Pam C
@PammckC
Neither here nor there
According to a new study, two years after severe COVID infection, #LongCOVID patients still showed increased sympathetic nerve activity, vascular dysfunction, and impaired exercise capacity compared to controls. 1/
#LongCovid twitter is like a soap opera. A bad one with constant reruns too. 🙄
Invited to participate in another #LongCovid study. On one hand, I want to help. On the other, I’m too cynical to think this study will result in much useful data. I’ve been providing 2 years of data via surveys to the NIH for probably nothing so maybe I’m just burnt out. 🤷♀️
Pushed my body beyond its limits for 10 days straight & am now paying the price. Wish I could live my life without the #LongCovid payback. Still, I gaslight myself every time. Spoiler alert: nope, my broken body is still broke & ignoring it doesn’t fix it. 🙄
For 2 yrs, I’ve participated in a NIH post-COVID study. Not sure how checklists will provide meaningful data but I still provide my answers. However, I do often wonder if there is a class on how to create the worst questionnaire b/c some of these are so awful…
Can’t help but wonder if my data was one of the #LongCovid data points behind this presentation. Hit with the double-whammy as Dr. Systrom calls it. Thankful that I do respond to mestinon, just wish it could get me back to 100% youtu.be/YIq1QMCpWHo
We are excited to support the CoRE clinic (@CoRESinai) in their current RCT of a once weekly, low-dose of Rapamycin. If you are a Long Covid patient living in the New York area, consider joining this groundbreaking study by reaching out to [email protected].
My posts on here rarely get a single like or comment so I wasn’t expecting my last post to resonate. As I come up on my 3rd anniversary, it was just a reminder for myself of what I’ve tried and how far I’ve come. Appreciate the dialogue but need to mute. Thx for understanding.
Friends, important question: OTHER THAN the US, what is the best country for accessing treatment/knowledgeable doctors if someone has severe ME? Germany? Ireland? UK? AUS? And why? Asking for a friend. RT for reach pls.
Would you do IVIG as a severe MECFS / SFN / Disautonomia patient? If yes/no, why? Please retweet, like and comment for better reach, you. 🤍
67% of 2,314 Long COVID patients surveyed reported symptoms of a dysregulated autonomic nervous system such as: - A drop in blood pressure when standing - Brain fog or cognitive disturbances - Dizziness or light-headedness - Heartbeat irregularities - Gastrointestinal issues -…
📣#LongCOVID Community: With recent news, we're now hearing NIH RECOVER-TLC research & AHRQ Long COVID clinic funding could also be at risk. So LCC is launching a rapid-response campaign NOW to make it easier to call Congress & ask for #NoLongCOVIDCuts 1/x bit.ly/NoLongCOVIDCut…
#LongCovidAwarenessDay2025 has arrived & though I’m way better than when I first got sick, I am still not whole. This year, I feel more abandoned as ever as I watch people celebrating the dismantling of our health institutions. Collateral damage, likely forever. 😞
I've set up a birthday fundraiser for Long COVID! All funds will go towards Patient-Led Research Collaborative. I'd appreciate it if you could share widely 🙂🙏👇