Billy Hanlon
@bhanlon15.bsky.social
ME/CFS | Long COVID | IACC
Reposted by Billy Hanlon
Thank you to the Irish Independent for this article and this is why so many folks are off sick. Sadly now six of my friends have long covid. This is a national crisis behind closed doors. www.independent.ie/life/health-...
Long-Covid is still here. I can’t walk, cook, work, socialise or live independently – and I am not alone
The country, and the rest of the world, was in the grip of a global pandemic, so when Lydia Fischer Dooley, developed a dry cough, fatigue, weakness and lack of appetite at the start of 2022, she righ...
www.independent.ie
November 10, 2025 at 12:29 PM
Thank you to the Irish Independent for this article and this is why so many folks are off sick. Sadly now six of my friends have long covid. This is a national crisis behind closed doors. www.independent.ie/life/health-...
Reposted by Billy Hanlon
My chronically ill kid's report said they "have a poor work ethic" and I just want to cry.
If only the teacher knew what it's like...
#longcovid
If only the teacher knew what it's like...
#longcovid
November 5, 2025 at 9:33 PM
My chronically ill kid's report said they "have a poor work ethic" and I just want to cry.
If only the teacher knew what it's like...
#longcovid
If only the teacher knew what it's like...
#longcovid
Reposted by Billy Hanlon
From the Stanford Long COVID Clinic (CA, USA)
"indicates that a significant proportion of long COVID patients may experience sleep disturbances"
www.mdpi.com/2227-9032/13...
Screenshot from latest Science for ME weekly update
#LongCovid #PASC
"indicates that a significant proportion of long COVID patients may experience sleep disturbances"
www.mdpi.com/2227-9032/13...
Screenshot from latest Science for ME weekly update
#LongCovid #PASC
November 7, 2025 at 1:46 AM
From the Stanford Long COVID Clinic (CA, USA)
"indicates that a significant proportion of long COVID patients may experience sleep disturbances"
www.mdpi.com/2227-9032/13...
Screenshot from latest Science for ME weekly update
#LongCovid #PASC
"indicates that a significant proportion of long COVID patients may experience sleep disturbances"
www.mdpi.com/2227-9032/13...
Screenshot from latest Science for ME weekly update
#LongCovid #PASC
Reposted by Billy Hanlon
💸 German government cutting millions in Long COVID funding
🛌 Study found 1.4% of people with documented COVID-19 case were diagnosed with Long COVID
😷 Scientist who alerted world that SARS-CoV-2 was airborne recognized with prestigious science prize
#LongCOVID research updates: bit.ly/4okEB3u
🛌 Study found 1.4% of people with documented COVID-19 case were diagnosed with Long COVID
😷 Scientist who alerted world that SARS-CoV-2 was airborne recognized with prestigious science prize
#LongCOVID research updates: bit.ly/4okEB3u
November 6, 2025 at 3:14 PM
💸 German government cutting millions in Long COVID funding
🛌 Study found 1.4% of people with documented COVID-19 case were diagnosed with Long COVID
😷 Scientist who alerted world that SARS-CoV-2 was airborne recognized with prestigious science prize
#LongCOVID research updates: bit.ly/4okEB3u
🛌 Study found 1.4% of people with documented COVID-19 case were diagnosed with Long COVID
😷 Scientist who alerted world that SARS-CoV-2 was airborne recognized with prestigious science prize
#LongCOVID research updates: bit.ly/4okEB3u
Reposted by Billy Hanlon
Such an important topic, thank you Chloé, @lisamccorkell.bsky.social @julialmv.bsky.social @leticiasaurus.bsky.social and coauthors for drawing attention to it!
#LongCovid #MECFS
#LongCovid #MECFS
Many Long COVID trials have reported negative results in 2024 and 2025. In our Comment for @thelancetinfdis.bsky.social we argue that inadequate outcome measures might have played a role. (1/12)
November 8, 2025 at 12:13 AM
Such an important topic, thank you Chloé, @lisamccorkell.bsky.social @julialmv.bsky.social @leticiasaurus.bsky.social and coauthors for drawing attention to it!
