@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
"Our data show that chronic inflammation, T cell exhaustion, metabolic dysregulation and upregulation of the JAK-STAT and interleukin-6 (IL-6) signaling pathways are key features of LC."
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Long COVID involves activation of proinflammatory and immune exhaustion pathways - Nature Immunology
Long COVID (LC) involves a spectrum of chronic symptoms after resolution of acute severe acute respiratory syndrome coronavirus 2 infection. Barouch and colleagues show that LC is characterized by per...
www.nature.com
December 14, 2025 at 11:47 PM
"Our data show that chronic inflammation, T cell exhaustion, metabolic dysregulation and upregulation of the JAK-STAT and interleukin-6 (IL-6) signaling pathways are key features of LC."
www.nature.com/articles/s41...
www.nature.com/articles/s41...
In both diseases, though, the mitochondria in the muscles appeared to be under severe stress. The mitochondria in muscle tissues exposed to #ME/CFS serum were “wired” to the gills; i.e., they were eating up oxygen at a high clip. The increased expression of an enzyme suggested one possible reason:
December 28, 2025 at 6:45 PM
In both diseases, though, the mitochondria in the muscles appeared to be under severe stress. The mitochondria in muscle tissues exposed to #ME/CFS serum were “wired” to the gills; i.e., they were eating up oxygen at a high clip. The increased expression of an enzyme suggested one possible reason:
Reposted
4. With this in mind, ignore anyone who mocks you for taking precautions to protect yourself and others. Their mocking comes from ignorance, and their ignorance comes from denial.
/end
/end
December 28, 2025 at 11:45 AM
4. With this in mind, ignore anyone who mocks you for taking precautions to protect yourself and others. Their mocking comes from ignorance, and their ignorance comes from denial.
/end
/end
Reposted
3. In many countries, politics and the institutionalisation of anti-vax and pro-infection ideologies are actually encouraging this outcome. This is, to the best of my knowledge, unprecedented in human history: Humanity being overtly on the side of the virus, basically.
December 28, 2025 at 11:45 AM
3. In many countries, politics and the institutionalisation of anti-vax and pro-infection ideologies are actually encouraging this outcome. This is, to the best of my knowledge, unprecedented in human history: Humanity being overtly on the side of the virus, basically.
Reposted
2. Simultaneously, the immune dysregulation effect of infection will continue to create opportunities for other pathogens to infect, disable, and kill. One of those pathogens might well start the next pandemic.
December 28, 2025 at 11:45 AM
2. Simultaneously, the immune dysregulation effect of infection will continue to create opportunities for other pathogens to infect, disable, and kill. One of those pathogens might well start the next pandemic.
Reposted
1. Sometimes, the absurdity of the situation we're all in just hits me. Going forward, ongoing and continuous transmission of SARS-CoV-2 will lead to an ever-increasing percentage of the global population developing chronic illnesses due to sequelae of infection.
December 28, 2025 at 11:45 AM
1. Sometimes, the absurdity of the situation we're all in just hits me. Going forward, ongoing and continuous transmission of SARS-CoV-2 will lead to an ever-increasing percentage of the global population developing chronic illnesses due to sequelae of infection.
He has a political organization called "Forward America Association" which has millions of fervent followers He envies dictators. He is consorting with the enemy. He is plotting to use social media to turn American against American. Only a free press stands in his way.
Keeper of the Flame 1942
Keeper of the Flame 1942
December 28, 2025 at 5:46 PM
He has a political organization called "Forward America Association" which has millions of fervent followers He envies dictators. He is consorting with the enemy. He is plotting to use social media to turn American against American. Only a free press stands in his way.
Keeper of the Flame 1942
Keeper of the Flame 1942
Reposted
“I am aware that I am arriving late to a story others have been living for decades. I am aware that much of what helps me now exists because others endured without recognition, without support, and without relief. Being welcomed into that shared knowledge carries weight.”
December 26, 2025 at 2:31 PM
“I am aware that I am arriving late to a story others have been living for decades. I am aware that much of what helps me now exists because others endured without recognition, without support, and without relief. Being welcomed into that shared knowledge carries weight.”
