@mmissingaus
There are #MillionsMissing from their lives due to ME (Myalgic Encephalomyelitis or #MECFS). We're fighting to make their voices heard. Sadly, many ppl with #LongCovid meet #ME diagnostic criteria - adding many more to the ME ranks.
Independent federal MP and former medical specialist Monique Ryan is spearheading a campaign for more medical research funding. If you'd like to support her efforts, fill in the email proforma below.
www.moniqueryan.com.au/medical_rese...
Based on published research, more than 944,000 Australians may be suffering from #mecfs. That's a big slice out of 27 million people - yet govts have contributed less than $10 million to biomedical research in 25 years. You can change this @markbutlermp.bsky.social
www.omf.ngo/estimating-l...
Report of yesterday's #mecfs event at Australia's Parliament House. (Don't be misled by the twee headline; the article is quite good.)
www.medicalrepublic.com.au/chronic-fati...
Clip from yesterday’s BBC South report about the #MECFS Alliance event on the future of #MECFS and #LongCOVID research. Sam, an ME patient, says the government failing to fund further research after the success of DecodeME is “absolutely disgraceful”.
Att'n: Aussies with or caring for ppl with #mecfs!
Parliament is hosting an advocacy day next Tue 10 March to highlight this serious & underfunded disease.
It'll only take a minute to send an automated invitation to your local MP & Senators 🔻😊🔻
Promotional graphic for Emerge Australia showing a person joining a video call on a laptop. Text reads: “New Virtual Support Groups for Carers Coming in 2026” with a “Sign Up” button and the Emerge Australia logo.
Virtual Support Groups for Carers & Supporters 🌿
Are you supporting someone living with #MECFS or #longcovid? Emerge Australia’s virtual #supportgroups offer a safe space to connect with others.
Next groups start April 2026 – zurl.co/wWIT3
"Of course the latter is a much larger group ... And of course clinicians need evidence on what is helpful for patients with idiopathic chronic fatigue. But they do not need that evidence to be presented in a document that is purportedly about the illness referred to as CFS/ME." 2/2 #mecfs
@davetuller1.bsky.social nails it again.
"Her response illustrates what has been a problem in this field for 30+ years—the conflation of chronic fatigue syndrome, as a distinct clinical entity, with the symptom of unexplained or 'idiopathic' chronic fatigue." 1/2
virology.ws/2025/09/25/t...
New, albeit small, US study. "Impaired skeletal muscle oxygen diffusion (DM ) is a shared mechanism of exercise intolerance in PASC and CFS/ME and may represent a therapeutic target." #mecfs #LongCovid
physoc.onlinelibrary.wiley.com/doi/10.14814...
Canadian study re new potential biomarker for #mecfs:
translational-medicine.biomedcentral.com/articles/10....
New Columbia study re immune system & #mecfs:
www.eurekalert.org/news-release...
reverse the long-term debility so many are experiencing.
Until then, we could all use a reminder to stop, rest, and pace. It’s especially hard when there are so many things in this life we’d all like & need to do. #ME/CFS #pwME #LongCOVID #PEM #PESE
@winstonblick.bsky.social
If you have #ME/CFS, no matter how much you want to do activities most people take for granted, exertion can make you far more ill — for days, weeks, months, or longer.
Someday, hopefully soon, we’ll be able to explain and treat the biological abnormalities behind post-exertional malaise (PEM) and
Review article re the combined effects of #mecfs & orthostatic intolerance from the University of Melbourne, Australia:
translational-medicine.biomedcentral.com/articles/10....
On the left is a photo of Dr. Jonas Bergquist. On the right is a photo of Dr. Chris Armstrong, smiling and dressed in a blue shirt. Text below the images reads: “New publication: Steroid Dynamics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Case-Control Study using Ultra Performance Supercritical Fluid Chromatography Tandem Mass Spectrometry.”
ICYMI: OMF's research centers in Uppsala and Melbourne published a study of steroid hormones. The study identified changes in steroid-steroid relationships that indicate there is a dysfunction in HPA axis function and progestogen pathways.
