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Ashley Hultman

@ashleyhultman.bsky.social
1.6K followers 965 following 123 posts

#TeachMETreatME #hEDS #MyalgicEncephalomyelitis #MESpine #CCI #POTS #longCovid #AuDHD #endo • Capitol Hill, AFL-CIO, and AFT alum • She/her

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Reposted by Ashley Hultman
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 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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Liz Nevra A. @nlizaki.bsky.social · 12/08/2026
Hi guys, I need IV fluids every day now due to very severe ME. The monthly cost has increased from £122 to £421.95. I'm scared. I want to live and stay in contact with the world. Receipts attached. Thank you so much. Gofundme.com/f/save-nevra Paypal.me/SaveLizNevra #pwME #severeme
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Liz Nevra A. @nlizaki.bsky.social · 30/07/2026
I've run out of pleas and spoons ya know ... love #pwmE though Gofundme.com/f/save-nevra Paypal.me/SaveLizNevra #SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing
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Liz Nevra A. @nlizaki.bsky.social · 15/07/2026
💜🩵 Save Nevra - July Update 🩵💜 Gofundme.com/f/save-nevra Paypal.me/SaveLizNevra #SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing
Nevra's situation has deteriorated significantly. After a recent hospital admission, she has moved back temporarily to her original home, which is unsustainable long term. She's living in a non-ME friendly environment, which given her severe state puts her physical and mental health at extreme risk. The urgent need is to fundraise for a safe, mold-free apartment of her own, trustworthy carers, a PA who can help her move, and help with patient advocacy and care coordination. July goals: Apartment deposit: £1288.03, Carer: £171.74, PA: £214.67, Food: £201.25. Infusions: £122.08, Dr Trevino appointment: £74.84, Total: £2072.61Nevra is currently managing approximately 10 different difficult situations, including negotiations with the hotel to escape mould and methane gas, negotiating with her family, local PAs, lawyers and local doctors to ensure they don't drop her as a patient. This is above what any very severe ME patient should do and is completely unsustainable for her. She also still needs financial support for upcoming specialist appointments. Care in another country would be preferable, but this could cost $100k for an air ambulance alone.
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Reposted by Ashley Hultman
Ashley Hultman @ashleyhultman.bsky.social · 05/07/2026
A group of us are fundraising for Nevra to have a caregiver in place, a permanent, safe, and accessible home, health care, and medication. Please check out her fundraiser below, consider a donation if you can, or help amplify her story. Thank you! 💙
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Ashley Hultman @ashleyhultman.bsky.social · 05/07/2026
A group of us are fundraising for Nevra to have a caregiver in place, a permanent, safe, and accessible home, health care, and medication. Please check out her fundraiser below, consider a donation if you can, or help amplify her story. Thank you! 💙
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Reposted by Ashley Hultman
Liz Nevra A. @nlizaki.bsky.social · 19/06/2026
Please continue sharing & donating Gofundme.com/f/save-nevra Paypal.me/SaveLizNevra #KeepNevraOutOfDV #MECFS #SevereME #VerySevereME #MyalgicEncephalomyelitis #DisabilitySupport #ChronicIllness #MedicalCrisis #MEAwareness #HelpNevra
gofundme.com
Donate to Help Nevra Secure Surgery, Care, and Safety, organized by Adrian Bamforth
Nevra is a 28 year old young woman in Karachi, Pakistan, who has been suff… Adrian Bamforth needs your support for Help Nevra Secure Surgery, Care, and Safety
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Ashley Hultman @ashleyhultman.bsky.social · 26/06/2026
Boosting for Nevra 💙
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Reposted by Ashley Hultman
🆂🆃🅴🆅🅴🅽 🌈☕🐸 @zencoffeebreak.com · 22/10/2024
owning a cat is weird. I'm part parent and part child. I make her meals and she makes me go to bed when she decides it's my bedtime
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derek guy @dieworkwear.bsky.social · 16/06/2026
RIP Mark Rothko. You would have loved how the hydrogen peroxide bleach is only turning the Reflecting Pool blue around the perimeter
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Liz Nevra A. @nlizaki.bsky.social · 11/06/2026
Urgent Nevra June Update! We have raised £2,732- enough to temporarily cover urgent costs. But we still have £2,918.54 left to raise toward the next critical stage of keeping Nevra safely housed & medically supported. Nevra's facing the increasing likelihood of having to return to DV.
