LongCovidMN @LongCovid_MN
Sharing long covid science and support for survivors in Minnesota and beyond Minnesota Joined December 2020-
Tweets438
-
Followers516
-
Following31
-
Likes530
This is an interesting paper looking at COVID patients who don’t seroconvert (make antibodies), but I can’t understand it. Anyone have a summary for me? nature.com/articles/s4158… It doesn’t seem to be #LongCovid specific though it’s presumably relevant.
@Daltmann10 The same was noticed in #Wuhan🇨🇳 2020, where ~30% of the patients with #SARSCoV2 did not have symptoms _AND_ did not develop enough of Ab to prevent future infection🦠. Many in that group did not develop any Ab, despite having the 🦠. The majority in that group were <38 year old.
Super interesting
A reminder that between 97%-99% of people who got COVID in March 2020 did not get a test! Yes, that means only 1-3% did. The collective amnesia around the lack of testing accessibility early in the pandemic is causing bad research.
A reminder that between 97%-99% of people who got COVID in March 2020 did not get a test! Yes, that means only 1-3% did. The collective amnesia around the lack of testing accessibility early in the pandemic is causing bad research.
Before CDC changed mask guidance in May - 95% of epidemiologists thought we needed masks for 6 months or longer, even before Delta - 50% thought >1 year - But many op-eds about removing masks asap When you see op-eds about off-ramps now, that does not reflect expert consensus
#LongCovid How and why patients made Long Covid sciencedirect.com/science/articl…
Same! 😂❤️😂
This clot was pulled out of @doctorasadkhan arms. Yet all his coagulation tests were normal? Clotting is a very real phenomenon in #longcovid and none of our normal tests are picking it up. We need new tests and we need anticoagulants.
This clot was pulled out of @doctorasadkhan arms. Yet all his coagulation tests were normal? Clotting is a very real phenomenon in #longcovid and none of our normal tests are picking it up. We need new tests and we need anticoagulants.
The home schooling community is strong everywhere. …it’s a change for many of your kids but it will give them the support they need and keep them on track while recovering from long covid. You get to pick…faith based or hippie crowd 😆😂😜 Leave systems that aren’t helping.
The US disability laws allow you to identify your disability and to request reasonable accommodation. If you need it, ask for it. If you believe you contracted covid at work, file for work comp. Asap. If approved, it will help. If not approved it still sends a message.
New study: Virus damages vascular braincells, small capillaries die. @LongCOVIDEurope @LongCovidPapers @LongCovidNL @LongCovidKids @LongCovidOrg @LongCovid_MN @longcovacademia @Long_COVID_All @apresj20 @longcovidbr @LongCovidRo @SwissScience_TF @postCOVIDbe @CorneliusRoemer @DLF
A guy on the tram platform asked why I was wearing a mask 😳 "Dude. I have one kidney, I don't fancy kidney failure. And the reason I have one kidney is cos I did something selfless for someone else, an alien concept to you." Well, he asked 😏
I did an interview with @CnnEspaol (in Spanish of course) about being a Long Hauler. Hoping more folks in our community can hear more people talk about #LongCovid and understand what it is. cnnespanol.cnn.com/video/vivir-si…
"This case highlights the importance of holistic assessment of patients presenting with chest pain with the background of #LongCovid" Long COVID Syndrome and Takotsubo Cardiomyopathy: An Unwelcome Combination pubmed.ncbi.nlm.nih.gov/34646643/
I've started to hear cases of people who got COVID twice - who recovered the 1st time, but got #LongCovid the 2nd. This is in line with everything we know about infectious-onset conditions. The body cannot sustain hit after hit to the immune system without consequences. 1/
