@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
WHN leading the way🙌
whn.global/yes-we-conti...
whn.global/yes-we-conti...
Yes, We Continue Wearing Masks—Here’s Why: Common Questions Answered - WHN
Picture a typical family gathering today. Most people have moved on from masking: kids run around freely, aunts and uncles chat over snacks, and only a couple of family members still choose to wear we...
whn.global
December 21, 2025 at 4:23 AM
WHN leading the way🙌
whn.global/yes-we-conti...
whn.global/yes-we-conti...
“It is critically important to ensure broad vaccination recommendations and access to COVID-19 treatments to mitigate the severity of COVID-19 in people living with comorbid conditions of any age.”
“The risk increased progressively with the number of high-risk conditions present. High-risk conclusive nonimmunocompromising conditions were associated with a greater hospitalization risk than immunocompromising conditions” www.infectiousdiseaseadvisor.com/news/risk-st...
Risk Stacking Linked to Increased COVID-19-Related Health Care Utilization
Adults with multiple high-risk conditions face higher COVID-19-related hospitalization risks than those with immunocompromising conditions alone.
www.infectiousdiseaseadvisor.com
December 29, 2025 at 1:57 PM
“It is critically important to ensure broad vaccination recommendations and access to COVID-19 treatments to mitigate the severity of COVID-19 in people living with comorbid conditions of any age.”
Reposted
The infant botulism outbreak that sickened dozens of babies who drank ByHeart formula is a reminder of how vulnerable we all are to the companies that sell us food — and how important it is to have a robust food safety system. www.statnews.com/2025/12/22/a...
American food safety could be headed for a breakdown
More Americans will be exposed to foodborne illness as a result of this year's funding cuts, food safety experts predict
www.statnews.com
December 28, 2025 at 5:11 PM
The infant botulism outbreak that sickened dozens of babies who drank ByHeart formula is a reminder of how vulnerable we all are to the companies that sell us food — and how important it is to have a robust food safety system. www.statnews.com/2025/12/22/a...
Reposted
German public radio station Deutschlandfunk has published a 3700-word article & radio piece on how #MECFS & #LongCovid impact life & autonomy. Article is titled: "Die Grenzen der Autonomie Wie Post-Covid & ME/CFS das Leben verändern”
Translation
www-deutschlandfunk-de.translate.goog/wie-postcovi...
Translation
www-deutschlandfunk-de.translate.goog/wie-postcovi...
Leben mit Post-Covid und ME/CFS: Wie sich der Umgang mit Trauer, Verlusten und Grenzen wandelt
Schmerzen und Reizüberflutung: ME/CFS ist eine Ansammlung trauriger Superlative - ein Leben in einem permanenten Krankheitsgefühl.
www-deutschlandfunk-de.translate.goog
December 29, 2025 at 1:15 PM
German public radio station Deutschlandfunk has published a 3700-word article & radio piece on how #MECFS & #LongCovid impact life & autonomy. Article is titled: "Die Grenzen der Autonomie Wie Post-Covid & ME/CFS das Leben verändern”
Translation
www-deutschlandfunk-de.translate.goog/wie-postcovi...
Translation
www-deutschlandfunk-de.translate.goog/wie-postcovi...
Reposted
Jan. 2026 study from Ohio State Univ:
'Chronic Reactivation of Persistent Human Herpesviruses EBV, HHV-6 and VZV and Heightened Anti-dUTPase IgG Antibodies Are a Recurrent Hallmark in Post-Infectious ME/CFS and is Associated With Fatigue'
pubmed.ncbi.nlm.nih.gov/41451845/
'Chronic Reactivation of Persistent Human Herpesviruses EBV, HHV-6 and VZV and Heightened Anti-dUTPase IgG Antibodies Are a Recurrent Hallmark in Post-Infectious ME/CFS and is Associated With Fatigue'
pubmed.ncbi.nlm.nih.gov/41451845/
Chronic Reactivation of Persistent Human Herpesviruses EBV, HHV-6 and VZV and Heightened Anti-dUTPase IgG Antibodies Are a Recurrent Hallmark in Post-Infectious ME/CFS and is Associated With Fatigue - PubMed
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating disease with unknown etiology and heterogeneous symptomology for which there are no validated tests for definitive diagnosis. We examined 873 longitudinal serum samples from ME/CFS patients (n = 40) and 378 from healthy co …
pubmed.ncbi.nlm.nih.gov
December 28, 2025 at 4:24 PM
Jan. 2026 study from Ohio State Univ:
'Chronic Reactivation of Persistent Human Herpesviruses EBV, HHV-6 and VZV and Heightened Anti-dUTPase IgG Antibodies Are a Recurrent Hallmark in Post-Infectious ME/CFS and is Associated With Fatigue'
pubmed.ncbi.nlm.nih.gov/41451845/
'Chronic Reactivation of Persistent Human Herpesviruses EBV, HHV-6 and VZV and Heightened Anti-dUTPase IgG Antibodies Are a Recurrent Hallmark in Post-Infectious ME/CFS and is Associated With Fatigue'
pubmed.ncbi.nlm.nih.gov/41451845/
@meresearchuk.bsky.social exists solely to inform, influence and invest in #ME/CFS biomedical research and, to date, we have invested over £5 million in biomedical research worldwide on 73 distinct projects and funded 5 PhD-level research studies. In addition, we have, alongside the Daphne Jackson
2024/25 – Our Charity Year in Review – Introduction
Our Vision and Mission ME Research UK’s vision is to end the suffering caused by ME/CFS by investing in high quality, scientific (biomedical) research into the causes, consequences and treatment(s) of...
www.meresearch.org.uk
December 29, 2025 at 1:21 PM
@meresearchuk.bsky.social exists solely to inform, influence and invest in #ME/CFS biomedical research and, to date, we have invested over £5 million in biomedical research worldwide on 73 distinct projects and funded 5 PhD-level research studies. In addition, we have, alongside the Daphne Jackson
In her first article (part II will follow) Natalie Hilliard shares insights from physiotherapy that will be of particular use to therapists and counsellors. This includes an understanding of post-exertional malaise, the challenges of trying to pace properly, and the impact of
Natalie Hilliard Physiotherapist (Part 1) - Chronic Living Therapy
Natalie Hilliard shares insights from physiotherapy, of particular use to therapists and counsellors. Eg understanding post-exertional malaise, challenges pacing properly, impact of emotional exertion...
chroniclivingtherapy.com
December 29, 2025 at 12:37 PM
In her first article (part II will follow) Natalie Hilliard shares insights from physiotherapy that will be of particular use to therapists and counsellors. This includes an understanding of post-exertional malaise, the challenges of trying to pace properly, and the impact of
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.