Billy Hanlon
@bhanlon15.bsky.social
ME/CFS | Long COVID | IACC
Reposted by Billy Hanlon
🚨👀👇
Healthcare Today: 'Calls for the government to recognise Long Covid'
'The British Medical Association and the Royal College of Nursing have written to the government urging it to recognise long COVID as a prescribed industrial disease'
healthcaretoday.com/article/call...
'The British Medical Association and the Royal College of Nursing have written to the government urging it to recognise long COVID as a prescribed industrial disease'
healthcaretoday.com/article/call...
Calls for the government to recognise Long Covid
The British Medical Association and the Royal College of Nursing have written to the government urging it to recognise long COVID as a prescribed industrial disease.
healthcaretoday.com
November 25, 2025 at 3:10 PM
🚨👀👇
Healthcare Today: 'Calls for the government to recognise Long Covid'
'The British Medical Association and the Royal College of Nursing have written to the government urging it to recognise long COVID as a prescribed industrial disease'
healthcaretoday.com/article/call...
'The British Medical Association and the Royal College of Nursing have written to the government urging it to recognise long COVID as a prescribed industrial disease'
healthcaretoday.com/article/call...
Calls for the government to recognise Long Covid
The British Medical Association and the Royal College of Nursing have written to the government urging it to recognise long COVID as a prescribed industrial disease.
healthcaretoday.com
November 25, 2025 at 3:00 PM
Healthcare Today: 'Calls for the government to recognise Long Covid'
'The British Medical Association and the Royal College of Nursing have written to the government urging it to recognise long COVID as a prescribed industrial disease'
healthcaretoday.com/article/call...
'The British Medical Association and the Royal College of Nursing have written to the government urging it to recognise long COVID as a prescribed industrial disease'
healthcaretoday.com/article/call...
Reposted by Billy Hanlon
Being chronically sick like this isn't some romanticized Hallmark movie plot. It's my life with debilitating chronic illnesses. DE-BIL-I-TAT-ING. Look the word up in a frigging dictionary.
STAT News: 'I have long Covid. Don’t call my chronic disease a ‘journey’
By Peter Swenson, professor emeritus, Yale University
'Like an estimated 20 million Americans, I have an incurable post-acute infection syndrome that goes by the name of long Covid...'
www.statnews.com/2025/11/25/c...
By Peter Swenson, professor emeritus, Yale University
'Like an estimated 20 million Americans, I have an incurable post-acute infection syndrome that goes by the name of long Covid...'
www.statnews.com/2025/11/25/c...
I have long Covid. Don’t call my chronic disease a ‘journey’
A “journey” is something you choose. No one chooses chronic illness.
www.statnews.com
November 25, 2025 at 2:44 PM
Being chronically sick like this isn't some romanticized Hallmark movie plot. It's my life with debilitating chronic illnesses. DE-BIL-I-TAT-ING. Look the word up in a frigging dictionary.
Reposted by Billy Hanlon
Glad to see this @wired.com guide on high quality masks! A KN95 can help protect you and your loved ones from COVID-19 and other airborne viruses, especially during this busy travel season. I only wish Wired wrote about the pandemic in the present tense 🙏😷
www.wired.com/story/best-d...
www.wired.com/story/best-d...
15 Good N95, KF94, and KN95 Face Masks to Buy Right Now
Flu season is here. These are the best disposable face coverings we’ve tested—and where you can find them.
www.wired.com
November 25, 2025 at 2:18 AM
Glad to see this @wired.com guide on high quality masks! A KN95 can help protect you and your loved ones from COVID-19 and other airborne viruses, especially during this busy travel season. I only wish Wired wrote about the pandemic in the present tense 🙏😷
www.wired.com/story/best-d...
www.wired.com/story/best-d...
STAT News: 'I have long Covid. Don’t call my chronic disease a ‘journey’
By Peter Swenson, professor emeritus, Yale University
'Like an estimated 20 million Americans, I have an incurable post-acute infection syndrome that goes by the name of long Covid...'
www.statnews.com/2025/11/25/c...
