#MillionsMissing Aus
@mmissingaus.bsky.social
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.
Pinned
Boston researchers analyzed data from over 375,000 US adults and found that nearly 1 in 7 reported long COVID by late 2023.
Those affected faced higher risks of unemployment, hardship, anxiety, and $218B in lost wages.
www.nature.com/articles/s43...
Those affected faced higher risks of unemployment, hardship, anxiety, and $218B in lost wages.
www.nature.com/articles/s43...
A nationwide study of risk factors for long COVID and its economic and mental health consequences in the United States - Communications Medicine
Kim identifies risk factors for long COVID and links long COVID to higher instances of job loss, financial hardship, and anxiety and depressive symptoms. Lost earnings due to long COVID among working-...
www.nature.com
It's almost as if ##longCovid is a real physical condition that medicine doesn't know how to treat bc they've dismissed/psychologised/gaslit ppl w the VERY similar #mecfs for decades 🤔 This is a US study but the same situation applies here. You have the power to change it @markbutlermp.bsky.social.
@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...
"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...
Trial By Error: Cochrane CFS Exercise Review "May Not Apply" to Patients Diagnosed with Newer ME/CFS Definitions, Per Lead Author | Virology Blog
By David Tuller, DrPH It’s hard to keep up with everything going on in this field these days. So I missed the fact that Lillebeth Larun, the lead author beh ...
virology.ws
September 30, 2025 at 1:58 AM
@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...
"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...
physoc.onlinelibrary.wiley.com/doi/10.14814...
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....
physoc.onlinelibrary.wiley.com
September 3, 2025 at 2:54 AM
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...
physoc.onlinelibrary.wiley.com/doi/10.14814...
Canadian study re new potential biomarker for #mecfs:
translational-medicine.biomedcentral.com/articles/10....
translational-medicine.biomedcentral.com/articles/10....
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...
translational-medicine.biomedcentral.com
September 2, 2025 at 5:16 AM
Canadian study re new potential biomarker for #mecfs:
translational-medicine.biomedcentral.com/articles/10....
translational-medicine.biomedcentral.com/articles/10....
Reposted by #MillionsMissing Aus
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
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
August 29, 2025 at 6:29 PM
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
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
Reposted by #MillionsMissing Aus
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
Someday, hopefully soon, we’ll be able to explain and treat the biological abnormalities behind post-exertional malaise (PEM) and
The worst thing about ME/CFS
YouTube video by MECFS Quotes
youtube.com
August 29, 2025 at 6:29 PM
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
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....
translational-medicine.biomedcentral.com/articles/10....
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...
translational-medicine.biomedcentral.com
August 27, 2025 at 12:02 AM
Review article re the combined effects of #mecfs & orthostatic intolerance from the University of Melbourne, Australia:
translational-medicine.biomedcentral.com/articles/10....
translational-medicine.biomedcentral.com/articles/10....
Reposted by #MillionsMissing Aus
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
👉 ow.ly/Hh1z50WvrLb
August 25, 2025 at 2:45 PM
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
👉 ow.ly/Hh1z50WvrLb
Reposted by #MillionsMissing Aus
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
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
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.
tinyurl.com
August 25, 2025 at 2:46 PM
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
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
Reposted by #MillionsMissing Aus
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?
#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?
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...
www.frontiersin.org
August 24, 2025 at 10:10 PM
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?
#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?
Reposted by #MillionsMissing Aus
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
New study re: #mecfs & #LongCovid crossover. Only 37 pwME, but uses ICC to select ME participants.
www.cureus.com/articles/396...
www.cureus.com/articles/396...
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...
www.cureus.com
August 21, 2025 at 12:39 AM
New study re: #mecfs & #LongCovid crossover. Only 37 pwME, but uses ICC to select ME participants.
www.cureus.com/articles/396...
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…
medscape.com/viewarticle/wh…
https://medscape.com/viewarticle/wh…
August 21, 2025 at 12:26 AM
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…
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
@hayleygleeson.bsky.social @jasemurphy.bsky.social @sophiescott2.bsky.social @mon4kooyong.bsky.social
@markbutlermp.bsky.social
Video 2: @davetuller1.bsky.social speaks with Decode ME researcher Prof Chris Ponting about the initial DecodeME findings.
youtu.be/CGUmcB_YIaA?...
youtu.be/CGUmcB_YIaA?...
Interview with Professor Chris Ponting about the DecodeME results.
YouTube video by David M Tuller
youtu.be
August 14, 2025 at 5:21 PM
⬇️⬇️ 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
@hayleygleeson.bsky.social @jasemurphy.bsky.social @sophiescott2.bsky.social @mon4kooyong.bsky.social
@markbutlermp.bsky.social
Reposted by #MillionsMissing Aus
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.
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.
August 12, 2025 at 7:36 AM
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.
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.
Reposted by #MillionsMissing Aus
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...
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...
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
www.thetimes.com
August 12, 2025 at 7:54 AM
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...
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?...
youtu.be/clwN51nkZAk?...
068 - New results from a (very large) ME/CFS genetics study!
YouTube video by Jarred Younger, PhD
youtu.be
August 12, 2025 at 4:48 AM
Video 1: US #mecfs researcher Jarred Younger summarises @decodemestudy.bsky.social study's initial findings, released last week.
youtu.be/clwN51nkZAk?...
youtu.be/clwN51nkZAk?...
Reposted by #MillionsMissing Aus
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.
Young lives truncated by #MECFS. The situation is desperate.
August 10, 2025 at 5:58 AM
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.
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
August 10, 2025 at 4:38 AM
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!
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!
15 years ago, after a trifecta of adverse antibiotic reactions, medical procedures & chronic pain, my body fell into the abyss of #mecfs. I knew right away that something had gone really wrong, but I didn't have enough knowledge to ask the right questions. And even if I had, no practitioner (1/7)
August 8, 2025 at 3:57 AM
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!
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?...
youtu.be/wuzmYJxM-r0?...
067 - New results: The ME/CFS brain is inflamed
YouTube video by Jarred Younger, PhD
youtu.be
August 5, 2025 at 6:39 AM
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?...
youtu.be/wuzmYJxM-r0?...
Reposted by #MillionsMissing Aus
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
#SevereMEWeek
August 4, 2025 at 8:30 AM
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
#SevereMEWeek
Reposted by #MillionsMissing Aus
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
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
August 4, 2025 at 9:30 AM
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
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
Reposted by #MillionsMissing Aus
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
