New paper from Todd Davenport & colleagues demonstrating the paradoxical effects of exercise on ppl w #mecfs & #LongCovid "ME/CFS and Long COVID both involve a functionally significant bioenergetic failure complicated by inadequate post-exertional recovery ... " link.springer.com/article/10.1...

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 🔻😊🔻

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

@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....

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 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 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.

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!

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?...

It is estimated that 25% of people with #ME have severe or very severe ME. This means they are housebound (severe) or bedbound (very severe) and need support with activities of daily living. #SevereMEWeek

1/4 This week in Severe ME Awareness Week, 4th - 10th August 2025 It is estimated that at least 404,000 people in the UK have ME and around 25% of these people may have severe or very severe symptoms for prolonged periods. https://meassociation.org.uk/me-cfs-severe-me-week/ #SevereME #SMEWeek2025

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

Learned earlier this evening that the #MECFS Collaborative Research Center at Columbia's funding was restored... it's a huge relief to know that their work will move forward. Congrats to the whole lab! 🧪 #NEISvoid

Great interview excerpt featuring a NZ woman who's a long-term #pwME. Her experience echoes that of ppl with #mecfs worldwide. Even in countries where treatment guidelines have bn updated to disavow graded exercise therapy (US, UK etc), many medical staff remain ignorant. youtu.be/Hxoqd0KCj98?...

Join us for #SevereMEDay2025 where we discuss Invisible Lives, Visible Care. Hear from people like Tristan who could benefit immensely from consistent, in-home medical care. Symposium on 8th August at 2pm (AEST). Register here: vist.ly/3zh63

Just published Steroid dynamics in myalgic encephalomyelitis / chronic fatigue syndrome: a case-control study using ultra performance supercritical fluid chromatography tandem mass spectrometry translational-medicine.biomedcentral.com/articles/10.... #ME/CFS @openmedf.bsky.social

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. 👉 Read the paper summary: ow.ly/eiNt50WvrLa

New York and California study of 108 people finds that ME/CFS patients show abnormal immune, metabolic, and mitochondrial responses to exercise, linking post-exertional malaise to chronic inflammation, energy disruption, and gut dysbiosis. www.medrxiv.org/content/10.1...

My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that: www.bmj.com/content/389/... #MECFS

"Millions suffering from [ME/CFS] ... may be closer to personalized care, according to new research that shows how the disease disrupts interactions between the microbiome, immune system, and metabolism." New research from Derya Unumatz's lab 🙂 medicalxpress.com/news/2025-07...

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome Particularly relevant when similarities with the #LongCovid presentation in some people are being missed #MEcfs #CFS #PwLC 1/

The BMJ has not published a rapid resopnse from Maeve Boothby O'Neill's mum, @swastrosarah.bsky.social‬, to its ME/CFS "hope" propaganda piece from members of the biopsychosocial ideological brigades. So I have posted it here. virology.ws/2025/07/23/t...

New study tests IV saline in ME/CFS with dysautonomia. Saline, often a placebo in trials, showed some symptom relief but no objective improvements. Important to know saline’s effects to interpret drug trial results. Full study: www.frontiersin.org/journals/neu...

"Many ... underlying abnormalities worsened following exercise in ME/CFS patients, but not in healthy subjects; many abnormalities reinforced each other and several were correlated with the intensity of symptoms." Stellar line-up of authors in this #mecfs pre-print: www.medrxiv.org/content/10.1...

Aussie journalist 'Jack the Insider' speaks with Peter McCluskey. He's carer for his wife & daughter, who have #mecfs. His experience highlights the urgent need for biomedical research funding & better #NDIS access @markbutlermp.bsky.social @mon4kooyong.bsky.social open.spotify.com/episode/3Ux2...

On US/Swedish research: "Immune Markers Help Identify Subgroups of ME/CFS Patients: Proteins involved in neuroinflammation found in the cerebrospinal fluid could help researchers better diagnose and treat chronic fatigue syndrome" www.the-scientist.com/profiling-im... #MEcfs #CFS #PwME

Review of a new #mecfs & post-Covid ME/CFS book by Patrick Ussher. Reviewer says it knocks psychosomatic/deconditioning paradigm on the head & looks at the disease as the multi-systemic entity that it actually is. www.medicalindependent.ie/life/book-re...

This large UK study found 116 markers indicating biological differences between ppl with #mecfs and healthy controls. These differences were NOT affected by activity. Take that, graded exercise proponents!! virology.ws/2025/06/23/t...

#mecfs researcher Sarah Annesley's article for The Conversation has been picked up by @croakeynews.bsky.social. Good to see biomedical researchers getting more coverage in Aussie media (or any media, for that matter!) Don't let the stock pic put you off 😏🤓 www.croakey.org/new-clinical...