“I would say 5%-7% of the people who are coming into our center right now are healthcare workers,” David Putrino said. His clinic has treated around 3,500 people with long COVID and sees 500-700 new patients per year.
ME/CFS | Long COVID | IACC
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“I would say 5%-7% of the people who are coming into our center right now are healthcare workers,” David Putrino said. His clinic has treated around 3,500 people with long COVID and sees 500-700 new patients per year.
Distinct white matter alteration patterns in post-infectious and gradual onset #ME/CFS revealed by diffusion MRI These findings align with the diverse symptomatology of ME/CFS, including motor disturbances. Several studies have also reported the exclusively increased AD in other neurological
- “I think that there is a stigma associated with healthcare workers admitting that they have an unmanaged chronic condition,” Putrino said.
#CovidGoodNews “He questioned whether it might be easier to wear a mask to prevent Covid infections. “The mask may be more awkward and annoying but might be easier to comply with than remembering a thrice-daily nasal spray day after day…” www.nbcnews.com/news/amp/rcn...
My childhood best friend who is an OBGYN sent me a paper this morning on how fasting helped alleviate long covid symptoms. I sent a long response breaking down the studies faults, emphasizing why studies like this are junk and what my life is actually like with Long Covid/MECFS.
IT IS NOT A MYSTERY, IT HAS NOT BEEN RESEARCHED ENOUGH #pwME
Stop ignoring long COVID!
Also anyone can get long Covid or other long term problems.
I am BEGGING people not to concede that "COVID wasn't bad for kids because they don't die of it." Death isn't the only metric!! 10-20% of kids who get COVID end up with long COVID. More children now have long COVID than have asthma. We have utterly failed our kids. www.newsweek.com/why-are-so-m...
I can’t read minds so I can’t say for absolutely certain, but I don’t think I’ve come across anyone who says “during COVID” who also fully understands & acknowledges that it’s still very much a threat to them & everyone else—because it is. And that’s the problem.
Especially with the lead author and two other authors affiliated with Univ. of Arizona, would be great to see collaboration with this group and the Univ. of Arizona RECOVER team (Janko Ž. Nikolich, Sairam Parthasarathy & Kristen Pogreba-Brown)
Believed to be a common endpoint constellation of symptoms that clinically overlaps with and is believed to share common underlying pathophysiology with other conditions
Grateful to Dr Alexandra Yonts @pidringer.bsky.social from Children’s National and George Washington University for joining us at Uniformed Services University Pediatric Grand Rounds today to speak on the topic of Pediatric Long Covid
Medscape: 'Long COVID Hitting Doctors and Nurses Hard' 'Jeffrey Siegelman, MD, contracted COVID-19 in August 2020 and, 3 months later...he’s still dealing with the symptoms, as one of many healthcare providers who have long COVID.' www.medscape.com/viewarticle/...
9/3, RECOVER: '“A shared mission”: RECOVER researcher committed to sharing knowledge about pediatric Long COVID' 'Dr. Stockwell says she and her fellow RECOVER researchers have a responsibility to share information widely to ensure that doctors understand...'' recovercovid.org/news/shared-...
9/2, RECOVER: 'RECOVER researchers and Representatives discuss impacts of pediatric Long COVID to mark awareness week' 'The information shared during both webinars highlighted that Long COVID has serious impacts—both physically and mentally—on children' recovercovid.org/news/recover...
9/2, RECOVER: 'RECOVER Representatives help inform Long COVID sleep research through empathy, expertise, and engagement' 'Recommendations from Representatives often lead to improvements to study materials' recovercovid.org/news/recover...
9 CDC Directors going back to 1977 speak out. What RFK Jr has done to our nation’s public health system "should alarm every American." It "is unlike anything we have ever seen at the agency, and unlike anything our country has ever experienced." www.nytimes.com/2025/09/01/o...
FDA accepted Shionogi’s application for ensitrelvir the first oral antiviral shown in a Phase 3 trial to prevent COVID-19 after exposure. A decision is expected by June 2026. www.businesswire.com/news/home/20...
