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Alexis M. 🎃

@turnoftheshrew.bsky.social
1.7K followers 565 following 439 posts

begrudgingly online for chronic illness research & disability justice community. living meaningfully & unapologetically as a hermit against my will.

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Reposted by Alexis M. 🎃
Billy Hanlon @bhanlon15.bsky.social · 18h
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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Anna Holmes @annabookwriter.bsky.social · 23h
I wish everyone valued you the way you value them, but I see you, keep going.
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Erin Lee @erinmarilee.bsky.social · 02/10/2026
On Sunday October 11, Nate and I will compete in The Big Sit to raise funds for #MECFS research and we’d love your help! The Big Sit is a birding event where you try to find as many species as possible while sitting in a 17 foot circle. There are 2 ways you can help:
A white male and female couple in their 40s smile in front of a fallen southern live oak tree bleached by the sun. They are holding binoculars and smiling because they just spotted an endangered piping plover in the wild!
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23h
Our paper about the challenges and opportunities in decentralized clinical trials for #LongCOVID is out! We discuss the regulatory, clinical, & disease-specific challenges we faced in building a clinical trial network for Long COVID. Please read and share with your networks! 🧪
frontiersin.org
Frontiers | Facilitators and barriers to decentralized Long COVID platform clinical trials using repurposed drugs
Long COVID is an emerging chronic condition that results in substantial impairments in quality of life, physical function, and ability to maintain gainful em...
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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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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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Alexis M. 🎃 @turnoftheshrew.bsky.social · 27/09/2026
I’m so unbelievably tired of being online, especially when defensives have to be up & ready to scroll at so much of the BS content. I’d love to take an Internet hiatus, or even smash my phone w/ a hammer. But those of us who can rarely go into the outside world need to find community somehow.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026
A thread of all the talks from yesterday's NIH conference on multisystem disorders, including #endometriosis, #MECFS, chronic pain disorders, #lupus and more: 🧪 Talk 1: bsky.app/profile/exce...
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Casey Doherty @caseydoherty.bsky.social · 24/09/2026
A federal judge struck down the community integration provisions of the Sec. 504 rule by HHS. This removes guidance on community integration, but Sec. 504, the ADA, & Olmstead do remain the law. Disabled people have fought for decades for the right to live in our communities. We're not going back.
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Jon Douglas @atranscendedman.bsky.social · 23/09/2026
Johns Hopkins University, 11 hamsters. SARS-CoV-2 caused lasting cardiac autonomic remodeling. Early blocking of innate immune signaling or mitochondrial oxidative stress prevented the postacute dysfunction. www.heartrhythmopen.com/article/S266...
heartrhythmopen.com
Dynamic changes in cardiac autonomic function persist in the postacute phase after SARS-CoV-2 infection in a hamster model of COVID-19
Autonomic nervous system (ANS) dysfunction is a central feature of long coronavirus disease syndrome, yet little is known about how it develops during and after severe acute respiratory syndrome coron...
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valebodi.bsky.social @valebodi.bsky.social · 24/09/2026
Haptoglobin Phenotypes Stratify Post-Exertional Cognitive Dysfunction Associated with Altered Cerebral Oxygenation and Metabolic Signatures in Long COVID A.Moezzi, A. Moreau et al. (2026) #Haptoglobin #PEM #CBF #LongCOVID
mdpi.com
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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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Kristin Meekes @kmeekes.bsky.social · 24/09/2026
OMFG if I see one more person suggest that people talking about Covid in 2026 want permanent lockdowns I’m going to lose it The asks are clean air in public places, treatments for long covid, masks in places like healthcare + normalization of masking elsewhere, expanded vaccine access, sick leave
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 24/09/2026
This (& at the risk of being annoying, also ask why you’re so annoyed & whether maybe you’ve been socialized to feel that way toward certain people with less power than you)
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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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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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Open Medicine Foundation (OMF) @openmedf.bsky.social · 15/09/2026
Dr. Janet Mullington and her team released a paper on their investigation of sleep electroencephalographic microstructures. The team studied these microstructures in the context of non-restorative sleep and daytime fatigue in #MECFS and #LongCOVID. ow.ly/W6EE50ZNXq5
ow.ly
New Publication: Facility-Measured Sleep Electroencephalographic Microstructures in Long COVID - Open Medicine Foundation
New research from OMF's Computational Research Center finds measurable differences in sleep EEG microstructures in people with Long COVID and ME/CFS. Join OMF Journal Club on September 29 to go deeper.