#LongCovid #MECFS
#LongCovid #MECFS
Reposted by Billy Hanlon
Almost a year to the day earlier - another early mention of 'chronic fatigue syndrome'. The Billings Gazette, US. 9th November 1986. #mecfs #cfsme #myalgicencephalomyelitis #myalgice #cebv #epsteinbarr #ebv
November 9, 2025 at 8:15 AM
Almost a year to the day earlier - another early mention of 'chronic fatigue syndrome'. The Billings Gazette, US. 9th November 1986. #mecfs #cfsme #myalgicencephalomyelitis #myalgice #cebv #epsteinbarr #ebv
Reposted by Billy Hanlon
The Olathe Daily News, Kansas, US. Thirty-eight years ago today - 8th November 1987.
A relatively early reference to 'chronic fatigue syndrome' in the US press.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
A relatively early reference to 'chronic fatigue syndrome' in the US press.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 8, 2025 at 9:13 AM
The Olathe Daily News, Kansas, US. Thirty-eight years ago today - 8th November 1987.
A relatively early reference to 'chronic fatigue syndrome' in the US press.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
A relatively early reference to 'chronic fatigue syndrome' in the US press.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
Reposted by Billy Hanlon
I wonder whether anyone knows what happened to these 2 young women. The CDC did a serious disservice to us by not tracking patients over the decades to give us an idea of the paths that ME/CFS can take.
November 8, 2025 at 10:04 PM
I wonder whether anyone knows what happened to these 2 young women. The CDC did a serious disservice to us by not tracking patients over the decades to give us an idea of the paths that ME/CFS can take.
Reposted by Billy Hanlon
38 years later and #MECFS is still described as a “living death.”
The treatment Beth wanted never materialized.
We didn’t invest in research.
I hope she was one of the lucky ones and had a spontaneous remission.
6/X
The treatment Beth wanted never materialized.
We didn’t invest in research.
I hope she was one of the lucky ones and had a spontaneous remission.
6/X
November 8, 2025 at 11:48 PM
38 years later and #MECFS is still described as a “living death.”
The treatment Beth wanted never materialized.
We didn’t invest in research.
I hope she was one of the lucky ones and had a spontaneous remission.
6/X
The treatment Beth wanted never materialized.
We didn’t invest in research.
I hope she was one of the lucky ones and had a spontaneous remission.
6/X
Reposted by Billy Hanlon
A long excerpt from this 1987 interview with Beth Bighley, a patient with chronic EBV, now known as #MECFS
This could’ve been written by someone last year with #LongCovid and/or ME.
“My parents' reaction was one of relief that I did have something physically. But also frustration, 1/
This could’ve been written by someone last year with #LongCovid and/or ME.
“My parents' reaction was one of relief that I did have something physically. But also frustration, 1/
The Olathe Daily News, Kansas, US. Thirty-eight years ago today - 8th November 1987.
A relatively early reference to 'chronic fatigue syndrome' in the US press.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
A relatively early reference to 'chronic fatigue syndrome' in the US press.
#mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 8, 2025 at 11:48 PM
A long excerpt from this 1987 interview with Beth Bighley, a patient with chronic EBV, now known as #MECFS
This could’ve been written by someone last year with #LongCovid and/or ME.
“My parents' reaction was one of relief that I did have something physically. But also frustration, 1/
This could’ve been written by someone last year with #LongCovid and/or ME.
“My parents' reaction was one of relief that I did have something physically. But also frustration, 1/
Reposted by Billy Hanlon
Recent research in New Zealand shows that Long Covid sufferers feel let down by the health system:
"The picture painted by participants was bleak with a sense that the world had moved on from Covid-19 and left them behind."
www.rnz.co.nz/news/nationa...
#longcovid
"The picture painted by participants was bleak with a sense that the world had moved on from Covid-19 and left them behind."
www.rnz.co.nz/news/nationa...
#longcovid
Researchers say healthcare system failing long Covid patients
A researcher is calling on the government to provide dedicated funding for long Covid.
www.rnz.co.nz
November 7, 2025 at 3:48 AM
Recent research in New Zealand shows that Long Covid sufferers feel let down by the health system:
"The picture painted by participants was bleak with a sense that the world had moved on from Covid-19 and left them behind."
www.rnz.co.nz/news/nationa...
#longcovid
"The picture painted by participants was bleak with a sense that the world had moved on from Covid-19 and left them behind."
www.rnz.co.nz/news/nationa...
