#Tag · bonfire.cafe

In a thoughtful blog post, the author tries to explain #PostExertionalMalaise and how people who suffer from it need to be very careful with which activities they take on.

He highlights how this symptom can lead a worsening of the condition which could be permanent.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#LongCovid #PEM

Why I Can’t Just Meet You for Dinner

The Reality of Post-Exertional Malaise

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

🧵
"Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise"

https://substack.com/home/post/p-178293036

In a thoughtful blog post, the author tries to explain #PostExertionalMalaise and how people who suffer from it need to be very careful with which activities they take on.

He highlights how this symptom can lead a worsening of the condition which could be permanent.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#LongCovid #PEM

Why I Can’t Just Meet You for Dinner

The Reality of Post-Exertional Malaise

Angela Antunovic boosted

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

Short blog post by K. Johnstone:

"'You'd get better if you just....' is bullying and we don't deserve it."

https://substack.com/@mecfs/note/c-203079885

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid @longcovid #ChronicPain

K. Johnstone
4d
Making sense of ME/CFS

"You'd get better if you just...." is bullying and we don't deserve it.

People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'.

The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking.

It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies. — K. Johnstone 4d Making sense of ME/CFS "You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies.

Substack

K. Johnstone (@mecfs)

"You'd get better if you just...." is bullying and we don't deserve it. People with ME, Long Covid, and other chronic diseases are bombarded with messages that our illness can be treated 'holistically,' using a 'mind-body' approach. We just need to 'calm our nervous systems'. We need to 'reprogram our nervous systems'. The treatment you're supposed to do, the one magic trick that will 'cure' you, keeps changing. Yoga. Breathwork. Mindfulness. No, a different kind of mindfulness. Massage. Positive thinking. No, a different kind of positive thinking. It's exhausting. But more than that, it belittles us. It dismisses us. The people who insist on saying "You'd get better if you just did this one particular type of therapy," see themselves as compassionate, but they are bullies. The truth is we all try so incredibly hard. We've all tried a million different meditation techniques and supplement protocols. We all do everything we can to 'calm our nervous systems'. If that stuff worked, we'd all be cured. As chronically ill people, every day we endure a reality that most people can't even imagine, and don't want to imagine. "You'd get better if you just..." is their way of refusing to accept our reality. The person speaking is too cowardly to face the enormity of our illness, of what we have to endure in our lives, so they try to make it smaller. They try to make us smaller. "You'd get better if you just...." is aggressive. It's bullying. The person speaking doesn't see themself as a spiteful bully, but that is what they are. Underneath the barely-concealed contempt, is fear. We don't deserve any of it. (As a little post-script, I want to 'confess' that I actually lean really hard into all the mind-body stuff. I do mindfulness exercises several times throughout the day, I do breathwork, I do a tiny bit of very gentle yoga, I do self-massage. Living with chronic illness is a daily struggle and that stuff helps a lot with my emotions. But it hasn't cured any of my chronic illnesses. It infuriates me that the people who tell me to do mindfulness are actually talking about the basic 101 version of mindfulness, when I'm already doing that shit at PhD level.)

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

Short blog post by K. Johnstone:

"'You'd get better if you just....' is bullying and we don't deserve it."

https://substack.com/@mecfs/note/c-203079885

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #LongCovid @longcovid #ChronicPain

Substack

K. Johnstone (@mecfs)

phildini boosted

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

Some tips on showering and washing from a sympathetic & knowledgeable occupational therapist who specialises in ME/CFS, Long Covid & other energy-limiting chronic conditions

https://onelifelivedwell.substack.com/p/showers-shouldnt-cost-your-energy

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #Spoonies #Spoonie

Showers Shouldn’t Cost Your Energy

You know, showers are deceptively hard.

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

Some tips on showering and washing from a sympathetic & knowledgeable occupational therapist who specialises in ME/CFS, Long Covid & other energy-limiting chronic conditions

https://onelifelivedwell.substack.com/p/showers-shouldnt-cost-your-energy

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #Spoonies #Spoonie

Showers Shouldn’t Cost Your Energy

You know, showers are deceptively hard.

dch :flantifa: :flan_hacker: boosted

Tom Kindlon

@tomkindlon@disabled.social · last month

"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by

https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting

Gives 9 different short ways to relax the body

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#POTS @pots

Micro-Recovery: The Art of Resting Before You Crash

Tiny pauses that protect your system and remind your body it’s safe to rest.

