waged by an anonymous group of pro-Israel academics, 5A.
(A group that has no compunction naming and defaming individual writers, btw).
Important scoop:
The campaign to silence writers - which imploded the Bendigo Writers Fest - was waged by an anonymous group of pro-Israel academics, 5A.
(A group that has no compunction naming and defaming individual writers, btw).
Important scoop:
Pro-Israel group lobbied La Trobe and Bendigo Writers Festival over Palestinian academic's institution
A leaked letter reveals pressure from a pro-Israel group in the lead up to the Festival
www.deepcutnews.com
August 17, 2025 at 11:31 PM
It’ll be fascinating which if any major news outlets pick this story up, or follow the threads to the other cases that have rocked Australian cultural institutions recently.
Welcome to The Sunday Shot!
YouTube video by The Sunday Shot
www.youtube.com
August 16, 2025 at 11:39 PM
Reposted by FionaMECFS
The Sunday Times As my daughter died of ME, the state met in secret to blame me
www.thetimes.com/uk/healthcar...
www.s4me.info/threads/maev...
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs
www.thetimes.com/uk/healthcar...
www.s4me.info/threads/maev...
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs
August 12, 2025 at 12:57 AM
The Sunday Times As my daughter died of ME, the state met in secret to blame me
www.thetimes.com/uk/healthcar...
www.s4me.info/threads/maev...
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs
www.thetimes.com/uk/healthcar...
www.s4me.info/threads/maev...
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs
Reposted by FionaMECFS
“The treatment of today's ME/CFS patients is comparable to that of lobotomy patients decades ago. When the full history of ME/CFS is written one day, we will all be ashamed of ourselves."
- Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway
www.me-foreldrene.no/saugstad_on_me
- Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway
www.me-foreldrene.no/saugstad_on_me
August 11, 2025 at 3:09 PM
“The treatment of today's ME/CFS patients is comparable to that of lobotomy patients decades ago. When the full history of ME/CFS is written one day, we will all be ashamed of ourselves."
- Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway
www.me-foreldrene.no/saugstad_on_me
- Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway
www.me-foreldrene.no/saugstad_on_me
Reposted by FionaMECFS
Fuck yeah Melbourne
August 10, 2025 at 9:01 AM
Fuck yeah Melbourne
Reposted by FionaMECFS
The Sunday Shot starts in 10 minutes with me, @instanterudite.bsky.social, @amyremeikis.bsky.social sky.social and international relations expert Dr Scott Burchill. We also have an interview with @richarddenniss.bsky.social. Join us!
The Sunday Shot
The Sunday Shot streams at 9am AEST each Sunday.
The Shot's Jo Dyer and Dave Milner are joined each week by a roster of Australia's best independent journalists and thinkers to discuss what's been ha...
www.youtube.com
August 9, 2025 at 10:49 PM
The Sunday Shot starts in 10 minutes with me, @instanterudite.bsky.social, @amyremeikis.bsky.social sky.social and international relations expert Dr Scott Burchill. We also have an interview with @richarddenniss.bsky.social. Join us!
Reposted by FionaMECFS
This weekend's #SundayShot sees Dr Scott Burchill making his debut plus Shot favourite @amyremeikis.bsky.social returns! And we interview @australiainstitute.org.au's @richarddenniss.bsky.social on his new essay, "Dead Centre: How political pragmatism is killing us".
Enjoy your Sunday ☕ with us.
Enjoy your Sunday ☕ with us.
August 7, 2025 at 9:23 AM
This weekend's #SundayShot sees Dr Scott Burchill making his debut plus Shot favourite @amyremeikis.bsky.social returns! And we interview @australiainstitute.org.au's @richarddenniss.bsky.social on his new essay, "Dead Centre: How political pragmatism is killing us".
Enjoy your Sunday ☕ with us.
Enjoy your Sunday ☕ with us.
Reposted by FionaMECFS
In other words, given what patients have been reporting for years, precisely what we'd expect to find.
Thanks again to the hardworking DOZENS of people working on DecodeME, and may the road rise up to meet you. A phenomenal effort, and the community is grateful and proud! /fin
Thanks again to the hardworking DOZENS of people working on DecodeME, and may the road rise up to meet you. A phenomenal effort, and the community is grateful and proud! /fin
August 7, 2025 at 3:49 PM
In other words, given what patients have been reporting for years, precisely what we'd expect to find.
Thanks again to the hardworking DOZENS of people working on DecodeME, and may the road rise up to meet you. A phenomenal effort, and the community is grateful and proud! /fin
Thanks again to the hardworking DOZENS of people working on DecodeME, and may the road rise up to meet you. A phenomenal effort, and the community is grateful and proud! /fin
Reposted by FionaMECFS
TL;DR
The genes found to be associated with #MECFS in the DecodeME study are associated with:
✨autoimmune conditions
✨innate immune response
✨response to viral infection
✨mitochondrial disorders
✨neurological disease
✨inborn errors of metabolism
✨pain/nocioception
✨cellular integrity/autophagy✨
The genes found to be associated with #MECFS in the DecodeME study are associated with:
✨autoimmune conditions
✨innate immune response
✨response to viral infection
✨mitochondrial disorders
✨neurological disease
✨inborn errors of metabolism
✨pain/nocioception
✨cellular integrity/autophagy✨
August 7, 2025 at 3:49 PM
TL;DR
The genes found to be associated with #MECFS in the DecodeME study are associated with:
✨autoimmune conditions
✨innate immune response
✨response to viral infection
✨mitochondrial disorders
✨neurological disease
✨inborn errors of metabolism
✨pain/nocioception
✨cellular integrity/autophagy✨
The genes found to be associated with #MECFS in the DecodeME study are associated with:
✨autoimmune conditions
✨innate immune response
✨response to viral infection
✨mitochondrial disorders
✨neurological disease
✨inborn errors of metabolism
✨pain/nocioception
✨cellular integrity/autophagy✨
Reposted by FionaMECFS
WHO is finalizing its global COVID plan — and it’s missing key protections. Public comment closes tomorrow, Aug 8.
Submit public comment now at covid19@who.int.
Learn more: whn.global/scientific/p...
#COVIDisAirborne #LongCOVID #CleanAirNow #COVID19 #COVID #PublicHealth #worldhealthorganization
Submit public comment now at covid19@who.int.
Learn more: whn.global/scientific/p...
#COVIDisAirborne #LongCOVID #CleanAirNow #COVID19 #COVID #PublicHealth #worldhealthorganization
August 8, 2025 at 1:01 AM
WHO is finalizing its global COVID plan — and it’s missing key protections. Public comment closes tomorrow, Aug 8.
Submit public comment now at covid19@who.int.
Learn more: whn.global/scientific/p...
#COVIDisAirborne #LongCOVID #CleanAirNow #COVID19 #COVID #PublicHealth #worldhealthorganization
Submit public comment now at covid19@who.int.
Learn more: whn.global/scientific/p...
#COVIDisAirborne #LongCOVID #CleanAirNow #COVID19 #COVID #PublicHealth #worldhealthorganization
Reposted by FionaMECFS
'Each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure.'
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
August 7, 2025 at 4:23 PM
'Each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure.'
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
Reposted by FionaMECFS
Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!
Pre-print plus li'l video before we get into a deeper dive.
Vid: www.youtube.com/watch?v=0S5u...
Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
Pre-print plus li'l video before we get into a deeper dive.
Vid: www.youtube.com/watch?v=0S5u...
Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
www.pure.ed.ac.uk
August 7, 2025 at 3:15 PM
Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!
Pre-print plus li'l video before we get into a deeper dive.
Vid: www.youtube.com/watch?v=0S5u...
Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
Pre-print plus li'l video before we get into a deeper dive.
Vid: www.youtube.com/watch?v=0S5u...
Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
Reposted by FionaMECFS
Hilda Bastain updates the tale of the Cochrane Collaboration’s controversial refusal to update its review on exercise and ME/CFS, and its continued use by researchers. "Not retiring influential out-of-date reviews is a ticking time bomb."
tinyurl.com/bdzb8eua
tinyurl.com/bdzb8eua
Six Months Later: What Their Response on ME/CFS Tells Us About the Cochrane Collaboration - Absolutely Maybe
Six months ago, I wrote a post called “When journal, scientific society, and community values clash.” I recounted the tale of the…
tinyurl.com
August 4, 2025 at 11:37 AM
Hilda Bastain updates the tale of the Cochrane Collaboration’s controversial refusal to update its review on exercise and ME/CFS, and its continued use by researchers. "Not retiring influential out-of-date reviews is a ticking time bomb."
tinyurl.com/bdzb8eua
tinyurl.com/bdzb8eua
Available on Amazon Australia too, for about $10. #mecfs #MyalgicEncephalomyelitis
The #MEAssociation reprint of this 2005 Dr Melvin Ramsay second edition reprint is now available as an e-book at Kindle Direct Publishing, priced at £5. The ebook was added to the KDP list just last Friday. Please find it here: www.amazon.co.uk/Myalgic-Ence...
#MelvinRamsay #mecfs #RoyalFreedisease
#MelvinRamsay #mecfs #RoyalFreedisease
August 3, 2025 at 10:14 AM
Available on Amazon Australia too, for about $10. #mecfs #MyalgicEncephalomyelitis