Billy Hanlon
@bhanlon15.bsky.social
ME/CFS | Long COVID | IACC
Reposted by Billy Hanlon
From what I’ve put together online it seems like a 2 day CPET can give data which shows PEM outside of symptom tracking.
I’m worried about not lasting very long either considering I have trouble standing for meaningful amounts of time.
I’m worried about not lasting very long either considering I have trouble standing for meaningful amounts of time.
December 1, 2025 at 12:52 AM
From what I’ve put together online it seems like a 2 day CPET can give data which shows PEM outside of symptom tracking.
I’m worried about not lasting very long either considering I have trouble standing for meaningful amounts of time.
I’m worried about not lasting very long either considering I have trouble standing for meaningful amounts of time.
Reposted by Billy Hanlon
Alright - soliciting all opinions on 2 day CPET.
Honestly, I just need to talk this out with other sick folks.
My goals: I want, on paper, the cognitive and physical abnormalities of this disease.
Neuropsych eval, 2 day CPET, neuropsych eval
From which I am expecting a horrid crash.
Honestly, I just need to talk this out with other sick folks.
My goals: I want, on paper, the cognitive and physical abnormalities of this disease.
Neuropsych eval, 2 day CPET, neuropsych eval
From which I am expecting a horrid crash.
November 30, 2025 at 10:18 PM
Alright - soliciting all opinions on 2 day CPET.
Honestly, I just need to talk this out with other sick folks.
My goals: I want, on paper, the cognitive and physical abnormalities of this disease.
Neuropsych eval, 2 day CPET, neuropsych eval
From which I am expecting a horrid crash.
Honestly, I just need to talk this out with other sick folks.
My goals: I want, on paper, the cognitive and physical abnormalities of this disease.
Neuropsych eval, 2 day CPET, neuropsych eval
From which I am expecting a horrid crash.
Reposted by Billy Hanlon
I am lucky to have a compassionate support system. But they still struggle with this part of it:
"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."
Desire v Ability
#LongCOVID #MECFS
"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."
Desire v Ability
#LongCOVID #MECFS
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
December 1, 2025 at 3:10 PM
I am lucky to have a compassionate support system. But they still struggle with this part of it:
"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."
Desire v Ability
#LongCOVID #MECFS
"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."
Desire v Ability
#LongCOVID #MECFS
Reposted by Billy Hanlon
You misunderstand me: I've been saying I have COVID-induced ME/CFS for years.
I've just never heard it framed as "ME/CFS is the most severe form of Long COVID". Which I knew it was. Just never worded it as such until now.
I've just never heard it framed as "ME/CFS is the most severe form of Long COVID". Which I knew it was. Just never worded it as such until now.
Day 1072—Why does ME/CFS score so low in quality of life? Because it stunts one's ability to perform daily activities. You can't function. You can't attend functions. Try as you might to carefully pace, PEM crashes are inevitable—and severe. So you remain. Alive but not living; barely even here.
December 1, 2025 at 2:46 AM
You misunderstand me: I've been saying I have COVID-induced ME/CFS for years.
I've just never heard it framed as "ME/CFS is the most severe form of Long COVID". Which I knew it was. Just never worded it as such until now.
I've just never heard it framed as "ME/CFS is the most severe form of Long COVID". Which I knew it was. Just never worded it as such until now.
Reposted by Billy Hanlon
Early on, they were framing it the other way around, that Long COVID was more severe than anything that came before.
I kind of forgot about this until I was reading The Invisible Kingdom:
I kind of forgot about this until I was reading The Invisible Kingdom:
December 1, 2025 at 6:16 PM
Early on, they were framing it the other way around, that Long COVID was more severe than anything that came before.
I kind of forgot about this until I was reading The Invisible Kingdom:
I kind of forgot about this until I was reading The Invisible Kingdom:
Just sharing that Telegraph Herald changed headline from rare to complex, shown below now.
'Hour by hour': Dubuque man learning to navigate life with complex disease'
www.telegraphherald.com/news/tri-sta...
'Hour by hour': Dubuque man learning to navigate life with complex disease'
www.telegraphherald.com/news/tri-sta...
December 1, 2025 at 6:11 PM
Just sharing that Telegraph Herald changed headline from rare to complex, shown below now.
