@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...

As #SevereMEDay approaches (August 8th), we want to honour those we have lost to #SevereME. We gently invite family and friends to share a memory, photo, or tribute on our 'In Loving Memory Board'. A space to remember them, through your eyes. ➡️ [https://www.kudoboard.com/boards/uGGhCBOt] #pwME

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...

News release: "People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness" www.ed.ac.uk/news/scale-o... #MEcfs #CFS #PwME

If you were too young in 2003 here is what Bush told the American people: 1) The Iraq War won’t cost a lot of money 3) We won’t need a lot of troops 4) We’ll bring peace and freedom to Iraq 5) We’ll find WMDs 6) We’ll be welcomed as liberators 7) It will be easy 8) It won’t take long All lies.

Large-scale analysis identifies hundreds of blood biomarker differences in ME/CFS patients, independent of activity levels, supporting progress toward a more reliable diagnostic approach. doi.org/g9qxjk

It's bittersweet to see the late Dr Don Lewis listed as a co-author of this study. Patients came from around Australia seeking his #mecfs expertise until terminal illness forced him to close his practice in 2019. He remains very much missed.

New UK #mecfs study. Key findings in next posts. tinyurl.com/2fthtxkp

“Long COVID and ME/CFS with David Tuller” (62 minutes) “David Tuller returns to TWiV to discuss RFK Jr. & the trashing of American public health, rituximab & ME/CFS, The Sick Times, the Cochrane Mess, a Norwegian Long Covid trial, effort preference & more” youtu.be/prA9ICYwwjY #LongCovid #MEcfs

Good article by Australian #mecfs researcher Sarah Annesley: "In June 2024, the Australian government announced A$1.1 million towards developing new clinical guidelines for diagnosing and managing ME/CFS." 1/2 theconversation.com/its-not-just...