@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
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
BE A LANTERN IN THE DARKNESS | #MEAction
Be the light by helping #MEAction raise $150,000 by December 31st. We have a $50,000 matching donation so your dollars go further!
www.meaction.net
November 12, 2025 at 8:45 PM
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
Reposted
I am a strong supporter of advocacy that holds our government responsible for treating our illness with the same urgency as any other major health crisis. I trust the dedicated staff and volunteers of @meactnet.bsky.social to continue this fight, even when I can only fight from bed.
November 12, 2025 at 8:42 PM
I am a strong supporter of advocacy that holds our government responsible for treating our illness with the same urgency as any other major health crisis. I trust the dedicated staff and volunteers of @meactnet.bsky.social to continue this fight, even when I can only fight from bed.
Reposted
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
November 12, 2025 at 8:38 PM
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells in systemic lupus erythematosus Robinson Lab Stanford
#EBV #SLE #Autoimmunity
Editor’s Summary
Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
#EBV #SLE #Autoimmunity
Editor’s Summary
Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells in systemic lupus erythematosus
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells to promote pathogenic antinuclear T and B cell responses in lupus.
www.science.org
November 12, 2025 at 9:54 PM
Epstein-Barr virus reprograms autoreactive B cells as antigen-presenting cells in systemic lupus erythematosus Robinson Lab Stanford
#EBV #SLE #Autoimmunity
Editor’s Summary
Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
#EBV #SLE #Autoimmunity
Editor’s Summary
Epstein-Barr virus (EBV) has been making waves as a candidate driver of diseases like multiple sclerosis and Long Covid. It
Prof. Bhupesh Prusty’s previous research (funded by ME Research UK with the financial support of the Gordon Parish Charitable Trust) found that immunoglobulins taken from people with ME/CFS caused dysfunction of the mitochondria when mixed with cells taken from healthy individuals (these results are
Understanding the mechanism and role of autoimmunity in ME/CFS
Listen to this article Researcher Prof. Bhupesh Prusty Institution Riga Stradins University, Riga, Latvia Start date August 2025 Funding ME Research UK Background Our immune system is responsible for ...
www.meresearch.org.uk
November 12, 2025 at 7:35 PM
Prof. Bhupesh Prusty’s previous research (funded by ME Research UK with the financial support of the Gordon Parish Charitable Trust) found that immunoglobulins taken from people with ME/CFS caused dysfunction of the mitochondria when mixed with cells taken from healthy individuals (these results are
Update from Brussels on #ME/CFS research on #Mitochondria & the #ANS: Prof. Jo Nijs and Jente Van Campenhout at Vrije Universiteit Brussel are now two years into their PhD-level research project investigating the links between mitochondrial function and the autonomic nervous system in ME/CFS.
Update from Brussels
Prof. Jo Nijs and Jente Van Campenhout at Vrije Universiteit Brussel are now two years into their PhD-level research project investigating the links between mitochondrial function and the autonomic ne...
www.meresearch.org.uk
November 12, 2025 at 7:27 PM
Update from Brussels on #ME/CFS research on #Mitochondria & the #ANS: Prof. Jo Nijs and Jente Van Campenhout at Vrije Universiteit Brussel are now two years into their PhD-level research project investigating the links between mitochondrial function and the autonomic nervous system in ME/CFS.
Reposted
1) In-depth Canadian study on 78 Long Covid patients with ME/CFS. They compared these to 62 controls who were infected by SARS-CoV-2 but did not develop complications.
Too many findings to mention them all, but here are some interesting results...
Too many findings to mention them all, but here are some interesting results...
November 12, 2025 at 10:07 AM
1) In-depth Canadian study on 78 Long Covid patients with ME/CFS. They compared these to 62 controls who were infected by SARS-CoV-2 but did not develop complications.
Too many findings to mention them all, but here are some interesting results...
Too many findings to mention them all, but here are some interesting results...
Reposted
🌟 Kick off a TRIPLE MATCH Fundraiser for OMF! 🌟
Follow this link to launch in as little as 60 seconds: www.omf.ngo/digital-fundraising-toolkit/. ALL donations to your fundraiser will be tripled between November 1 -December 2, 2025!
#MECFS #LongCOVID #pwME #pwLC
Follow this link to launch in as little as 60 seconds: www.omf.ngo/digital-fundraising-toolkit/. ALL donations to your fundraiser will be tripled between November 1 -December 2, 2025!
#MECFS #LongCOVID #pwME #pwLC
November 12, 2025 at 5:14 PM
🌟 Kick off a TRIPLE MATCH Fundraiser for OMF! 🌟
Follow this link to launch in as little as 60 seconds: www.omf.ngo/digital-fundraising-toolkit/. ALL donations to your fundraiser will be tripled between November 1 -December 2, 2025!
#MECFS #LongCOVID #pwME #pwLC
Follow this link to launch in as little as 60 seconds: www.omf.ngo/digital-fundraising-toolkit/. ALL donations to your fundraiser will be tripled between November 1 -December 2, 2025!
#MECFS #LongCOVID #pwME #pwLC
The pulse of the situation in the UK for #pwME and their carers:
“Nothing #ME/CFS specific, no ring-fenced funding, no attempt to redress historic underfunding of ME/CFS biomedical research, and no plan.”
x.com/meresearchuk...
“Nothing #ME/CFS specific, no ring-fenced funding, no attempt to redress historic underfunding of ME/CFS biomedical research, and no plan.”
x.com/meresearchuk...
x.com
November 12, 2025 at 5:36 PM
The pulse of the situation in the UK for #pwME and their carers:
“Nothing #ME/CFS specific, no ring-fenced funding, no attempt to redress historic underfunding of ME/CFS biomedical research, and no plan.”
x.com/meresearchuk...
“Nothing #ME/CFS specific, no ring-fenced funding, no attempt to redress historic underfunding of ME/CFS biomedical research, and no plan.”
x.com/meresearchuk...
Reposted
My mother got quoted in the Washington Post.
From a Washington Post story titled "How women feel about Trump’s presidency"
November 11, 2025 at 6:51 PM
My mother got quoted in the Washington Post.
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.