I've started to hear cases of people who got COVID twice - who recovered the 1st time, but got #LongCovid the 2nd. This is in line with everything we know about infectious-onset conditions. The body cannot sustain hit after hit to the immune system without consequences. 1/
This is how #LongCovid has changed the life of two women Constant headache, incapacitating fatigue, memory loss, difficulties walking. "I was unable to do the simplest of tasks...my identity was taken away" bbc.co.uk/news/av/world-…
Hannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checkedLong Covid Kids - #Lo.. @LongCovidKids
30K Followers 4K Following UK-based, international charity supporting and advocating for families and children living with Long Covid & related illnesses. https://t.co/QjkCJVG3tIBilly Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID AllyLong COVID Physio @LongCOVIDPhysio
27K Followers 1K Following #LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & alliesCovid Persistente Mé.. @CovidComunidad
5K Followers 1K Following Colectivo de pacientes con #LongCovid en lucha por el reconocimiento, protocolos de atención e investigación. Somos un grupo de acompañamiento y solidaridad.Long Covid Advocacy �.. @LongCovidAdvoc
14K Followers 13K Following 📘Legislate ⚕️Investigate 🌬️Ventilate 👥Educate Advocacy4 #LongCovid #MECFS #COVIDisAirborneLangzeitCOVID @Langze.. @LangzeitC
10K Followers 927 Following Long COVID Germany @langzeitc.bsky.social [email protected]LongCovidPodcast @longcovidpod
5K Followers 4K Following Podcast hosted by Jackie Baxter, bringing together lived experience, medical experts, researchers & solidarity on this lonely #LongCovid journey #FBLCCherffor @CherfforePC0cT
1 Followers 241 FollowingAMACOP 🇬🇧🇺�.. @covid_madrid_e
143 Followers 246 Following Madrid Long Covid Association AMACOP Advocacy, Research, Treatment and Rights for #pwLC ✉️ [email protected] En español @covid_madridיוסי פרס @Yosiperes
184 Followers 2K FollowingIdoia Mujika Altuna @MujikaAltuna
218 Followers 3K FollowingBeNourishedUK @BeNourisheduk
310 Followers 947 Following MSc | Researcher | Natural Health Practitioner | Complex Chronic Health Conditions | Long Covid Specialist |CleanTheAir @CleanTheAir2024
310 Followers 5K Followingcarlos perez @Carlosfreedom10
67 Followers 2K FollowingFish Out Of Water | L.. @fowusorg
23 Followers 115 Following Non-Profit 501c3 supporting effective treatment for C-Injured & LongHaulers | Bringing hope and healing to those with Long COVID. Msg @ Telegram @fowus_orgMercyIsToday @ZhengPeace
44 Followers 504 Following Romans 6:18 says “You have been set free from sin and have become slaves to righteousness.” Don't be a slave to sin, be free and sinless.Josh Fox ✡️ 🤌�.. @joshfoxfilm
56K Followers 4K Following Oscar-nominee. Emmy winner. director of GASLAND, THE TRUTH HAS CHANGED, HOW TO LET GO OF THE WORLD,AWAKE. also @joshfoxfilm on Instagram . #banfracking!Long Covid Breathing @LCBreathing
61 Followers 221 Following Breathing coaches with lived experience of #LongCovid. Join our courses to learn the best breathing exercises & how to do them.The Sick Times @thesicktimes
3K Followers 282 Following Non-profit news site chronicling the #LongCovid crisis. Founded by @betsyladyzhets and @mileswgriffis. Donate: https://t.co/YBFRSWzcJxMy Long Covid Advocac.. @myLCadvocacy
2K Followers 5K Following MLCA is your trusted source for Covid | Long Covid - Science, Stories & News. #covid #longcovid #pasc #longhauler #postcovid #MyLongCovidAdvocacyJJ @M02181653M
2K Followers 5K Following #TreatLongCovid #LongCovid #Notrecovered #MECFS #MillionsMissing #PwME #BC007Jan @Jan88090069
0 Followers 3K FollowingBreizhPowerGirl @BreizhPowerGirl
791 Followers 3K Following Bretonne #CovidLong depuis le 13/03/2020… Une vie suspendue… Omicron 29/01/2022 et 07/12/2022 #Covid19 #covidlong #longcovid #ApresJ20 #EM #SFC #pwME #MPENutrients MDPI @Nutrients_MDPI
