#stoprestpace — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #stoprestpace, aggregated by home.social.
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New issue of #TheSickTimes includes a study that found no evidence that wearable alerts improve pacing.
https://thesicktimes.org/2026/02/17/research-updates-february-17/
Not super surprised by this.
The alerts themselves can trigger emotional and sensory exertion.
The data they're generally tracking includes just one type of stressor (physical) - I have yet to find a wearable that can (for example) track emotional overload via voice characteristics; track cognitive load via things like "time spent on computer"; track sensory stimulation via light and sound levels and rate of change.
The proportion of time spent resting and type of rest is a critical factor that is also generally not tracked: vertical vs horizontal vs reclined; physical vs cognitive vs sensory and emotional; degree of stressors and type of stimuli present.
As long as a trial fails to track rest as well as the different types of exertion, impact will be buried in the noise.
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New issue of #TheSickTimes includes a study that found no evidence that wearable alerts improve pacing.
https://thesicktimes.org/2026/02/17/research-updates-february-17/
Not super surprised by this.
The alerts themselves can trigger emotional and sensory exertion.
The data they're generally tracking includes just one type of stressor (physical) - I have yet to find a wearable that can (for example) track emotional overload via voice characteristics; track cognitive load via things like "time spent on computer"; track sensory stimulation via light and sound levels and rate of change.
The proportion of time spent resting and type of rest is a critical factor that is also generally not tracked: vertical vs horizontal vs reclined; physical vs cognitive vs sensory and emotional; degree of stressors and type of stimuli present.
As long as a trial fails to track rest as well as the different types of exertion, impact will be buried in the noise.
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New issue of #TheSickTimes includes a study that found no evidence that wearable alerts improve pacing.
https://thesicktimes.org/2026/02/17/research-updates-february-17/
Not super surprised by this.
The alerts themselves can trigger emotional and sensory exertion.
The data they're generally tracking includes just one type of stressor (physical) - I have yet to find a wearable that can (for example) track emotional overload via voice characteristics; track cognitive load via things like "time spent on computer"; track sensory stimulation via light and sound levels and rate of change.
The proportion of time spent resting and type of rest is a critical factor that is also generally not tracked: vertical vs horizontal vs reclined; physical vs cognitive vs sensory and emotional; degree of stressors and type of stimuli present.
As long as a trial fails to track rest as well as the different types of exertion, impact will be buried in the noise.
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New issue of #TheSickTimes includes a study that found no evidence that wearable alerts improve pacing.
https://thesicktimes.org/2026/02/17/research-updates-february-17/
Not super surprised by this.
The alerts themselves can trigger emotional and sensory exertion.
The data they're generally tracking includes just one type of stressor (physical) - I have yet to find a wearable that can (for example) track emotional overload via voice characteristics; track cognitive load via things like "time spent on computer"; track sensory stimulation via light and sound levels and rate of change.
The proportion of time spent resting and type of rest is a critical factor that is also generally not tracked: vertical vs horizontal vs reclined; physical vs cognitive vs sensory and emotional; degree of stressors and type of stimuli present.
As long as a trial fails to track rest as well as the different types of exertion, impact will be buried in the noise.
-
New issue of #TheSickTimes includes a study that found no evidence that wearable alerts improve pacing.
https://thesicktimes.org/2026/02/17/research-updates-february-17/
Not super surprised by this.
The alerts themselves can trigger emotional and sensory exertion.
The data they're generally tracking includes just one type of stressor (physical) - I have yet to find a wearable that can (for example) track emotional overload via voice characteristics; track cognitive load via things like "time spent on computer"; track sensory stimulation via light and sound levels and rate of change.
The proportion of time spent resting and type of rest is a critical factor that is also generally not tracked: vertical vs horizontal vs reclined; physical vs cognitive vs sensory and emotional; degree of stressors and type of stimuli present.
As long as a trial fails to track rest as well as the different types of exertion, impact will be buried in the noise.
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From The Sick Times:
"Long COVID taught me to slow down and stop trying to meet able-bodied benchmarks"
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Video from Solve ME, about 13 minutes long.
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"
"My body is having an unreasonable reaction to a reasonable action."
Transcript:
https://solvecfs.org/wp-content/uploads/2025/08/Pacing-With-Severe-M.E.pdf
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Video from Solve ME, about 13 minutes long.
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"
"My body is having an unreasonable reaction to a reasonable action."
Transcript:
https://solvecfs.org/wp-content/uploads/2025/08/Pacing-With-Severe-M.E.pdf
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Video from Solve ME, about 13 minutes long.
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"
"My body is having an unreasonable reaction to a reasonable action."
Transcript:
https://solvecfs.org/wp-content/uploads/2025/08/Pacing-With-Severe-M.E.pdf
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Video from Solve ME, about 13 minutes long.
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"
"My body is having an unreasonable reaction to a reasonable action."
Transcript:
https://solvecfs.org/wp-content/uploads/2025/08/Pacing-With-Severe-M.E.pdf
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Video from Solve ME, about 13 minutes long.
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"
"My body is having an unreasonable reaction to a reasonable action."
Transcript:
https://solvecfs.org/wp-content/uploads/2025/08/Pacing-With-Severe-M.E.pdf
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More quotes:
"We also hosted our annual EmPOWER M.E. virtual forum, designed to give patients practical tools and legal knowledge to navigate life with complex chronic illness.