'Hour by hour': Dubuque man learning to navigate life with complex disease'
www.telegraphherald.com/news/tri-sta...
'Hour by hour': Dubuque man learning to navigate life with complex disease'
www.telegraphherald.com/news/tri-sta...
Yale Medicine: Quick Question: Do We Know What Causes Long COVID?
Iwasaki: "There’s been so much progress that’s been made in this area of Long COVID research...there are hypotheses that we’re testing..both at the basic science level and..through..clinical trials'
medicine.yale.edu/news-article...
Iwasaki: "There’s been so much progress that’s been made in this area of Long COVID research...there are hypotheses that we’re testing..both at the basic science level and..through..clinical trials'
medicine.yale.edu/news-article...
Quick Question: Do We Know What Causes Long COVID?
During an interview on the Health & Veritas podcast, Akiko Iwasaki, PhD, discussed post-acute infection syndromes, like Long COVID, and what we’re learning
medicine.yale.edu
December 1, 2025 at 4:30 PM
Yale Medicine: Quick Question: Do We Know What Causes Long COVID?
Iwasaki: "There’s been so much progress that’s been made in this area of Long COVID research...there are hypotheses that we’re testing..both at the basic science level and..through..clinical trials'
medicine.yale.edu/news-article...
Iwasaki: "There’s been so much progress that’s been made in this area of Long COVID research...there are hypotheses that we’re testing..both at the basic science level and..through..clinical trials'
medicine.yale.edu/news-article...
Parade Magazine: These Are the Most Common COVID-19 Symptoms Doctors Are Seeing Right Now
'Getting the COVID vaccine can also protect you from long COVID, which is no joke. A 2024 study revealed..vaccinated..led to a whopping 50% drop in risk of developing long COVID.."
parade.com/health/most-...
'Getting the COVID vaccine can also protect you from long COVID, which is no joke. A 2024 study revealed..vaccinated..led to a whopping 50% drop in risk of developing long COVID.."
parade.com/health/most-...
These Are the Most Common COVID-19 Symptoms Doctors Are Seeing Right Now
If you notice any of these signs, be sure to get a COVID test!
parade.com
December 1, 2025 at 4:27 PM
Parade Magazine: These Are the Most Common COVID-19 Symptoms Doctors Are Seeing Right Now
'Getting the COVID vaccine can also protect you from long COVID, which is no joke. A 2024 study revealed..vaccinated..led to a whopping 50% drop in risk of developing long COVID.."
parade.com/health/most-...
'Getting the COVID vaccine can also protect you from long COVID, which is no joke. A 2024 study revealed..vaccinated..led to a whopping 50% drop in risk of developing long COVID.."
parade.com/health/most-...
Reposted by Billy Hanlon
I'm sitting right now waiting for the doctor to discuss my ongoing Long COVID symptoms 2.5 years after I had the virus.
'Australian study tracks ties between Long COVID, disabling conditions'
'A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.'
accesspress.org/australian-s...
'A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.'
accesspress.org/australian-s...
Australian study tracks ties between Long COVID, disabling conditions | Access Press
When most people think of COVID now, they picture a short illness like a cold – a few days of […]
accesspress.org
December 1, 2025 at 2:27 PM
I'm sitting right now waiting for the doctor to discuss my ongoing Long COVID symptoms 2.5 years after I had the virus.
Reposted by Billy Hanlon
Today is World AIDS Day.
“An awareness day is not a strategy” is the US government's rationale for not publicly acknowledging World AIDS Day for the first time since the inaugural WAD in 1988.
#WAD2025
“An awareness day is not a strategy” is the US government's rationale for not publicly acknowledging World AIDS Day for the first time since the inaugural WAD in 1988.
#WAD2025
December 1, 2025 at 12:14 PM
Today is World AIDS Day.
“An awareness day is not a strategy” is the US government's rationale for not publicly acknowledging World AIDS Day for the first time since the inaugural WAD in 1988.
#WAD2025
“An awareness day is not a strategy” is the US government's rationale for not publicly acknowledging World AIDS Day for the first time since the inaugural WAD in 1988.
#WAD2025
Reposted by Billy Hanlon
More data re the profoundly disabling impact of #LongCovid
'Australian study tracks ties between Long COVID, disabling conditions'
'A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.'
accesspress.org/australian-s...
