I’m a subject in the Recover Autonomic IVIG trial and was told months ago that funding cuts won’t impact this study. Today my nurse is no longer monitoring vital signs during my 6 hour infusion because of budget cuts. 🙄 #LongCOVID
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
It’s been 1,233 days for me suffering from a bedridden to homebound existence. For many others it’s been 5 years. We need help. #LongCOVIDAwarenessDay
#LongCOVIDAwarenessDay2025
As a PT I’ve tried and failed over a 100 times to gently return to exercise from a severe state. If it was possible I’d be cured by now. I decline every single time I attempt to push myself. It’s not mindset or a “preference” issue but completely physiological.
Unfortunately they didn’t 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. I’ve been severe and disabled by LC since 10/21 and have daily chest pain.
Not a bad idea. I believed mine was non cardiac as well, and assumed the shortness of breath etc, was all from POTS
#LongCOVID #POTS #ME patients, please don’t ignore important symptoms. I’ve done a solid job of ignoring chest pain and recently found out I’ve had a heart attack and am in early stage heart failure.
Happy Groundhog Day to fellow #pwLC, #pwME who feel like they are perpetually trapped on repeat. #LongCOVID
Solidarity and peace to those suffering with #LongCOVID this holiday season. 😘
It’s my 4th year being homebound and unable to celebrate, and so far is the most difficult yet.
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...
Thanks for sharing your story, Ty.
Yep, I’m one of those that receive biweekly cognitive rehab sessions with a brain injury specialist.
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
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...
My first post has to be about #LongCOVID
🔹 400 million individuals affected worldwide
🔹 $1 trillion in annual economic costs
🔹 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...
Done. I thought this was a joke when I first saw it.
Thank you. I miss exercising dearly.
Minute two of exercise feels like mile 22 of a marathon when one “hits the wall”. It’s not deconditioning, feels like I skip aerobic metabolism phase. Then I spend weeks to months in bed recovering from 5 minutes of exertion.
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.
‘Working days lost to long Covid could be costing the economy billions of pounds every year as patients struggle to cope with symptoms and return to work, finds a new study led by UCL researchers.’
www.ucl.ac.uk/news/2024/no...
I’ve 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.
Same. I’m severe as well.
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. Let’s start with a trip down memory lane.
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#LongCovid is definitely more than fatigue in my experience, but glad it’s getting more media attention.
Happy to tell my story and contribute to this article. #longcovid #pots #mecfs
Thank you! Taking some energy to figure it out but happy for the move 😊. #longcovid
