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Billy Hanlon

@bhanlon15.bsky.social
8.7K followers 8.3K following 9.5K posts

ME/CFS | Long COVID | IACC

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Billy Hanlon @bhanlon15.bsky.social · 1h
The Star (WA): 'Nurse now homebound from Long COVID: Only Congress can change what happens next' 'Long COVID is real. ME/CFS is real. It came for me, and it can come for anyone. What’s left is a single line in a spending bill and lawmakers willing to write it.' www.grandcoulee.com/story/2026/0...
grandcoulee.com
Nurse now homebound from Long COVID: Only Congress can change what happens next
I spent nearly 30 years as a nurse, including in an infectious disease clinic, before I stepped away, worn down by the relentless work. But when COVID swept the nation, I came back to help my fellow S...
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Billy Hanlon @bhanlon15.bsky.social · 1h
🍁🍁🍁
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Billy Hanlon @bhanlon15.bsky.social · 4h
July 2020, WSJ: 'Covid’s Harrowing Complications' "..recovery is sometimes incomplete, with some patients experiencing long-term adverse effects that resemble a condition variously known as myalgic encephalomyelitis or chronic fatigue syndrome..." www.wsj.com/articles/cov...
wsj.com
Opinion | Covid’s Harrowing Complications
The disease is less deadly than initially feared, but it can be far worse than a cold.
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Billy Hanlon @bhanlon15.bsky.social · 4h
April 2021, Boston Globe: 'Fatigue, headaches, and worse: For some, neurologic symptoms are lingering after COVID' www.bostonglobe.com/2021/04/12/n...
bostonglobe.com
Fatigue, headaches, and worse: For some, neurologic symptoms are lingering after COVID - The Boston Globe
With no cure at hand for the mysterious syndrome, clinics are helping “long-hauler” patients manage their symptoms and gradually get better.
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Billy Hanlon @bhanlon15.bsky.social · 4h
March 2021, Washington Post: 'Opinion Long-haul covid-19 is a big mystery of the pandemic. Scientists must solve it.' www.washingtonpost.com/opinions/lon...
washingtonpost.com
Opinion | Long-haul covid-19 is a big mystery of the pandemic. Scientists must solve it.
Why do some people still experience symptoms months after infection?
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ME Association @meassociation.org.uk · 8h
The American Psychological Association: The hidden harms of medical gaslighting   Read more: www.apa.org/monitor/2026/10/harms-m…  #pwME #MECFS #LongCovid #Fibromyalgia #Endometriosis #MedicalGaslighting
IMAGE DESCRIPTION: Photo of a woman sat in bed, with her head in her hands. 
Wording reads: The American Psychological Association: The hidden harm of medical gaslighting. 
MEA logo.
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Jon Douglas @atranscendedman.bsky.social · 23h
About 22,400 Quebec healthcare workers. During Omicron, a COVID booster was associated with 57% lower Long COVID risk, but protection waned to about 30% by 6 months. Vaccination lowered risk, not to zero. www.cidrap.umn.edu/vaccine-poli...
cidrap.umn.edu
Long COVID, disputing measles deaths, and newborns without RSV protection: The State of US Vaccine Policy
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Jon Douglas @atranscendedman.bsky.social · 21h
UCSF studied 36 people with Long COVID. A long acting SARS-CoV-2 antibody did not improve symptoms overall, but exploratory scans showed reduced T-cell activation in brain, spinal cord and salivary tissue after treatment. www.nature.com/articles/s41...
nature.com
SARS-CoV-2-specific monoclonal antibody AER002 in Long COVID: an exploratory randomized phase 2a mechanistic trial - Nature Communications
In this exploratory randomized trial, the monoclonal antibody AER002 was safe but did not improve clinical or biomarker outcomes in Long COVID. Post-hoc findings suggest baseline antibody levels and d...
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Billy Hanlon @bhanlon15.bsky.social · 7h
American Psychological Association: 'The hidden harms of medical gaslighting' 'These conditions, which include fibromyalgia, long COVID, endometriosis, chronic fatigue syndrome...put patients at high risk of experiencing “medical gaslighting"...' www.apa.org/monitor/2026...
apa.org
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Billy Hanlon @bhanlon15.bsky.social · 7h
American College of Cardiology: 'POTS: Recognition Is Rising, But Management Gaps Remain' 'The next challenge may be ensuring clinicians have the resources, referral pathways and educational support needed to confidently guide patients....' www.acc.org/Latest-in-Ca...
acc.org
Feature | POTS: Recognition Is Rising, But Management Gaps Remain - American College of Cardiology
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Adam @abrokenbattery.bsky.social · 01/10/2026
“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.