'A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.'
accesspress.org/australian-s...
Australian study tracks ties between Long COVID, disabling conditions | Access Press
When most people think of COVID now, they picture a short illness like a cold – a few days of […]
accesspress.org
December 1, 2025 at 1:13 PM
More data re the profoundly disabling impact of #LongCovid
'Australian study tracks ties between Long COVID, disabling conditions'
'A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.'
accesspress.org/australian-s...
'A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.'
accesspress.org/australian-s...
Australian study tracks ties between Long COVID, disabling conditions | Access Press
When most people think of COVID now, they picture a short illness like a cold – a few days of […]
accesspress.org
December 1, 2025 at 1:11 PM
'Australian study tracks ties between Long COVID, disabling conditions'
'A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.'
accesspress.org/australian-s...
'A total of 86 percent of those with Long COVID met the threshold for serious disability compared with 9 percent of Australians overall.'
accesspress.org/australian-s...
Reposted by Billy Hanlon
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
Health Rising: 'Could “Disequilibrium” Be Causing the Orthostatic Intolerance Found in ME/CFS and Long COVID?'
'If Miwa is right and disequilibrium is contributing to problems with standing, then the treatment focus shifts a bit.'
www.healthrising.org/blog/2025/11...
'If Miwa is right and disequilibrium is contributing to problems with standing, then the treatment focus shifts a bit.'
www.healthrising.org/blog/2025/11...
Could "Disequilibrium" Be Causing the Orthostatic Intolerance Found in ME/CFS and Long COVID? - Health Rising
Disequilibrium - the inability to stand or walk without swaying - may be contributing to the orthostatic intolerance (increased symptoms while upright) in ME/CFS and long COVID
www.healthrising.org
November 30, 2025 at 10:40 PM
Health Rising: 'Could “Disequilibrium” Be Causing the Orthostatic Intolerance Found in ME/CFS and Long COVID?'
'If Miwa is right and disequilibrium is contributing to problems with standing, then the treatment focus shifts a bit.'
www.healthrising.org/blog/2025/11...
'If Miwa is right and disequilibrium is contributing to problems with standing, then the treatment focus shifts a bit.'
www.healthrising.org/blog/2025/11...
Reposted by Billy Hanlon
Great to see MSM pick up on #MECFS stories, but it is NOT a rare disease. It's more than twice as prevalent as MS. Of the 400+ million people who have had #longCOVID globally, half meet diagnostic criteria for ME.
Sadly, Evan's story is far from rare.
#disability #healthcare #chronicillness
Sadly, Evan's story is far from rare.
#disability #healthcare #chronicillness
Telegraph Herald: ''Hour by hour': Dubuque man learning to navigate life with rare disease'
'Still bedridden most days, Erickson was able to tap into his creativity, recording a timelapse video, “Spend a Week with M.E.,” a weeklong documentation...'
www.telegraphherald.com/news/tri-sta...
'Still bedridden most days, Erickson was able to tap into his creativity, recording a timelapse video, “Spend a Week with M.E.,” a weeklong documentation...'
www.telegraphherald.com/news/tri-sta...
'Hour by hour': Dubuque man learning to navigate life with rare disease
Evan Erickson was a thriving young college graduate with a bright future, having studied clarinet and music composition at the University of Memphis.
www.telegraphherald.com
November 30, 2025 at 7:01 PM
Great to see MSM pick up on #MECFS stories, but it is NOT a rare disease. It's more than twice as prevalent as MS. Of the 400+ million people who have had #longCOVID globally, half meet diagnostic criteria for ME.
Sadly, Evan's story is far from rare.
#disability #healthcare #chronicillness
Sadly, Evan's story is far from rare.
#disability #healthcare #chronicillness
Reposted by Billy Hanlon
This is what I think about when I see “wellness” and “longevity” folks peddling products.
I think we’re coming to realize the root of inflammation and resultsnt accelerated aging is infection and chronic pathogens.
I think we’re coming to realize the root of inflammation and resultsnt accelerated aging is infection and chronic pathogens.