10K Followers 4K Following Nutrients (ISSN 2072-6643, IF 5.9), is an international peer-reviewed open access journal advancing knowledge in the field of #Human/#ClinicalNutrition.Healthmetryx, Inc. @Healthmetryx
721 Followers 3K Following Health data analytics & AI startup harnessing the power of exhaled-breath data, AI, wearables, & real-world data to change the world!Japan Long-COVID Rese.. @Japan_LongCovid
529 Followers 934 Following SHARE medicine, supplement, and the voices of patients of Long-Covid in Japan. and LOCOPEDIA. Japan account→@tako_wata. contact→[email protected]Global Long COVID Pat.. @pwLCResources
377 Followers 2K Following Resources & help for #longcovid patients globally. Let's fight #covid #longcovid related #misinformation & #disinformation together. Part of @PuchoDigiHealthLongCOVID Patients Ne.. @pwlcNewJersey
204 Followers 790 Following Patient-Centric community platform for Long Covid patients in New Jersey #longcovid #healthequity #healthjustice #dataprivacy. Part of @CareConnectlcProject Healing Touch.. @HealingTouchLC
458 Followers 3K Following For patients suffering from #longcovid #vaxinjuries #mecfs #pots #dysautonomia, We want to hear from you. #StrongerTogether. Part of @PuchoDigiHealthGlobal Patient Center.. @pwlcconference
396 Followers 2K Following We are initiating global #longcovid conference in next few days. Mission is to coordinate with stakeholders globally. Initiative of @PuchoDigiHealthCOVID Advocacy Initia.. @COVID_Advocacy
7K Followers 3K Following Advocacy group working to connect COVID advocates at the local, state, and national level and taking action to prevent COVID spread & save lives.LC Patients South Car.. @pwLcSCarolina
98 Followers 197 Following Patient-Centric community platform for Long Covid patients in South Carolina. Part of @CareConnectlc #longcovid #healthequity #healthjustice #dataprivacyElizabeth Smith #FBLC.. @IssyDublinNewAC
202 Followers 1K Following Long Covid long-hauler since January 2021 ❤️ #POTS. Advocate for Long Covid. Management Consultant @EY Animal Welfare Volunteer @Assisi Animal Sanctuary🐈Suzan Jackson @livewithmecfs
4K Followers 4K Following Writer with ME/CFS & Lyme & son w/#MECFS & #Lyme; love to travel, read & spend time outdoors w/family & friends; write 2 blogs & author of chronic illness book.Melina @melinalinalina
326 Followers 509 Following Just a sick girl | this is an alt acct for low spoon vents #LongCovid #MECFS #FBLCLongCOVID Patients Mi.. @pwlcMissouri
203 Followers 787 Following Patient-Centric community platform for Long Covid patients in Missouri #longcovid #healthequity #healthjustice #dataprivacy. Part of @CareConnectlcpwLC Centered Global .. @pwLCResearch
488 Followers 4K Following Global #pwLC Centered LC Collaborative Research efforts researchers towards mission to bring treatments and diagnostic at warp speed. Part of @PuchoDigiHealthLong Covid Kids Rep.o.. @LCKIreland
2K Followers 2K Following LCK & Friends Ireland, Associate Acc @longcovidkids. Advocacy & support for kids with #PostViralKids #LongCovidKids #LCKfriends 🧡🧡Pucho Digital Health .. @PuchoDigiHealth
562 Followers 4K Following AI assisted digital health platform for #LongCovid Patients. #Healthequity #healthtech #healthjustice #potsvaccineinjuries #mecfs Founder & CEO :@invinciblejhaDIVI @DIVIHealthLC
393 Followers 2K Following Virtual post covid multi disciplinary clinic for everyone #LongCovid #LongCovidAwareness #healthjustice #dataprivacy #Healthequity. Part of @PuchoDigiHealthProject DIYA @ProjectDIYAapp
300 Followers 3K Following Vocal biomarkers for rapid screening of covid-19 and other diseases using AI #LongCovid #healthjustice #dataprivacy #Healthequity. Part of @PuchoDigiHealth.Decentralised Patient.. @pwLCCareconnect