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Reposted by Ashley Hultman
The Onion @theonion.com · 15/04/2026
Poor Sleep Linked To Gong theonion.com/poor-sleep-linked-to-g…
Poor Sleep Linked To Gong
Instrument’s Loud, Resonant Crash Can Be Disruptive
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Jasmine 🌌🔭 @astrojaz.bsky.social · 16/04/2026
“every triumph, every tear, every birthday cake, every disappointment, every skinned knee, every dust off, every draped flag, every first dance, every missed flight, every shift change, every twirl hug, every wave goodbye, every love note, every human. us. you. all we have.” - christina koch 🌎
Earth half-illuminated in space.
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Aaron Rupar @atrupar.com · 12/04/2026
Kaine: "You don't sucker punch somebody in a bar and then blame your buddies when they don't join the fight with you. If the president wanted the support of allies, he should've respected them instead of putting tariffs on their economies and trash talking them."
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Liz Nevra A. @nlizaki.bsky.social · 28/02/2026
3rd dose at 2 pm. (Day 1) 4 more days to go. I, as a very Severe ME patient, can not do this without your help. Please alert everyone, send this to your friends and share, and if possible, please consider d0nating. gofundme.com/f/save-nevra #SevereME #pwme #pain #food
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Katharina 🦋🍋🍀 @katha1970.bsky.social · 14/11/2025
‼️Germany allocates 500 million Euros to research on #MECFS #LongCovid #PAIS from 2026-2036‼️ “We are opening a new chapter in researching these diseases.” "The National Decade Against Post-Infectious Diseases is coming." - German Federal Research Minister Dorothee Bär @dorobaer.bsky.social
bmftr.bund.de
Nationale Dekade gegen Postinfektiöse Erkrankungen: Insgesamt eine halbe Milliarde Euro für weitergehende Forschung - BMFTR
Nationale Dekade gegen Postinfektiöse Erkrankungen: 500 Millionen Euro für Forschung
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Reposted by Ashley Hultman
Long Covid Advocacy @longcovidadvoc.com · 14/11/2025
🪩 Excellent news from Germany. €50 million a yr available from 2026-36.
Germany has committed to a landmark National Decade for Post-Infectious Disease, investing €500 million over ten years to accelerate ME/CFS and Long Covid research.
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Adam @abrokenbattery.bsky.social · 14/11/2025
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...
zeit.de
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.
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Social Security Works @socialsecurityworks.org · 28/10/2025
Donald Trump and Elon Musk pushed out thousands of experienced, dedicated Social Security staff. Now, the Social Security Administration is in crisis — and Americans can't access their hard earned benefits.
wapo.st
Callers to Social Security wait for hours to get help. Hear their ordeals.
Millions of seniors and disabled people call Social Security’s 1-800 number every month. What they experience is often maddening.
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Reposted by Ashley Hultman
NPR @npr.org · 12/10/2025
A Cornell University researcher has been developing an artificial heart for children for more than 20 years. Now, his research is on hold and his lab is shut down.
n.pr
This 4-year-old's heart is failing. A federal grant that might help him was canceled
A Cornell University researcher has been developing an artificial heart for children for more than 20 years. Now, his research is on hold and his lab is shut down.
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Reposted by Ashley Hultman
Peter Morley ♿️ @petermorley.bsky.social · 02/10/2025
🔥🔥CMS UPDATE ON TELEHEALTH FOR MEDICARE DURING SHUTDOWN🔥🔥 BEGINNING: 10/1/2025, MANY of the statutory limitations that were in place for Medicare TELEHEALTH services prior to the COVID-19 Public Health Emergency will take effect AGAIN for services that are NOT behavioral and mental health services.
