@valebodi.bsky.social
Surviving MyalgicE, AAG & CVID to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = MEdical apolide/ Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
Pinned
Reposted
Study: Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS
Published: November 07, 2025
www.cell.com/cell-reports...
Published: November 07, 2025
www.cell.com/cell-reports...
Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS
Shahbaz et al. find that female long COVID patients with ME/CFS exhibit heightened
inflammation, altered hematopoiesis, disrupted hormone levels, and neuroinflammatory
gene signatures. In parallel, ou...
www.cell.com
November 10, 2025 at 11:03 PM
Study: Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS
Published: November 07, 2025
www.cell.com/cell-reports...
Published: November 07, 2025
www.cell.com/cell-reports...
The Work You Do, the Person You Are
The pleasure of being necessary to my parents was profound. I was not like the children in folktales: burdensome mouths to feed.
What is wrong with this Toni Morrison’s ‘17 essay, would she write it today in light of everything that is going on in our society?
The pleasure of being necessary to my parents was profound. I was not like the children in folktales: burdensome mouths to feed.
What is wrong with this Toni Morrison’s ‘17 essay, would she write it today in light of everything that is going on in our society?
The Work You Do, the Person You Are
The pleasure of being necessary to my parents was profound. I was not like the children in folktales: burdensome mouths to feed.
www.newyorker.com
November 10, 2025 at 11:03 PM
The Work You Do, the Person You Are
The pleasure of being necessary to my parents was profound. I was not like the children in folktales: burdensome mouths to feed.
What is wrong with this Toni Morrison’s ‘17 essay, would she write it today in light of everything that is going on in our society?
The pleasure of being necessary to my parents was profound. I was not like the children in folktales: burdensome mouths to feed.
What is wrong with this Toni Morrison’s ‘17 essay, would she write it today in light of everything that is going on in our society?
Reposted
You can find our COVID-related updates at pmc19.com/data
In 1-3 weeks, we expect to see a significant departure from the lull.
We also post updates routinely on IG, Twitter, TikTok, and occasionally LinkedIn. 🙏
In 1-3 weeks, we expect to see a significant departure from the lull.
We also post updates routinely on IG, Twitter, TikTok, and occasionally LinkedIn. 🙏
November 8, 2025 at 6:51 AM
You can find our COVID-related updates at pmc19.com/data
In 1-3 weeks, we expect to see a significant departure from the lull.
We also post updates routinely on IG, Twitter, TikTok, and occasionally LinkedIn. 🙏
In 1-3 weeks, we expect to see a significant departure from the lull.
We also post updates routinely on IG, Twitter, TikTok, and occasionally LinkedIn. 🙏
Overall, cardiac and haematological abnormalities are present within #ME/CFS cohorts. While atherosclerotic heart disease is not significantly associated with ME/CFS, suboptimal cardiovascular function defined by reduced cardiac output, impaired cerebral blood flow, and vascular dysregulation are,
Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses
ME/CFS is a debilitating chronic condition that often develops after viral or bacterial infection. Insight from the study of Long COVID/Post Acute Sequelae of COVID-19 (PASC), the post-viral syndrome associated with SARS-CoV-2 infection, might prove ...
pmc.ncbi.nlm.nih.gov
November 10, 2025 at 8:28 PM
Overall, cardiac and haematological abnormalities are present within #ME/CFS cohorts. While atherosclerotic heart disease is not significantly associated with ME/CFS, suboptimal cardiovascular function defined by reduced cardiac output, impaired cerebral blood flow, and vascular dysregulation are,
Reposted
🧵 Important new study out in Cell Reports Medicine (Shahbaz et al. 2025):
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.
Let’s break it down layperson style 👇
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.
Let’s break it down layperson style 👇
November 8, 2025 at 11:47 AM
🧵 Important new study out in Cell Reports Medicine (Shahbaz et al. 2025):
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.
Let’s break it down layperson style 👇
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.
Let’s break it down layperson style 👇
Hearing: Long-Covid/Post-Vac
Time: Monday, 10. November 2025, 2 pm
Location: Berlin, Paul-Löbe-Haus, meeting room 4,900
The meeting is public.
#LongCOVID #PAIS
Time: Monday, 10. November 2025, 2 pm
Location: Berlin, Paul-Löbe-Haus, meeting room 4,900
The meeting is public.
