@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
UK
A report by the Covid inquiry into political decision-making during the pandemic proves that the “horrific” and disproportionate death toll among disabled people was not inevitable but the result of treating them as an “afterthought”, say campaigners.
www.disabilitynewsservice.com/inquiry-repo...
A report by the Covid inquiry into political decision-making during the pandemic proves that the “horrific” and disproportionate death toll among disabled people was not inevitable but the result of treating them as an “afterthought”, say campaigners.
www.disabilitynewsservice.com/inquiry-repo...
Inquiry report shows ‘horrific’ Covid death toll among disabled people was not inevitable, say DPOs
A report by the Covid inquiry into political decision-making during the pandemic proves that the “horrific” and disproportionate death toll among disabled people was not inevitable but the result o…
www.disabilitynewsservice.com
November 28, 2025 at 7:35 PM
UK
A report by the Covid inquiry into political decision-making during the pandemic proves that the “horrific” and disproportionate death toll among disabled people was not inevitable but the result of treating them as an “afterthought”, say campaigners.
www.disabilitynewsservice.com/inquiry-repo...
A report by the Covid inquiry into political decision-making during the pandemic proves that the “horrific” and disproportionate death toll among disabled people was not inevitable but the result of treating them as an “afterthought”, say campaigners.
www.disabilitynewsservice.com/inquiry-repo...
Former German Health Minister Karl Lauterbach and the Federal Chairman of the German Association of General Practitioners, Markus Beier, are calling for free access to medication for #ME/CFS patients. Beier is also demanding a reduction in bureaucracy for those affected.
#pwME
#pwME
Ex-Gesundheitsminister Karl Lauterbach und der Bundesvorsitzende des Hausärzteverbandes Markus Beier fordern einen kostenlosen Zugang zu Medikamenten für ME/CFS-Patient*innen. Beier fordert zudem einen Abbau der Bürokratie für Betroffene.
rp-online.de/politik/deut...
#MECFS #LongCOVID
rp-online.de/politik/deut...
#MECFS #LongCOVID
Regierung steckt mehr Geld in Forschung: Lauterbach will kostenlose Medikamente für ME/CFS-Erkrankte
Hunderttausende Menschen in Deutschland leiden an dem chronischen Erschöpfungssyndrom ME/CFS. Offiziell gibt es noch kein zugelassenes Medikament – bestimmte Mittel können aber trotzdem helfen. Ex-Ges...
rp-online.de
November 28, 2025 at 8:47 PM
Reposted
The big picture on the undermining of the most successful vaccine in history is even worse.
bsky.app/profile/neil...
bsky.app/profile/neil...
November 28, 2025 at 5:05 PM
The big picture on the undermining of the most successful vaccine in history is even worse.
bsky.app/profile/neil...
bsky.app/profile/neil...
Reposted
The magnitude of the change over time is striking.
www.nbcnews.com/health/healt...
www.nbcnews.com/health/healt...
November 28, 2025 at 3:50 PM
The magnitude of the change over time is striking.
www.nbcnews.com/health/healt...
www.nbcnews.com/health/healt...
When only MAID appears as a way out
The German Society for Assistance in Dying is seeing more requests from young people with #ME/CFS, a serious neuro-immuno-metabolic disease, which can also follow & be triggered by COVID-19, who ask for help with ending their extreme suffering.
The German Society for Assistance in Dying is seeing more requests from young people with #ME/CFS, a serious neuro-immuno-metabolic disease, which can also follow & be triggered by COVID-19, who ask for help with ending their extreme suffering.
Long Covid und Selbsttötung: Wenn nur der Suizid als Ausweg erscheint
Suizidhelfer verzeichnen mehr Anträge von jungen Menschen mit ME/CFS-Erkrankung, darunter auch Post Covid, die Hilfe zur Selbsttötung erbitten.
taz.de
November 28, 2025 at 4:22 PM
When only MAID appears as a way out
The German Society for Assistance in Dying is seeing more requests from young people with #ME/CFS, a serious neuro-immuno-metabolic disease, which can also follow & be triggered by COVID-19, who ask for help with ending their extreme suffering.
