I have literally zero medical training and nothing here is meant to diagnose or cure anything, it’s just a few things I found that helped me, but your mileage will most likely vary, but I hope you might find some of this useful ✌️
Quick links
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Videos
Podcasts
Social Media
Articles
Not sure what Long COVID is? Start here.
Who’s affected by LC?
As of September 2024, it appears that in the U.S. 17.9% of the population has experienced long COVID, and it generally affects middle-aged to younger people more than people over 60, with cisgender females and transgender people being the most affected.
There is an interactive graph linked below I’d recommend checking out.
Update Feb 2nd 2025: it appears the Current U.S. government felt the need to remove this data, so this link is now dead, but you can see the screenshot I took before it was taken down.
Videos
Several Videos I found useful/interesting, this is a growling list.
What it can look like to get hit by LC (long COVID)
In this video interview, Jack Bearfox talks about his 5-year struggle with ME/CFS, triggered by a viral infection and heartbreak
Sleep and Anxiety
One of the symptoms I struggle with a lot is sleep, it feels like I haven’t woken up feeling rested for years now 😢, but a few things that have helped me are trying to deal with the anxiety I developed around sleep.
I got more and more anxious that I wouldn’t be able to sleep or sleep well and that in itself started making me sleep worse.
This probably sounds like it’s not useful, but the message of this video is to give up on your sleep, you can’t control your sleep, and it will come when it wants.
I still have a bedtime routine so I don’t take this as don’t do anything, but more try to stop obsessing and let go, it wasn’t easy for me but I now almost never dread going to sleep like I used to do, I sleep a little better sometimes and a little worse, and that’s just how it goes.
Post-Exertional Malaise (PEM)
This video explains what it is and what to do when you feel it, along with that repeated PEM episodes can lower your overall health, basically repeated crashing can be very bad, and should be avoided as much as possible.
This video also links to some very helpful PDF’s to help with communication and crashes, you can check them out with the link below.
What is Post-Exertional Malaise?
PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.
Post-exertional malaise is a unique symptom, incongruent with experiences of fatigue after overexertion in healthy individuals. It is not the same as being more tired than normal after activity.
Podcasts
Several Podcastas I found useful/interesting, this is a growling list.
Long Covid Podcast
This podcast has been really helpful for me, from personal stories from people trying to survive with Long Covid, to the various doctors and caregivers trying to help those who have it. They have many great topics, you can just search their archive, with everything from nutritual advice to practical way to try and stay sane.
Try starting with this one
And here’s the full podcast
Social media
Several Social media accounts I found useful/interesting, this is a growling list.
Long Covid Alliance
Website
YouTube
Long Covid SOS
Website
YouTube
Joe Glasgow
TikTok
YouTube
Wondering
Website
YouTube
Jemma Bella
Website
YouTube
Articles
Several Articles I found useful/interesting, this is a growling list.
Blog: How to get on
This is a great blog and group of resources for those trying to survive with ME/CFS, but is applicable to many chronically ill peoples, with how to practice pacing to how to talk to doctors.
Blog: Recovery from Chronic Fatigue Syndrome
An extremely detailed guide and story of Bruce Campbell, PhD long recovery story, it has great pacing types and goes into great detail about how he felt and dealt with many situations that are common for those with chronic illness. Highly recommend, it’s what started my pacing attempts 🙃