#LongCOVID #PAIS
Deutscher Bundestag - Anhörung: Long-Covid/Post-Vac
Die Enquete-Kommission „Aufarbeitung der Corona-Pandemie und Lehren für zukünftige pandemische Ereignisse“ hat in ihrer 3. Sitzung am 22. September 2025 einvernehmlich beschlossen,...
www.bundestag.de
November 10, 2025 at 7:33 AM
Hearing: Long-Covid/Post-Vac
Time: Monday, 10. November 2025, 2 pm
Location: Berlin, Paul-Löbe-Haus, meeting room 4,900
The meeting is public.
#LongCOVID #PAIS
Time: Monday, 10. November 2025, 2 pm
Location: Berlin, Paul-Löbe-Haus, meeting room 4,900
The meeting is public.
#LongCOVID #PAIS
In this light, the rush to automate care is not politically neutral. To hollow out medicine’s capacity for presence and recognition is to hollow out one of the last civic institutions through which people might feel themselves to matter to another human being – to suffocate the very basis of
November 10, 2025 at 6:43 AM
In this light, the rush to automate care is not politically neutral. To hollow out medicine’s capacity for presence and recognition is to hollow out one of the last civic institutions through which people might feel themselves to matter to another human being – to suffocate the very basis of
Reposted
The shutdown is over, and fortunately all the Democrats had to give up was healthcare—you know, the thing that determines whether you live or die.
November 10, 2025 at 3:34 AM
The shutdown is over, and fortunately all the Democrats had to give up was healthcare—you know, the thing that determines whether you live or die.
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
by Johanna Rohrhofer Lilian Ebner Johannes Schweighardt @neurostingl.bsky.social and Eva Untersmayr
#ME/CFS #MCAS #POTS #OI #PEM
by Johanna Rohrhofer Lilian Ebner Johannes Schweighardt @neurostingl.bsky.social and Eva Untersmayr
#ME/CFS #MCAS #POTS #OI #PEM
www.mdpi.com
November 10, 2025 at 6:14 AM
"Autoimmunity is the cause in a subgroup of #ME/CFS, and we have made significant progress in understanding this mechanism in recent years. Therapies targeting autoantibodies promise effective treatment approaches for these patients." Prof. @scheibenbogen.bsky.social to
@miriametucker.bsky.social
@miriametucker.bsky.social
Research Into ME/CFS Pathology Points to Possible Treatments
With greater understanding of the complex pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome, researchers aim to target treatments.
www.medscape.com
November 10, 2025 at 3:34 AM
"Autoimmunity is the cause in a subgroup of #ME/CFS, and we have made significant progress in understanding this mechanism in recent years. Therapies targeting autoantibodies promise effective treatment approaches for these patients." Prof. @scheibenbogen.bsky.social to
@miriametucker.bsky.social
@miriametucker.bsky.social
Chronic Pain Prevalence, Characteristics, and Impact in United States Adults With #ME/CFS
Conclusions
Chronic pain is common among individuals with CFS/ME and is associated with diminished quality-of-life. Although not all individuals with CFS/ME experience chronic pain, a prominent proportion do
Conclusions
Chronic pain is common among individuals with CFS/ME and is associated with diminished quality-of-life. Although not all individuals with CFS/ME experience chronic pain, a prominent proportion do
Chronic Pain Prevalence, Characteristics, and Impact in United States Adults With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
To determine the prevalence of chronic pain, describe characteristics of chronic pain,
and examine the impact of chronic pain on quality-of-life in United States adults
with chronic fatigue syndrome/m...
www.painmanagementnursing.org
November 10, 2025 at 3:23 AM
Chronic Pain Prevalence, Characteristics, and Impact in United States Adults With #ME/CFS
Conclusions
Chronic pain is common among individuals with CFS/ME and is associated with diminished quality-of-life. Although not all individuals with CFS/ME experience chronic pain, a prominent proportion do
Conclusions
Chronic pain is common among individuals with CFS/ME and is associated with diminished quality-of-life. Although not all individuals with CFS/ME experience chronic pain, a prominent proportion do
Reposted
. @actionforme.bsky.social Webinar: Final findings from the LOCOME Research Project on Monday 24 November at 3pm (UK time)
www.actionforme.org.uk/webinar-fina...
us02web.zoom.us/webinar/regi...
Screenshot from Science for ME weekly update
#LongCovid #MEcfs #CFS #PwME @precisionlife.bsky.social
www.actionforme.org.uk/webinar-fina...
us02web.zoom.us/webinar/regi...