Tom Kindlon

@tomkindlon@disabled.social · last month

"Micro-Recovery: The Art of Resting Before You Crash" by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid who I have been impressed by

https://onelifelivedwell.substack.com/p/micro-recovery-the-art-of-resting

Gives 9 different short ways to relax the body

Micro-Recovery: The Art of Resting Before You Crash

Tiny pauses that protect your system and remind your body it’s safe to rest.

Billy Smith boosted

Tom Kindlon

@tomkindlon@disabled.social · 2 months ago

Sympathetic article in a Scottish local newspaper

https://www.pressandjournal.co.uk/fp/politics/6915777/aberdeen-chronic-fatigue-me/

“There’s plenty of cases where folk have done the graded exercise, and now they’re in wheelchairs,”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Aberdeen woman reveals chronic fatigue nightmare after struggle to prove she wasn’t just ‘tired’
Amanda Stephen says she was never believed by doctors who thought she was just depressed - but hopes a corner is now being turned.

Amanda Stephen suffers from ME. Image: Kath Flannery/DC Thomson
Amanda Stephen suffers from ME. Image: Kath Flannery/DC Thomson — Aberdeen woman reveals chronic fatigue nightmare after struggle to prove she wasn’t just ‘tired’ Amanda Stephen says she was never believed by doctors who thought she was just depressed - but hopes a corner is now being turned. Amanda Stephen suffers from ME. Image: Kath Flannery/DC Thomson Amanda Stephen suffers from ME. Image: Kath Flannery/DC Thomson

Tom Kindlon

@tomkindlon@disabled.social · 2 months ago

Sympathetic article in a Scottish local newspaper

https://www.pressandjournal.co.uk/fp/politics/6915777/aberdeen-chronic-fatigue-me/

“There’s plenty of cases where folk have done the graded exercise, and now they’re in wheelchairs,”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Alex Akselrod boosted

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

UK press release:

Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities

https://precisionlife.com/news-and-events/me-genetics-study

Paper:
https://www.medrxiv.org/content/10.64898/2025.12.01.25341362v2

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid

PRESS RELEASE
Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities
The study reinforces that ME is a complex multisystemic condition with a clear genetic basis and lays the foundation for future clinical trials that could be faster to recruit and more likely to succeed
Read our FAQs

OXFORD, UK – 4 December 2025 – PrecisionLife today announced new findings from the most detailed genetic analysis of myalgic encephalomyelitis (ME, also known as ME/CFS) ever conducted, revealing more than 250 core genes associated with the disease, including 76 genes linked with long COVID, and uncovering dozens of drug repurposing opportunities supported by genetic biomarker tests, offering potential for faster and lower-risk routes to developing targeted treatments.

The study, now available as a pre-print and submitted for peer review, applied PrecisionLife's AI-led combinatorial analytics platform to analyze genomic data from two DecodeME cohorts together with UK Biobank to confirm reproducibility of results across three independent datasets. The analysis identified 7,555 genetic variants (including the 8 identified by the recent DecodeME GWAS study ), that were consistently associated with increased disease risk in three different populations. — PRESS RELEASE Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities The study reinforces that ME is a complex multisystemic condition with a clear genetic basis and lays the foundation for future clinical trials that could be faster to recruit and more likely to succeed Read our FAQs OXFORD, UK – 4 December 2025 – PrecisionLife today announced new findings from the most detailed genetic analysis of myalgic encephalomyelitis (ME, also known as ME/CFS) ever conducted, revealing more than 250 core genes associated with the disease, including 76 genes linked with long COVID, and uncovering dozens of drug repurposing opportunities supported by genetic biomarker tests, offering potential for faster and lower-risk routes to developing targeted treatments. The study, now available as a pre-print and submitted for peer review, applied PrecisionLife's AI-led combinatorial analytics platform to analyze genomic data from two DecodeME cohorts together with UK Biobank to confirm reproducibility of results across three independent datasets. The analysis identified 7,555 genetic variants (including the 8 identified by the recent DecodeME GWAS study ), that were consistently associated with increased disease risk in three different populations.

phildini boosted

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

Cat Lady's Quilt.
catladysquilts +Chroniclllness 06/28/25
This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all. — Cat Lady's Quilt. catladysquilts +Chroniclllness 06/28/25 This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all.

Tom Kindlon

@tomkindlon@disabled.social · 3 months ago

UK press release:

Groundbreaking myalgic encephalomyelitis study identifies over 250 core genes, shared biology with long COVID, and dozens of drug repurposing opportunities

https://precisionlife.com/news-and-events/me-genetics-study

Paper:
https://www.medrxiv.org/content/10.64898/2025.12.01.25341362v2

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid