Iβm a subject in the Recover Autonomic IVIG trial and was told months ago that funding cuts wonβt impact this study. Today my nurse is no longer monitoring vital signs during my 6 hour infusion because of budget cuts. π #LongCOVID
25.03.2025 21:26 β π 7 π 0 π¬ 0 π 0
Rolling stone front page - caption: five years of pain, fatigue, and gaslighting: life with long covid
Pictured: activists in respirators protesting with signs in front of White House
Thank you @rollingstone.com for the front page coverage
Make the invisible visible. Long Covid is REAL and a growing crisis
15.03.2025 22:09 β π 1065 π 358 π¬ 12 π 14
Itβs been 1,233 days for me suffering from a bedridden to homebound existence. For many others itβs been 5 years. We need help. #LongCOVIDAwarenessDay
#LongCOVIDAwarenessDay2025
15.03.2025 16:22 β π 7 π 6 π¬ 0 π 0
As a PT Iβve tried and failed over a 100 times to gently return to exercise from a severe state. If it was possible Iβd be cured by now. I decline every single time I attempt to push myself. Itβs not mindset or a βpreferenceβ issue but completely physiological.
12.02.2025 14:59 β π 29 π 3 π¬ 0 π 0
Unfortunately they didnβt give me much information besides that I have anteroseptal cardiac damage from a past MI. Based on previous tests they are guessing it happened 2023. Iβve been severe and disabled by LC since 10/21 and have daily chest pain.
12.02.2025 14:54 β π 1 π 0 π¬ 1 π 0
Not a bad idea. I believed mine was non cardiac as well, and assumed the shortness of breath etc, was all from POTS
12.02.2025 14:43 β π 1 π 0 π¬ 0 π 0
#LongCOVID #POTS #ME patients, please donβt ignore important symptoms. Iβve done a solid job of ignoring chest pain and recently found out Iβve had a heart attack and am in early stage heart failure.
11.02.2025 19:49 β π 40 π 19 π¬ 4 π 2
Happy Groundhog Day to fellow #pwLC, #pwME who feel like they are perpetually trapped on repeat. #LongCOVID
02.02.2025 18:22 β π 6 π 0 π¬ 0 π 0
Solidarity and peace to those suffering with #LongCOVID this holiday season. π
Itβs my 4th year being homebound and unable to celebrate, and so far is the most difficult yet.
24.12.2024 17:56 β π 9 π 0 π¬ 1 π 0
Many of us at the @TheWHN worked many hours on this PSA and it has began getting a lot of attention. Thanks! whn.global/public-servi...
04.12.2024 22:52 β π 71 π 26 π¬ 2 π 3
Thanks for sharing your story, Ty.
27.11.2024 02:13 β π 1 π 0 π¬ 1 π 0
Yep, Iβm one of those that receive biweekly cognitive rehab sessions with a brain injury specialist.
27.11.2024 02:10 β π 11 π 0 π¬ 0 π 0
A lot of people don't realize that many patients with #LongCovid are now often being treated in Brain Injury Clinics, together with patients recovering from traumatic brain injury after a concussion. It's been hard to keep up with the literature, but here is a new one published yesterday #NeuroCovid
27.11.2024 00:11 β π 634 π 234 π¬ 24 π 14
Covid-19 may lead to longest period of peacetime excess mortality, says new Swiss Re report | Swiss Re
Covid-19 may lead to longest period of peacetime excess mortality, says new Swiss Re report
Analysts at Swiss Re (one of the largest reinsurers in the life insurance industry, with huge financial incentives to get this right) estimated that current COVID policies will see excess deaths of ~3% in the US and ~2.5% in the UK for at least the next decade.
www.swissre.com/press-releas...
25.11.2024 20:11 β π 122 π 52 π¬ 2 π 10
Long COVID science, research and policy - Nature Medicine
This Review outlines the current state of scientific evidence on long COVID, discusses its impacts on patients, health systems, economies and global health metrics, and proposes a forward-looking rese...
My first post has to be about #LongCOVID
πΉ 400 million individuals affected worldwide
πΉ $1 trillion in annual economic costs
πΉ Countless lives & communities shattered
The time for a comprehensive policy and research response is now!
Details in our review here www.nature.com/articles/s41...
19.10.2024 17:49 β π 1627 π 702 π¬ 107 π 56
Done. I thought this was a joke when I first saw it.
21.11.2024 22:57 β π 2 π 0 π¬ 1 π 0
Thank you. I miss exercising dearly.
21.11.2024 22:40 β π 3 π 0 π¬ 1 π 0
Minute two of exercise feels like mile 22 of a marathon when one βhits the wallβ. Itβs not deconditioning, feels like I skip aerobic metabolism phase. Then I spend weeks to months in bed recovering from 5 minutes of exertion.
