From the #ThereForME series:
"The importance of understanding rest"
https://www.thereforme.uk/p/the-importance-of-understanding-rest
"This cultural dismissal of rest is especially harmful to people with ME or Long Covid, who must often rest for prolonged or indefinite periods. They face not only the impact of their condition, but also repeatedly justifying their need to adapt."
Some ME/CFS resources (groups, documents, videos) in no particular order:
I mentioned the #MEAction group earlier in this thread (see #StopRestPace post)
Their website has lots of good info!
Their events calendar includes support groups, advocacy meetings, and support for artists and writers:
https://www.meactions.org/event-list
Recent youtube posts:
https://www.youtube.com/@MEActNet/shorts
8/n
#MEcfs #PwME #LongCovid #MillionsMissing #WorldMEDay #MEAwarenessDay
Okay, taking a break for a while!
I'm resting to avoid PEM (post-exertional malaise) also called PESE (post-exertional symptom exacerbation)
Speaking of resting here's a link to the #StopRestPace page by #MEAction which was created a few years back to explain the importance of pacing and resting to new Long Covid patients:
https://www.meaction.net/stoprestpace/
It has links to a few different pacing and management guides.
6/n
Reminder - Long Covid patients and ME/CFS patients have a lot of overlap in symptoms. Some Long Covid patients fully meet the ME/CFS diagnostic criteria.
Research on Long Covid/Post-Covid and ME/CFS should be coordinated - new information could help both patient populations!
Some links for folks who are brand new to this topic -
What is ME:
https://www.meaction.net/learn/what-is-me/
#StopRestPace for Long Covid:
More quotes:
"Check out other organizations that fight for Long COVID day in and day out including:
Black Long COVID Experience, COVID-19 Longhaulers Advocacy Project, Long COVID Families and Patient-led Research Collaborative, among others!
Share information, check out these groups, donate today!
Long COVID research care and treatments matter for everyone."
3/3
#LongCovid #MEcfs #Awareness #ChronicIllness #StopRestPace #LongCovidAwarenessDay
#MEAction has been fighting to protect the Long COVID Advisory Committee at HHS, which was recently dismantled.
In this video, five patient-advocates read an open letter to Health and Human Services Secretary Robert F. Kennedy Jr.
https://www.youtube.com/watch?v=hQn3kqyAT6w
2/3
#LongCovid #MEcfs #Awareness #ChronicIllness #StopRestPace #LongCovidAwarenessDay #USPol
From #MEAction:
Long COVID Awareness Day
March 15
https://www.meaction.net/2025/03/14/long-covid-awareness-day/
"Today is Long COVID Awareness day, and we want to lift up the importance of Long COVID advocacy. We ask you to share this video created by #MEAction volunteers today."
Link to video in next post
1/3
#LongCovid #MEcfs #Awareness #ChronicIllness #StopRestPace #LongCovidAwarenessDay
Podcasts I like, when I have to rest but my mind is bored:
https://lateralcast.com/ Puzzle questions with Tom Scott and guests
https://www.escapethispodcast.com/ Audio escape rooms (somewhere between Pen&Paper and escape rooms)
I do hope that this research on subtypes somehow leads to better diagnosis and treatment! (It's all a bit beyond me)
But it seems like this data also emphasies that regardless of subtype most Long Covid patients need to pace themselves and avoid exertion as much as possible. Difficult to do, but necessary for most patients so they can avoid getting even worse.
Some resources here:
https://www.meaction.net/stoprestpace/
3/n
From Bateman Horne Center:
"Patients with PEM benefit more from pacing & energy conservation than exercise-focused treatments.
This video covers tools like symptom-based pacing, task analysis, & HRV tracking to manage symptoms."
On a more serious note, here's a web page with information on pacing so you can avoid PEM (post-exertional malaise, also called post-exertional symptom exacerbation).
Scroll down to see links to pacing and management guides.
https://www.meaction.net/stoprestpace/
EDIT: Pacing is not a treatment, it's just a way to try to minimize symptoms!
We need to find better treatments, or a cure, but sadly this is what we have right now.
I never thought I'd end up with a chronic illness where the most useful health advice comes from an old Vaudeville joke:
Patient: Doc, it hurts when I do this!
Doctor: Then don't do that!
Link for resources and more information from #MEAction
For all Long Covid patients on #LongCovidAwarenessDay :
Please remember to "Stop. Rest. Pace." to try to avoid PESE (post exertional symptom exacerbation), also called PEM.
Roughly half of Long Covid patients meet ME/CFS diagnosis.
https://www.meaction.net/stoprestpace/
And for everyone else - please do whatever you can to prevent the spread of COVID!
#COVID #CovidIsNotOver #LongCovid #MEcfs #StopRestPace #PEM #PESE
@KimPerales Some good info, but I'm not sure that HBOT has much evidence for helping patients.
Also, I wish more articles that talk about Long Covid and PEM (post exertional malaise) would mention ME/CFS which is where the term PEM comes from.
Studies have shown that roughly half of Long Covid patients meet ME/CFS diagnosis.
See the MEAction website for more info, and for pacing and management documents:
For folks having trouble with post COVID recovery (even if you're not officially diagnosed with Long Covid or ME/CFS) this pacing and management guide for ME/CFS might be helpful:
https://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf
#COVID #LongCovid #PostCovid #MEcfs #PEM #Pacing #StopRestPace
I know! ME/CFS patients and researchers have been trying to warn folks since the first days of the pandemic but not many have listened 😔
Yep. ME/CFS patients and researchers were sounding the alarm from the very beginning because earlier research had shown ME/CFS cases after SARS, H1N1 flu, and other viruses.
https://www.meaction.net/stoprestpace/
@Bymossypine I needed this today!
Here's a line I use to remind me how important resting is (I forgot where this quote came from):
"It might look like I'm doing nothing ... but on a cellular level I'm really quite busy!"