#longcovid
Reposted by Billy Hanlon
This is a very deft thread. A concise precis of our conversation on conservatism, capitalism, and disability
Thank you @mecfsskeptic.bsky.social
#MECFS #LongCovid @davetuller1.bsky.social
Thank you @mecfsskeptic.bsky.social
#MECFS #LongCovid @davetuller1.bsky.social
1) Interesting interview of Prof. Brian Hughes by David Tuller.
In his new book Hughes argues that psychology is not woke but that its methods are essentially conservative because it focuses on an individualistic view and ignores social context.
In his new book Hughes argues that psychology is not woke but that its methods are essentially conservative because it focuses on an individualistic view and ignores social context.
November 7, 2025 at 10:18 PM
This is a very deft thread. A concise precis of our conversation on conservatism, capitalism, and disability
Thank you @mecfsskeptic.bsky.social
#MECFS #LongCovid @davetuller1.bsky.social
Thank you @mecfsskeptic.bsky.social
#MECFS #LongCovid @davetuller1.bsky.social
Reposted by Billy Hanlon
(7-Oct) Researchers have pinpointed a biological cause of #LongCovid brain fog w/ advanced PET imaging; widespread increases in AMPA receptor density linked to cognitive impairment & inflammation; confirm brain fog as a measurable, biological condition. Hope!
www.sciencedaily.com/releases/202...
www.sciencedaily.com/releases/202...
Scientists finally reveal what’s behind long COVID’s mysterious brain fog
Researchers in Japan have pinpointed a biological cause of Long COVID brain fog using advanced PET brain imaging. They discovered widespread increases in AMPA receptor density linked to cognitive impa...
www.sciencedaily.com
November 9, 2025 at 3:04 PM
(7-Oct) Researchers have pinpointed a biological cause of #LongCovid brain fog w/ advanced PET imaging; widespread increases in AMPA receptor density linked to cognitive impairment & inflammation; confirm brain fog as a measurable, biological condition. Hope!
www.sciencedaily.com/releases/202...
www.sciencedaily.com/releases/202...
Reposted by Billy Hanlon
Now published! My edited book ‘Long COVID and Society’ - my introduction is free to read for everyone. Download from the link below and check out the others chapters too (Chapter 14, about LC children and families, is also open access)
link.springer.com/book/10.1007...
link.springer.com/book/10.1007...
Long COVID and Society
This is the first book to bring together academics and activists living with Long COVID to explore the social impacts of the new complex chronic condition.
link.springer.com
October 22, 2025 at 8:06 AM
Now published! My edited book ‘Long COVID and Society’ - my introduction is free to read for everyone. Download from the link below and check out the others chapters too (Chapter 14, about LC children and families, is also open access)
link.springer.com/book/10.1007...
link.springer.com/book/10.1007...
Reposted by Billy Hanlon
Very glad to have a chapter in the Long COVID and Society book curated by D. Lupton.
In my chapter, I show how #LongCovid patient-driven advocacy-research was critical in 2020-1 to identifying LC as a novel multi-system disease entity, and achieving recognition from policymakers and WHO
In my chapter, I show how #LongCovid patient-driven advocacy-research was critical in 2020-1 to identifying LC as a novel multi-system disease entity, and achieving recognition from policymakers and WHO
Now published! My edited book ‘Long COVID and Society’ - my introduction is free to read for everyone. Download from the link below and check out the others chapters too (Chapter 14, about LC children and families, is also open access)
link.springer.com/book/10.1007...
link.springer.com/book/10.1007...
Long COVID and Society
This is the first book to bring together academics and activists living with Long COVID to explore the social impacts of the new complex chronic condition.
link.springer.com
November 7, 2025 at 7:13 PM
Very glad to have a chapter in the Long COVID and Society book curated by D. Lupton.
In my chapter, I show how #LongCovid patient-driven advocacy-research was critical in 2020-1 to identifying LC as a novel multi-system disease entity, and achieving recognition from policymakers and WHO
In my chapter, I show how #LongCovid patient-driven advocacy-research was critical in 2020-1 to identifying LC as a novel multi-system disease entity, and achieving recognition from policymakers and WHO
Reposted by Billy Hanlon
Exulansis -the moment you simply give up trying to explain the in‑between.
📖 This article gives voice to the silent struggle of families living with #LongCovid, where recognition, care and empathy often fail them.
www.longcovidadvoc.com/post/exulans...