Screenshot from Science for ME weekly update
#LongCovid #MEcfs #CFS #PwME @precisionlife.bsky.social
November 9, 2025 at 11:52 PM
. @actionforme.bsky.social Webinar: Final findings from the LOCOME Research Project on Monday 24 November at 3pm (UK time)
www.actionforme.org.uk/webinar-fina...
us02web.zoom.us/webinar/regi...
Screenshot from Science for ME weekly update
#LongCovid #MEcfs #CFS #PwME @precisionlife.bsky.social
www.actionforme.org.uk/webinar-fina...
us02web.zoom.us/webinar/regi...
Screenshot from Science for ME weekly update
#LongCovid #MEcfs #CFS #PwME @precisionlife.bsky.social
Equity – Australians with #ME/CFS and #LongCOVID must have fair access to healthcare, disability and income supports.
“Living with ME/CFS is a life lived in darkness. Moments of connection are so rare that they are truly treasured. Being here today is one of those moments. It will take weeks or
“Living with ME/CFS is a life lived in darkness. Moments of connection are so rare that they are truly treasured. Being here today is one of those moments. It will take weeks or
November 9, 2025 at 11:05 PM
Equity – Australians with #ME/CFS and #LongCOVID must have fair access to healthcare, disability and income supports.
“Living with ME/CFS is a life lived in darkness. Moments of connection are so rare that they are truly treasured. Being here today is one of those moments. It will take weeks or
“Living with ME/CFS is a life lived in darkness. Moments of connection are so rare that they are truly treasured. Being here today is one of those moments. It will take weeks or
In his welcome address Professor Michael Kidd AO, Chief Medical Officer, talked to the stigma and the harrowing suffering for those living with #ME/CFS, long COVID and related energy limiting conditions. He spoke of the struggle to be believed and supported, noting the impacts of lives constrained,
On 30 October, at Australian Parliament House, @emergeaustralia.bsky.social hosted an ME/CFS and long COVID Action Forum. It was a powerful afternoon of insight, collaboration and determination to improve the lives of people living with ME/CFS, long COVID and other energy-limiting conditions.
ME/CFS and long COVID Action Forum – Emerge Australia
emerge.org.au
November 9, 2025 at 10:56 PM
In his welcome address Professor Michael Kidd AO, Chief Medical Officer, talked to the stigma and the harrowing suffering for those living with #ME/CFS, long COVID and related energy limiting conditions. He spoke of the struggle to be believed and supported, noting the impacts of lives constrained,
On 30 October, at Australian Parliament House, @emergeaustralia.bsky.social hosted an ME/CFS and long COVID Action Forum. It was a powerful afternoon of insight, collaboration and determination to improve the lives of people living with ME/CFS, long COVID and other energy-limiting conditions.
ME/CFS and long COVID Action Forum – Emerge Australia
emerge.org.au
November 9, 2025 at 10:53 PM
On 30 October, at Australian Parliament House, @emergeaustralia.bsky.social hosted an ME/CFS and long COVID Action Forum. It was a powerful afternoon of insight, collaboration and determination to improve the lives of people living with ME/CFS, long COVID and other energy-limiting conditions.
Reposted
Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study
@claguenjc36.bsky.social, Sarah TysonORCID Icon, Karen Lesliec @physiosforme.bsky.social Physio for ME, Liverpool, UK
#ME/CFS #pwME #PEM
@claguenjc36.bsky.social, Sarah TysonORCID Icon, Karen Lesliec @physiosforme.bsky.social Physio for ME, Liverpool, UK
#ME/CFS #pwME #PEM
Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study
Individuals with Myalgic Encephalomyelitis (ME) have shown altered physiological responses during maximum cardiopulmonary exercise testing. However, maximal testing is not representative of the eve...