By Peter Swenson, professor emeritus, Yale University
'Like an estimated 20 million Americans, I have an incurable post-acute infection syndrome that goes by the name of long Covid...'
www.statnews.com/2025/11/25/c...
I have long Covid. Don’t call my chronic disease a ‘journey’
A “journey” is something you choose. No one chooses chronic illness.
www.statnews.com
November 25, 2025 at 2:15 PM
STAT News: 'I have long Covid. Don’t call my chronic disease a ‘journey’
By Peter Swenson, professor emeritus, Yale University
'Like an estimated 20 million Americans, I have an incurable post-acute infection syndrome that goes by the name of long Covid...'
www.statnews.com/2025/11/25/c...
By Peter Swenson, professor emeritus, Yale University
'Like an estimated 20 million Americans, I have an incurable post-acute infection syndrome that goes by the name of long Covid...'
www.statnews.com/2025/11/25/c...
This is so well-written & powerful by @darthfoo.bsky.social
I wrote recently about my experience with post-exertional malaise #PEM. Last year, I tried graded exercise therapy and it put me into a #PEMCrash that lasted for months. The physical therapist that “has worked with many #LongCovid #MECFS patients” had this mindset.
substack.com/home/post/p-...
substack.com/home/post/p-...
November 25, 2025 at 5:19 AM
This is so well-written & powerful by @darthfoo.bsky.social
Reposted by Billy Hanlon
When Your Body Becomes Your Enemy
Living with Long COVID’s Brutal Economics
open.substack.com
September 23, 2025 at 5:20 PM
Reposted by Billy Hanlon
this line - "Frequent PEM doesn’t just make you sicker. It steals your life in increments."
so true. sometimes i can't remember what it was like Before.
this is a really good essay about PEM.
so true. sometimes i can't remember what it was like Before.
this is a really good essay about PEM.
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
November 23, 2025 at 8:45 PM
this line - "Frequent PEM doesn’t just make you sicker. It steals your life in increments."
so true. sometimes i can't remember what it was like Before.
this is a really good essay about PEM.
so true. sometimes i can't remember what it was like Before.
this is a really good essay about PEM.
Reposted by Billy Hanlon
Best piece on PEM I've read in awhile. 🏆
I should send it to my money manager, who told me I need to go to the gym to get my health back. Or my doctor who Dx'd me with "exercise intolerance."
I should send it to my money manager, who told me I need to go to the gym to get my health back. Or my doctor who Dx'd me with "exercise intolerance."
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
November 24, 2025 at 5:16 AM
Best piece on PEM I've read in awhile. 🏆
I should send it to my money manager, who told me I need to go to the gym to get my health back. Or my doctor who Dx'd me with "exercise intolerance."
I should send it to my money manager, who told me I need to go to the gym to get my health back. Or my doctor who Dx'd me with "exercise intolerance."
Reposted by Billy Hanlon
This is the best thing I’ve ever read about PEM. My wedding was amazing but I crashed for weeks and my baseline is lower now.
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
November 24, 2025 at 3:16 PM
This is the best thing I’ve ever read about PEM. My wedding was amazing but I crashed for weeks and my baseline is lower now.
Reposted by Billy Hanlon
“They’re failing to understand the central mechanism that governs your entire existence.” Bingo! Whether I’m crashed or trying to avoid a crash, my whole life, such as it is, revolves around PEM. That it prevents me from gaining function makes it the one ME symptom I just can’t overcome.
November 24, 2025 at 12:45 AM
“They’re failing to understand the central mechanism that governs your entire existence.” Bingo! Whether I’m crashed or trying to avoid a crash, my whole life, such as it is, revolves around PEM. That it prevents me from gaining function makes it the one ME symptom I just can’t overcome.