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Lane🔻 @lane1312.bsky.social · 01/10/2026
With moderate ME/Cfs, if I can do a job it’s likely my symptoms will get worse for doing too much physically or mentally. Though, I need a job to live. There’s no disability support for me in Texas. I don’t know what to do anymore. I’m so angry and frustrated
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Billy Hanlon @bhanlon15.bsky.social · 22h
CIDRAP: 'Long COVID, disputing measles deaths, and newborns without RSV protection: The State of US Vaccine Policy' 'This past month..many of you asked why we didn’t address long COVID' 'Patients were the first to recognize long COVID, and the first to name it' www.cidrap.umn.edu/vaccine-poli...
cidrap.umn.edu
Long COVID, disputing measles deaths, and newborns without RSV protection: The State of US Vaccine Policy
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CIDRAP @cidrap.bsky.social · 01/10/2026
The latest on the state of US vaccine policy covers: -Long COVID, -Disputing measles deaths, -Newborns without RSV protection, and lots more. More on the current landscape of US vaccine policy: bit.ly/4ygTxUJ @unbiasedscipod.bsky.social
Woman weary sitting up in bed
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 21/09/2026
Just chiming in that while I’m not aware of GET being explicitly prescribed for ME in the US, it effectively still is because almost no doctors will diagnose ME/CFS, & the default advice remains “keep up the exercise & healthy eating & check back in 6 months.”
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victoria @vashetc.blacksky.app · 23/09/2026
sometime i feel the word disability tax doesnt fully describe the egregious dehumanization disabled folks constantly have to deal with. its the never-ending administrative violence on top of other forms of violence, that makes you physically and mentally unwell.
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Katy B @katybrc.bsky.social · 24/09/2026
"Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed" - George Monbiot #ME #pwME #MEcfs www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 29/09/2026
The 2026 Stanford Community Symposium recordings are now on YouTube. Every talk is now online, including Danielle Meadows, PhD, OMF's VP of Research Programs and Operations, on the clinical trial landscape in ME/CFS and Long COVID. ▶️ ow.ly/E7Zk50ZSFZy
Announcement for 2026 Stanford Community Symposium recordings available on YouTube featuring Ronald W. Davis, PhD, and Danielle Meadows, PhD.
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october "pre-order The Struggle Is Always Worth It now!" krausch @octoberk.bsky.social · 29/09/2026
this investigation on long COVID inside of prisons is out today at the Sick Times! I worked on this piece for months and am so grateful to the folks who shared their experiences with me. I'll write up a real thread a little later, but you can read it now: thesicktimes.org/2026/09/29/i...
thesicktimes.org
I interviewed five people with Long COVID in prison. They are invisible in the system. - The Sick Times
While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to me...
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ThereForME @thereforme.bsky.social · 01/10/2026
The Guardian has published our letter responding to George Monbiot's article about how people with ME are abandoned, dismissed and gaslighted. We point out the inadequate political attention, and call for action from the Health & Social Care Select Committee. www.theguardian.com/society/2026...
George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with ME. Not only is ME a devastating condition, but too often those affected are failed by the very systems meant to care for them.

The level of political attention the issue has received is nowhere close to the scale of the problem. The government’s strategy on ME, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of ME – “exploring” whether a specialised service could be commissioned – is now delayed until April 2027. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
Karen Hargrave and Emma Gore-Lloyd
Co-founders, ThereForME charity
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Darren Parkinson @greendarrenshipley.bsky.social · 01/10/2026
I am no longer a registered nurse. Not through any choice, but because I got #LongCovid. 2 years ago I lost my nursing job because I'm too ill too work. Today my nursing registration expired. 20+ yrs given to the NHS. Ended by getting a disease without a cure.
