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Tom Kindlon Profile picture
@TomKindlon
Sep 11, 2024 • 17 tweets • 9 min read • Read on X
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🧵
New 24-minute video from @MEActNet & @patientled

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"


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

#LongCovid #MEcfs #CFS #PwME #PostExertionalMalaise
1/
Screenshot from a video showing Dr. Yellman (white man with short hair wearing a tie and sweater) sitting in an office speaking to the camera. Text above: Understanding Post-Exertional Malaise with Dr. Brayden Yellman. Text below: #MedEdMonday Four-part video series created by Patient-led Research Collaborative and #MEAction
@MEActNet @patientled @BatemanHorne 2/
From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
Image of a person sick in bed Augmented Symptoms in PEM • - "Flu-like symptoms" (subjective fevers, sore throats, arthralgia, myalgia - Cognitive symptoms (brain fog, word-finding difficulties, reduced concentration) - Insomnia - Headaches - Sensory sensitivity - Orthostatic intolerance Transcript: So people will feel fevers, sore throats, arthralgia and myagia Bateman Horne Center
3/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
The PEM Experience.... - Not uncommon for people experiencing PEM to remain confined to bed for much of the duration of their episode - May struggle to complete basic ADL's including toileting or preparing food "If there was a fire in the house, I am not sure I would be able to make it out in time" It's hard to get up and get dressed. Bateman Horne Center RESEARCH CLINICAL CARE | EDUCATION ▶ ▶2:32/23:35 Understanding Post-Exertional Malaise - Dr. Brayden Yellman #ME ACTION
4/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
Triggers for PEM Exercise Orthostatic stress Cognitive or mental activities Environmental stressors Bright lights Loud sounds Multiple visual inputs Chemical exposures Emotional Responses 3:20 / 23:35 when people are dealing with one of these illnesses. Bateman Horne Center RESEARCH CLINICAL CARE | EDUCATION Understanding Post-Exertional Malaise - Dr. Brayden Yellman #ME ACTION
5/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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
6/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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
7/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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 meas...
8/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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-d...
9/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
Clinical Implications of PEM 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 follo...
10/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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
11/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
How to Clinically Manage PEM PACING PACING PACING Understanding Post-Exertional Malaise - Dr. Brayden Yellman The ME Action Network
12/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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 ...
13/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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 ph...
9 (update)/

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

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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 prol...
14/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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
15/
 From 24-minute video from MEAction & Patient-Led Research Collaborative

"Understanding Post-Exertional Malaise - Dr Brayden Yellman"



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

#LongCovid #MEcfs #CFS #PwME #PEM #PESE
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...
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More from @TomKindlon

Tom Kindlon Profile picture
Jan 26
🧵
"Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise"



Thoughtful blog post which tries to explain postexertional malaise & how those who suffer from it need to be very careful with which activities they do

#PwME #LongCovid
1/ substack.com/home/post/p-17…Why I Can’t Just Meet You for Dinner The Reality of Post-Exertional Malaise Fred Rossi Nov 07, 2025 The conversation always goes the same way. Someone asks if I want to join them for a meal, grab a drink, go to the movies, or some perfectly reasonable social activity that healthy people do without thinking. And when I hesitate, or decline, or try to explain why a Tuesday evening gathering might not work when I’m working Wednesday morning, I can see it in their faces and hear it in their voices: they think I’m making excuses. I’m not making excuses. I’m doing accounting. What PEM Actually ...
2/
He highlights how post-exertional malaise can lead a worsening of the condition which could be permanent.

#MEcfs #LongCovid
3/
“This is what people on the outside don’t understand. When they say “but you’re only working part-time,” they think that means you have all this free time. They don’t understand that the “free time” is actually recovery time. It’s not leisure.”