Update on Medicare Operations: Telehealth, Claims Processing, and Medicare Administrative Contractors Status During the Shutdown 
When certain legislative payment provisions (“extenders”) are scheduled to expire, CMS directs all Medicare Administrative Contractors (MACs) to implement a temporary claims hold. This standard practice is typically up to 10 business days and ensures that Medicare payments are accurate and consistent with statutory requirements. The hold prevents the need for reprocessing large volumes of claims should Congress act after the statutory expiration date and should have a minimal impact on providers due to the 14-day payment floor. Providers may continue to submit claims during this period, but payment will not be released until the hold is lifted. 
Absent Congressional action, beginning October 1, 2025, many of the statutory limitations that were in place for Medicare telehealth services prior to the COVID-19 Public Health Emergency will take effect again for services that are not behavioral and mental health services. These include prohibition of many services provided to beneficiaries in their homes and outside of rural areas and hospice recertifications that require a face-to-face encounter. In some cases, these restrictions can impact requirements for meeting continued eligibility for other Medicare benefits. In the absence of Congressional action, practitioners who choose to perform telehealth services that are not payable by Medicare on or after October 1, 2025, may want to evaluate providing beneficiaries with an Advance Beneficiary Notice of Noncoverage. Practitioners should monitor Congressional action and may choose to hold claims associated with telehealth services that are not payable by Medicare in the absence of Congressional action. Additionally, Medicare would not be able to pay some kinds of practitioners for telehealth services. 

For further information: https://www.cms.gov/medicare/coverage/telehealth.
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Long Covid Families @longcovidfam.bsky.social · 01/10/2025
New Lancet Study: 2x Risk of Long COVID After Reinfection Risks of other serious outcomes also rise sharply. This is not a “mild” illness when it rewrites a child’s future. We need research, medical care, and school protections that match the scale of the problem. #LongCOVID
thelancet.com
Long COVID associated with SARS-CoV-2 reinfection among children and adolescents in the omicron era (RECOVER-EHR): a retrospective cohort study
Children and adolescents face a significantly higher risk of various PASC outcomes after reinfection with SARS-CoV-2. These findings add to previous evidence linking paediatric long COVID to multisyst...
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 26/09/2025
Ebola has a sixty-something percent mortality rate and costs a great deal to treat just one patient. With vaccination this low and treatment this expensive, this is a human rights disaster in the making. This is a problem only money can solve right now.
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Reposted by Ashley Hultman
It's ME(Jaime) @exceedhergrasp1.bsky.social · 26/09/2025
This is extremely bad. In the past, the Congo would have leaned heavily on USAID. That's no longer possible. "...Just 1,740 people in three health zones of Kasai province have been vaccinated as of Sept. 21. The Bulape zone alone has a population of more than 212,000."
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Haley Norris @hvnorrisphd.bsky.social · 26/09/2025
If you're getting ready for SCOTUS season, you need to add this webinar to your calendar! 9/30 discussion with experts about the Roberts Court www.americanprogress.org/events/twent...
americanprogress.org
20 Years of the Roberts Court: The Chief Justice’s Legacy and the Coming Term
Please join the Center for American Progress for a virtual event that will dive into 20 years of the Roberts court and the upcoming Supreme Court term.
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Reposted by Ashley Hultman
Liz Nevra A. @nlizaki.bsky.social · 24/09/2025
From Nevra's Instagram drafts: Young heart for love Not heartache Dark hair for catching the wind Not to veil the sight of a cold world Please keep sharing! We are looking at VERY Severe #pwME now going back to #DV or homelessness 💙gofundme.com/f/save-nevra #VerySevereME
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Peter Morley ♿️ @petermorley.bsky.social · 20/09/2025
FACT: When the 1st Trump administration cut the budget for ACA Open Enrollment information by 90%, Jimmy Kimmel used his platform to make sure that everyone on the marketplace in America knew that you needed to sign up or change your marketplace plan. That speaks for itself. Miss you, Jimmy Kimmel.🙏
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Sean Mullen, Ph.D. @drseanmullen.bsky.social · 16/09/2025
I’m not an epidemiologist, but a cognitive scientist & biomedical researcher (PhD, Education) with expertise in digital health, health literacy, and behavior change. Not a credential drop—just context to establish perspective & credibility.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 15/09/2025
Try taking the COVID competency exam yourself, and share it around! Great way to bust myths (and the person who wrote it is an epidemiologist, and well-informed, so it really does). seanmullen.com/covidcompete...