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Patient-Led Research Collaborative @patientled.bsky.social · 01/10/2026
A new publication is out from PLRC member Dr. Alison Cohen of UCSF! "We encourage state legislatures to pass legislation that requires all schools to make changes to their infrastructure to support cleaner air to protect students & teachers." #LongCovid
journals.sagepub.com
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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ISB @isbscience.org · 30/09/2026
What can the immune system tell us about #LongCOVID? Join ISB President Jim Heath, PhD, Oct. 13 for a free virtual Research Roundtable on persistent immune responses, autoantibodies and an upcoming NIH-sponsored Long COVID Hackathon using RECOVER data. Register: isbscience.zoom.us/webinar/regi...
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Billy Hanlon @bhanlon15.bsky.social · 01/10/2026
Looking forward to this talk by Institute for Systems Biology and Dr. Jim Heath
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Billy Hanlon @bhanlon15.bsky.social · 01/10/2026
The Guardian: 'Specialist services are vital to help people with ME/CFS' 'Readers respond to George Monbiot’s article about how those with myalgic encephalomyelitis, or chronic fatigue syndrome, have been failed by the health system' www.theguardian.com/society/2026...
theguardian.com
Specialist services are vital to help people with ME/CFS | Letter
Letters: Readers respond to George Monbiot’s article about how those with myalgic encephalomyelitis, or chronic fatigue syndrome, have been failed by the health system
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Billy Hanlon @bhanlon15.bsky.social · 01/10/2026
March 2025, MPR: '24 Minnesotans reflect on how COVID-19 changed their lives' 'In January, the state released its first survey on the impacts of long COVID. Four in ten Minnesotans who contracted the virus reported that they struggled with lingering health problems' www.mprnews.org/episode/2025...
mprnews.org
24 Minnesotans reflect on how COVID-19 changed their lives
On March 13, 2020, Gov. Tim Walz declared the COVID-19 pandemic a peacetime emergency. Five years later, Minnesotans look back on the early days of the public health crisis and the mark it left on the...
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Billy Hanlon @bhanlon15.bsky.social · 01/10/2026
Forbes: 'This Former OpenAI Exec Is Trying To Cure Chronic Diseases, Including Her Own' 'Sufferers of complex, chronic diseases like POTS and long COVID often spend years searching for relief. The longtime tech exec started ChronicleBio to find treatments using AI..' www.forbes.com/sites/amyfel...
forbes.com
Former OpenAI Exec Fidji Simo’s $20 Million Plan To Solve Her Chronic Disease And Others
Sufferers of complex, chronic diseases like POTS and long COVID often spend years searching for relief. The longtime tech exec started ChronicleBio to find treatments using AI and lots of biological d...
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Jon Douglas @atranscendedman.bsky.social · 01/10/2026
ChronicleBio is using AI and deep biological data to hunt treatments for POTS, Long COVID and other complex chronic diseases. Cofounder Fidji Simo knows the problem personally after POTS left her unable to sit or stand for long. www.forbes.com/sites/amyfel...
forbes.com
Former OpenAI Exec Fidji Simo’s $20 Million Plan To Solve Her Chronic Disease And Others
Sufferers of complex, chronic diseases like POTS and long COVID often spend years searching for relief. The longtime tech exec started ChronicleBio to find treatments using AI and lots of biological d...
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Billy Hanlon @bhanlon15.bsky.social · 01/10/2026
MPR: 'Renee Good's family files civil lawsuits against U.S., federal agents' 'The lawsuits are against the United States, individual federal agents and officials for the January shooting and death of Good.' www.mprnews.org/story/2026/1...
mprnews.org
Renee Good's family files civil lawsuits against U.S., federal agents
The family of Renee Good has filed two civil lawsuits against the United States, a federal agent and Trump administration officials for the fatal shooting of Renee Good in Minneapolis last January.
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Billy Hanlon @bhanlon15.bsky.social · 01/10/2026
The Conversation: 'Covid fatigue linked to reduced brain blood flow' 'For many people living with long COVID, things are different. Reading, working at a computer or concentrating on a conversation can require far more effort than it once did...' theconversation.com/covid-fatigu...
theconversation.com
Covid fatigue linked to reduced brain blood flow
Everyday activities can require enormous effort for people living with post-COVID fatigue. This study examines the brain mechanisms that may contribute to fatigue.