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Solve M.E. @solveme.bsky.social · 21/09/2026
3/ Read our full statement 👉 ow.ly/pHk350ZPTLT Want to get involved? Use our toolkit to contact your Members of Congress and tell them to protect merit-based science at the NIH. Take action: ow.ly/izCt50ZPTLV
ow.ly
Solve M.E. Statement on Proposed Political Review of NIH Grants - Solve ME/CFS Initiative
Solve M.E. responds to reports of a proposed political review of NIH grants and urges continued merit-based funding for biomedical research.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 21/09/2026
Cort explores the research from Dr Chung who believes he has uncovered a game changing drug for treating inflammatory illnesses like ME/CFS, fibromyalgia, LC etc. in a new drug, a Mitochondrial Stabilizer IVO-21. This is potentially low-cost. tinyurl.com/532e5jba
tinyurl.com
IVO-21 - A Paradigm Changer AND a Mitochondrial Drug for ME/CFS? - Health Rising
Could a new mitochondrial drug called IVO-21 be the answer to the energy problems in ME/CFS, fibromyalgia, and long COVID?
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Andrew Gifford @andrewgiffordphoto.bsky.social · 16/09/2026
Any spare Oxaloacetate I can buy from you? It's currently on back order due to demand. Thanks! #Oxaloacetate
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Anil van der Zee @anilvanderzee.bsky.social · 20/09/2026
Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark. This looks really amazing!! vimeo.com/user10350947... #pwme #myalgicE #millionsmissing #severeME
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Baby Ruthless @baby-ruthless.bsky.social · 20/09/2026
believing it's possible to think your way out of a biological disease is the bargaining stage of grief
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 18/09/2026
Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. 👉 Take the Survey: ow.ly/AVBY50ZPaJM
Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.
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Solve M.E. @solveme.bsky.social · 16/09/2026
4/ Add your comment in ~2 minutes by Sept 18: →Go to niaid.nih.gov/about/niaid-... → Scroll down, click “Leave a comment,” →Submit. For suggested wording + Solve’s full comment: ow.ly/v0no50ZO5Ve
niaid.nih.gov
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Solve M.E. @solveme.bsky.social · 16/09/2026
1/ 🚨Take action by Friday! NIAID has proposed eliminating its Division of Clinical Research — the infrastructure behind its clinical trials — on a public comment window of just five days. #MECFS #LongCOVID
Solve M.E. action alert on a deep teal background. Headline: Take action by Friday. Text: NIAID has proposed eliminating its Division of Clinical Research, the infrastructure behind clinical trials, on a five-day comment window. Comment by Sept 18.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 17/09/2026
You can submit a comment here by tomorrow/Friday: forms.cloud.microsoft/Pages/Respon... Info on the reorganization: www.niaid.nih.gov/about/niaid-... Comment template from SolveME:
I'm writing as [a person with ME/CFS / a Long Covid patient / a caregiver / a supporter] to ask NIAID to slow down this proposed reorganization of the Division of Clinical Research. Consolidated clinical research infrastructure is what turns discoveries into treatments patients can actually access, and millions of us living with [ME/CFS / Long Covid] are counting on the clinical trials NIAID supports, including the Long Covid treatment trials now underway. Please extend the public comment period so the public can review the full plan, and please protect the coordinated clinical research oversight this division provides. [One line in your own words — who you are, and what waiting for treatment has meant for you or your family.] Thank you.
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#MEAction Network @meactnet.bsky.social · 15/09/2026
Comments are open until September 18th. See the excellent article by @exceedhergrasp1.bsky.social: www.meaction.net/post/nationa... It has further links and information. Please take care. It is a lot of info to take in! I tried to pull the key parts in this thread but it is complicated!
meaction.net
National Institute of Allergy and Infectious Diseases proposes reorganization plan
The National Institute of Allergy and Infectious Diseases (NIAID), has released a proposal to eliminate its Division of Clinical Research (DCR) and move the division’s programs and responsibilities in...
