#MillionsMissing Aus

"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...

Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation Post-acute sequelae of SARS-CoV-2 (PASC or “long COVID”) and chronic fatigue syndrome/myalgic encephalitis (CFS/ME) share symptoms such as exertional dyspnea. We used exercise oxygen pathway analysis....

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...

Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis - Journal of Translational Medicine Background Myalgic encephalomyelitis (ME) is a chronic, multisystem illness characterized by post-exertional malaise (PEM) and cognitive dysfunction, yet the molecular mechanisms driving these hallmar...

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

YouTube video by MECFS Quotes The worst thing about ME/CFS

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

Mapping cerebral blood flow in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and orthostatic intolerance: insights from a systematic review - Journal of Translational Medicine Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating condition with a large proportion of patients that experience orthostatic intolerance (OI). This sy...

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

068 - New results from a (very large) ME/CFS genetics study! Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

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

Frontiers | Pyridostigmine Improves Hand Grip Strength in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystemicdisease characterized by exertional intolerance and fatigue which i...

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

Exploration of Intersections and Divergences of Long COVID and Chronic Fatigue Syndrome Background: Fatigue is the most common symptom of Long COVID (LC), defined by persistent or newly emerging symptoms that develop at least three months after an initial SARS-CoV-2 infection, in the abs...

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.

As my daughter died of ME, the state met in secret to blame me Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27

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...

YouTube video by David M Tuller Interview with Professor Chris Ponting about the DecodeME results.

Video 2: @davetuller1.bsky.social speaks with Decode ME researcher Prof Chris Ponting about the initial DecodeME findings.

youtu.be/CGUmcB_YIaA?...

YouTube video by Jarred Younger, PhD 068 - New results from a (very large) ME/CFS genetics study!

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

YouTube video by Jarred Younger, PhD 067 - New results: The ME/CFS brain is inflamed

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

IMAGE DESCRIPTION: Photo of a woman with ME lying in bed with an eye mask and headphones on, submitted as part of our Real ME campaign. Heading - Severe ME Awareness Week, 4th - 10th August 2025

IMAGE DESCRIPTION: Photo of a woman with ME lying in bed, submitted as part of the Real ME Campaign. Wording - 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. Severe ME Awareness Week, 4th - 10th August 2025.

IMAGE DESCRIPTION: Photo of a woman with ME lying in bed, being spoon fed by a man, submitted as part of the Real ME Campaign. Wording - The severity and intensity of ME symptoms means that people with severe ME can be housebound/bedbound for years often needing 24 hour care to maintain activities of daily living. Severe ME Awareness Week, 4th - 10th August 2025

IMAGE DESCRIPTION: Photo of a man with ME lying in bed with a eye mask on, submitted as part of the Real ME Campaign. Wording - Patients have suffered decades of misunderstanding and misconceptions, which has further compounded the effects of this life changing illness. Severe ME Awareness Week, 4th - 10th August 2025

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

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…

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