469 Followers 2K Following Global community to join forces with #pwlc, patient advocates & #longcovid advocacy organizations for care & treatment at warp speed. Part of @PuchoDigiHealthJuhi Srivastava @JuhiSri11
334 Followers 1K Following BD & Strategic Partnerships Manager @puchodigihealth. Working towards patient Centered #longcovid Care & Research management . #pwLC #pwME #HealthequityCovid Castaways @CovidCastaways
5K Followers 4K Following Covid Castaways focuses on helping those w/ #LongCOVID & COVID #VaccineInjury. LC - 3/2020. 💚💜Chronic disease & chronic-viral advocate.Long Covid Kids Choir @LCKChoir2022
467 Followers 3K Following 🎶We are the Long Covid Kids Choir 🎶 We explore sound, learn songs, practise breathing exercises, have fun&make choir friends from all over the world!Long Covid Choir @LongCovidChoir
880 Followers 2K Following Singing has brought joy and friendship as we navigate the life-changing experience of Long Covid. Time to find our voice again. Join us via https://t.co/hwyYtuLHZELong Covid Resource @LCResourceORG
897 Followers 2K Following The Long COVID Resource is dedicated to providing information and resources for Long COVID. Visit our website for more info. Experiencing LC since early 2020.Massimiliano @Snipperspace
751 Followers 3K Following 52y/man/Nurse and Osteopath/#MECFS (Long Mumps, The only one in the world) from 13/08/2021.🇮🇹 ItalyVikram Jha @invinciblejha
3K Followers 5K Following Founder & CEO @puchodigihealth. Working towards patient Centered #longcovid research for diagnostic,care & treatment. #HealthequityCooper @Cooper87516148
1K Followers 4K Following la unión de mis pensamiento, creencias y valores fundamentan mi persona.Sarita Kundrod @SaritaKundrod
207 Followers 1K Following chaotic Philly sports obsessive, leftist, and occasional book nerdLong Covid Advocacy I.. @LCAIreland
2K Followers 3K Following The voice for Long Covid in Ireland. An advocacy group comprised of Long Covid patients fighting for awareness of LC & adequate services in Ire for all patientsLongCovidAidBot @LongCovidAidBot
2K Followers 2K Following Here to support disabled #pwLC who must rely on #MutualAid to survive #COVID & #LongCovid #FBLC. #LongCovidAid #CovAidReqRéka Garai @garai_reka
25 Followers 196 Following Pediatric resident, PhD student - creating child-friendly healthcare solutions - long COVID - emergency CREATIVITY, TEAMWORK, EVIDENCE-BASED MEDICINEHannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checkedLong Covid SOS @LongCovidSOS
27K Followers 942 Following UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rehabilitation Email [email protected]Long Covid Kids - #Lo.. @LongCovidKids
30K Followers 4K Following UK-based, international charity supporting and advocating for families and children living with Long Covid & related illnesses. https://t.co/QjkCJVG3tILong Covid Support �.. @long_covid
32K Followers 2K Following UK Charity • Support • Advocacy • Research Involvement • Awareness • Education • Keeping people with #LongCovid at the centre. #CureLongCovidPatient-Led Research .. @patientled
27K Followers 616 Following Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!Long COVID Physio @LongCOVIDPhysio
27K Followers 1K Following #LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & alliesBhupesh K Prusty @BhupeshPrusty
15K Followers 68 Following A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.Bruce K. Patterson MD @brucep13
21K Followers 94 Following Bruce K. Patterson MD, CEO IncellDx, Previously Assoc Prof Stanford School of MedicineMinnesota United FC @MNUFC
175K Followers 298 Following official @mls team. unofficial @oasis fan pageAndrew Yang🧢⬆️.. @AndrewYang
1.6M Followers 9K Following Entrepreneur, Anti-Poverty, Human-Centered Economy, #YangGang, UBI, RCV, Co-chair @fwd_party founder @humanityforward @venture4america views expressed are mineLex Fridman @lexfridman