www.tandfonline.com
November 9, 2025 at 7:43 PM
Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study
@claguenjc36.bsky.social, Sarah TysonORCID Icon, Karen Lesliec @physiosforme.bsky.social Physio for ME, Liverpool, UK
#ME/CFS #pwME #PEM
@claguenjc36.bsky.social, Sarah TysonORCID Icon, Karen Lesliec @physiosforme.bsky.social Physio for ME, Liverpool, UK
#ME/CFS #pwME #PEM
Reposted
Rapid response to:
Patients with severe #ME/CFS need hope and expert multidisciplinary care
BMJ 2025; 389 doi: doi.org/10.1136/bmj.... (Published 14 May 2025)
Cite this as: BMJ 2025;389:r977
@hildabast.bsky.social
Patients with severe #ME/CFS need hope and expert multidisciplinary care
BMJ 2025; 389 doi: doi.org/10.1136/bmj.... (Published 14 May 2025)
Cite this as: BMJ 2025;389:r977
@hildabast.bsky.social
November 9, 2025 at 3:36 AM
Rapid response to:
Patients with severe #ME/CFS need hope and expert multidisciplinary care
BMJ 2025; 389 doi: doi.org/10.1136/bmj.... (Published 14 May 2025)
Cite this as: BMJ 2025;389:r977
@hildabast.bsky.social
Patients with severe #ME/CFS need hope and expert multidisciplinary care
BMJ 2025; 389 doi: doi.org/10.1136/bmj.... (Published 14 May 2025)
Cite this as: BMJ 2025;389:r977
@hildabast.bsky.social
Reposted
Sometimes when people ask me why I’m wearing a mask I say I’m traveling or have some important thing soon and can’t afford to get sick and miss it and that’s pretty much always true but I think it would be nice if it were more normalized to just say “I don’t want to get sick” and leave it at that
November 8, 2025 at 4:49 PM
Sometimes when people ask me why I’m wearing a mask I say I’m traveling or have some important thing soon and can’t afford to get sick and miss it and that’s pretty much always true but I think it would be nice if it were more normalized to just say “I don’t want to get sick” and leave it at that
Reposted
I havent read such a banger of an essay in a very long time. This is so well-written!
Maybe Don’t Talk to the New York Times About Zohran Mamdani
It’s remarkable, the people you’ll hear from. Teach for even a little while at an expensive institution—the term they tend to prefer is “elite”—and odds are that eventually someone who was a studen…
lithub.com
November 8, 2025 at 5:37 PM
I havent read such a banger of an essay in a very long time. This is so well-written!
Reposted
The dysregulated immune system in #LongCovid with #MECFS. with sex-specific changes, increased inflammation (as seen by cells, chemokines and cytokines), and disrupted hormone levels www.cell.com/cell-reports...
November 7, 2025 at 4:00 PM
The dysregulated immune system in #LongCovid with #MECFS. with sex-specific changes, increased inflammation (as seen by cells, chemokines and cytokines), and disrupted hormone levels www.cell.com/cell-reports...
Reposted
Otago Daily Times: 'Study shows bleak long Covid picture'
'long Covid presents an ongoing and complex challenge for those affected'
'"This has left them having to self-advocate, which often comes at a high personal and financial cost"
www.odt.co.nz/news/dunedin...
'long Covid presents an ongoing and complex challenge for those affected'
'"This has left them having to self-advocate, which often comes at a high personal and financial cost"
www.odt.co.nz/news/dunedin...
Study shows bleak long Covid picture
"I almost wish I’d been in a car accident, because then at least I would have some support." It is just one of the concerning responses received...
www.odt.co.nz
November 7, 2025 at 3:55 PM
Otago Daily Times: 'Study shows bleak long Covid picture'
'long Covid presents an ongoing and complex challenge for those affected'
'"This has left them having to self-advocate, which often comes at a high personal and financial cost"
www.odt.co.nz/news/dunedin...
'long Covid presents an ongoing and complex challenge for those affected'
'"This has left them having to self-advocate, which often comes at a high personal and financial cost"
www.odt.co.nz/news/dunedin...
Circulation and more in #ME/CFS and Long COVID: Panel discussion Q & A between patients , doctors and researchers (October 2024) 🇸🇪
Circulation in ME/CFS and Long covid: Panel discussion
YouTube video by Riksförbundet för ME-patienter
youtube.com
November 8, 2025 at 3:10 AM
Circulation and more in #ME/CFS and Long COVID: Panel discussion Q & A between patients , doctors and researchers (October 2024) 🇸🇪
Reposted
Hey all you might want to check your "require alt text" setting - mine got turned off and it sounds like it's happened to others, too (presumably with recent updates).
And if you've never done this, now's a good time:
Settings → Accessibility → Require alt text before posting
And if you've never done this, now's a good time:
Settings → Accessibility → Require alt text before posting
November 7, 2025 at 9:51 PM
Hey all you might want to check your "require alt text" setting - mine got turned off and it sounds like it's happened to others, too (presumably with recent updates).
And if you've never done this, now's a good time:
Settings → Accessibility → Require alt text before posting
And if you've never done this, now's a good time:
Settings → Accessibility → Require alt text before posting