The German Society for Assistance in Dying is seeing more requests from young people with #ME/CFS, a serious neuro-immuno-metabolic disease, which can also follow & be triggered by COVID-19, who ask for help with ending their extreme suffering.
Reposted
Happy Thanksgiving.
Bird flu virus could risk pandemic worse than COVID if it mutates, France's Institut Pasteur says
The bird flu virus that has been spreading among wild birds, poultry and mammals could lead to a pandemic worse than COVID-19 if it mutates to transmit between humans, the head of France's Institut Pa...
www.reuters.com
November 27, 2025 at 4:59 PM
Happy Thanksgiving.
How co-infections may induce post-acute sequelae of SARS-CoV-2 (PASC).
By presenting the incoming SARS-CoV-2 with a microenvironment that is already immunologically or functionally altered.
By reactivating from latent reservoirs during acute or convalescent COVID-19.
By taking advantage of
By presenting the incoming SARS-CoV-2 with a microenvironment that is already immunologically or functionally altered.
By reactivating from latent reservoirs during acute or convalescent COVID-19.
By taking advantage of
The role of co-infection in the pathogenesis of acute SARS-CoV-2 infection and development of post-acute sequelae: A perspective
Unraveling mechanisms underlying post-acute SARS-CoV-2 sequelae (long COVID) and finding therapeutic solutions require a full understanding of the causative role of SARS-CoV-2 persistence and/or infec...
elifesciences.org
November 27, 2025 at 6:24 PM
How co-infections may induce post-acute sequelae of SARS-CoV-2 (PASC).
By presenting the incoming SARS-CoV-2 with a microenvironment that is already immunologically or functionally altered.
By reactivating from latent reservoirs during acute or convalescent COVID-19.
By taking advantage of
By presenting the incoming SARS-CoV-2 with a microenvironment that is already immunologically or functionally altered.
By reactivating from latent reservoirs during acute or convalescent COVID-19.
By taking advantage of
Reposted
As well as some appalling ones from the UK ME Services stock take by the ME Local Network showing that 4 years after the updated NICE guidelines, 70% of UK Adult Services are still not compliant (No surprise though given most are bacme run!)
November 27, 2025 at 6:03 PM
As well as some appalling ones from the UK ME Services stock take by the ME Local Network showing that 4 years after the updated NICE guidelines, 70% of UK Adult Services are still not compliant (No surprise though given most are bacme run!)
Reposted
Awesome to see @rorpreston.bsky.social and team keep adding more graphs and data to their brilliant website at crunchme.org!
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
CrunchME - Data & Research Visuals
Shareable visuals giving insight into key aspects of ME/CFS, long COVID, and other infection-associated chronic illnesses
crunchme.org
November 27, 2025 at 5:13 PM
Awesome to see @rorpreston.bsky.social and team keep adding more graphs and data to their brilliant website at crunchme.org!
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
Reposted
Scientist @hanspeterarp.bsky.social warns, "It’s accumulating in our tap water, the food we’re eating, plants, trees, the sea, + all in the past few decades”. David Behringer adds, “If you’re drinking water, you’re drinking a lot of TFA, wherever you are in the world"
share.google/SZMY7DfaVk9U...
share.google/SZMY7DfaVk9U...
Rapidly rising levels of TFA ‘forever chemical’ alarm experts
Trifluoroacetic acid found in drinking water and rain is thought to damage fertility and child development
share.google
November 27, 2025 at 11:47 AM
Scientist @hanspeterarp.bsky.social warns, "It’s accumulating in our tap water, the food we’re eating, plants, trees, the sea, + all in the past few decades”. David Behringer adds, “If you’re drinking water, you’re drinking a lot of TFA, wherever you are in the world"
share.google/SZMY7DfaVk9U...
share.google/SZMY7DfaVk9U...