TEDx Talks: "How persistent pathogens could accelerate the aging process by Amy Proal"
'..gut tissue collected from a person with long COVID almost 2 years after..here's the thing, these chronic pathogens are the closest thing there are to hackers of the human body"
www.youtube.com/watch?v=XMcV...
'..gut tissue collected from a person with long COVID almost 2 years after..here's the thing, these chronic pathogens are the closest thing there are to hackers of the human body"
www.youtube.com/watch?v=XMcV...
How persistent pathogens could accelerate the aging process | Amy Proal | TEDxBoston
YouTube video by TEDx Talks
www.youtube.com
November 30, 2025 at 6:53 PM
This is what I think about when I see “wellness” and “longevity” folks peddling products.
I think we’re coming to realize the root of inflammation and resultsnt accelerated aging is infection and chronic pathogens.
I think we’re coming to realize the root of inflammation and resultsnt accelerated aging is infection and chronic pathogens.
Reposted by Billy Hanlon
Yeah, Ezra. Thank you for sharing that. Resonates with me, too. For me, the hardest thing is waking in the night. I'm always full of adrenaline from dysautonomia heart-racing then. Or the doom feeling. Would be so nice to have someone there to say "Are you okay? Do you need anything?"
November 28, 2025 at 8:28 PM
Yeah, Ezra. Thank you for sharing that. Resonates with me, too. For me, the hardest thing is waking in the night. I'm always full of adrenaline from dysautonomia heart-racing then. Or the doom feeling. Would be so nice to have someone there to say "Are you okay? Do you need anything?"
Reposted by Billy Hanlon
Congratulations, Niko & Line!
ME may change our lives, but our desire for and capacity for love is one thing that the illness can't steal.
ME may change our lives, but our desire for and capacity for love is one thing that the illness can't steal.
I have some exciting news! Two weeks ago, on the 16th of November, my partner and I got engaged! 1/8
November 30, 2025 at 4:59 PM
Congratulations, Niko & Line!
ME may change our lives, but our desire for and capacity for love is one thing that the illness can't steal.
ME may change our lives, but our desire for and capacity for love is one thing that the illness can't steal.
Reposted by Billy Hanlon
I'm not sure ME is so rare*, but this article does a decent job of explaining the experience, for people who want to understand the basics of what people like me go through.
*given under-diagnosis due to it not being covered in med school curricula, and a huge increase in recent years
*given under-diagnosis due to it not being covered in med school curricula, and a huge increase in recent years
Telegraph Herald: ''Hour by hour': Dubuque man learning to navigate life with rare disease'
'Still bedridden most days, Erickson was able to tap into his creativity, recording a timelapse video, “Spend a Week with M.E.,” a weeklong documentation...'
www.telegraphherald.com/news/tri-sta...
'Still bedridden most days, Erickson was able to tap into his creativity, recording a timelapse video, “Spend a Week with M.E.,” a weeklong documentation...'
www.telegraphherald.com/news/tri-sta...
'Hour by hour': Dubuque man learning to navigate life with rare disease
Evan Erickson was a thriving young college graduate with a bright future, having studied clarinet and music composition at the University of Memphis.
www.telegraphherald.com
November 30, 2025 at 6:19 PM
I'm not sure ME is so rare*, but this article does a decent job of explaining the experience, for people who want to understand the basics of what people like me go through.
*given under-diagnosis due to it not being covered in med school curricula, and a huge increase in recent years
*given under-diagnosis due to it not being covered in med school curricula, and a huge increase in recent years
West Central Tribune: 'Susan Estrich: The importance of being grateful'
'My daughter has spent the last year searching for answers that don't exist for the collection of syndromes — ME/CFS; POTS; and dysautonomia — that we collectively call long covid'
www.wctrib.com/opinion/colu...
'My daughter has spent the last year searching for answers that don't exist for the collection of syndromes — ME/CFS; POTS; and dysautonomia — that we collectively call long covid'
www.wctrib.com/opinion/colu...
Susan Estrich: The importance of being grateful
From the commentary, " I'm grateful to the friends of my daughters who have come around, and to the friends of mine who have put up with me."
www.wctrib.com
November 30, 2025 at 6:14 PM
West Central Tribune: 'Susan Estrich: The importance of being grateful'
'My daughter has spent the last year searching for answers that don't exist for the collection of syndromes — ME/CFS; POTS; and dysautonomia — that we collectively call long covid'
www.wctrib.com/opinion/colu...