Reposted by Billy Hanlon
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
November 23, 2025 at 6:23 PM
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Reposted by Billy Hanlon
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Chronic Fatigue Syndrome: Bundesregierung will Erforschung von ME/CFS stärker fördern
Die Zahl der Long-Covid- und ME/CFS-Erkrankungen hat seit der Pandemie stark zugenommen. Bis 2036 sollen deswegen 500 Millionen Euro in die Forschung investiert werden.
www.zeit.de
November 14, 2025 at 6:50 AM
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Reposted by Billy Hanlon
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
(S+) Ex-Gesundheitsminister Lauterbach: Forschung gegen ME/CFS wird ausgeweitet
Union und SPD wollen mehr Geld in die Erforschung postinfektiöser Erkrankungen wie Long Covid stecken. Deutschland könne damit zum weltweiten Vorreiter werden, sagt Ex-Gesundheitsminister Lauterbach.
www.spiegel.de
November 13, 2025 at 11:18 PM
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
Reposted by Billy Hanlon
So 💔 & angry… that Alice is gone, Teen Vogue is gone, community care is all but gone, but dangerous infectious diseases are still being given red carpet treatment. The disability, Long Covid, & ME communities keep losing people, & it doesn’t have to be this way. We can do better. We must.
Respect Alice Wong’s call here:
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
“When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”
COVID Isn’t Going Anywhere. Masking Up Could Save My Life.
"When I am in public spaces and see most people unmasked, I feel like an expendable burden not worth saving."
www.teenvogue.com
November 16, 2025 at 12:22 AM
So 💔 & angry… that Alice is gone, Teen Vogue is gone, community care is all but gone, but dangerous infectious diseases are still being given red carpet treatment. The disability, Long Covid, & ME communities keep losing people, & it doesn’t have to be this way. We can do better. We must.
Reposted by Billy Hanlon
Available to buy now: One Red Leaf at a Time Greetings Cards.
All proceeds go to our #MEcfs research @uoe-igc.bsky.social.
Thank you @drjogreer.bsky.social & Dr Clare Raynor!
theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
All proceeds go to our #MEcfs research @uoe-igc.bsky.social.
Thank you @drjogreer.bsky.social & Dr Clare Raynor!
theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
One Red Leaf at a Time Greetings Cards - Raising funds for research into Myalgic Encephalomyelitis
Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase.
theredtreeandme.substack.com
November 16, 2025 at 12:36 PM
Available to buy now: One Red Leaf at a Time Greetings Cards.
All proceeds go to our #MEcfs research @uoe-igc.bsky.social.
Thank you @drjogreer.bsky.social & Dr Clare Raynor!
theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
All proceeds go to our #MEcfs research @uoe-igc.bsky.social.
Thank you @drjogreer.bsky.social & Dr Clare Raynor!
theredtreeandme.substack.com/p/one-red-le...
#oneredleafatatime
Reposted by Billy Hanlon
"Participants were asked to perform upper body exercise initially and bring-in the lower body exercises in week 3."
=GET by any other name.
=GET by any other name.
Resistance Exercise Therapy After COVID-19 Infection: A Randomized Clinical Trial
jamanetwork.com/journals/jam...
I've just submitted a letter about this paper. I suspect it will get rejected but 🤞 (I'll publish on a preprint if its rejected)
jamanetwork.com/journals/jam...
I've just submitted a letter about this paper. I suspect it will get rejected but 🤞 (I'll publish on a preprint if its rejected)
Resistance Exercise Therapy After COVID-19 Infection
This randomized clinical trial assesses the effects of a personalized resistance exercise intervention on exercise capacity, health status, and psychological function among adults after COVID-19 infec...
jamanetwork.com
November 18, 2025 at 11:55 AM
"Participants were asked to perform upper body exercise initially and bring-in the lower body exercises in week 3."
=GET by any other name.
=GET by any other name.
Reposted by Billy Hanlon
1) 🇺🇸 The RECOVER study published its data on Long COVID trajectories.
Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
November 18, 2025 at 8:43 AM
1) 🇺🇸 The RECOVER study published its data on Long COVID trajectories.
Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
Reposted by Billy Hanlon
Tessa Munt MP introduces the #MEWHDebate
She notes how over half those with Long Covid now meet the diagnostic criteria for ME, including teachers and healthcare workers.
Women are 5x more likely to get ME than men.
She notes how over half those with Long Covid now meet the diagnostic criteria for ME, including teachers and healthcare workers.
Women are 5x more likely to get ME than men.
November 19, 2025 at 4:32 PM
Tessa Munt MP introduces the #MEWHDebate
She notes how over half those with Long Covid now meet the diagnostic criteria for ME, including teachers and healthcare workers.