This year’s main session focused on the life-saving practice of pacing — including physical, emotional, cognitive, practical, and sensory strategies …"
Recording of the June 27 EmPOWER M.E. forum:
https://www.youtube.com/watch?v=to9xPPuRM1o
4/n
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New video from Solve ME, a recording of the EmPower M.E. event on June 27:
Pacing: Power In Slowing Down
(about one hour long)https://www.youtube.com/watch?v=to9xPPuRM1o
"Pacing is one of the most talked-about — but often misunderstood — tools in chronic illness management. In this informative session, we’ll break down what pacing really means, why it works, and how it works — so no family has to learn the hard way."
#MEcfs #LongCovid #PwME #PEM #SevereME #StopRestPace #SolveME
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New video from Solve ME, a recording of the EmPower M.E. event on June 27:
Pacing: Power In Slowing Down
(about one hour long)https://www.youtube.com/watch?v=to9xPPuRM1o
"Pacing is one of the most talked-about — but often misunderstood — tools in chronic illness management. In this informative session, we’ll break down what pacing really means, why it works, and how it works — so no family has to learn the hard way."
#MEcfs #LongCovid #PwME #PEM #SevereME #StopRestPace #SolveME
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New video from Solve ME, a recording of the EmPower M.E. event on June 27:
Pacing: Power In Slowing Down
(about one hour long)https://www.youtube.com/watch?v=to9xPPuRM1o
"Pacing is one of the most talked-about — but often misunderstood — tools in chronic illness management. In this informative session, we’ll break down what pacing really means, why it works, and how it works — so no family has to learn the hard way."
#MEcfs #LongCovid #PwME #PEM #SevereME #StopRestPace #SolveME
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New video from Solve ME, a recording of the EmPower M.E. event on June 27:
Pacing: Power In Slowing Down
(about one hour long)https://www.youtube.com/watch?v=to9xPPuRM1o
"Pacing is one of the most talked-about — but often misunderstood — tools in chronic illness management. In this informative session, we’ll break down what pacing really means, why it works, and how it works — so no family has to learn the hard way."
#MEcfs #LongCovid #PwME #PEM #SevereME #StopRestPace #SolveME
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New video from Solve ME, a recording of the EmPower M.E. event on June 27:
Pacing: Power In Slowing Down
(about one hour long)https://www.youtube.com/watch?v=to9xPPuRM1o
"Pacing is one of the most talked-about — but often misunderstood — tools in chronic illness management. In this informative session, we’ll break down what pacing really means, why it works, and how it works — so no family has to learn the hard way."
#MEcfs #LongCovid #PwME #PEM #SevereME #StopRestPace #SolveME
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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."
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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
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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
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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:
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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
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#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
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From #MEAction:
Long COVID Awareness Day
March 15https://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
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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
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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."
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CW: COVID-19 poll, PH-
I have PEM from ME/CFS, triggered by some unknown virus many years ago, not COVID. I can confirm that PEM is no joke. My instinct was to push through my symptoms and that ended up making me a lot worse, ended up on long term disability.
Here's more info from the #MEAction website:
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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.
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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!
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Link for resources and more information from #MEAction
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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
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@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:
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A few more quotes:
"… long COVID patients need to prioritize their own energy regardless of what they're being told by those who don't understand the illness."
Spouses need education on Long Covid because
"any kind of lack of awareness or understanding in a family member or close support could potentially isolate the person struggling with long COVID."For resources on pacing check out this #MEaction website:
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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
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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 😔
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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/
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@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!"
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Yet another tone-deaf email from the #IEEE. This time they want nominations to the Diversity and Inclusion committee. A committee position whose job description includes attending an in person meeting once a year.
I have #LongCovid and am frequently house-bound. I need a mobility aid, and a companion to help me #StopRestPace while I travel. They simply don't grasp the degree or kind of accommodations I require to participate.
They need my input *because* I can't volunteer!
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@robotistry @Frieke72 @longcovid
I can relate!Pacing is especially hard when you add all the cognitive issues (bad short term memory, trouble staying on task).
To be aware *in the moment* that you're doing too much is hard. Plus the definition of "too much" depends on so many other factors (good day/bad day, better/worse sleep, phase of the moon🙄)
So, yeah! Full time in-home staff would be great! 😁
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@longcovid On Pacing.
We are all getting pacing wrong, all the time.
We get it wrong because, as with any Olympic sport, success requires a coaching staff. Experts who can look at what you're doing every day and review what you did / how it affected your performance and provide guidance.
A doctor saying "You should pace yourself. Here's a pamphlet." is like a PE teacher saying "You should compete in the Olympics. Here are some YouTube videos."
It's not what we need.
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@gilduran @georgelakoff
Imagine being an Olympic athlete: balancing the pain against the drive for perfection defines the discipline required.Now imagine someone offers you a full portion of what you want most. Taking it all won't hurt, nothing is stopping you. But you know that you can only take a tenth and then you have to muster the willpower to stop. No pain to balance the scales, just raw strength of mind.
#StopRestPace is for the strong.
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@tomkindlon
Thanks for posting! ❤️Annoying to hear him say prescribing exercise "may be a mistake." Prescribing exercise is definitely a mistake!
It may be that some patients are not harmed by exercise. But I do think that *prescribing* exercise is wrong!
Docs should be advising patients to take it slow and monitor symptoms, especially if the patient has post exertional malaise.
https://www.meaction.net/stoprestpace/
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@rebeccajtiffany So sorry to hear about your kid's long covid. 😢
You've probably already seen this, but for others who are looking at these replies here's a link with some pacing and management resources from #MEAction -
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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.htmlEdit: Video is from the Bateman Horne Center - https://batemanhornecenter.org/
#MEcfs #LongCovid #PEM #StopRestPace #PwME #PwLC #CDC #BatemanHorne