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#MEAction Network @meactnet.bsky.social · 17/09/2026
It is #DisabilityVotingRightsWeek. Let's talk mail-in voting. If you are voting by mail please request and return your ballot as early as possible. Each state has different rules so head to www.vote.org/absentee-ballot #RevUp2026 AAPD - The American Association of People with Disabilities
Red mailbox illustration with text encouraging voters to request and return mail ballots early, including a hotline for voting help. Text: Are you voting by mail? Request and return as early as possible. More info at www.vote.org/absentee-ballot. The Election Protection hotline 1 866 OUR VOTE
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Betty C. Jung @bettycjung.bsky.social · 17/09/2026
Varicella Zoster Virus Can Cause Serious Disease Beyond Chickenpox and Shingles Varicella zoster virus can reactivate years after chickenpox and affect every organ without the telltale shingles rash, making this treatable infection difficult to recognize news.cuanschutz.edu/news-stories...
news.cuanschutz.edu
Varicella Zoster Virus Can Cause Serious Disease Beyond Chickenpox and Shingles
CU Anschutz researchers highlight the broad range of neurological and systemic diseases caused by varicella zoster virus, sometimes without a rash
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
We're thrilled to see positive results from @biovie.bsky.social's clinical trial on bezisterim in #LongCovid! The drug benefited patients with high levels of fatigue, PEM and/or cognitive impairment, with multiple significant and trending results, including objective cognitive tests. 1/
The summary “forest chart” chart shows only those endpoints that reach statistically significant or are trending, and the charts for all endpoints can be found in the full data announcement presentation that was discussed during BioVie's conference call.
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 16/09/2026
In #chronicillness it is necessary to stop desiring to be understood by other people. As a person who grew up feeling perpetually misunderstood by caregivers, it’s been a hard thing to unlearn. Then there’s realizing that some people are choosing to continue misunderstanding, & letting them go.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 15/09/2026
They still need people with ME or caregivers in Mississippi, West Virginia, & North Dakota. Please share!
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 15/09/2026
NEW: Novel drug bezisterim might help with fatigue, PEM, and neurological symptoms in Long COVID, according to preliminary results BioVie shared today. These are early findings that will need more review, but it's exciting to see a positive trial result for once! More @thesicktimes.org:
thesicktimes.org
Bezisterim may help with some Long COVID symptoms, drug’s developer reports in early trial results - The Sick Times
While the phase 2 clinical trial results, shared by BioVie in a webinar on Tuesday, have yet to be peer-reviewed, investigators say they can inform a confirmatory phase 3 trial.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/09/2026
Article incoming from #MEAction on this, but for now I need y'all to know that while the comment box isn't marked at all, it has a character or word limit: about 4000 characters (or 525 words) seems to be it. Just so you don't write a huge thing and end up chopping it down, like I did.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 12/09/2026
But why would there be so much misinfo/disinfo swirling around debilitating illnesses like ME & Long Covid that affect millions of people? I dunno, maybe the corporations who should be on the hook are happy not having to pay up & manufacturing doubt is a great way to delay taking responsibility?
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 12/09/2026
Every decision I make about what to do vs. avoid is based on potential for permanent decline, never on temporary discomfort. People really don’t get that. I don’t GAF if my symptoms get worse short-term. I want to LIVE. I perpetually hold myself back to avoid losing function *long-term.* #MECFS
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪 Talk 1: bsky.app/profile/exce...
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Ezra S @ezra.zone · 11/09/2026
I think it’s important to know that people like this are often referred to by the media as experts in illnesses like Long COVID and ME/CFS.
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Tom Kindlon @tomkindlon.bsky.social · 06/09/2026
“For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief” (Smithsonian magazine) by Mike Mariani www.smithsonianmag.com/innovation/m... Feature article on research into Long Covid. #LongCovid #PASC #PostCovid #PostCovid19
smithsonianmag.com
For Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them Relief
Long Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers
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Jim Young @oyoguhito.bsky.social · 03/09/2026
‘Deep connection’ found across ME and other exhaustion illnesses www.thetimes.com/article/fd78...
thetimes.com
‘Deep connection’ found across ME and other exhaustion illnesses
Scientists ‘approaching unifying theory of fatigue’ from DNA structure in cells of people with ME, long Covid, PTSD, rheumatoid arthritis and multiple sclerosis
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Billy Hanlon @bhanlon15.bsky.social · 02/09/2026
Nature: 'When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes' 'Hundreds of millions of people have long-term conditions as a result of an infection. Researchers are working out how to help them.' www.nature.com/articles/d41...
nature.com
When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes
Hundreds of millions of people have long-term conditions as a result of an infection. Researchers are working out how to help them.
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Julia Métraux @juliametraux.bsky.social · 01/09/2026
"The work and everyday labor of living with ME/CFS contains this recursive loop of everyday labor of being ill." For @motherjones.com, I interviewed @elimrogers.bsky.social on her book tracing the history of ME/CFS and what it's like to be exhausted in America. www.motherjones.com/media/2026/0...
motherjones.com
The relentless work of being sick
A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.