Would eat like tic-tacs In the meantime, vax, mask, and ventilate. #LongCovidSucks
1/20/21, Univ. of Arizona: “Solving the COVID-19 Puzzle Energizes Research Team Member” “To unravel the mysteries presented by long COVID, the CoVHORT study is bringing together two types of epidemiologists…” healthsciences.arizona.edu/connect/stor...
6/9/23, Healthcare Drive: “The public health emergency is over. Here’s why government must prioritize funding for long COVID research.” “There is still a tremendous need for investment in long COVID.” www.healthcaredive.com/news/governm...
12/15/21, Arizona Daily Sun: “Northern Arizona University joins Arizona cohort of national long COVID study” “People are suffering, they want to know what’s wrong with them” “We can figure this out..” - Samantha Sabo, Associate Professor, NAU azdailysun.com/news/local/n...
Maybe unpopular take but I think "during COVID" is fine! Death data show a clear acute phase from spring 2020 until spring 2022. Since then deaths have steadily trended downward and this winter fell below flu deaths. You can take COVID seriously and still talk about the worst of it in the past tense
From Spain Pediatric Long COVID Is Characterized by Myeloid CCR6 Suppression and Immune Dysregulation www.biorxiv.org/content/10.1... Screenshot from latest Science for ME weekly update #LongCovid #LongCovidKids #LCKids
Heart Preload Failure in patients w/ #ME/CFS #pwME and some #pwLC Original ongoing research conducted by Dr. D. Systrom @openmedf.bsky.social www.openmedicinefoundation.ngo/heart-preloa...
This honestly should be a lot bigger news as RFK Jr's actions, particularly towards Long COVID, means leaving potentially more than 40 million Americans incl 5.8 million children absolutely adrift & potentially a lot worse. And after every wave of COVID, that number grows larger.
New US study: Characterization of Postural Orthostatic Tachycardia Syndrome in Long COVID: Self-reported Data From the LISTEN Study www.jacc.org/doi/10.1016/... Screenshot from latest Science for ME weekly update #LongCovid #POTS #MEcfs 1/
Would love to see RECOVER-TLC & RECOVER prioritize these findings. ➡️ Oxygen extraction issues ➡️ Preload failure ➡️ Reduced V̇O2peak ➡️ Skeletal muscle O2 diffusion
🧵 I'm honoured to be recognised in this way by the Belvedere Union 😊 Screenshot of their full announcement in the next post. [In recent years, I’ve cut back a bit from a fairly hectic level of activity but still plenty to do, so no plans to retire any time soon] #MEcfs #CFS #PwME 1/
Great to see another research team (this time in Arizona, USA) doing iCPET research: Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation physoc.onlinelibrary.wiley.com/doi/10.14814... #MEcfs #LongCovid #PwME
To simulate targeted interventions, each variable was sequentially normalized to assess its impact on V̇O2peak. V̇O2peak was significantly reduced in both PASC and #ME/CFS compared to controls. ⚠️ Skeletal muscle O2 diffusion (DM ) was the most impaired parameter in both patient groups (p = 0.01). ⚠️
Great article that I think a lot of folks can relate to, or at the very least sympathize with. Long Covid is a beast that can make you desperate enough to consider just about anything to get rid of it or lessen its damage.
‚Shall we begin? For starters: Asking “Are you doing any better?” doesn’t help. One has to think of long COVID as a chronic illness—cause unknown, cure unknown, recovery timetable (assuming there is one) unknown.‘ #LongCovid
This is quotable for our times, “Illness is not a punishment, it is simple cause and effect”
Center for Economic and Policy Research: 'Secretary Kennedy Doesn’t Care About Long COVID Patients' 'Kennedy is clearly not interested in keeping the promise he made to the American people to tackle Long COVID.' By Hayley Brown cepr.net/publications...
CIDRAP: 'Metformin may reduce risk of long COVID by 36% in overweight or obese adults' 'These findings emphasize the role of using metformin in early COVID-19 treatment plans....' www.cidrap.umn.edu/covid-19/met...
The 9th Annual Stanford Working Group Meeting on the Molecular Basis of ME/CFS started today. Today’s agenda is shown in the image. The Community Symposium will take place on Friday, September 5, from 8:00 am to 2:30 pm PST, and requires registration. Register 👉 ow.ly/Upnh50WPPbR.