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You got 20 out of 20 questions correct (weighted score: 26.6/26.6).

*mask face emoji* EPIDEMIOLOGIST'S NIGHTMARE
Perfect score! You're so well-informed, conspiracy theorists actively avoid you at parties.
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Royal Free 1955 @rfh1955.bsky.social · 12/09/2025
Ayrshire Post and Troon Herald, Scotland, 12th September 1986. Thirty-nine years ago today. "Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis
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valebodi.bsky.social @valebodi.bsky.social · 13/09/2025
Review September 11, 2025 A Perspective on the Role of Metformin in Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID David FinebergAlain MoreauElena K. Schneider-Futschik*Christopher W. Armstrong #ME/CFS #Metformin
pubs.acs.org
A Perspective on the Role of Metformin in Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID (LC) are increasingly recognized as debilitating postinfectious conditions that impact both individuals and society. Recent r...
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Thinking Person's Guide to Autism @thinkingautism.com · 13/09/2025
Turns out that "Ableism is greater in the medical profession than in wider society," as "a lack of disability and neurodiversity awareness, coupled with discrimination & stigma, can significantly impact disabled doctors' lives and careers." New research: www.healthcare-management.uk/medical-prof...
healthcare-management.uk
Medical profession 'more ableist' than wider society
Interim results from a BMA survey, of more than 800 disabled and neurodivergent doctors and medical students, shows that a lack of support has driven 53% of respondents...
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Billy Hanlon @bhanlon15.bsky.social · 08/09/2025
UW Medicine: 'Long COVID has impact on Latino communities' 'Researchers found nearly half of Latino patients surveyed reported chronic symptoms, with women and middle-age people most affected' '“We need more research. Clearly, we need better treatment' newsroom.uw.edu/video-librar...
newsroom.uw.edu
Long COVID has impact on Latino communities - UW Medicine | Newsroom
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Tom Kindlon @tomkindlon.bsky.social · 09/09/2025
From the US: The Role of Neuroinflammation in Post-Exertional Malaise Among Chronic Multisymptom Illness asset.library.wisc.edu/1711.dl/MPB4... Screenshot from latest Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
The Role of Neuroinflammation in Post-Exertional Malaise Among Chronic Multisymptom Illness — Ninneman
"PET imaging consisted of a 70 minute dynamic scan with a third generation translocator protein radiotracer – 11C-ER176." "Neuroinflammation was significantly higher in CMI" "No specific brain regions were differentially impacted by exercise in either CMI nor CON"
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Alex @admiringbog.bsky.social · 07/09/2025
These numbers are horrifying. And this makes me wonder how bad it has to get before we do something about this. “Outside the US, a systematic review of long COVID’s impact on the National Health System out of the UK found that 18% of healthcare workers were out of work due to the condition. “
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 07/09/2025
Like so many of RFK Jr's claims, this is so breathtakingly, provably false that your brain short-circuits trying to counter. Fields with enormous progress in the past 40 years: The Human Genome Project AIDS/HIV treatments mRNA vaccines MRI & other imaging tech Minimally-invasive surgeries
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 07/09/2025
Alt text in comments. #CDC
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valebodi.bsky.social @valebodi.bsky.social · 07/09/2025
WelcoME to my PEMTalk where I try to walk you through the basics of #PEM, first and foremost, that it is not equal to fatigue. #ME/CFS #PEM #pwME #PEM≠fatigue
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/09/2025
LIFT Trial - here's the preprint for the trial www.researchsquare.com/article/rs-5...
Harvard LIFT (OMF Life Improvement Trial) showing pyridostigmine with and without LDN groups, along with placebo
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/09/2025
Systrom is now up: "Everything we have found in ME we have found in Long COVID, so we may slip up and use them interchangeably."
Circulatory Dysfunction in ME/CFS and Long COVID

Invasive CPET
Preload failure
Impaired systemic O2 extraction 
LIFT
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valebodi.bsky.social @valebodi.bsky.social · 05/09/2025
⚠️The authors also used a test for muscle weakness (Besinger score). It turned out that ME/CFS had such poor scores that the test wasn't useful in differentiating ME/CFS from myasthenia gravis. Pyridostigmine improves hand grip strength in patients with #ME/CFS www.frontiersin.org/journals/neu...
frontiersin.org
Frontiers | Pyridostigmine improves hand grip strength in patients with myalgic encephalomyelitis/chronic fatigue syndrome
BackgroundMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystemic disease characterized by exertional intolerance and fatigue which is...