#spoonie #CFS
Read 7 tweets
Tom Kindlon Profile picture
Apr 21, 2025
🧵
"Why chronic fatigue [CFS] is mistaken for depression: The consequences of misdiagnosis for an invisible illness"



Not bad article on a important topic: pity it keeps calling ME/CFS "chronic fatigue"

#MEcfs #CFS

1/ rollingout.com/2025/04/20/why…Distinct characteristics of chronic fatigue Despite surface similarities, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has several distinguishing features that separate it from depression: Post-exertional malaise: A defining feature of chronic fatigue involves dramatic energy crashes following minimal physical or mental exertion. This hallmark symptom rarely appears in depression cases. Physical sensations: ME/CFS patients frequently experience muscle pain, joint discomfort, headaches and flu-like symptoms that aren’t typically associated with depression. Emotional respons...
2/
 “At first glance, [#CFS] symptoms mirror those of depression,leading to frequent misdiagnosis & inappropriate treatment.This confusion extends beyond simple categorization errors—it fundamentally affects patients’ treatment options,self-perception & access to appropriate care”
3/
 Not convinced this is a characteristic part of ME/CFS:
“Reduced interest in previously enjoyed activities”

Many would love to do “previously enjoyed activities”. Though after they have been sick for a long time, they may look for pleasure in less energy-sapping activities.
Read 4 tweets
Tom Kindlon Profile picture
Mar 21, 2025
🧵
"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."



#MEcfs #CFS #PwME

1/ sciencenorway.no/chronic-fatigu… Almost no ME/CFS patients return to work "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher. The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients. (Photo: Gorm Kallestad / NTB) Emilie Wee Journalist Published 21 March 2025 - 00:01
2/
“They see [in the research data] that very few of the patients were well enough to work again, even nine years after diagnosis. These are disappointing results, but unfortunately not particularly surprising.”

#MEcfs #PwME
3/
“Many patient stories show that those who try to adapt to the labor market often experience relapse. Working life is largely not adapted for people with low and varying work capacity, says Trude Schei, assistant secretary general of the ME Association.”

#PwME #MEcfs
Read 5 tweets
Tom Kindlon Profile picture
Mar 5, 2025
🧵
"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"



Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

#chronicillness

1/ eurekalert.org/news-releases/…News Release 2-Mar-2025 Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds Peer-Reviewed Publication University of Cambridge
2/
 “A study involving over 3,000 participants – both patients & clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health & wellbeing and damaged trust in healthcare services”
3/
“Patients who reported that their autoimmune disease was misdiagnosed as psychosomatic or a mental health condition were more likely to experience higher levels of depression and anxiety, and lower mental wellbeing. (contd)”

#psychologisation
Read 12 tweets
Tom Kindlon Profile picture
Feb 14, 2025
🧵
Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders



#LongCovid #MEcfs

1/ mdpi.com/1660-4601/22/2…Abstract People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners a...
2/
Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders



#LongCovid #MEcfs mdpi.com/1660-4601/22/2…Table 1. Never-words, their impact, and suggested alternatives. Never-Words Explanation and Impact Alternative “You don’t look sick”. Many patients may appear healthy, but feel very sick with various symptoms, including fatigue and pain. Please refrain from commenting on their appearance. “You need to stay positive”. Saying this to patients with debilitating symptoms with limited treatment implies that the patient did not stay positive or that the patient’s attitude is to blame for feeling or staying sick. “I know it can feel discouraging to feel so sick, and especially for so long. We will...
@dysclinic @njsmyth 3/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders



#PwME #PwLC mdpi.com/1660-4601/22/2…Screenshot of part of Table 1. Never-words, their impact, and suggested alternatives.
Read 14 tweets
Tom Kindlon Profile picture
Oct 23, 2024
🧵
"Ignored, blamed, & sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal"



There's an audio version of this long but highly recommended article at link

This is a thread with some extracts
#MEcfs #CFS #pwME
1/ theconversation.com/ignored-blamed…The Conversation Search analysis, research, academics… Academic rigour, journalistic flair Arts + CultureBusiness + EconomyEducationEnvironmentHealthPolitics + SocietyScience + TechWorldPodcastsInsights Photo of somebody lying in bed looking ill Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal Published: October 21, 2024 10.35am BST There is a city nearby that we hide from view. Its people are of all ages, ethnicities and classes. What unites them is a disease: all are diagnosed with myalgic encephalomyelitis, or ME. Ph...
2/
“Worse, when we don’t ignore them, we blame them, telling them they are all free to rise from their beds & wheelchairs, to walk away from the city. Doctors tell them they can free themselves of the disease by changing their belief systems. (contd)”

#MyalgicEncephalomyelitis
3/
“(Contd) Make the effort, they say, and you will regain your health and previous lives.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Read 7 tweets

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