I AM AT THE END OF MY ROPE. I'M NOW FLAT OUT BEGGING YOU: pls buy something from my art site (DoniaLilly.com) or my eBay / Poshmark (linktree ⬇️) as an early holiday gift / for yourself. I have stuff for Men, Women, Children, Pets & the Home. linktr.ee/EthyricalArt... #pwME #blackcat #disability
Sharing this fundraiser for a member of our community in need. Artwork for sale as well! linktr.ee/EthyricalArt... #pwME #MECFS #MyalgicEncephalomyelitis #SevereME #disability Our fundraising share policy: docs.google.com/document/d/1...
6/5/25, U of Minnesota Med. School: Top story: Long COVID patients urged to enroll in U of M clinical trial Univ. of MN is 1 of 6 nationwide sites participating in the study to see if the FDA-approved drug Baricitinib 'The community deserves multiple treatment options" med.umn.edu/news/top-sto...
Nine former CDC leaders say HHS Secretary Robert F. Kennedy Jr.’s public health views are “dangerous,” citing vaccine rollbacks and policy rejections.
[...] "it all means more doctors. And I am really, really sick of doctors. Most of them know nothing, and if they can’t help you, they have little time for you. Many of them dramatically underestimate quality of life as an issue." ... Amen
Inside Precision Medicine: New Biomarkers in ME/CFS Could Guide Targeted Treatments Researchers found that ME patients had exaggerated immune responses after microbial stimulation, shown by higher production of IL-6 & other pro-inflammatory cytokines www.insideprecisionmedicine.com/topics/trans...
This is a good piece. Both because it details what Long COVID can be like and also because it gets into how when you're miserable due to illness or injury you will try just about anything (and that makes you really vulnerable). (I hate people who prey on people who are hurting.)
The Guardian: 'Long Covid has more than 200 potential symptoms. Selective gullibility is one of mine' 'But what else can I do? There is no treatment protocol, no known cure for long Covid. Experts disagree on what it even is...Mitochondrial dysfunction?..' www.theguardian.com/lifeandstyle...
"A few months ago, I told a higher-up at The New York Times—we’re talking very high altitude—that I’d been struggling with long COVID. His reply: “Is that the excuse everyone at The Atlantic uses when they’re unproductive?” It was a staggeringly insensitive thing to say." 1/2
H/T @jennifersenior.bsky.social
Free link: archive.ph/SGIem
2/15/23, The Atlantic: 'What Not to Ask Me About My Long COVID' 'The fact is, no one—including doctors (especially doctors, dear God, these doctors)—knows the right things to say to those of us who have long COVID..' A brief guide By Jennifer Senior www.theatlantic.com/ideas/archiv...
'Research reveals molecular details of ME/CFS and long COVID' 'Patients with myalgic encephalomyelitis have heightened innate immune responses..' "...may inform clinical research and lead to targeted interventions," stated senior author W. Ian Lipkin, MD www.news-medical.net/news/2025090...
INIM: 'What Spike Proteins Reveal About Long COVID and ME/CFS' 'Dr. Nancy Klimas, immunologist and Director of the Institute for Neuro-Immune Medicine, joins Haylie Pomroy to explain how persistent spike protein may be the missing link behind long COVID' www.youtube.com/watch?v=Gifd...
🧪 And House appropriators say: no cuts to NIH budget! House subcommittee version just came out (link below). Holds NIH flat at $48 billion. To be clear: this is far from over. But a good sign that science still matters across both sides of aisle. YOUR VOICE MATTERS!!
Good news. The House of Representatives stands behind the NIH budget with no cuts.
Well, well, well…this bodes well for Whackadoodle limiting access to the Covid vaccine now doesn’t it? www.kctv5.com/2025/08/28/k...
I want to highlight one of my favorite accessibility tools. It’s the simple non-glorious phone strap. (aka a silicone band with 2 sticky ends) How does it help? 🧵
Canada needs this as well. Just like what RFK is doing in the US, "gaps in public messaging" are a deliberate choice - they don't just happen. So...who benefits from misleading the public? Pretending away the massive toll of letting COVID rip are all about protecting a few negligent insiders.