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/09/2025
If a lot of this was unfamiliar, I don't blame you! @erinmarilee.bsky.social and I created an Anki flashcard deck for med students on IACCs that covers a many of these diseases, including ME/CFS, Long COVID, hEDS, MCAS, SFN, POTS/dysautonomia, and so on. Last link here: www.cdc.gov/me-cfs/hcp/t...
cdc.gov
ME/CFS Resources for Medical Students
CDC provides ME/CFS resources for the next generation of healthcare professionals in training.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/09/2025
Braden Yellman from Bateman-Horne is now talking about comorbidities of #MECFS. 🧪 Starting with hEDS (hypermobility, hypermobile Ehlers-Danlos)
hEDS (Q79.62)

Self-reported data in a cross-sectional study of those with ME/CFS suggests that 15.5% of those with ME/CFS have joint hypermobility and 28% of those with ME/CFS + Long COVID report it

In a self-reporting prospective observational study those with generalized hypermobility were ~30% more likely to experience chronic symptoms after recovery from acute infection by SARS-CoV-2 with many meeting ME/CFS criteria
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Chris Geidner @chrisgeidner.bsky.social · 04/09/2025
After RFK Jr. says he doesn’t know how many people died from Covid and doesn’t know how many lives were saved from the Covid vaccine because the CDC data was too bad, Sen. Mark Warner: “How can you be that ignorant?”
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Aaron Rupar @atrupar.com · 04/09/2025
RFK Jr: It's gonna be the biggest infusion of federal dollar into rural healthcare in American history BERNIE SANDERS: Yeah. You know why? Because you're cutting $150b for rural hospitals, you're putting $50b back. That's not an infusion. That's a loss of $100b.
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Billy Hanlon @bhanlon15.bsky.social · 03/09/2025
Persistent Immune Dysregulation during Post-Acute Sequelae of COVID-19 is Manifested in Antibodies Targeting Envelope and Nucleocapsid Proteins ➡️ New preprint via NIH RECOVER, followed 30 after Covid (20 w/LC, 10 recovered) ➡️ In LC, immune system stays dysregulated www.biorxiv.org/content/10.1...
biorxiv.org
Persistent Immune Dysregulation during Post-Acute Sequelae of COVID-19 is Manifested in Antibodies Targeting Envelope and Nucleocapsid Proteins
Post-Acute Sequelae of SARS-CoV-2 infection (PASC) syndrome or “Long COVID” represents a widespread health challenge that necessitates the development of novel diagnostic approaches and targeted thera...
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valebodi.bsky.social @valebodi.bsky.social · 03/09/2025
Neurovascular Dysregulation During Exercise in #ME/CFS & #LongCOVID David M. Systrom, M.D. Pulmonary and Critical Care Medicine Brigham & Women’s Hospital CDC SEC Call Presentation www.cdc.gov/me-cfs/pdfs/...
cdc.gov
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Miriam E. Tucker @miriametucker.bsky.social · 20/08/2025
“What had once felt like a rare or niche diagnosis now seemed to be everywhere, impossible to ignore.” - Brittany Adler, MD, of Johns Hopkins, re post-infectious chronic illness that goes by many names but has no dedicated medical specialty. #POTS #MECFS www.medscape.com/viewarticle/...
medscape.com
Where Is the Medical Home for Postinfectious Illness?
A rheumatologist calls for greater awareness among her colleagues but also emphasizes that these patients require multidisciplinary care.
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Lionhart2x @lionhart2x.bsky.social · 21/08/2025
Brilliant article on these ever expanding and prolific conditions.
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Ashley Hultman @ashleyhultman.bsky.social · 31/08/2025
cnn.com
Common heart attack drug doesn’t work and may raise risk of death for some women, new studies say | CNN
Beta-blockers, the gold standard drug treatment for heart attacks, is ineffective for many and may increase the risk of death and disability in certain women, new studies find.
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