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ME/CFS San Diego @mecfssd.bsky.social · 01/09/2026
Pillow Writers en Español: An int'l Spanish-language writing group for people w/ ME/CFS or LC resumes 9/1. Open to writers at all levels. Guest host: Poet Maria R. Palacios. pillowwriters.wordpress.com/2025/03/05/i...
pillowwriters.wordpress.com
Información sobre Pillow Writers en Español
Bienvenides a “Pillow Writers en Español”, el grupo internacional de escritura de personas con encefalomielitis miálgica/síndrome de fatiga crónica (EM/SFC) o personas con covid prolong…
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Isabella Cueto @isabellacueto.bsky.social · 31/08/2026
After 14 years, there are new migraine prevention guidelines from the American Academy of Neurology. They feature many new treatments that have become available for people with 4+ migraine days per month – many of whom go without prophylactic treatment! www.statnews.com/2026/08/31/m...
statnews.com
New guidelines on migraine prevention reflect increasing options for patients
“There has been a wealth of new treatment available” for migraine prevention, said a co-author of new guidelines released Monday.
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The Guardian @theguardian.com · 30/08/2026
Statins can reduce dementia risk by up to 15%, long-term study suggests
theguardian.com
Statins can reduce dementia risk by up to 15%, long-term study suggests
The cholesterol-busting drugs are more effective the earlier in life they are taken, 15-year research project indicates Statins can lower the risk of dementia by 15%, and the earlier in life they are taken the higher the chances of avoiding the disease, a 15-year study suggests. The number of people living with dementia globally is forecast to nearly triple to 153 million by 2050. But experts believe almost half of dementia cases could be prevented or delayed. Continue reading...
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Billy Hanlon @bhanlon15.bsky.social · 01/09/2026
'RECOVER-VITAL clinical trial finds no benefit of extended duration of PAXLOVID for Long COVID' 'The study recruited 959 adult patients who had Long COVID from 69 sites across the United States and collected data between July 2023 and early 2025' recovercovid.org/news/recover...
recovercovid.org
RECOVER-VITAL clinical trial finds no benefit of extended duration of PAXLOVID for Long COVID
RECOVER researchers conducted a clinical trial to test whether PAXLOVID, an antiviral drug, could reduce Long COVID symptoms when taken for 15 or 25 days. The study enrolled 959 adults with Long COVID...
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Miles W. Griffis @mileswgriffis.bsky.social · 28/08/2026
BREAKING: The Department of Defense is funding a new clinical trials program for Long COVID with an initial grant of $8 million. Called PROBE-PASC, the program will focus on mechanistic trials that will study the disease’s underlying biology in tandem with testing treatments.
A graphic features an aerial photo of the U.S. Pentagon building. Text overlaid on the photo reads, “The Sick Times: Breaking: Department of Defense announces $8 million grant for Long COVID clinical trials”.
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ME/CFS San Diego @mecfssd.bsky.social · 27/08/2026
Vitruvias Thyroid Tablets Recall: FDA recalls one lot of 30 mg tablets due to potential superpotency. Check lot 504950, exp. 9/30/2026, and contact your clinician before stopping. www.fda.gov/safety/recal...
fda.gov
Vitruvias Therapeutics, Inc Issues Nationwide Recall of One Lot of Thyroid Tablets, USP 30 mg Due to Potential Super Potency
AUBURN, Ala. (August 21, 2026) – Vitruvias Therapeutics, Inc. is voluntarily recalling one lot (Lot. No. 504950) of Thyroid Tablets, USP 30 mg to the consumer level. The product is being recalled beca...
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 24/08/2026
Wow. Just skimming this paper & it’s extremely validating. All the ways we’re pressured & shamed into hiding our reality & apt emotions due to affective injustice. I feel it in almost every interaction I have with anyone who doesn’t have ME. It’s that omnipresent. link.springer.com/article/10.1...
link.springer.com
ME/CFS and the emotional toll of persistent disbelief: from epistemic to affective injustice - Medicine, Health Care and Philosophy
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic illness whose sufferers are frequently met with disbelief, stigmatization, and psychologization in both clinical a...
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Jon Douglas @atranscendedman.bsky.social · 23/08/2026
FH JOANNEUM researchers propose that PEM in ME/CFS and Long COVID may reflect disrupted recovery across cardiovascular, metabolic, autonomic and immune systems, with repeated episodes potentially adding cardiometabolic strain. link.springer.com/article/10.1...
link.springer.com
A cardiometabolic perspective on post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID - Cardiovascular Diabetology
Post-exertional malaise (PEM), the defining feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is increasingly recognized in individuals with Long COVID. Although traditionally vi...
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