Reposted
A quote from my recent piece about my gratitude to the Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community, Those Who Were Already Here. Please check it out and let me know your thoughts. #LongCovid #MECFS
December 26, 2025 at 2:31 PM
A quote from my recent piece about my gratitude to the Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community, Those Who Were Already Here. Please check it out and let me know your thoughts. #LongCovid #MECFS
Reposted
A quote from my new piece, “Those Who Were Already Here.” About my gratitude to the Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). #MECFS #LongCOVID #ChronicIllness
substack.com/home/post/p-...
substack.com/home/post/p-...
December 28, 2025 at 5:22 PM
A quote from my new piece, “Those Who Were Already Here.” About my gratitude to the Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). #MECFS #LongCOVID #ChronicIllness
substack.com/home/post/p-...
substack.com/home/post/p-...
Reposted
"The brutal truth is this: living with PEM means making impossible choices every single day. Work or social life. Basic functioning or relationships. Today’s activity or tomorrow’s capacity."
-- Fred Rossi (@darthfoo.bsky.social)
-- Fred Rossi (@darthfoo.bsky.social)
November 24, 2025 at 10:32 PM
"The brutal truth is this: living with PEM means making impossible choices every single day. Work or social life. Basic functioning or relationships. Today’s activity or tomorrow’s capacity."
-- Fred Rossi (@darthfoo.bsky.social)
-- Fred Rossi (@darthfoo.bsky.social)
Reposted
"Why I Can't Just Meet You for Dinner"
Article by Fred Rossi on the hard and complex realities of #PEM [post-exertional malaise] which are unrecognised by the outside world.
substack.com/home/post/p-...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid
Article by Fred Rossi on the hard and complex realities of #PEM [post-exertional malaise] which are unrecognised by the outside world.
substack.com/home/post/p-...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid
December 1, 2025 at 12:20 AM
"Why I Can't Just Meet You for Dinner"
Article by Fred Rossi on the hard and complex realities of #PEM [post-exertional malaise] which are unrecognised by the outside world.
substack.com/home/post/p-...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid
Article by Fred Rossi on the hard and complex realities of #PEM [post-exertional malaise] which are unrecognised by the outside world.
substack.com/home/post/p-...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid
Reposted
4/
“(Contd) The quiet satisfaction of being understood without explanation. The peace of being believed.
These moments are not small. They are survival.”
#LongCovid #CFS #MEcfs #PASC
“(Contd) The quiet satisfaction of being understood without explanation. The peace of being believed.
These moments are not small. They are survival.”
#LongCovid #CFS #MEcfs #PASC
December 28, 2025 at 3:28 PM
4/
“(Contd) The quiet satisfaction of being understood without explanation. The peace of being believed.
These moments are not small. They are survival.”
#LongCovid #CFS #MEcfs #PASC
“(Contd) The quiet satisfaction of being understood without explanation. The peace of being believed.
These moments are not small. They are survival.”
#LongCovid #CFS #MEcfs #PASC
Reposted
3/
“(Contd) It has given structure to lives that otherwise might have dissolved into trial and error.
There is happiness in that. Not happiness as cure, but happiness as competence. The relief of knowing how to get through a day without triggering collapse.”
#PostCovid #PwME #LongCovid #MEcfs
“(Contd) It has given structure to lives that otherwise might have dissolved into trial and error.
There is happiness in that. Not happiness as cure, but happiness as competence. The relief of knowing how to get through a day without triggering collapse.”
#PostCovid #PwME #LongCovid #MEcfs
December 28, 2025 at 3:25 PM
3/
“(Contd) It has given structure to lives that otherwise might have dissolved into trial and error.
There is happiness in that. Not happiness as cure, but happiness as competence. The relief of knowing how to get through a day without triggering collapse.”
#PostCovid #PwME #LongCovid #MEcfs
“(Contd) It has given structure to lives that otherwise might have dissolved into trial and error.
There is happiness in that. Not happiness as cure, but happiness as competence. The relief of knowing how to get through a day without triggering collapse.”