Reposted
Can you imagine a vaccine that prevents and protects our sons and daughters from cancer?!!?Can you imagine denying our children this protection?!?Vaccination works & science is marvellous 😊
November 26, 2025 at 10:56 PM
Can you imagine a vaccine that prevents and protects our sons and daughters from cancer?!!?Can you imagine denying our children this protection?!?Vaccination works & science is marvellous 😊
Reposted
An incredibly important read from our friend @seemiaroll.bsky.social
"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
Weakening the IDEA Threatens Millions of Disabled Americans Like Me
Ives-Rublee: Federal law made it possible for disabled students like me to go to school. Those opportunities may vanish for the next generation.
www.the74million.org
November 26, 2025 at 11:07 PM
An incredibly important read from our friend @seemiaroll.bsky.social
"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
"Obtaining an education is one of the best ways to help disabled people secure a stable income—and by weakening the IDEA, the Trump administration is trying to take those opportunities away."
Reposted
If you're interested, this tribute to Alice Wong was written by one of the people who knew her best
www.thenation.com/article/soci...
www.thenation.com/article/soci...
A Tribute to an Oracle, Alice Wong
Alice had the ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated.
www.thenation.com
November 26, 2025 at 11:18 PM
If you're interested, this tribute to Alice Wong was written by one of the people who knew her best
www.thenation.com/article/soci...
www.thenation.com/article/soci...
Reposted
Considering holding a pay-as-you're-able talk. People in the #NEISvoid, what would you consider valuable to you? Please do share as well ❤️
November 18, 2025 at 4:40 PM
Considering holding a pay-as-you're-able talk. People in the #NEISvoid, what would you consider valuable to you? Please do share as well ❤️
“The function of the comparison to AIDS relates to how societies react to those viral threats, to get people to understand that this is serious. Not just for us, but likely for you too.”
Via @drelke.bsky.social
#LongCOVID #PAIS
Via @drelke.bsky.social
#LongCOVID #PAIS
November 26, 2025 at 3:24 PM
“The function of the comparison to AIDS relates to how societies react to those viral threats, to get people to understand that this is serious. Not just for us, but likely for you too.”
Via @drelke.bsky.social
#LongCOVID #PAIS
Via @drelke.bsky.social
#LongCOVID #PAIS
Reposted
8) You can support OMF's work by donating using this form:
www.omf.ngo/?form=do...
All donations to OMF are tripled until December 2, 2025.
www.omf.ngo/?form=do...
All donations to OMF are tripled until December 2, 2025.
OMF Home - Open Medicine Foundation
ME/CFS & Long COVID are life-altering illnesses. Together, we can move research further, faster.
www.omf.ngo
November 26, 2025 at 9:34 AM
8) You can support OMF's work by donating using this form:
www.omf.ngo/?form=do...
All donations to OMF are tripled until December 2, 2025.
www.omf.ngo/?form=do...
All donations to OMF are tripled until December 2, 2025.
Reposted
7) The video also includes insights from another OMF director, Dr. Wenzhong Xiao, who comments about current data and exploring treatment options, including supplements.
Link:
Link:
An Interview with Chris Armstrong, PhD and Wenzhong Xiao, PhD
In an interview with Dr. Chris Armstrong and Dr. Wenzhong Xiao, two of OMF’s Directors, they talk about what they think is going on in ME/CFS, including differences in producing energy and the immune and central nervous systems being out of balance.
All donations to OMF are TRIPLED until December 2
www.youtube.com
November 26, 2025 at 9:34 AM
7) The video also includes insights from another OMF director, Dr. Wenzhong Xiao, who comments about current data and exploring treatment options, including supplements.
Link:
Link:
Reposted
6) They are exploring this further in the large BioQuest study. It plans to measure many proteins and metabolites in blood samples of up to 1000 patients and controls that have already been collected.
More info about this study here:
More info about this study here:
Update: A large-scale ME/CFS biomarker project (BioQuest) - Open Medicine Foundation
Explore OMF’s BioQuest, a large-scale ME/CFS biomarker study looking at metabolomics, proteomics, and cytokines.
www.omf.ngo
November 26, 2025 at 9:33 AM
6) They are exploring this further in the large BioQuest study. It plans to measure many proteins and metabolites in blood samples of up to 1000 patients and controls that have already been collected.
More info about this study here:
More info about this study here:
Reposted
5) Dr. Armstrong connects this to his findings of metabolomics studies, which OMF focuses on. They found changes in amino acids and lipids in ME/CFS: those two things seem to stand out.
And these look like changes in the fuel for the ATP engines.