'My daughter has spent the last year searching for answers that don't exist for the collection of syndromes — ME/CFS; POTS; and dysautonomia — that we collectively call long covid'
www.wctrib.com/opinion/colu...
Reposted by Billy Hanlon
NIH researchers studied 23 people and found that the antiviral brincidofovir blocked reactivation of Epstein-Barr virus in both healthy donors and MS patients.
This suggests a potential new way to target EBV in multiple sclerosis.
www.jci.org/articles/vie...
This suggests a potential new way to target EBV in multiple sclerosis.
www.jci.org/articles/vie...
JCI -
Broad-spectrum antiviral brincidofovir inhibits Epstein-Barr virus and related gammaherpesvirus in human and nonhuman primate cells
www.jci.org
November 29, 2025 at 11:18 PM
NIH researchers studied 23 people and found that the antiviral brincidofovir blocked reactivation of Epstein-Barr virus in both healthy donors and MS patients.
This suggests a potential new way to target EBV in multiple sclerosis.
www.jci.org/articles/vie...
This suggests a potential new way to target EBV in multiple sclerosis.
www.jci.org/articles/vie...
Reposted by Billy Hanlon
NIH researchers found that the PD-1 pathway helps high-affinity CD8+ T cells stay in a stem-like state while exposed to tumor antigens.
Blocking PD-1 may boost short-term immunity but risks depleting these key long-term defenders.
www.nature.com/articles/s41...
Blocking PD-1 may boost short-term immunity but risks depleting these key long-term defenders.
www.nature.com/articles/s41...
Inhibitory PD-1 axis maintains high-avidity stem-like CD8+ T cells - Nature
PD-1 blockade interferes with the selective expansion and maintenance of high-affinity TCR stem-like clones that have a critical role in effective checkpoint blockade therapy.
www.nature.com
November 29, 2025 at 11:39 PM
NIH researchers found that the PD-1 pathway helps high-affinity CD8+ T cells stay in a stem-like state while exposed to tumor antigens.
Blocking PD-1 may boost short-term immunity but risks depleting these key long-term defenders.
www.nature.com/articles/s41...
Blocking PD-1 may boost short-term immunity but risks depleting these key long-term defenders.
www.nature.com/articles/s41...
Reposted by Billy Hanlon
University of Minnesota researchers studied 248 patients and found that metformin prescribed within 6 days of COVID infection was linked to a 53% lower risk of long COVID or death over 6 months compared to other medications
www.authorea.com/doi/full/10....
www.authorea.com/doi/full/10....
Metformin at the time of Covid-19 infection and risk of Long Covid: A Target Trial Emulation Study
Background: Our objective was to evaluate metformin prescribed at the time of SARS-CoV-2 infection on the risk of developing Long Covid (LC) in electronic health record data. Methods: We conducted a n...
www.authorea.com
November 30, 2025 at 2:53 PM
University of Minnesota researchers studied 248 patients and found that metformin prescribed within 6 days of COVID infection was linked to a 53% lower risk of long COVID or death over 6 months compared to other medications
www.authorea.com/doi/full/10....
www.authorea.com/doi/full/10....
Reposted by Billy Hanlon
Researchers analyzed blood from 277 COVID-19 patients and found that SARS-CoV-2 disrupts ion channels and lipid metabolism, affecting pathways like cholesterol regulation and brain signaling.
They identified 17 drugs that could target these changes.
www.sciencedirect.com/science/arti...
They identified 17 drugs that could target these changes.
www.sciencedirect.com/science/arti...
In silico analysis of ion channels and lipid metabolism in SARS-CoV-2 infected patients
Concerns of long COVID among patients once infected with SARS-CoV-2 are increasing. Molecular alterations in the host could help in understanding this…
www.sciencedirect.com
November 30, 2025 at 3:01 PM
Researchers analyzed blood from 277 COVID-19 patients and found that SARS-CoV-2 disrupts ion channels and lipid metabolism, affecting pathways like cholesterol regulation and brain signaling.
They identified 17 drugs that could target these changes.
www.sciencedirect.com/science/arti...
They identified 17 drugs that could target these changes.
www.sciencedirect.com/science/arti...