📖 This article gives voice to the silent struggle of families living with #LongCovid, where recognition, care and empathy often fail them.
www.longcovidadvoc.com/post/exulans...
Exulansis - The Gulf of Understanding
An Ongoing Battle for Adequate Treatment and Care: The Impact of Long Covid on Families' by Marianne Lynch.
www.longcovidadvoc.com
November 8, 2025 at 3:41 PM
Exulansis -the moment you simply give up trying to explain the in‑between.
📖 This article gives voice to the silent struggle of families living with #LongCovid, where recognition, care and empathy often fail them.
www.longcovidadvoc.com/post/exulans...
📖 This article gives voice to the silent struggle of families living with #LongCovid, where recognition, care and empathy often fail them.
www.longcovidadvoc.com/post/exulans...
Reposted by Billy Hanlon
The long term harm caused by #Covid is well-documented in hundreds of thousands of research papers and clinical reports.
#longcovid @greenparty.org.uk @greensorganise.bsky.social
#longcovid @greenparty.org.uk @greensorganise.bsky.social
November 10, 2025 at 3:03 PM
The long term harm caused by #Covid is well-documented in hundreds of thousands of research papers and clinical reports.
#longcovid @greenparty.org.uk @greensorganise.bsky.social
#longcovid @greenparty.org.uk @greensorganise.bsky.social
Reposted by Billy Hanlon
This is a hell of an essay and I am intrigued by this Vince Gilligan show. 🧪🩺 #MedSky #LongCovid #DisabilitySky #Spoonies
Living with Long COVID often feels like living in a horror movie. Along with your disease comes a creepy Hive Mind refusal to acknowledge the dangers of COVID infection. In Vince Gilligan's new Apple TV show Pluribus, the Hive Mind comes to life:
www.thegauntlet.news/p/pluribus-c...
www.thegauntlet.news/p/pluribus-c...
"Pluribus" captures the isolation of COVID-awareness in a COVID denialist world
For years I've described having Long COVID as living in a horror movie. Now that horror movie (well, prestige Apple TV show) is here.
www.thegauntlet.news
November 11, 2025 at 12:13 AM
This is a hell of an essay and I am intrigued by this Vince Gilligan show. 🧪🩺 #MedSky #LongCovid #DisabilitySky #Spoonies
Reposted by Billy Hanlon
#NEISvoid PSA
TIL patients and caregivers can get free access to Elsevier papers!
Email your request to patientaccess@elsevier.com and include confirmation you are a patient. Turnaround is 48 hours.
#LongCovid #MECFS
TIL patients and caregivers can get free access to Elsevier papers!
Email your request to patientaccess@elsevier.com and include confirmation you are a patient. Turnaround is 48 hours.
#LongCovid #MECFS
November 10, 2025 at 7:45 PM
#NEISvoid PSA
TIL patients and caregivers can get free access to Elsevier papers!
Email your request to patientaccess@elsevier.com and include confirmation you are a patient. Turnaround is 48 hours.
#LongCovid #MECFS
TIL patients and caregivers can get free access to Elsevier papers!
Email your request to patientaccess@elsevier.com and include confirmation you are a patient. Turnaround is 48 hours.
#LongCovid #MECFS
Reposted by Billy Hanlon
2 #LongCovid randomized trials published today
—Online cognitive training, negative
jamanetwork.com/journals/jam...
—Resistance training, modest benefit
jamanetwork.com/journals/jam...
—Online cognitive training, negative
jamanetwork.com/journals/jam...
—Resistance training, modest benefit
jamanetwork.com/journals/jam...
November 10, 2025 at 8:50 PM
2 #LongCovid randomized trials published today
—Online cognitive training, negative
jamanetwork.com/journals/jam...
—Resistance training, modest benefit
jamanetwork.com/journals/jam...
—Online cognitive training, negative
jamanetwork.com/journals/jam...
—Resistance training, modest benefit
jamanetwork.com/journals/jam...
Reposted by Billy Hanlon
A new study led by the RECOVER Initiative at @columbiamed.bsky.social @columbiauniversity.bsky.social reports that adolescents vaccinated with the #COVIDvaccine were 36% LESS LIKELY to develop #longCOVID after their first #SARSCoV2 #infection than unvaccinated peers.
www.linkedin.com/posts/drmelv...
www.linkedin.com/posts/drmelv...