3.5M Followers 126 Following Host of Lex Fridman Podcast. Interested in robots and humans.Andy Slavitt 🇺🇦 @ASlavitt
630K Followers 1K Following Fr Biden/Obama Admins. Host of @inthebubblepod & author best-selling book “Preventable”. Find me on Postnews aslavitt.Elon Musk @elonmusk
182.4M Followers 592 Following@DrBryanLeyva @DrBryanLeyva
30K Followers 8K Following AfroLatino Activist Artist Antiracist l Diversifying, Decolonizing, Disrupting | Centering Justice & Joy l 👨🏾⚕️Medicine+Peds l Views mine 🇺🇸🇨🇴🌍🏳️🌈✊🏾Long Covid Italia @LongCovidItalia
4K Followers 2K Following Patient-led support group & association for research + care of #LongCovid in Italy - [email protected]BODY POLITIC @itsbodypolitic
24K Followers 393 Following Grassroots health justice org at the forefront of the patient-led #LongCovid movement. Home of Body Politic COVID-19 Support Group. [email protected]Long Covid OT @LongCovidOT
2K Followers 90 Following Occupational Therapists, Assistants, Support Staff, Students and Educators with Long Covid. Peer support, advocacy and highlighting the OT role for Long Covid.UMN Office of Academi.. @UMNclinaffairs
3K Followers 1K Following The official Twitter account for the University of Minnesota Office of Academic Clinical Affairs. Advancing interprofessional education and clinical care.Matt Reynolds @mattsreynolds1
7K Followers 2K Following Senior science writer @WIRED. Climate change, food, biodiversity. Send me story tips: [email protected] Mastodon: @[email protected]COVID-19 Actuaries Re.. @COVID19actuary
31K Followers 145 Following Continuing to share regular data and analysis on excess mortality and hospital admissions with Covid-19. Run by volunteers.Utah COVID-19 Long Ha.. @UTc19LongHaul
1K Followers 2K Following Raising awareness for #longcovid #longhaulers. Advocating for Utah COVID Long-Haulers, those left with post viral symptoms following COVID-19. #FBLCDr Jenny Ceolta-Smith.. @JCeoltaSmith
3K Followers 3K Following Not always X active & #NotWorkingWithLongCovid #OT PhD activist & advocate on health, well-being, welfare and work #LongCovid #FBLC #DWP +at:@WorkingWithLCIgor Koralnik, MD @IgorKoralnik
1K Followers 27 Following Professor of Neurology and Chief of Neuro-infectious Diseases and Global Neurology at Northwestern Medicine @NorthwesternMed @NUFeinbergMedLaura Long @Ellemarie_318
2K Followers 3K Following Dreamer . Earth warrior☮️❤️🧡💛💚💙💜Being kind is my superpower💥 #vegasstrong #vote #longcovid #FBLC #POTS #MCAS @servingourkidsLong Covid Wales 🏴.. @LongCovidWales
3K Followers 872 Following Devolved Welsh Campaigning Offshoot of 60k strong patient-led UK Support Group @long_covid #LongCovid #Wales #TreatLongCovidjburcum @jburcum
10K Followers 10K Following Star Tribune opinion writer on health care. Applying Minnesota mom sensibilities to coverage: don't fib, don't be mean & you better have done your homework.Long Covid Scotland �.. @LongCovidScot
5K Followers 1K Following Long Covid Scotland is a charity & action group led by & advocating for people living with Long Covid.CovidlongtermerUK @covidlongtermer
1K Followers 238 Following Covid-19 long-termer campaigner for UK data collection and support for those with the long tail of Covid-19.Covid-19 Patient Stor.. @RecoveryCovid19
3K Followers 814 Following A resource for those recovering from Covid-19. Find out more about what a recovery journey can look like and share your own recovery story to help others.LongCovidUS @LongCovidUS
412 Followers 13 FollowingCarolyn Porta @CarolynPorta
319 Followers 1K Following UMN AVP for Clinical Affairs. Nurse. Researcher. Mentor. Accomplice.This is an interesting paper looking at COVID patients who don’t seroconvert (make antibodies), but I can’t understand it. Anyone have a summary for me? nature.com/articles/s4158… It doesn’t seem to be #LongCovid specific though it’s presumably relevant.
