Long COVID & Fatiguing Illness Recovery Program ECHO Thursday, April 9th, 2026 12:00-1:00 PM PT Long COVID Teams: Identifying Post-Exertional Malaise, Assessing Functional Capacity, and Coordinating Care Presented By: Amy Mooney, MS OTR/L Occupational Therapist – Private Practice OT4ME.com iECHO Registration The Long COVID & Fatiguing Illness Recovery Program will now be hosted in iECHO. Once you have registered, you will receive reminder emails 30 minutes ahead of the session’s start time with a link to join.

Free webinar today in just over 2 hours wherever you are in the world.

Register here:
iecho.org/public/progr...

I have been impressed by Amy Mooney in the past and have no reason to believe she will be anything but good in this webinar.

#LongCovid #PostExertionalMalaise

Starting the day Stable and Ready allows me to be more active.

But I have to be careful; I know my limits and I wouldn't wish #PostExertionalMalaise #PEM on my worst enemy 😌

Avoiding overexertion by careful #Pacing

#LongCovid

bsky.app/profile/benk...

3/
“(Contd) Thinking is exhausting. Being upright is exhausting. I lie flat and stare at the ceiling, which has become a kind of companion these past weeks”

#PostExertionalMalaise #MEcfs #LongCovid

#NESVOID,
#mecfs, #cfs, #MEScience, #ME/CFS, #pwME, #MEeps, #MEAwareness, #PostExertionalMalaise, #MyalgicE, #SevereME,
#MillionsMissin

10.6 out of today's 30 Visible Health pacepoints - 13 behind today's pacesetter. Well below my pacesetter line on the graph.

Well-within my 'energy envelopes' for movement and for #VisibleHealth pacepoints.

Still RESTING all evening, for sure.

I really hope this continues.

#Pacing to avoid the #PostExertionalMalaise associated with my #LongCovid 😊

Symptom Spotlight Post-exertional malaise: not just tired https://mecfssa.org.au/resources/post-exertional-malaise-pem • Key Symptom of ME/CFS: Post-Exertional Malaise • Post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE) is a pathological loss of energy and worsening of symptoms following minimal physical, mental or emotional effort, or other triggers. The onset of PEM may be immediate or delayed by several hours or days. Recovery is prolonged and may take days, weeks or months. • When people with ME/CFS push themselves to use more than their available energy reserves, the loss in functional capacity is inevitable and cannot be reversed by a long rest or a good night's sleep. People often struggle to describe this loss of energy, weakness and exacerbation of symptoms. They may use words like crash, payback, debilitating exhaustion. Drawing of someone looking exhausted and distressed holding tightly to their blanket

This image from ME/CFS South Australia refers to this useful webpage on Post-Exertional Malaise (PEM) on the ME/CFS Australia site:
mecfs.org.au/resources/po...
(the URL redirects here)

#MEcfs #PEM #PostExertionalMalaise #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

"You should think of your energy as if it's a luxury item. Not everyone can afford it." Credit: @femalequotient Image of Taylor Swift on a podcast #pwME #MySeveralWorlds #AutoimmuneFatigue #AutoimmuneDisease #PostExertionalMalaise

"You should think of your energy as if it's a luxury item.
Not everyone can afford it."

Credit: @femalequotient
Image of Taylor Swift on a podcast

#pwME #MySeveralWorlds #AutoimmuneFatigue #AutoimmuneDisease #PostExertionalMalaise

Visible Looking Stable

EliteHRV 9 OUT OF 10 READINESS

Kubios 75% Readiness

Early Saturday morning and I've got this #LongCovid body under control - for now...

#visible_health Stability and HRV trending upwards

#EliteHRV Readiness and Balance

#kubiosHRV Readiness also great

#Pacing to avoid debilitating #PostExertionalMalaise during a dental infection

2/

Very disappointing 🙁

“The very real danger of deterioration as a result of too much activity/exercise/repeated PEM is not communicated in a meaningful way. Compare that to the section of medication, where side effects are clearly communicated!”

#MEcfs #PwME #PostExertionalMalaise #CFS

And of course now I’m crashing.
Fucking #PEM #PostExertionalMalaise from taking a shower last night 🤦🏻‍♂️🤕

#LongCovid #ME/CFS
#CronicIllnessSucks
👋😮‍💨😩🛌

PEM: Why “good days” may be costing you tomorrow

Excellent overview and explanation of #PostExertionalMalaise by @oonaghcousins.bsky.social and shared with me this morning via the #VisibleHealth app by Harry Leeming 👇

www.makevisible.com/blog/post-ex...

HT Todd @sunsopeningband.bsky.social Davenport 🙏

#LongCovid #PEM #Pacing

#PEM #PostExertionalMalaise #ME/CFS #LongCovid #CronicIllness
#PEM_Crash

I’m so #TiredOfBeingSickAndTired

Post-exertional malaise and the myth of cardiac deconditioning: rethinking the pathophysiology of long covid While the number of fatal acute SARS-CoV-2 infections has declined since 2020, the proportion of these infections that result in persisting symptoms has not reduced significantly.1 The continuity or d...

