@LLS

I don't think it's possible to completely avoid PEM with pacing (too many variables). And your list of activities looks pretty intense for someone who has ME! (I can't climb stairs without getting PEM)

However, there are various methods that folks with ME have tried that may help (heart rate monitoring and others).

There is a Pacing and Management Guide on this #MEAction web page:

https://www.meaction.net/stoprestpace/

I hope it is helpful!

@mecfs

#MEcfs #PwME #StopRestPace #Pacing

@SteveThompson But here's a link to the MEAction web page with several pacing and management guides (including a pediatric one) in case I missed something.

[edited to add the link!]

https://www.meaction.net/stoprestpace/

#LongCovid #LongCovidKids #StopRestPace #Pacing

#MEAction Network

#MEAction had the pleasure of partnering with Shannon Williams-Bramburger of Nourish Therapeutic Yoga to provide a 30 minute, virtual yoga class this summer that was crafted specifically for people with ME.

Still approach cautiously & #StopRestPace.

https://youtu.be/gKbEnTHD3mc

#pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #yoga #spoonie @mecfs @longcovid @yoga @spoonies

For some helpful Long Covid information, and resources on pacing and management, see the #MEAction web page - "Stop. Rest. Pace"

https://www.meaction.net/stoprestpace/

#COVID #LongCovid #StopRestPace #MEAction

@lorq Agreed, Long Covid is real, and it's also serious.

I've been worried about increased cases of post-viral illness since March 2020, though I was not calling it Long Covid at the time.

I've had ME/CFS since 1990 and it was triggered by a virus. Many Long Covid patients meet the ME/CFS diagnostic criteria.

More info on the connection between Long Covid and ME/CFS is on this #MEAction "Stop. Rest. Pace." web page:

https://www.meaction.net/stoprestpace/

#COVID #LongCovid #MEcfs #StopRestPace

Ending this short thread with a few links with more resources:

#MEAction - "Stop. Rest. Pace."
https://www.meaction.net/stoprestpace/

CDC - "What is ME/CFS?"
https://www.cdc.gov/me-cfs/about/index.html

#MEcfs #LongCovid #PEM #StopRestPace #MEAction #CDC

A reminder to rest from #MEAction:

"As a disability-led org, we are trying to set an example that rest is part of activism. This is hard when it feels like our world is on fire, but we know it is non-negotiable. We must balance putting our bodies on the line & building a sustainable movement."

#MEcfs #LongCovid #PwME #PwLC #ChronicIllness #StopRestPace

@mattgrayyes So sorry that you're running into PEM/PESE (post-exertional symptom exacerbation) - that's when pushing too hard causes a "crash."

If you haven't already seen it this #MEAction page has some helpful resources on pacing:

https://www.meaction.net/stoprestpace/

#LongCovid #MEcfs #PEM #ChronicIllness #StopRestPace

@elmyra Pacing (resting as needed, learning to avoid things that trigger symptoms, and so on) is good! It can be confusing when people talk about that old PACE trial - confusing acronym.

So I thought I'd add this link to the "Stop. Rest. Pace." page on the #MEAction website:

https://www.meaction.net/stoprestpace/

#StopRestPace #MEcfs #LongCovid #PwME #PwLC

@bhawthorne I'm so sorry you're going through this😔

I don't have Long Covid but I got ME/CFS in 1990 (I was 29 yrs old) after a viral infection. After so many years I hardly remember what it was like to feel well.

If you haven't already seen it I recommend looking at the MEAction website.

"Stop. Rest. Pace" page:

https://www.meaction.net/stoprestpace/

Pacing guides:

https://www.meaction.net/resource/pacing-and-management-guide/

Hope this helps!

#LongCovid #PASC #MEcfs #PwME #StopRestPace #MEAction

@RayEau @BruceMirken

Hi again 👋

The MEAction web pages below have a lot of good information on the connection between Long Covid (a term used by different folks to mean different things) and ME/CFS (as defined by CDC/NIH diagnostic criteria).

These pages explain things much better than I can:

https://www.meaction.net/stoprestpace/

https://www.meaction.net/long-covid-me-understanding-the-connection/

Hope this helps!

#MEAction #MEcfs #LongCovid #StopRestPace

Those recent studies that have found about half of Long Covid patients have ME/CFS?

This is the chronic illness (often disabling) that those studies are talking about. It is not just chronic exhaustion.

More info here:

https://www.meaction.net/long-covid-me-understanding-the-connection/

#LongCovid #MEcfs #StopRestPace

From MEAction

"Have you had a chance to check out MEAction's 3 Pacing and Management Guides?

We offer the original adult guide, a pediatric guide (developed with Long Covid Families), and a clinician's guide (developed with Patient-Led Research Collaborative for Long COVID)"

Link to documents: https://www.meaction.net/resource/pacing-and-management-guide/

#MEcfs #LongCovid #PwME #StopRestPace #MEaction

@amethystbeeblebear Hi, I agree with others about going slow when returning to exercise and gym workouts. Even normal daily activities may need to be paced when first recovering.

This web page has lots of resources on pacing for folks who already have ME/CFS or Long Covid, so I'm not sure if it talks about prevention, but I thought it might be helpful:

https://www.meaction.net/stoprestpace/

Edit: adding some hashtags- #LongCovid #MEcfs #StopRestPace #MEAction

Information about pacing for ME/CFS and Long Covid patients can be found on the "Stop. Rest. Pace." page of the #MEAction website

https://www.meaction.net/stoprestpace/

#StopRestPace #MEcfs #LongCovid

"Can ‘Radical Rest’ Help With Long COVID Symptoms?"

"There’s growing evidence that overexertion and not getting enough rest in that acute phase of COVID-19 infection can make longer-term symptoms worse."

https://www.webmd.com/covid/news/20230118/can-radical-rest-help-long-covid-symptoms

#COVID #LongCovid #MEcfs #Dysautonomia #POTS #StopRestPace

@longcovid @mecfs

I also recommend the #MEAction website which has a Pacing and Management Guide:

https://www.meaction.net/stoprestpace/

#StopRestPace #MEcfs #LongCovid #NEISvoid #ChronicIllness

Washington Post article on pacing for patients who have Long Covid or ME/CFS:

regular link:
https://www.washingtonpost.com/wellness/2023/01/16/long-covid-fatigue-pacing/

gift link (no paywall for 14 days):
https://wapo.st/3wtniEl

#MEcfs #LongCovid #Pacing #StopRestPace

Edit: Adding a note to say this story has many flaws such as calling ME/CFS "chronic fatigue" a few times and including a quote from Peter White on the PACE trial even though it has been thoroughly debunked.

Some good comments have been made in the replies.

@LongCovidKids For anyone who runs into a paywall here's a gift link (free for 14 days) -

https://wapo.st/3wtniEl

#MEcfs #LongCovid #Pacing #StopRestPace

@MEFoggyDog Saying this again for the people who missed it - M.E. is one of the outcomes of #COVID!

Several studies have shown that about half of Long Covid patients meet the diagnostic criteria for ME/CFS - more info at https://www.meaction.net/stoprestpace/

We need more and better research into illnesses that are triggered by viruses.

#MEcfs #LongCovid #Research #StopRestPace