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Jon Douglas @atranscendedman.bsky.social · 28/09/2026
Royal Society of Medicine editorial. Long COVID is real and linked to sustained increases in healthcare use. The editor argues that underfunding medical science and continuity of care is a costly mistake for patients and health systems. journals.sagepub.com/doi/10.1177/...
journals.sagepub.com
Long covid and other wise investments of time and money - Kamran Abbasi, 2026
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Jon Douglas @atranscendedman.bsky.social · 29/09/2026
Washington University, >90,000 hospitalized patients. Flu was linked to health problems lasting up to 18 months, including lung, brain and heart effects. Acute infection can end while the biology keeps unfolding. www.washingtonpost.com/wellness/202...
washingtonpost.com
Column | ‘Long flu’ can linger for months. Here’s how to reduce your risk.
Persistent symptoms can harm the lungs and other organs, including the brain.
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Jon Douglas @atranscendedman.bsky.social · 30/09/2026
CDC sent me the 2025 NHIS data this week, and one number stuck with me. 8.7 million American adults were living with Long COVID in 2025. That's 1 in 30 of us. It's easy to stop seeing a crisis once it stops being new. It's still happening. www.cdc.gov/nchs/nhis/do...
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CIDRAP @cidrap.bsky.social · 30/09/2026
Study: More than 2 million new cancer cases caused by infections in 2024 A dozen infectious pathogens contribute to cancer. Finding ways to prevent them could help millions avoid a cancer diagnosis. Read more: bit.ly/4rOiPYE
Two women embrace. One wears a pink scarf on her head
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Billy Hanlon @bhanlon15.bsky.social · 01/10/2026
Many thanks to @angeladavismpr.bsky.social for covering this important topic today with @mprnews.org
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valebodi.bsky.social @valebodi.bsky.social · 30/09/2026
Sleep in #ME/CFS shows marked night-to-night fluctuation under free-living conditions-results from a matched case-control study #pwME
link.springer.com
Sleep in myalgic encephalomyelitis/chronic fatigue syndrome shows marked night-to-night fluctuation under free-living conditions—results from a matched case-control study - Journal of Clinical Sleep M...
Purpose Unrefreshing and non-restorative sleep is a hallmark complaint in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, little is known about their habitual sleep a...
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C.H. Romatowski @chromatowski.bsky.social · 30/09/2026
From this WashPost article on the long term effects of the flu: “When there’s potential for viruses to cause neuronal damage, then ‘we have to prevent getting infected as much as possible,’ [neurobiologist] Hosseini said.”
washingtonpost.com
Column | ‘Long flu’ can linger for months. Here’s how to reduce your risk.
Persistent symptoms can harm the lungs and other organs, including the brain.
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Angela Davis MPR @angeladavismpr.bsky.social · 30/09/2026
Did you know that for some people the symptoms of COVID-19 never went away? Years later many folks are still dealing with severe fatigue, brain fog, joint pain & loss of taste or smell. On MPR News I talked with a doctor & a public health leader about Long COVID. . www.mprnews.org/episode/2026...
mprnews.org
Long COVID affects many Minnesotans years after the pandemic
It’s been six years since the start of the COVID-19 pandemic, but many Minnesotans are still suffering its aftermath. MPR News host Angela Davis talks about the extreme fatigue, brain fog and other sy...
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Billy Hanlon @bhanlon15.bsky.social · 30/09/2026
Pharmacy Times: 'Expert Q&A: Researcher Urges Autonomic Assessment for Patients With Long COVID' Marie-Claire Seeley, RN, PhD: 'The important clue is the orthostatic pattern: a racing heart and other symptoms that worsen on standing and improve on lying down' www.pharmacytimes.com/view/expert-...
pharmacytimes.com
Expert Q&A: Researcher Urges Autonomic Assessment for Patients With Long COVID | Pharmacy Times
Marie-Claire Seeley, PhD, MNurs, RN, discusses standing tests, medication review, and what inflammatory findings may mean for future POTS treatment.
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Billy Hanlon @bhanlon15.bsky.social · 30/09/2026
Chicago Parent: Long COVID hits women harder: What a new Northwestern study means for Chicago moms 'A Chicago-based study finds women with long COVID report more brain-related symptoms, more fatigue and more trouble focusing than men. Here's what that means..' www.chicagoparent.com/health/long-...
chicagoparent.com
A Northwestern study finds long COVID hits women harder
A Northwestern Medicine study of 2,300+ patients finds women with long COVID have more brain and nerve symptoms. Here's what parents should know.