Very important article in the BMJ on #LongCovid #PostExertionalMalaise #PEM
bjsm.bmj.com/content/earl...

Visible Health heartrate graph

So very frustrating! I feel like I could do so much more, but this #LongCovid #PostExertionalMalaise is tricksy!

There have been times when my gym session has used-up 8 to 10 #Visible_Health PacePoints 🤔

Telescopic stool - black - on the footpath entrance the Mediterranean Biome at the Eden Project

Visible Health pacepoints donut graph showing just 12.7 pacepoints used so far today out of 30. 8.5 behind today's pacesetter.

Visible Health heartrate graph for the whole day. Lots of rest (white) and hardly any Exertion (red)

I'm still pretty confident that I'll not experience any debilitating #PostExertionalMalaise symptoms, however, as I have paced the fieldwork day well - thanks largely to my excellent new telescopic stool 👇

8.5 #VisibleHealth pacepoints behind my daily pacesetter 🙏

Hardly any Exertion.

We can stop harm by clearly explaining #PostExertionalMalaise and #MCAS (which I exhibited without knowing back in High School- over 20 years ago). And we can advocate for recognition of the horror and abandonment of people #SevereME, including those that dipped straight into it through #LongCovid

Looking Stable

10 out of 10 Readiness - in balance

That was a challenging week! Minor illness played havoc with my approach to Pacing; but I got through it without #PostExertionalMalaise - which is my aim 🙏

Tuesday is an easily-paced day, as it's my weekly day-off.

Great to be back on top of my game 😊

#LongCovid

#VisibleHealth #EliteHRV

Even when I've paced myself consistently well-enough to avoid the debilitating #fatigue and #PostExertionalMalaise #PEM of #LongCovid the #fasciculations in my calf muscles go on and on.

Years of this now, with no clear understanding WHY.

It's exhausting.

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. …

A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff (repeat)

#MEcfs #LongCovid #PostExertionalMalaise #PEM #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

The Accumulation Problem: What Too Much PEM Does to You Here’s what most people don’t understand: PEM isn’t just a temporary setback. Frequent PEM crashes have compounding effects. Every time you push through PEM (every time you ignore the warning signs and keep going because you have to work, or because someone is visiting, or because you’re trying to maintain some semblance of a normal life) you’re not just paying the price in the moment. You’re potentially worsening your baseline function permanently. The research shows that repeated PEM episodes can lead to: - Disease progression: Making your overall condition worse, not just temporarily but structurally - Lowered baseline function: What used to be manageable becomes impossible - Longer recovery times: The crashes get deeper and last longer - New symptoms: Your body starts failing in ways it hadn’t before - Decreased capacity: Your energy envelope (already devastatingly small) shrinks further

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From:
"Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise"
substack.com/home/post/p-...

I deteriorated over 15 months from high functioning (full-time education for 4+ years) to #severeME for 31 years ☹️

PEM = #PostExertionalMalaise

#MEcfs #LongCovid #CFS #PwME

‪2/‬

‪He highlights how post-exertional malaise can lead a worsening of the condition which could be permanent.‬

‪# #LongCovid‬ #MEcfs #PostExertionalMalaise #PEM #CFS #PEM #PESE

Morning Stability 1 out of 5 - Out of balance. Heartrate variability much lower than usual. Resting HR much higher

Resting HR rising over the past few days - Bar graph from Visible Health

Fortunately it's my Tuesday off-work.

No gym visit today. RESTING to aid recovery and to avoid full-on debilitating #LongCovid #PostExertionalMalaise symptoms 🙏

Lying here in bed at 0745 I feel fine, but my #VisibleHealth data reveal otherwise 👇

Visible Health Heartrate graph for 8am to 5pm showing near-constant Activity

First missed rehearsal of 2026 🎶 😌

Warning signs include 'vibrating' legs despite lying down for well over an hour now.

Didn't get to Rest properly at lunch time, as I had a club to run; then only found 7 minutes with feet-up across a long workday.

Avoiding #PostExertionalMalaise #PEM
#LongCovid

‪2/‬

‪This was very popular a few months ago so I thought I would re-share it.‬

‪#MyalgicE #ChronicFatigueSyndrome‬ #MyalgicEncephalomyelitis #PostExertionalMalaise

Rest breaks and lowered heartrate on heartrate graph

How to #micropace cooking of spaghetti bolognaise 😀👇

#Pacing to avoid debilitating #PostExertionalMalaise - I know my limits 🙏

Visible Health Looking Stable

EliteHRV readiness of 8 out of 10. Slight PNS dominance over SNS

#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 donut graph showing that I've only used 5 out of today's 30 Pacepoints. 12 behind my daily pacesetter

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 🙏

Sedentary time so far today: 2 hours 52 minutes. Light movement: 2 hours 20 minutes. Moderate movement 59 minutes.

...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

Parasympathetic Activity very high. Readiness of 2 out of 10

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 🙏

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...