9/2/21, 'How journalists report through the fog of long COVID' '‘While the worst of the brain fog has passed, I am slowly accepting the idea that my brain is simply different now. I know I’m not alone in this.’ By: Molly McCluskey www.poynter.org/reporting-ed...
Free link: archive.ph/Edi8A#select...
9/19/22, LA Times: "The mental health effects of living with long COVID" 'Sandhya Kambhampati, a data reporter on the Los Angeles Times Data Desk, holds a painting she did while coping with long COVID.' www.latimes.com/california/s...
H/T @sandhyak.bsky.social
Free link: archive.ph/XOval#select...
7/8/21, LA Times: 'Being a COVID long hauler has taught me to be fearless, push back and take lots of notes' 'I am a COVID-19 long hauler, and the experience has taught me much about myself, the medical system, the value of friends and family' www.latimes.com/california/s...
Jarred Younger - New study: placebo reduces fibromyalgia pain more than cannabidiol (CBD)?
"We have a message for the rest of the nation as well: This is a time to rally to protect the health of every American."
2/11/22, "Kansas City Doctor Leads Nationwide Study on Long COVID" "'Now, we have to deal with the aftermath" "We need to figure this out" "Everybody out there has something to contribute" flatlandkc.org/people-place...
Being too sick to sleep is one of the saddest things. Me/cfs
Totally stuck - from my ME/CFS photo project glass.photo/andrewgiffor... ALT: colour photo of a beautiful black and silver butterfly, trapped inside a class paperweight, on a drab blue background #MECFS #pwME #LongCovid #Photography
Post-COVID? This article must be from the future. www.cbc.ca/news/politic...
"PEM warrants recognition as a neurological pathology resulting from metabolic and immune dysregulation (3). Approximately 48 hr after a triggering event—physical, cognitive, or emotional—patients experience what is colloquially termed a “crash.”" www.bmj.com/content/390/...
I’d add that if masking is tough on your mental health, you do not want ANY part of the restrictions on your life and coping mechanisms that a new chronic physical illness might impose. I used to rely heavily on exercise for mood. Now I can’t even go for a walk. And that’s the tip of the iceberg.
To this day, many articles assert that we didn’t have the technology to research ME/CFS in the past. It’s just not true.
Free link: archive.ph/MJQbl#select...
Bloomberg: 'Hot Weather Can Make Long Covid Symptoms Worse' “For some of the most commonly underlying drivers of long Covid such as mitochondrial dysfunction and autonomic dysfunction, heat is a real trigger" www.bloomberg.com/news/newslet...
Ian Lipkin, MD: - “While what gives rise to ME/CFS remains obscure, understanding the ways it disrupts the body’s various biological processes on the molecular level is revealing biomarkers for specific ME/CFS subtypes that may inform clinical research and lead to targeted interventions,”
La Trobe University: 'Long COVID could hold key to cause of Chronic Fatigue, MS' 'Professor Gras said researchers hoped to use Long COVID as a starting point to understand the mechanism of post-viral illnesses.' newshub.medianet.com.au/2025/09/long...
Columbia University: 'Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS)' “These results suggest that specific intracellular pathways correlate with symptoms,” adds Amit Ranjan, PhD, co-first author www.eurekalert.org/news-release...
SciTech Daily: 'Covid Could Be Quietly Aging Your Arteries by Five Years' 'A major international study found that even mild Covid infections can stiffen blood vessels as if they had aged five extra years, raising long-term risks of heart attacks and strokes' scitechdaily.com/covid-could-...