November 9, 2025 at 7:55 PM
A new study led by the RECOVER Initiative at @columbiamed.bsky.social @columbiauniversity.bsky.social reports that adolescents vaccinated with the #COVIDvaccine were 36% LESS LIKELY to develop #longCOVID after their first #SARSCoV2 #infection than unvaccinated peers.
www.linkedin.com/posts/drmelv...
www.linkedin.com/posts/drmelv...
Reposted by Billy Hanlon
Multisystem inflammatory syndrome in children is a SARS-CoV-2 triggered Kawasaki disease
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Multisystem inflammatory syndrome in children is a SARS-CoV-2 triggered Kawasaki disease - Pediatric Research
Pediatric Research - Multisystem inflammatory syndrome in children is a SARS-CoV-2 triggered Kawasaki disease
www.nature.com
November 2, 2025 at 8:29 PM
Multisystem inflammatory syndrome in children is a SARS-CoV-2 triggered Kawasaki disease
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Reposted by Billy Hanlon
I'm late to the homemade bone broth party, but happy to be here.
Will my MCAS-busted gut play along, since I can't eat the meat that came off the bones I roast, boil/slow cook, and pressure can? Maybe! Will my husband's 3 tastebuds notice the difference in the Ramen? Who knows!
Will my MCAS-busted gut play along, since I can't eat the meat that came off the bones I roast, boil/slow cook, and pressure can? Maybe! Will my husband's 3 tastebuds notice the difference in the Ramen? Who knows!
November 11, 2025 at 1:45 AM
I'm late to the homemade bone broth party, but happy to be here.
Will my MCAS-busted gut play along, since I can't eat the meat that came off the bones I roast, boil/slow cook, and pressure can? Maybe! Will my husband's 3 tastebuds notice the difference in the Ramen? Who knows!
Will my MCAS-busted gut play along, since I can't eat the meat that came off the bones I roast, boil/slow cook, and pressure can? Maybe! Will my husband's 3 tastebuds notice the difference in the Ramen? Who knows!
Solve ME: “Hyperstimulated Innate Immune System Can Drive ME/CFS-Associated Fatigue and Post-Exertional Malaise”
“These results suggest possible treatments for people with ME/CFS”
solvecfs.org/hyperstimula...
“These results suggest possible treatments for people with ME/CFS”
solvecfs.org/hyperstimula...
Hyperstimulated Innate Immune System Can Drive ME/CFS-Associated Fatigue and Post-Exertional Malaise - Solve ME/CFS Initiative
A new study by Dr. Ian Lipkin describes how a hyperactive innate immune system can drive ME/CFS-associated fatigue and post-exertional malaise.
solvecfs.org
November 11, 2025 at 2:07 AM
Solve ME: “Hyperstimulated Innate Immune System Can Drive ME/CFS-Associated Fatigue and Post-Exertional Malaise”
“These results suggest possible treatments for people with ME/CFS”
solvecfs.org/hyperstimula...
“These results suggest possible treatments for people with ME/CFS”
solvecfs.org/hyperstimula...
KPBS: 'Scientists launch new trial for long COVID treatment'
Eric Topol: "They can't work..function..have a hard time just getting out of bed...the first of trials we hope to move forward with..there are so many other potential candidate drugs interventions to help..."
www.kpbs.org/podcasts/kpb...
Eric Topol: "They can't work..function..have a hard time just getting out of bed...the first of trials we hope to move forward with..there are so many other potential candidate drugs interventions to help..."
www.kpbs.org/podcasts/kpb...
Scientists launch new trial for long COVID treatment
Launched by the Scripps Research Translational Institute, the trial will test a repurposed GLP-1 drug, tirzepatide, and if it can provide relief for long COVID symptoms.
www.kpbs.org
November 11, 2025 at 12:52 AM
KPBS: 'Scientists launch new trial for long COVID treatment'
Eric Topol: "They can't work..function..have a hard time just getting out of bed...the first of trials we hope to move forward with..there are so many other potential candidate drugs interventions to help..."
www.kpbs.org/podcasts/kpb...
Eric Topol: "They can't work..function..have a hard time just getting out of bed...the first of trials we hope to move forward with..there are so many other potential candidate drugs interventions to help..."
www.kpbs.org/podcasts/kpb...