#postexertionalmalaise
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benking01.bsky.social
#BackToSchool for the almost 300th time 😀

I've found ways to manage my #LongCovid #PostExertionalMalaise symptoms by - unsurprisingly - avoiding overexertion; Minute by minute, hour by hour, day by day.

#Pacing matters; so I'm getting up *much* earlier today, to de-ice my car 🙏

#Visible #EliteHRV
Visible Health Looking Stable EliteHRV readiness of 8 out of 10. Slight PNS dominance over SNS
January 5, 2026 at 5:43 AM
benking01.bsky.social
Loving the #Pacing on my own terms that comes from being off-work 🙏

Well-behind my #VisibleHealth pacesetter despite catching the bus to the cinema - 12 PP in hand 😊

I've been pacing to successfully avoid #LongCovid #PostExertionalMalaise for a year and a half now 🙏
Visible Health donut graph showing that I've only used 5 out of today's 30 Pacepoints. 12 behind my daily pacesetter
December 21, 2025 at 3:07 PM
benking01.bsky.social
...confirms what I suspected:

I've already reached today's Hour of 'Moderate' movement, so I'll be RESTING for the remainder of the day 🙏

I don't want #PostExertionalMalaise for Christmas!

#LongCovid #Pacing #SymptomManagement
Sedentary time so far today: 2 hours 52 minutes. Light movement: 2 hours 20 minutes. Moderate movement 59 minutes.
December 19, 2025 at 2:27 PM
benking01.bsky.social
Piecing it all together using my third morning check-in via #EliteHRV it becomes clear 👇

My early warning system is complete 🙏

Avoiding #LongCovid #PostExertionalMalaise symptoms via #micropacing and by noticing a #ParasympatheticSwing while I still have time to act 🙏
Parasympathetic Activity very high. Readiness of 2 out of 10
November 28, 2025 at 7:34 AM
benking01.bsky.social
Feeling really healthy today! But not going to let my guard down.

Got to keep #Pacing if I'm to avoid overexertion and the potential return of my debilitating #LongCovid #PostExertionalMalaise symptoms.

Weekly #NuffieldHealth gym session was so much fun!

bsky.app/profile/benk...
benking01.bsky.social Dr Ben King 🌍 @benking01.bsky.social · Nov 25
I used to burn through 8-10 #VisibleHealth PacePoints in my weekly gym sessions. Now I use just a handful of PP.

RESTING properly in-between each activity allows my HR to return to a resting pace and I barely work-up a sweat.

Maintaining #strength #mobility and #cardio fitness despite #LongCovid
Heartrate graph showing my HR during the gym session
November 25, 2025 at 12:39 PM
d2p.bsky.social
This blog post is a very accurate characterisation of the experience of living with #PostExertionalMalaise #PEM.

Recommended reading for healthcare professionals who want to understand #MECFS and #LongCovid.

You generally only see these patients when they're at their best — not in the aftermath.
darthfoo.bsky.social Fred Rossi @darthfoo.bsky.social · Nov 17
Here’s a quote from my piece, Why I Can’t Just Meet You for Dinner, about post-exertional malaise. This is after work while I’m in the middle of a PEM crash. #PEM #MECFS #LongCovid #ChronicIllness #Disabled

substack.com/home/post/p-...
November 24, 2025 at 10:32 PM
lucyjanegrundy.bsky.social
#acceptance
#postexertionalmalaise
#friendship
#sadness
#selfacceptance
#nobodyisperfect
#affirmationoftheday
November 21, 2025 at 11:40 AM
nlizaki.bsky.social
#mecfs #verysevereme #cfs #mouldexposure #DV #Karachi #KarachiPakistan #PEM #postexertionalmalaise
November 18, 2025 at 7:42 PM
benking01.bsky.social
I've got a couple of hours in hand, so Resting is what I'll do. I can think of worse places to spend time on a Wednesday afternoon!

#Pacing to avoid overexertion and to prevent the onset of the #PostExertionalMalaise #PEM associated with my #LongCovid 🙏
November 12, 2025 at 4:03 PM
cordeliaappleby.bsky.social
Newly published study offers hope to both males and females with #LongCovid - but in different ways 👇
It also explains why I don't have 'brain fog', but why my life is now like running a marathon on a flat battery. @greensagainstcovid

www.cell.com/cell-reports...

#PostExertionalMalaise
Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS
Shahbaz et al. find that female long COVID patients with ME/CFS exhibit heightened inflammation, altered hematopoiesis, disrupted hormone levels, and neuroinflammatory gene signatures. In parallel, ou...
www.cell.com
November 8, 2025 at 10:24 AM
benking01.bsky.social
Newly published study offers hope to both males and females with #LongCovid - but in different ways 👇

It also explains why I don't have 'brain fog', but why my life is now like running a marathon on a flat battery.

