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Tom Kindlon Profile picture
@TomKindlon
Sep 11 • 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
Oct 23
🧵
"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
Tom Kindlon Profile picture
Oct 1
🧵
I was impressed by knowledge of the Belgian author of this

Automated English translation:
"When exercise puts your health at risk"


Turns out she is a researcher whose research has been supported by @MEResearchUK

#MEcfs #CFS #PwME #MEcvs #CVS

1/ www-eoswetenschap-eu.translate.goog/psyche-brein/w…
Photo of a woman with a towel around her neck who looks like she had just stopped exercising Eos Blogs Psyche & Brain When exercise puts your health at risk For people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), exercise can leave them bedridden for days afterward.
2/
“What makes PEM [post-exertional malaise] particularly insidious is that symptoms often do not worsen until 24 to 72 hours after exercise. As a result, patients who feel fine immediately after exercise can unknowingly push themselves beyond their limits”

#MEcfs #PwME #CFS
3/
 “The well-meaning advice to 'move a bit more', which patients regularly receive, can be counterproductive in their case. Of course, this does not mean people with ME/CFS should remain completely still. Movement remains important, but within the limits indicated by their body”
Read 7 tweets
Tom Kindlon Profile picture
Aug 3
🧵
CW: Distressing topics

“Chronic fatigue, 'mass hysteria', and Dr Melvin Ramsay”

Paywall:


Sympathetic article on Melvin Ramsay, Maeve Boothby-O'Neill, and Edina Slayter-Engelsman.

#MEcfs #PwME #CFS
1/heraldscotland.com/news/24492005.…
2/
On Edina: “It left her bedbound, unable to even shower or use the bathroom, and so sensitive to any kind of sensory stimulation that reading a book or watching the television would be harmful.”

#SevereME #MEcfs #PwME
3/
“Speaking to the BBC prior to her death [from Euthanasia], Ms Slayter-Engelsman compared the experience of ME to being trapped in a spider's web, saying: "Every time you try to get out, the web just gets tighter and tighter around you".

#MyalgicEncephalomyelitis
Read 6 tweets
Tom Kindlon Profile picture
Jun 11
A new definition for Long COVID that has been launched today by the National Academies in the US


5 pages of highlights from report:


#LongCovid #PwLC #postcovid #postcovid19

1/ nap.nationalacademies.org/resource/27768…
nap.nationalacademies.org/resource/27768…
Image is screenshot of text from first link (too long to include here)
2/
 Infographic: Elements of the 2024 NASEM Long COVID Definition


The main page which hosts further links is here, "Examining the Working Definition for #LongCOVID":


#LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC nap.nationalacademies.org/resource/27768…
nationalacademies.org/our-work/exami…
Image is screenshot of text from first link (too long to include here)
3/
 Figure S-1 Definition figure: 2024 NASEM Long COVID definition

From:
A new definition for Long COVID that has been launched today by the National Academies in the US


#LongCovid #PwLC #postcovid #postcovid19 nap.nationalacademies.org/cart/download.…
Figure S-1 Definition figure: 2024 NASEM Long COVID definition
Read 4 tweets
Tom Kindlon Profile picture
Apr 15
🧵
Someone with #MEcfs sent me this set of information they collated on medical gaslighting & said I could share it:

4 Tricks for when doctors gaslight you - Dr. Kaveh LIVE - Medical Secrets (Jul 2023)


#Gaslighting #MedicalGaslighting

1/
2/
 The toxic power dynamics of gaslighting in medicine - Sarah Fraser, MSc MD CCFP (May 2021)



#Gaslighting #MedicalGaslightingncbi.nlm.nih.gov/pmc/articles/P…
3/
 Gaslighting: What It Is and How to Stop It - Medically Reviewed by Smitha Bhandari, MD on Aug 03, 2022 - Written by Stephanie Watson



#Gaslighting #MedicalGaslightingwebmd.com/mental-health/…
Read 4 tweets
Tom Kindlon Profile picture
Mar 29
🧵
NIH ME/CFS deep phenotyping study – summaries and infographics



#MEcfs #CFS #PwME @MEResearchUK

1/5 meresearch.org.uk/nih-me-cfs-dee…
NIH ME/CFS Deep Phenotyping Study Key Findings (in ME/CFS cohort) Immune dysregulation Differences in B-cell and T-cell numbers/markers Metabolic differences Differences in certain metabolites involved in key physiological roles Reduced cardiorespiratory capacity Lower peak respiratory rate, heart rate, and oxygen consumption during cardiopulmonary exercise testing (CPET), and lower anaerobic threshold Sex-based differences in gene expression Often immune and energy production related Microbiome dysbiosis Differences in microbiome composition and species diversity Autonomic Dysf...
2/5
NIH ME/CFS deep phenotyping study – summaries and infographics



#MEcfs #CFS #PwME meresearch.org.uk/nih-me-cfs-dee…
NIH ME/CFS Deep Phenotyping Study Differences in Key Findings (in ME/CFS cohort) catecholamine-related molecules Whilst dopamine and norepinephrine (catecholamines) did not differ between groups, there were differences in certain related molecules "Altered effort preference" Individuals with ME/CFS were less likely to choose harder tasks during the Effort-Expenditure for Rewards Task Decreased activity in brain area correlated with lower grip task performance: Reduced hand grip task performance correlated with decreased activity in the temporal-parietal junction of the brai...
3/5
NIH ME/CFS deep phenotyping study – summaries and infographics



#MEcfs #CFS #PwME meresearch.org.uk/nih-me-cfs-dee…
NIH ME/CFS Deep Phenotyping Study Commentary Small sample size With 17 ME/CFS participants, the small sample size impacts the significance and generalisability of study findings. Also, participant numbers varied across assessments, e.g., CPET only involved eight people with ME/CFS. Minimal mention of post-exertional malaise Whilst post-exertional malaise (PEM) was within the inclusion criteria, PEM was not given an in-depth analysis and was briefly mentioned three times in the paper. One-day CPET was conducted as opposed to two-day CPET (the main method for testing PEM). ME RESEARCH U...
Read 5 tweets

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