#PostCovid #PwME #LongCovid #MEcfs
Reposted
2/
“The ME/CFS community has done real work. Patient-led research. Shared strategies. Careful documentation of symptoms & patterns. Support systems built in forums, emails, & private messages. This work has protected people from making themselves worse. (contd)”
#LongCovid #MEcfs #PwME #PostCovid
“The ME/CFS community has done real work. Patient-led research. Shared strategies. Careful documentation of symptoms & patterns. Support systems built in forums, emails, & private messages. This work has protected people from making themselves worse. (contd)”
#LongCovid #MEcfs #PwME #PostCovid
December 28, 2025 at 3:21 PM
2/
“The ME/CFS community has done real work. Patient-led research. Shared strategies. Careful documentation of symptoms & patterns. Support systems built in forums, emails, & private messages. This work has protected people from making themselves worse. (contd)”
#LongCovid #MEcfs #PwME #PostCovid
“The ME/CFS community has done real work. Patient-led research. Shared strategies. Careful documentation of symptoms & patterns. Support systems built in forums, emails, & private messages. This work has protected people from making themselves worse. (contd)”
#LongCovid #MEcfs #PwME #PostCovid
Reposted
🧵
"Those Who Were Already Here"
centerleftstack.substack.com/p/those-who-...
Nice to see this new blog post recognising that the ME/CFS community have much in common with the long Covid community and have helped some with the latter.
#MEcfs #CFS #PwME #LongCovid
1/
"Those Who Were Already Here"
centerleftstack.substack.com/p/those-who-...
Nice to see this new blog post recognising that the ME/CFS community have much in common with the long Covid community and have helped some with the latter.
#MEcfs #CFS #PwME #LongCovid
1/
December 28, 2025 at 2:44 PM
🧵
"Those Who Were Already Here"
centerleftstack.substack.com/p/those-who-...
Nice to see this new blog post recognising that the ME/CFS community have much in common with the long Covid community and have helped some with the latter.
#MEcfs #CFS #PwME #LongCovid
1/
"Those Who Were Already Here"
centerleftstack.substack.com/p/those-who-...
Nice to see this new blog post recognising that the ME/CFS community have much in common with the long Covid community and have helped some with the latter.
#MEcfs #CFS #PwME #LongCovid
1/
Give Fred Rossi a follow on Substack if you want to understand #LongCOVID and #ME/CFS at their real physiological survival core:
The Work That Was Already Done
“There is a temptation to describe perseverance in clean, inspirational terms. That framing does not survive contact with this illness.
The Work That Was Already Done
“There is a temptation to describe perseverance in clean, inspirational terms. That framing does not survive contact with this illness.
Those Who Were Already Here
Learning to Live Inside a History I Did Not Choose
centerleftstack.substack.com
December 28, 2025 at 5:27 PM
Give Fred Rossi a follow on Substack if you want to understand #LongCOVID and #ME/CFS at their real physiological survival core:
The Work That Was Already Done
“There is a temptation to describe perseverance in clean, inspirational terms. That framing does not survive contact with this illness.
The Work That Was Already Done
“There is a temptation to describe perseverance in clean, inspirational terms. That framing does not survive contact with this illness.
Reposted
Keeper of the Flame (1942), starring Katharine Hepburn & Spencer Tracy.
December 28, 2025 at 1:47 PM
Keeper of the Flame (1942), starring Katharine Hepburn & Spencer Tracy.
Reposted
Long COVID, Immune Dysregulation & What It Means for Kids — New Insights and Future Therapies
danilobuonsenso.substack.com/p/long-covid...
danilobuonsenso.substack.com/p/long-covid...
Long COVID, Immune Dysregulation & What It Means for Kids — New Insights and Future Therapies
Long COVID isn’t just a collection of lingering symptoms — it may reflect deep changes in the immune system that can persist for years.
danilobuonsenso.substack.com
December 28, 2025 at 3:21 PM
Long COVID, Immune Dysregulation & What It Means for Kids — New Insights and Future Therapies
danilobuonsenso.substack.com/p/long-covid...
danilobuonsenso.substack.com/p/long-covid...