Very useful.

www.cell.com/cell-reports...

#PostExertionalMalaise
Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS
Shahbaz et al. find that female long COVID patients with ME/CFS exhibit heightened inflammation, altered hematopoiesis, disrupted hormone levels, and neuroinflammatory gene signatures. In parallel, ou...
www.cell.com
November 8, 2025 at 8:49 AM
tomkindlon.bsky.social
Podcast: "Improving quality of life - managing P.E.M. and moving towards stability with O.T. Amy Mooney"

madevisible.podbean.com/e/23-activit...

I haven't listened myself so far but have been impressed by previous comments by Amy.

#MEcfs #LongCovid #PostExertionalMalaise
Tuesday Sep 30, 2025 #23 Improving quality of life - managing P.E.M. and moving towards stability with O.T. Amy Mooney Likes 2 Download 2.5K Share Amy Mooney’s aim is to improve the quality of life for her patients. She is an occupational therapist specialising in the treatment of conditions that cause post-exertional malaise (PEM) and their comorbidities – working with patients with ME/CFS, Long Covid, Ehlers Danlos, fibromyalgia, dysautonomia, POTS, and MCAS. Operating from a place of huge empathy and understanding – she is also a mother of a child with these conditions – Mooney focuses on the individual needs of patients, creating personalised strategies to move patients out of a constant fight for survival, and into a situation in which they can start to improve. She does this through a full assessment of patient’s ADLs (activities of daily living) and their symptom fluctuations.
November 8, 2025 at 1:45 AM
benking01.bsky.social
...However, I've been sitting, reclining or lying down for more than 19 of the past 24 hours and I'll be RESTING for the next 10 hours.

Pretty confident - not simply *hopeful* - that I'll manage this, so as to avoid the awful, debilitating #LongCovid #PostExertionalMalaise which #SARScov2 gave me 🙏
a yellow sign that says " support survivors with long term covid "
Alt: a yellow sign that says " support survivors with long term covid "
media.tenor.com
November 5, 2025 at 9:11 PM
westonmale.bsky.social
@biggive.bsky.social
When Rest Isn't Enough: Decoding the Energy Crash in ME' - the ME Association's £40,000 research target for this Christmas:
meassociation.org.uk/big-give-2025/
#BigGiveChristmasChallenge #HospitalSaturdayFund #mecfs
#postexertionalmalaise
Big Give 2025 - The ME Association
Image above: Left to right: Karl Morten, Associate Professor; Beata […]
meassociation.org.uk
November 5, 2025 at 6:51 PM
westonmale.bsky.social
When Rest Isn't Enough: Decoding the Energy Crash in ME' - the ME Association's research target this Christmas:
meassociation.org.uk/big-give-2025/
#BigGiveChristmasChallenge #HospitalSaturdayFund #mecfs
#postexertionalmalaise
Big Give 2025 - The ME Association
Image above: Left to right: Karl Morten, Associate Professor; Beata […]
meassociation.org.uk
November 5, 2025 at 6:45 PM
tomkindlon.bsky.social
New US research:

Post-Exertional Symptom Exacerbation after Sub-Maximal Exercise in Individuals with #MyalgicEncephalomyelitis / Chronic Fatigue Syndrome & Post-Acute Sequelae of COVID-19

journals.lww.com/acsm-msse/ab...

#ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PostExertionalMalaise
Purpose: In individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-acute sequelae of SARS-CoV-2 infection (PASC), physical activity can exacerbate symptoms for days-to-weeks, referred to as post-exertional symptom exacerbation (PESE). This study characterized the trajectory of PESE symptoms before and for 7 days after a sub-maximal exercise task in individuals with ME/CFS or PASC. Methods: Individuals with ME/CFS (n=30) or PASC (n=30) and matched controls (n=30) were recruited from a university hospital and the community setting. Participants completed a 25-minute moderate intensity exercise on a whole-body cycle ergometer. The trajectory of 8 commonly reported PESE symptoms (physical fatigue, mental fatigue, pain, physical function, flu-like symptoms, gastrointestinal symptoms, sleep dysfunction, anxiety) before and for 7 days after exercise. Results: There was variability in the proportion of those who experienced increased symptoms ranging from 46/60 reporting physical fatigue to only 18/30 reporting anxiety. There was no change in any of the symptoms across the 7-day period when analyzed individually. An aggregate score of 4-5 symptoms that includes physical fatigue, mental fatigue, physical function and flu-like symptoms, with or without pain, was more comprehensive in capturing maximal changes in PESE. Changes were greatest during the 72h post-exercise and for those with ME/CFS. The aggregate score shows 8/30 of individuals with ME/CFS and 12/30 with PASC show minimal-to-no increase in PESE, while 6-7/30 show increases greater than 3/10 points. Conclusions: PESE to a clinically relevant exercise task is variable in individuals with ME/CFS and PASC as submaximal exercise does not exacerbate symptoms for some, while modifications of intensity may be necessary to minimize PESE in others.
November 4, 2025 at 2:08 PM
benking01.bsky.social
A couple of errands in town, but I'm in my 'feet up in car' rest position before tackling the supermarket shop.

