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#pese

illmarksillmarks@www.illmarks.com
2025-06-22

2025_6_13 I(carus) scheduled two phone calls on the same day

https://www.illmarks.com/2025_6_13-icarus-scheduled-two-phone-calls-on-the-same-day/

#bodyHorror #cfw #chronicIllness #ChronicFatigueSyndrome #longcovid #me #meCfs #mecfs #MillionsMissing #MyalgicEncephalomyelitis #pem #pese #postExertional #postexertionalmalaise #postexertionalsymptomexacerbation #pwLC #pwme

On a manilla bookmark, the human figure is traced in dark dark blue and has vibrant purple wings which are melting and dripping. some of the drippy ooze is on their body, including in their brainspace. The figure has eyes which are tightly shut and mouth in a tight frown.the dripping is rendered with undulating lines and is the location of the most contrast, drawing the eye down past the figure's legs.
Ellis Jay :LowSpoonsOutlined:El_@kind.social
2025-05-19

Me, to Spouse: Can you please get the...oh, what's the word? The stuff for where we sleep.

Spouse: Where is it?

Me: In the place between the stuff and the things.

Surprisingly, this was enough information for Spouse to find and fetch the freshly laundered bedding.

#PESE #Fatigue #MECFS #ThingsISaid

ahimsaahimsa_pdx@disabled.social
2025-05-12

If you learn nothing else from my thread today, please remember this:

Exercise is NOT recommended for people with ME/CFS!

Exercise is not good for anyone who has post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE), and that includes a significant portion of people with Long Covid.

This video has more info:

youtube.com/watch?v=wxSwYUennB

3/n

@mecfs @longcovid

#MEcfs #PwME #PEM #PESE #LongCovid #MillionsMissing #MEAwareness #WorldMEDay

FriekeFrieke72
2025-01-23

Explanation of method of pacing (with tools) for everyone who suffers adverse effects after any exertion (mental, social, physical, emotional).
youtu.be/ssqBD1-AcII?si=TcBs3g
@longcovid

Tom Kindlontomkindlon@disabled.social
2024-12-18

3/
Full thread on “Skeletal muscle adaptions and post-exertional malaise in Long Covid” by corresponding author:
threadreaderapp.com/thread/186

#LongCovid #PASC #PwLC #PEM #PESE
@longcovid

Tom Kindlontomkindlon@disabled.social
2024-12-07

New UK study:

Effect of a Personalised Pacing and Active Rest Rehabilitation Programme on Post-Exertional Symptom Exacerbation and Health Status in Long COVID (PACELOC).

preprints.org/manuscript/20241

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#PESE #PEM @mecfs #mecfs

screenshot of abstract
Dave Underwooddaveunderwood
2024-11-26

One for all my friends suffering with ME/CFS and Long Covid.

Source: x.com/pain_lyn/status/18609719

This is a graphic featuring text. The text is 'Chronic illness is trying to work out how many things you will have to skip to be able to do that thing you really have to do in two weeks time but also ensuring that you will have time to recover after that thing before you have to do the next thing @itsachronicthing_'
Tom Kindlontomkindlon@disabled.social
2024-10-28

Congratulations to Mark Vink on his new paper 👏

Using Exercise Therapy for #LongCOVID Without Screening for Post-Exertional Symptom Exacerbation Potentially Increases the Risks for Patients Who Suffer from it: A Reanalysis of 3 Systematic Reviews

crimsonpublishers.com/rism/pdf

Hashtags:
@longcovid
#PwLC #postcovid #postcovid19 #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2
@auscovid19
#PESE #PostExertionalMalaise #PEM

Screenshot of abstract
illmarksillmarks@www.illmarks.com
2024-10-24

Symptom: Mental Post-Exertional Malaise

https://www.illmarks.com/symptom-mental-post-exertional-malaise/

#art #bodyHorror #chronicIllness #chronicPain #disablityArt #longcovid #mecfs #medicalArt #MillionsMissing #pem #pese #pwLC #pwme

only pencil in this art. The figure is being talked at by someone else, visible in the foreground, us looking past their shoulder and gesturing arm at the figure. within the figure's chest is a frail humanoid, almost skeletal, curled on their side and sleeping, while also dripping ooze. the rest of the figure is empty, with questionmarks. They're an empty vessel or ghost of the self that has shrunken into their chest and lost all energy and ability.
Tom Kindlontomkindlon@disabled.social
2024-09-22