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Billy Hanlon @bhanlon15.bsky.social · 30/09/2026
(IYKYK) FOX9 trying to trigger a little PTSD w/the locals today….
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Sue Poncin @sueponcin.com · 17/09/2026
Yes. And. Them: People seem more run down and tired….. Me: It’s Long Covid, it’s been Long Covid for 6 years.
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Sue Poncin @sueponcin.com · 17/09/2026
Hope looks like reading a book to feel less alone 🌈 Madelleine Muller sums up how I feel living with Long Covid: “If healthy person jumped into my body, they would have an immediate panic attack and believe they were about to die because that’s what it feels like.”
Cover of the book 
What is Myalgic Encephalomyelitis Like? 
Patient & Caregiver Perspectives

The cover art looks like blue, green, and yellow water flowing together with the title in white print on a dark blue rectangular strip near the top.
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Sue Poncin @sueponcin.com · 24/09/2026
To my fellow sufferers: thank you for continuing to use your limited energy and cognition to share your Long Covid stories and for encouraging me to share mine. We are making a difference.
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The Sick Times @thesicktimes.org · 23/09/2026
The Telegraph recently published an article about "sickfluencers" titled “How having a disability became cool." We've republished a piece by Julia Doubleday at The Gauntlet pushing back against the article, which she calls "absurd on its face." thesicktimes.org/2026/09/21/c...
A young woman stands by a staircase with a backdrop of tree canopy.  She wears a white, high quality mask and has long dark hair. She wears a teal sweatshirt and black pants. The text reads, “The Gauntlet x The Sick Times. COVID-19 — not TikTok — is disabling young women “Sickfluencers” are symptoms of a mass disabling event. By Julia Doubleday.” “The country is sicker than it’s ever been before” — now why would that be? Six years after COVID-19 hit, four years after the virus has been allowed to run totally rampant without mitigation, the country is sicker than it’s ever been before, but we can’t come up with any reason why that would be other than “women be faking?”
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Sue Poncin @sueponcin.com · 28/09/2026
To my fellow Long Haulers: I met Mateo in a Long Covid support group and the checked out his podcast. His latest episode had me laughing out loud and nodding along. Covid is Stoopid open.spotify.com/episode/5kgj...
open.spotify.com
Tales from the Underwhelm
Covid is Stoopid · Episode
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Sue Poncin @sueponcin.com · 29/09/2026
A Pause on Hope: Resting from recovery www.sueponcin.com/blog/a-pause... Long Covid has been a constant in my life since January 2021 and since April 2021 I have been fighting and hoping for a cure, an answer, a light at the end of the tunnel. I'm tired. Here is your permission to rest.
sueponcin.com
A Pause on Hope — Sue Poncin
Resting from recovery “Hope is a verb” has been my mantra since the day I saw it on a sweatshirt and I’ve been living it since the day I hit rock bottom in April 2021 and decided not to quit. I start...
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The Vertlartnic @thev.bsky.social · 28/09/2026
Covid Infections Can’t Be Causing Long Term Health Problems, Because Look Over There At The Squirrel
A squirrel

Headline:
Covid Infections Can’t Be Causing Long Term Health Problems, Because Look Over There At The Squirrel
Story by Burt Gusset and Hamilton Pork

Photo from Unsplash
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Stephanie Cranford @stephcranford.bsky.social · 11/04/2026
Hi, I'm Stephanie, writing about hockey and disability. I'm in Minnesota, I've got long covid, and I'm really excited about Artemis II landing safely!! #QueerWritersChat
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Sue Poncin @sueponcin.com · 13/08/2026
Hope looks like Long Covid research 🌈🌈 At the University of Minnesota for the Reverse-LC trial. To date there are 319 enrolled out of 550. When I started a year ago, I was #17.
Me wearing a pink Dynamically Disabled by Long Covid tshirt and a coral mask sitting in a wheelchair waiting g for my Southwest flight to Minneapolis.A metallic sculpture of a human head in the lobby of the MRI center at University of Minnesota. The sculpture is made of varying sizes of metallic pieces that move with wind.
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