We stand with our fellow advocates in France. Conclusions drawn in the recently published research in JAMA are based on a false premise: that those who do not have antibodies never had #COVID19. This bad science is now being used to dismiss the suffering of people with #LongCovid
🔴We denounce today's article in @lemondefr. The interpretations are stigmatising, dangerous and harmful for #LongCovid, especially as they are contested and not recognised by the whole scientific community and international associations. #afterJ20 🧵⏬
@Daltmann10 The same was noticed in #Wuhan🇨🇳 2020, where ~30% of the patients with #SARSCoV2 did not have symptoms _AND_ did not develop enough of Ab to prevent future infection🦠. Many in that group did not develop any Ab, despite having the 🦠. The majority in that group were <38 year old.
Couldn’t agree more. Our studies are awash with people with #COVID19 symptoms +/- PCR confirmation but no Ab
Serology is not a sensitive way to assess the presence or absence of past infection. There's plenty of evidence that antibodies wane & may be undetectable in those infected. Also-wait for it- having Long Covid is in itself associated with weaker antibody response to infection.2/5
@ahandvanish @LongCovid_MN Yes. March 20. Still struggling, still getting dismissed. Dyspnea is not improving. Respirologist: sorry there is nothing I can do for you.
Corticosteroid treatment (prednisone, 30 mg/day for 4 days) resolved abnormal immune markers in people with #LongCovid, maintained for 4 months "After completion of the treatment, all patients described complete or partial recovery of their symptoms" mdpi.com/2227-9059/9/11…
A reminder that between 97%-99% of people who got COVID in March 2020 did not get a test! Yes, that means only 1-3% did. The collective amnesia around the lack of testing accessibility early in the pandemic is causing bad research.
Third, early testing was inaccessible. Many who caught COVID-19 in March/April 2020 did not receive a test. "In CA... 1138 people had been tested for the virus... despite several thousand who have likely been exposed" said The LA Times in March 2020. (4/9) latimes.com/california/sto…
I’m not going to share *that* recent French @JAMA_current #LongCovid paper because it is trash, it will do harm and doesn’t deserve clicks. However in their model, the authors failed to control for the ~40% of patients who don’t seroconvert, invalidating the findings. Do better.
Before CDC changed mask guidance in May - 95% of epidemiologists thought we needed masks for 6 months or longer, even before Delta - 50% thought >1 year - But many op-eds about removing masks asap When you see op-eds about off-ramps now, that does not reflect expert consensus
@LongCovidSOS @ONS I lost my childhood to post-viral illness. Unforgivable decision making from this government to not protect children from Long Covid.
It's been a rough week of learning that the Covid info in the general public is way worse than I understood. I didn't understand that doctors are *still* telling people they're 100% safe from transmission/transmitting if they're vaccinated, even if they're 8 months out from vax.
@maxwele2 @long_covid Yes that is what I have been told by my pharmacist but not all types just ketotifen. #LongCovid
The amount to which medical professionals don't understand the harm going on in their own field is always surprising. Many see gaslighting & dismissal as rare - not understanding that for many people (women, BIPOC, trans people, the chronically ill), it's the default experience.
One advantage of my deep experience in being socially awkward is that it is no problem for me at all to be the only one in the room wearing a mask
This clot was pulled out of @doctorasadkhan arms. Yet all his coagulation tests were normal? Clotting is a very real phenomenon in #longcovid and none of our normal tests are picking it up. We need new tests and we need anticoagulants.
It may interest you to see pictures of my clots & fibrin. Usual clotting tests were normal #MedTwitter #MedEd.
New study: Virus damages vascular braincells, small capillaries die. @LongCOVIDEurope @LongCovidPapers @LongCovidNL @LongCovidKids @LongCovidOrg @LongCovid_MN @longcovacademia @Long_COVID_All @apresj20 @longcovidbr @LongCovidRo @SwissScience_TF @postCOVIDbe @CorneliusRoemer @DLF
I just want the whole world to know that exercise intolerance and deconditioning are not the same thing. (although ofc one can cause the other, but not vice versa.)
There are no “both sides” to the Holocaust. There are also no “both sides” to American chattel slavery, to systemic racism, to lynchings and land theft and Indigenous genocide. Despite what power has claimed for months, decades, centuries.
Doctors were literally using trash bags as PPE because stores were empty.
Christmas presents were never late when President Trump was in charge.