15/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this video was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE @longcovid @mecfs

IN SUMMARY ⚫ PEM is defined as inability to recover normally following physical, cognitive or emotional exertion. • PEM causes fatigue that is worse than observed in any other fatiguing illnesses, loss of stamina and functional capacity, and augmented symptoms of Long COVID and/or ME/CFS (e.g. autonomic and immune dysfunction). • 2-day cardiopulmonary testing (2-day CPET) is a validated test of functional capacity and a reliable, reproducible, accurate measure of PEM. Long COVID and ME/CFS patients are unique in that they cannot reproduce CPET outcomes on the second day of testing. • People with PEM have impaired cellular metabolism and ATP production. Exercise that induces PEM causes harm to patients. • While graded exercise therapy may be beneficial to patients with dysautonomia without PEM, it causes severe harm to patients who experience PEM. 22:34 / 23:35 Understanding Post-Exertional Malaise - Dr. Brayden Yellman Repeated PEM episodes are associated with worsened long-term functional prognosis. Patients should not push through symptoms but should respect symptoms, and use pacing to prevent PEM. ⚫ Patients should be encouraged to pace to reduce the frequency of PEM episodes or avoid PEM altogether. Some pacing strategies include: •
Tom Kindlontomkindlon@disabled.social
2024-09-21

14/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I doubt this happens in every case: I'm not sure they're even claiming that

#LongCovid #MEcfs #CFS #PwME #PEM #PESE @longcovid @mecfs

How to Clinically Manage PEM • Over time, continued limitation of PEM or complete avoidance does seem to lead to clinical symptom stability and gradual improvements in the limits of patient's energy envelopes so that they can ultimately gain back additional function without triggering PEM Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network
Tom Kindlontomkindlon@disabled.social
2024-09-17

9/ (updated version)

From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
@longcovid @mecfs

Clinical Implications of PEM This line is crossed out: BE MENTALLY STRONGER THAN WHAT YOU PHYSICALLY FEEL! • PEM is perhaps the most DEBILITATING and miserable aspect of ME/CFS and PASC as an illness It has been long-recognized by clinical providers who treat ME/CFS that continued and repeated episodes of PEM within any one individual appear to be associated with a worsened long-term functional prognosis When patients choose to or are spurred to "push through" their symptoms to the point of repeated inducing PEM, they may eventually experience a particularly severe or prolonged episode of PEM followed by a resetting of their already reduced "baseline function" where their "bad days" now represent "good days" and they experience ever more functionally limited "bad days" of all the symptoms people can experience that worsen during PEM makes a lot Understanding Post-Exertional Malaise - Dr. Brayden Yellman #ME ACTION #ME The ME Action Network Subscribe 4.14K subscribers
Tom Kindlontomkindlon@disabled.social
2024-09-17

13/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE @longcovid @mecfs

How to Clinically Manage PEM Patients should: • Remember that cognitive exertion (even subconscious processing of sensory inputs) and emotional exertion are as damaging as physical exertion - Remain within their "energy envelope" or "battery" • Take frequent, restorative breaks • Set timers during activities - Modify activities to provide less physiological stress (laying down, reclining, legs elevated, sitting) - Plan a day's activities carefully and not overfill any particular day - Choose what is important use of their time - Set voice reminders and lists on their phone - Consider grocery delivery services, home cleaning services, etc. as able - Learn to ask for HELP from others Bateman Horne Center RESEARCH CLINICAL CARE | EDUCATION This is a skill that develops over time, as I'm sure you experienced, Chimére. Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network
Tom Kindlontomkindlon@disabled.social
2024-09-16