Mucosal Viruses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Missing Piece of the Puzzle?
by Krishani Dinali Per-era, Paige Cameron, Tayyibah Sarwar and Simon R. Carding
#ME/CFS
by Krishani Dinali Per-era, Paige Cameron, Tayyibah Sarwar and Simon R. Carding
#ME/CFS
www.mdpi.com
December 28, 2025 at 4:12 AM
Mucosal Viruses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Missing Piece of the Puzzle?
by Krishani Dinali Per-era, Paige Cameron, Tayyibah Sarwar and Simon R. Carding
#ME/CFS
by Krishani Dinali Per-era, Paige Cameron, Tayyibah Sarwar and Simon R. Carding
#ME/CFS
Among the more than 200 very important scientific papers affiliated with @uoe-igc.bsky.social , the one on M.E. aka #ME/CFS’ genetics of Prof. @cgatist.bsky.social et al., the @decodemestudy.bsky.social, deservedly made it into the news
Of more than 200 papers affiliated with IGC published in 2025, here are some that made it into the news 👇
December 28, 2025 at 3:58 AM
Among the more than 200 very important scientific papers affiliated with @uoe-igc.bsky.social , the one on M.E. aka #ME/CFS’ genetics of Prof. @cgatist.bsky.social et al., the @decodemestudy.bsky.social, deservedly made it into the news
Reposted
Of the hundreds of millions of people living with IBS worldwide, about two-thirds are women.
Now, researchers have identified a biological pathway in the guts of mice that may help explain this disproportionate toll—a finding that could one day lead to new treatments. https://scim.ag/3YD8H78
Now, researchers have identified a biological pathway in the guts of mice that may help explain this disproportionate toll—a finding that could one day lead to new treatments. https://scim.ag/3YD8H78
Why are women more likely to get irritable bowel syndrome? New study provides clues
Cells in the guts of female mice respond to estrogen by increasing pain signaling, researchers find
scim.ag
December 26, 2025 at 5:30 PM
Of the hundreds of millions of people living with IBS worldwide, about two-thirds are women.
Now, researchers have identified a biological pathway in the guts of mice that may help explain this disproportionate toll—a finding that could one day lead to new treatments. https://scim.ag/3YD8H78
Now, researchers have identified a biological pathway in the guts of mice that may help explain this disproportionate toll—a finding that could one day lead to new treatments. https://scim.ag/3YD8H78
My “Idiopathic” Facial Pain and Flushing Isn’t Stress or Anxiety—It’s Small-Fiber Neuropathy
By Liz
As a scientist, I have been able to read many of the published papers on small-fiber neuropathy (SFN). I am impressed that the small-fiber diagnosis can tie together seemingly
By Liz
As a scientist, I have been able to read many of the published papers on small-fiber neuropathy (SFN). I am impressed that the small-fiber diagnosis can tie together seemingly
My “Idiopathic” Facial Pain and Flushing Isn’t Stress or Anxiety—It’s Small-Fiber Neuropathy | NeuropathyCommons
neuropathycommons.org
December 28, 2025 at 3:13 AM
My “Idiopathic” Facial Pain and Flushing Isn’t Stress or Anxiety—It’s Small-Fiber Neuropathy
By Liz
As a scientist, I have been able to read many of the published papers on small-fiber neuropathy (SFN). I am impressed that the small-fiber diagnosis can tie together seemingly
By Liz
As a scientist, I have been able to read many of the published papers on small-fiber neuropathy (SFN). I am impressed that the small-fiber diagnosis can tie together seemingly
“The flu shot is not glamorous. It doesn’t make headlines. But it is one of the simplest ways we protect the people around us — children, older adults, immunocompromised neighbors, co-workers who can’t afford missed work. It’s a minor gesture with major effects, the kind that often goes unnoticed
What giving flu shots backstage taught me about public health
On or off Broadway, public health lives or dies at the level of ordinary, everyday interactions.
www.statnews.com
December 27, 2025 at 11:26 PM
“The flu shot is not glamorous. It doesn’t make headlines. But it is one of the simplest ways we protect the people around us — children, older adults, immunocompromised neighbors, co-workers who can’t afford missed work. It’s a minor gesture with major effects, the kind that often goes unnoticed