Women are 5x more likely to get ME than men.
She notes how over half those with Long Covid now meet the diagnostic criteria for ME, including teachers and healthcare workers.
Women are 5x more likely to get ME than men.
Reposted by Billy Hanlon
I've been surprised to see how many Long COVID trials focus on exercise & how few measure PEM.
Thanks to @spichaksimon.bsky.social for covering this in @thesicktimes.org
"Testing exercise is “money down the drain” & won’t advance understanding of LC, experts say"
thesicktimes.org/2025/11/21/l...
Thanks to @spichaksimon.bsky.social for covering this in @thesicktimes.org
"Testing exercise is “money down the drain” & won’t advance understanding of LC, experts say"
thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 21, 2025 at 4:47 PM
I've been surprised to see how many Long COVID trials focus on exercise & how few measure PEM.
Thanks to @spichaksimon.bsky.social for covering this in @thesicktimes.org
"Testing exercise is “money down the drain” & won’t advance understanding of LC, experts say"
thesicktimes.org/2025/11/21/l...
Thanks to @spichaksimon.bsky.social for covering this in @thesicktimes.org
"Testing exercise is “money down the drain” & won’t advance understanding of LC, experts say"
thesicktimes.org/2025/11/21/l...
Reposted by Billy Hanlon
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
November 22, 2025 at 11:23 AM
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
Reposted by Billy Hanlon
I was reminded of Anne today. I saw that it's almost 8 years since she died.
I read her last words again.
I so wish the world would have been better by now. That her words had made the impact they deserved.
That we weren't still dying.
TW: Assisted death
#SevereME #VerySevereME #PwME #NEISvoid
I read her last words again.
I so wish the world would have been better by now. That her words had made the impact they deserved.
That we weren't still dying.
TW: Assisted death
#SevereME #VerySevereME #PwME #NEISvoid
Anne Ortegren
Widermind offer advanced technical training in mobile telecommunications, mainly GSM, GPRS and 3G such as UMTS. Introducing you to future technologies through our highly effective training program, yo...
lobel.nu
November 22, 2025 at 7:58 PM
I was reminded of Anne today. I saw that it's almost 8 years since she died.
I read her last words again.
I so wish the world would have been better by now. That her words had made the impact they deserved.
That we weren't still dying.
TW: Assisted death
#SevereME #VerySevereME #PwME #NEISvoid
I read her last words again.
I so wish the world would have been better by now. That her words had made the impact they deserved.
That we weren't still dying.
TW: Assisted death
#SevereME #VerySevereME #PwME #NEISvoid
Reposted by Billy Hanlon
Brilliant post by @kacheston.bsky.social
This year, I've been lucky enough to work with @actionforme.bsky.social, as part of a collaboration between Action for ME and @durhamimh.bsky.social. (More on this soon!)
For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.
For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.
Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.
thepolyphony.org/2025/10/09/p...
thepolyphony.org/2025/10/09/p...
October 9, 2025 at 3:51 PM
Brilliant post by @kacheston.bsky.social
Reposted by Billy Hanlon
Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.
thepolyphony.org/2025/10/09/p...
thepolyphony.org/2025/10/09/p...
Privilege and Pain: Why the Medical Humanities Matter
Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.
thepolyphony.org
October 9, 2025 at 11:10 AM
Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.
thepolyphony.org/2025/10/09/p...
thepolyphony.org/2025/10/09/p...
Reposted by Billy Hanlon
This year, I've been lucky enough to work with @actionforme.bsky.social, as part of a collaboration between Action for ME and @durhamimh.bsky.social. (More on this soon!)
For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.
For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.
Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.
thepolyphony.org/2025/10/09/p...
thepolyphony.org/2025/10/09/p...
Privilege and Pain: Why the Medical Humanities Matter
Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.
thepolyphony.org
October 9, 2025 at 1:20 PM
This year, I've been lucky enough to work with @actionforme.bsky.social, as part of a collaboration between Action for ME and @durhamimh.bsky.social. (More on this soon!)
For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.
For now, this reflective post explains my motivations - and what I believe a collaborative, cross-sector approach can achieve.