21.11.2024 16:48 β π 5 π 0 π¬ 1 π 0
I was a firm believer in this (why I became a PT, ATC, CSCS- taught ex. science etc.) and personally exercised daily. Now I have #LongCOVID and I become significantly more sick every time I try to exercise. We need research to explain why.
21.11.2024 16:44 β π 6 π 0 π¬ 1 π 0
Iβve always been primarily neurological symptoms (seizures, migraines, coordination and speech issues, severe POTS) and am currently in an IVIG trial. Since starting the fatigue has been awful- totally immune system based.
21.11.2024 16:37 β π 2 π 0 π¬ 1 π 0
Same. Iβm severe as well.
21.11.2024 00:26 β π 1 π 0 π¬ 1 π 0
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Letβs start with a trip down memory lane.
1/
20.11.2024 11:27 β π 674 π 285 π¬ 67 π 60
Happy to tell my story and contribute to this article. #longcovid #pots #mecfs
18.11.2024 19:53 β π 14 π 5 π¬ 0 π 0
Thank you! Taking some energy to figure it out but happy for the move π. #longcovid
18.11.2024 19:44 β π 1 π 0 π¬ 0 π 0
Author of Florence in Ecstasy. Living with and writing about #longcovid
https://lithub.com/a-single-ray-of-light-on-ray-bradburys-all-summer-in-a-day-and-living-in-the-shadow-of-long-covid/ www.JessieChaffee.com
#LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies
https://bio.site/longcovidphysio
Physician/Internist focused on complex illness including Long Covid, ME/CFS, dysautonomia/POTS, MCAS, connective tissue disorder, and of course SIBO/Leaky Gut.
And sadly, the ongoing coup.
Long Covid since 2022, ME/CFS and POTS. All damage from one infection. Former functioning person. Navigating the grief that comes with this illness taking so much from us.
#CovidIsAIRBORNE π·
#LongCovid since β22, fighting the fight: Watch out for the occasional F-bomb.
Art, writing, ritual, intention.
I, myself, am strange and usual. π
www.thewoodedwyrd.net
Former marathoner & triathlete that raced w/ Liam. Disabled w/ Long Covid & stage IV cancer. Artist. Long Covid advocacy satire videos. Co-host of The Butterfly Pavilion Podcast. Love my wife, kids, family. https://linktr.ee/seekingbostonmarathon
Proud San Diegan through-and-through: Been fortunate to work in RFK campaign inβ68, Jerry Brown in β76, Gore in β00, California Draft Gore in 2008 and Obama in β12. Also Reps. Scott Peters and Lionel VanDeerlin. Followed Joe Biden since β72. X @Solaroy
Scientist. Director of AI + Life Sciences and Professor of Public Health Sciences at Northeastern University. External Faculty at the Santa Fe Institute and Vermont Complex Systems Institute. scarpino.github.io
Retired Chemical Engineer.
My grass is BLUE!
Lover of LEGO, Bats, Wildlife, Art, Doggos, the Macabre. Cover pic is Horseshoes and Hand grenades!
Liberal! Pro LGBTQ+π³οΈβπ!
Pronouns: She/her
Be The Bear π»
CrunchME is a patient-led organisation, creating the evidence and insight base needed to crunch infection-associated chronic conditions (IACCs), including #MECFS and #LongCovid.
π https://crunchme.org/
Founder @ CrunchME | Creating the evidence & insight base to crunch infection-associated chronic conditions π
#MECFS #LongCovid #IACC #PAIS
π https://crunchme.org/
Preventing healthcare-associated infections by sharing research, evidence and best practice in UK healthcare and around the world. We have over 1,300 members who are experts in the prevention and control of HCAIs.
#InfectiousDisease #IDsky #Medsky #IPsky
I tick many boxes:
β
Heritage consultant for games
β
Experimental archaeologist
β
Game writer
β
(Game) composer
β
Singer
β
π³οΈβπ
β
50% π³π΄, 50% π§πͺ
β
@musicweeklies admin
βAbba fan
Dentist in New Zealand.
Interested in a bit of everything.
Nonprofit news you can trust in greater Kansas City, Kansas and Missouri.
www.thebeaconnews.org
Licensed Marriage and Family Therapist (#134337)(#4930-R). Not your therapist. Bi. Specializing in disability, EMDR, and LGBT. Live in California or Nevada and would like to see a disabled therapist? Schedule a free consultation at BrianaMills.com
she/her, Filipina en EspaΓ±a, international development and human rights professional, pop/queer/fandom culture enjoyer, illness avoider, clean air enthusiast (@coffeeteanxiety on twitter, trying to find my people and post here more often)
Social justice. Masks. COVID is airborne. Love is love. Don't forget Sudan. Retired from teaching because the schools are broken. Now I get paid to inform. Believer of science. Teacher of kindness. βοΈ