And these look like changes in the fuel for the ATP engines.
November 26, 2025 at 9:33 AM
5) Dr. Armstrong connects this to his findings of metabolomics studies, which OMF focuses on. They found changes in amino acids and lipids in ME/CFS: those two things seem to stand out.
And these look like changes in the fuel for the ATP engines.
And these look like changes in the fuel for the ATP engines.
Reposted
3) In addition to that, there might be a lot of bodily processes that ME/CFS patients can't control that use up a lot of ATP, such as immune activation or inappropriate release of adrenaline for POTS.
November 26, 2025 at 9:33 AM
3) In addition to that, there might be a lot of bodily processes that ME/CFS patients can't control that use up a lot of ATP, such as immune activation or inappropriate release of adrenaline for POTS.
Reposted
2) By fuel, he means the supply from the blood of nutrients and oxygen, but also the cleaning up of byproducts from those fuels. These are all factors that can make energy production less efficient.
November 26, 2025 at 9:33 AM
2) By fuel, he means the supply from the blood of nutrients and oxygen, but also the cleaning up of byproducts from those fuels. These are all factors that can make energy production less efficient.
Reposted
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
November 26, 2025 at 9:33 AM
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
Reposted
⏳ The #YEVienna2025 workshop is happening next week!
Next up in our speaker highlights is Dr Sussane Meyer ✨
Her talk, “Health economic perspective on Long COVID”, will look at how Long COVID affects healthcare systems and why its economic impact matters.
Next up in our speaker highlights is Dr Sussane Meyer ✨
Her talk, “Health economic perspective on Long COVID”, will look at how Long COVID affects healthcare systems and why its economic impact matters.
November 19, 2025 at 12:17 PM
⏳ The #YEVienna2025 workshop is happening next week!
Next up in our speaker highlights is Dr Sussane Meyer ✨
Her talk, “Health economic perspective on Long COVID”, will look at how Long COVID affects healthcare systems and why its economic impact matters.
Next up in our speaker highlights is Dr Sussane Meyer ✨
Her talk, “Health economic perspective on Long COVID”, will look at how Long COVID affects healthcare systems and why its economic impact matters.
Reposted
⏳ The #YEVienna2025 workshop is happening next week!
We’re kicking off our speaker highlights with Dr Kathryn Hoffmann ✨
Her talk, “ME/CFS in Social Sciences”, will explore ME/CFS in primary care and public health through the lens of social sciences — and why this approach is so important.
We’re kicking off our speaker highlights with Dr Kathryn Hoffmann ✨
Her talk, “ME/CFS in Social Sciences”, will explore ME/CFS in primary care and public health through the lens of social sciences — and why this approach is so important.
November 18, 2025 at 9:39 AM
⏳ The #YEVienna2025 workshop is happening next week!
We’re kicking off our speaker highlights with Dr Kathryn Hoffmann ✨
Her talk, “ME/CFS in Social Sciences”, will explore ME/CFS in primary care and public health through the lens of social sciences — and why this approach is so important.
We’re kicking off our speaker highlights with Dr Kathryn Hoffmann ✨
Her talk, “ME/CFS in Social Sciences”, will explore ME/CFS in primary care and public health through the lens of social sciences — and why this approach is so important.
Reposted
⏳ Just one week to go until #YEVienna2025!
Today’s speaker highlight: Dr Ana Weidenauer ✨
She’ll present on innovative therapies for Long Covid and ME/CFS, drawing on her clinical work at Vienna General Hospital.
Today’s speaker highlight: Dr Ana Weidenauer ✨
She’ll present on innovative therapies for Long Covid and ME/CFS, drawing on her clinical work at Vienna General Hospital.
November 20, 2025 at 8:11 AM
⏳ Just one week to go until #YEVienna2025!
Today’s speaker highlight: Dr Ana Weidenauer ✨
She’ll present on innovative therapies for Long Covid and ME/CFS, drawing on her clinical work at Vienna General Hospital.
Today’s speaker highlight: Dr Ana Weidenauer ✨
She’ll present on innovative therapies for Long Covid and ME/CFS, drawing on her clinical work at Vienna General Hospital.