Reminder: I *feel* fine. Monitoring my heartrate in order to avoid over-exertion and a return of my debilitating #LongCovid #PostExertionalMalaise symptoms 🙏

Grateful for #VisibleHealth
Visible Health heartrate graph and tagging
November 3, 2025 at 2:10 PM
benking01.bsky.social
My heartrate's not *that* high, but it's suggesting 'Activity' (light blue) rather than 'Rest' (white) even though I've mostly been lying down for the past hour 🤔

Grateful for having had time off today; something's not right.

#Pacing to avoid overexertion and potential #PEM #PostExertionalMalaise
Visible Health heartrate graph for the past hour
November 3, 2025 at 11:09 AM
benking01.bsky.social
So, this Thursday morning, I'm not only #VisibleHealth 'Stable' again, I'm also #EliteHRV 'READY' with a good balance between my Sympathetic and Parasympathetic Nervous Systems 🙏

It was challenging, but I got through this last fortnight without any #PostExertionalMalaise symptoms - by #micropacing.
Visible Health screen: 4 out of 5 - Looking Stable EliteHRV screen - 9 out of 10 Readiness
October 30, 2025 at 10:35 AM
tomkindlon.bsky.social
A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff

#MEcfs #LongCovid #PostExertionalMalaise #PEM
Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required. Overnight Care Guidance Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required. Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance. Environment: Ensure call bell, water, and medications are within reach before settling for the night. Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal. Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated. Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end. Personal Care - Showering and Hygiene Daily shower prompts are not required. Please be guided by the patient as to when capacity allows. General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms. Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated. Assistance: Provide quiet, minimal support (e.g., washcloths, seated wash). Avoid standing or prolonged exertion. Environment: Keep lighting low and surroundings quiet. Ensure seating for safety if required. Aftercare: Allow full recovery time after shower; avoid further activity immediately afterwards. Shift Handover Note - Include in SBAR S-Situation: PEM episode Yes No | Start: | Severity: mild/mod/severe B- Background: ME/CFS with PEM; significant light/noise sensitivity; cognitive overload risk. …
October 29, 2025 at 1:54 PM
benking01.bsky.social
EliteHRV does show a slight Parasympathetic Nervous System dominance, and there's still some mucus in my lungs, so I'll still be pacing like crazy today, on our long journey home 🙏

Context: #Pacing and successfully avoiding the #PostExertionalMalaise symptoms associated with my #LongCovid 👍
8 out of 10 Readiness. Slight Parasympathetic dominance evident
October 28, 2025 at 6:49 AM
benking01.bsky.social
This #PostExertionalMalaise is really sneaky!

The morning after some extreme over-exertion and I feel AMAZING!

#EliteHRV and #KubiosHRV are both 'Wellness' apps and they are telling me what I want to hear; namely 'Get Out There To The Gym' - as is usual for my Tuesdays off work...
EliteJRV says there's a slight Sympathetic Swing this morning but that I have a Readiness of 7 out of 10 KubiosHRV says Normal Readiness
October 21, 2025 at 8:34 AM
longcovidanswers.bsky.social
Living in Anaerobic Metabolism. The Struggle with Long COVID, PEM & ME/CFS
Prof Todd Davenport and Dr Funmi Okunola MD discuss your threshold.

#longcovid #longcovidtheanswers #mecfs #postexertionalmalaise
October 17, 2025 at 2:03 PM
benking01.bsky.social
Home. Put the bins out and there's pretty much nothing left in the tank for today.

But I'll keep within budget IF I LIE DOWN FOR THE NEXT 14 HOURS 😑

Living with #LongCovid but finding ways to avoid debilitating #PostExertionalMalaise #PEM 🙏
4.6 pacepoints ahead of today's pacesetter from Visible Health. 2.5 pacepoints within budget - at 6pm.
October 16, 2025 at 4:59 PM
benking01.bsky.social
...but I've already broken my 'hour or so of Moderate daily activity rule - by 3:30pm!

Not intending to move from this sofa for as long as it takes to get my heartrate back down to a Resting Pace 🙏

#Pacing to avoid delayed #PostExertionalMalaise symptoms

#LongCovid #PEM
KiActiv pie chart showing almost 8 hours of movement today, of which 1 hour and 38 minutes has been 'Moderate' movement.
October 13, 2025 at 2:58 PM