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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
Jun 24
🧵
"How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"



Blog with linked video recording.
Most of the advice is specific to SSDI rather than more generally useful internationally

Also useful for other #spoonies

#MEcfs
1/ longcovidmd.substack.com/p/you-may-qual…How to Apply For—and Receive—Your SSDI Long COVID makes it tricky. Know the rules. Dr. Zeest Khan Jun 23, 2026 I lost my job because of long COVID So I was glad that I had taken my mentor’s advice and purchased disability insurance in residency. I thought that was enough to protect me from the rainy day. But when the time came, it was really hard to prove it was raining. I had to fight to receive the payments I was owed. You might be in the same boat. Paying for a disability policy doesn’t mean you’ll get your payout easily, and it’s an especially tricky process when you have a condition ...
2/
 “Social Security evaluates whether your condition limits activities like sitting,standing,concentrating,lifting,walking,or sustaining cognitive effort throughout a workday.

B points out most drs don’t document these limitations unless patients actively describe them.(contd)”
3/
 “(Contd) She strongly recommends symptom journaling—tracking fatigue, PEM, dysautonomia, and cognitive crashes—and bringing those to appointments so they become part of your medical chart.”

#CFS #LongCovid
Read 8 tweets
Tom Kindlon Profile picture
Feb 20
🧵
Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)



Would be great if hospital staff took these recommendations on board.

#MEcfs #LongCovid

1/ anzmes.org.nz/wp-content/upl…ME Respite logo ANZMES logo Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia) Resources Introduction A care plan for hospital patients with severe to very severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) or long COVID involves a multidisciplinary approach to address the complex and debilitating symptoms these patients experience.
2/
"Actions to take: When patients present at the hospital, the management priorities should be to"

"Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)"



#SevereME #MEcfs anzmes.org.nz/wp-content/upl…Actions to take: When patients present at the hospital, the management priorities should be to: 34 35 1) Allow the patient to lie down, or sit with feet elevated. Provide a wheelchair for energy conservation when mobilising. 2) Stabilise the patient through rehydration (immediate intravenous administration of saline and electrolyte repletion). Treat as hypovolemic shock.36 3) Stabilise the patient through nutritional means (see section on NG tubes). 4) Stabilise dysautonomia. 5) Manage pain and sleep disturbances. 6) Activity management (pacing, low stimuli, low interaction -...
3/
 "It is imperative the environment in the hospital setting does not induce PEM or exacerbate symptoms. Actions to take"

From
"Hospital Care Plan for Severe-Very Severe ME/CFS & long COVID (& associated conditions, e.g.: dysautonomia)"



#SevereME #MEcfs anzmes.org.nz/wp-content/upl…It is imperative that the environment in the hospital setting does not induce PEM or exacerbate symptoms. Actions to take: Idea ly patients with severe-very severe ME/CFS or long COVID require:40 41 ● Direct admission to a Ward (bypassing ED) ● A very quiet, darkened, single room environment. ● Stabilised temperature. ● Limited physical and mental activity. ● Medication/supplement plan that is kept to a minimum (very low doses are better tolerated with slow titration upwards.42 ● Assessment of the risks and benefits of each medication or supplement. ● Assessment of potential risks of adv...
Read 7 tweets
Tom Kindlon Profile picture
Feb 8
🧵
Interview with Bita Nezamdoust - medical sociologist and author of "Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome"

chroniclivingtherapy.com/nezamdoust-mar…

Screenshot from @ChronicLiving1 newsletter

#MEcfs #SevereME @lammas_leaves

1/ x.com/TomKindlon/sta…Bita Nezamdoust - medical sociologist We start 2026 with this interview in which Bita Nezamdoust reflects on her recent publication, looking at how isolated patients use social media. She reflects on how this may help therapists to understand the experiences of people with severe and very severe ME. This patient group is often neglected due to the 'non-standard' approaches needed to search them out and listen to them. Using short communications on social media is an ingenious way to amplify some of the voices and needs of these patients. Bita gave generously of her time in answering my m...
@ChronicLiving1 @lammas_leaves 2/
"As I closely read and coded the tweets, patterns began to emerge around recurring experiences such as:

physical debilitation
social isolation
medical neglect
loss of independence
struggles with disability systems"

#MEcfs #SevereME
@ChronicLiving1 @lammas_leaves 3/
"These themes reflect different but interconnected areas of life where delegitimization plays out. For example, disbelief from clinicians affects access to care.This in turn affects eligibility for disability support, which then shapes economic survival & emotional well-being"
Read 8 tweets
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

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