👉 ow.ly/Hh1z50WvrLb
From ME Research UK @meresearchuk.bsky.social :
ME Research UK-funded researcher Dr Jarred Younger has recorded a 15 minute explanation of deCodeME's recently published pre-print results. This covers background, method, results, and importance - tinyurl.com/5n6buzpj #MECFS #decodeME
Pyridostigmine Improves Hand Grip Strength in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
#ME/CFS #Pyridostigmine
@scheibenbogen.bsky.social et al.
Dr. Scheibenbogen I’d like to know if the patients in this study were also screened for gAChR auto-antibodies and if not, why?
Stanford Genome Technology Center - Community Symposium on the Molecular Basis of ME/CFS Friday, Sept. 5, 8 AM - 2:30 PM Pacific Time Speakers will "present their findings on ME/CFS, what they believe is the cause of the disease, and how they are working towards a solution." Announcement | Registration
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
New study re: #mecfs & #LongCovid crossover. Only 37 pwME, but uses ICC to select ME participants.
www.cureus.com/articles/396...
Great article by Miriam Tucker about #mecfs, #LongCovid and some other chronic illnesses: where do they belong amongst medical specialities? Includes comments from Antony Komaroff (Harvard) & Braeden Yellman (@BatemanHorne). Even discusses PEM 👏
medscape.com/viewarticle/wh…
⬇️⬇️ Huge UK study shows clear genetic links in #MyalgicEncephalomyelitis #mecfs. Way past time to boost pitiful funding levels for Australian biomedical research
@hayleygleeson.bsky.social @jasemurphy.bsky.social @sophiescott2.bsky.social @mon4kooyong.bsky.social
@markbutlermp.bsky.social
CW: Highlights of the 1999 BBC Panorama episode about ME/CFS
Dr Michael Prendergast talks about his approach of distracting children from their illness. In a talk at a Scottish Hospital he talked about taking legal action if parents resisted psychiatric treatment.
The complicity of those involved in a sick system designed to blame not only patients but their parents too.
When will it end?
Much L💙Ve to Sarah & we say her name: Maeve Boothby O’Neill 🪔🕯️💙✨💙
#SevereME #Blame #Justice #SystemicFailure #MyalgicEncephalomyelitis
www.thetimes.com/article/c5de...
Video 2: @davetuller1.bsky.social speaks with Decode ME researcher Prof Chris Ponting about the initial DecodeME findings.
youtu.be/CGUmcB_YIaA?...
Video 1: US #mecfs researcher Jarred Younger summarises @decodemestudy.bsky.social study's initial findings, released last week.
youtu.be/clwN51nkZAk?...
Teenagers with severe #MyalgicEncephalomyelitis lie in Australian hospitals for months and years. There is no treatment and nowhere else to go.
Young lives truncated by #MECFS. The situation is desperate.
Picture of Sarah Boothby at her young daughter's grave. Picture of Maeve before her illness became severe.
Authorities considered separating a UK mother from her daughter who was dying of malnutrition due to lack of treatments & systemic mishandling of #mecfs. A painfully similar situation here in Australia. You can change it @markbutlermp.bsky.social @mon4kooyong.bsky.social @racgppresident.bsky.social
International #SevereMEDay Friday 8 Aug 📣
We call on the Australian govt @albomp.bsky.social @markbutlermp.bsky.social to implement Rec 8 of your #LongCovid Report to boost #mecfs biomedical research funding. Ppl with ME/CFS are being sidelined for decades, for no good reason. You can change this!
⬆️ @jasemurphy.bsky.social
Sorry; messed up your handle in the initial post. #mecfs
US #mecfs researcher Jarryd Younger discusses initial findings from his recent brain studies. More evidence of brain inflammation and its huge effects on the body. @hayleygleeson.bsky.social @jasemurphy.bskyyoutu.be @sunsopeningband.bsky.social @davetuller1.bsky.social
youtu.be/wuzmYJxM-r0?...