A BBC podcast titled "Access All: Disability News & Mental Health" asks if the DNA of people with ME is different. They interview Prof Chris Ponting @cgatist.bsky.social & participant Laura Boyles about the DecodeME study. Starts at 22.12 minutes www.bbc.com/audio/play/p... #MEcfs #PwME #CFS
Trial by Error by David Tuller @davetuller1.bsky.social : "Keystone Gathering Update; Anil's Severe ME Day Video; Fractured Care for Post-Infectious Illness" virology.ws/2025/08/21/t... Screenshot from Science for ME weekly update #LongCovid #MEcfs
1/ "#LongCOVID is associated with significantly reduced function and quality of life, which are distinct outcomes requiring targeted assessment and intervention": Via @rchusid.bsky.social www.publish.csiro.au/PY/PY25033
If you think you might have Long Covid, you're probably right. It's under-diagnosed in New Zealand. Estimates are upwards of 250k people with Long Covid.
Can confirm. I’m 3 years and 4 months in and I’m here to tell you long covid is not for the faint of heart.
People with long Covid reported worse disability than 98% of the general Australian population. A total of 86% of those with long Covid met the threshold for serious disability compared with 9% of Australians overall. www.1news.co.nz/2025/08/26/l...
Fewer people getting Covid-19 boosters in Aotearoa. Long Covid was barely mentioned and the impact of Covid on children and Young People downplayed :( #CovidIsNotOver
Be sure to check out today's Threat Model: #Covid newsletter from @violetblue.bsky.social, full of info on the latest rising wave, vital news on vaccines, drama at the CDC, and much more. Read/share/support: www.patreon.com/posts/137520... #LongCovid #MedSky #PublicHealth
Living with severe #MECFS often means being bedbound. One community member shares practical tips, like bedside setups & sensory relief, to make daily life more manageable. 💙 Read more: buff.ly/nkcCa5r
Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Myalgic encephalomyelitis/chronic fatigue syndrome ( #ME/CFS) is a debilitating multisystem disorder of unclear etiology that affects many individuals world- wide. One of its hallmark symptoms is prolonged
1/ Every time I see this 2022 headline, I smile crookedly at the irony. This is ONE amazing doctor. But in 2025, the headline should now read "What patients wish doctors knew about #LongCOVID" - www.ama-assn.org/delivering-c...
You don’t have to spend every second of your waking hours as a sick person trying to find a cure. Sure, prioritize your health, try new treatments, strive for better function & QOL. But it’s also okay to try to enjoy your life too, in any way you can. In fact, it’s radical & necessary. #LongCovid
3/20/23, CBS News: "'Advocate for yourself': Long haul COVID sufferer Alex Singer still dealing with serious side-effects" "Everyday, I'm still trying to figure out my body and what is happening to me" 'Singer had..extreme fatigue, abnormal heart rate..' www.cbsnews.com/chicago/news...
Unfortunately in this political climate I can’t really predict anything I feel…hopefully someone else may have a better pulse. I personally don’t really know the likelihood
#RESIGNRFK #LongCovid #mecfs #NEISVoid these are the people I want on our team, not rfk. there’s no better time than right now to stand up for federal workers, science and public health, each other as disabled people, and everyone across the globe ⬇️
Can anyone recommend an #MECFS & #POTS knowledgeable doctor in the DC area?
One more point—if like me, you had pre-Covid ME and got Long Covid, you should fill this out too! The NASEM definition for LC is any new or worsened symptoms from Covid, and I know a LOT of people with pre-Covid ME got worse from Covid infection!
I'm in this category as well, and it's a big part of the reason I literally didn't understand I had Long Covid until almost two years in. I didn't think it "counted." And I also had spent so many years numbing myself to my own symptoms that it was very difficult to recognize when things escalated.
Just a reminder that our Unraveled episode discussing Rapamycin, Long Covid, ME/CFS is now online: www.youtube.com/watch?v=W_aw...
As a disabled person who’ll have to be unmasked for a procedure in 2 weeks, I’d be so grateful if folks who don’t usually mask considered pitching in to help curb this surge. N95s work best but if what you’ve got is cloth, popping it on to go into the grocery store is way better than nothing! Ty<3
''The Committee made it clear to the NIH that when it comes to long COVID, the NIH should not forget the other post-infection syndromes''
Health Rising: 'Senate Bill Includes Some of the Strongest Support for ME/CFS in Years' 'Could it be that in this year of billions of NIH cuts, ME/CFS (and long COVID) are getting stronger? It’s possible.' www.healthrising.org/blog/2025/08...