12/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
@longcovid @mecfs

How to Clinically Manage PEM • There is nothing that definitively speeds up recovery from PEM other than not making it worse by continuing to "fight" or "push through" the limitations of this physiologically altered state - Forcing continued, repeated, and exertional exercise to combat an underlying decompensated state, while seemingly logical, only appears to promote worsened long-term outcomes (Graded Exercise Therapy) • A patient does not manage ME/CFS or PASC on the whole by fighting harder, but by being smarter and employing discipline and calculated intelligence so as to minimize the intensity and duration of PEM or avoid PEM altogether A line through the following (showing it's not recommended): Graded Exercise Therapy A self-help guide for those with chronic fatigue syndrome/ myalgic encephalomyelitis NHS Bateman Horne Center Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network
Tom Kindlontomkindlon@disabled.social
2024-09-16

11/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
@longcovid @mecfs

How to Clinically Manage PEM PACING PACING PACING Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network
Tom Kindlontomkindlon@disabled.social
2024-09-15

10/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
@longcovid @mecfs

Clinical Implications of PEM • It has been postulated that the neurophysiological responses taking place during PEM may accrue over time, leaving a permanently altered function or injury upon exceeding some threshold or frequency and intensity of these biological processes Stubbed Toe Analogy Cartoon image of someone with a sore big toe Bateman Horne Center RESEARCH CLINICAL CARE | EDUCATION Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network
Tom Kindlontomkindlon@disabled.social
2024-09-14

8/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
@longcovid @mecfs

Cardiopulmonary Exercise Testing Oxidative Impairment in the Post-Exertional State VanNess, JM. Snell, CR and Stevens, S. (2007). Diminished Cardiopulmonary Capacity During Post-Exertional Malaise in Chronic Fatigue Syndrome. Journal of Chronic Fatigue Syndrome 142) 77-85 Bateman Horne Center RESEARCH CLINICAL CARE | EDUCATION . Particularly effective for measuring "peak oxygen consumption" or "VO2 Peak," during exercise VO2 Peak is a well-recognized indicator of functional capacity as a surrogate measure of the maximum energy available for work Deficits on Serial 2-day CPET Testing: Reduced VO2 peak Unable to reach ventilatory threshold Unable to achieve peak workload Unable to duplicate workload at ventilatory threshold compared to day 1 Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network 4.13K subscribers
Tom Kindlontomkindlon@disabled.social
2024-09-14

7/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
@longcovid @mecfs

Cardiopulmonary Exercise Testing Day One ⚫ VALIDATED tool for assessment of functional capacity among healthy people and people with debilitating and fatiguing illnesses ⚫ Assesses the coordinated contributions of metabolic, cardiovascular, respiratory, and muscular inputs to energy generation Serial 2-day CPET Testing Reliable, reproducible, accurate measure of PEM Variability from one day to the next is low among healthy individuals and those with CHF, COPD, ESRD, pulm HTN, CF and other impairing illnesses ⚫ ME/CFS patients are unique in that they cannot reproduce CPET outcome measures on day 2 of testing compared to day 1 of testing, independent of effort Day Two Bateman Horne Center RESEARCH | CLINICAL CARE EDUCATION 6:22 / 23:35 Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network
Tom Kindlontomkindlon@disabled.social
2024-09-14

6/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
@longcovid @mecfs

PEM = Debt? $1.00 per day to spend on energy exertion Spending spree of $10.00 in one day! Spend $1.25 on most days over the course of a time period....eventually the debt must be paid...with interest Bateman Horne Center RESEARCH CLINICAL CARE | EDUCATION ►►◄ 5:02/23:35 Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network 4.11K subscribers
Tom Kindlontomkindlon@disabled.social
2024-09-13

5/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"

youtube.com/watch?v=cGQFGgb_Pt

I thought this was very good. Great to have a doctor who gets it

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
@longcovid @mecfs

Examples of PEM Triggers in More Severely III •Reading a book •Using a computer -Having an improvisational conversation •Showering - Sitting up to eat a meal Images of: - somebody reading a book - somebody having a shower -2 people having a conversation ► Bateman Horne Center RESEARCH CLINICAL CARE | EDUCATION 4:32 / 23:35 Understanding Post-Exertional Malaise - Dr. Brayden Yellman #ME ACTION

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