#Tag · bonfire.cafe

Perhaps the most frustrating thing about having a chronic energy limiting disability is other people's ignorance about chronic energy limiting disabilities.

Every time your self preserving actions, inability to do something, requests for accommodations, skeptical attitudes, or apathy towards my situation occur it diminishes my ability to do things. I'd absolutely be able to do more if everyone else either had a little compassion or would just fuck off alltogether.

#MEcfs #ME #MyalgicEncephalomyelitis #ChronicDisability #ChronicIllness

bananamangodog

@bananamangodog@aus.social · 3 weeks ago

Perhaps the most frustrating thing about having a chronic energy limiting disability is other people's ignorance about chronic energy limiting disabilities.

#MEcfs #ME #MyalgicEncephalomyelitis #ChronicDisability #ChronicIllness

Sabrina Web :privacypride: 📎 boosted

Anna

@halcionandon@disabled.social · last month

I need 1 good person to get me out of here please get me out of here. JUST ONE.😭

Stuck with one diagnosed #narcissist/#psychopath but others are the same. I don’t want to die here.

Help please.!!!!!🙏

#MECFS
#SevereME
#LongCovid
#ChronicPain
#Hypothyroidism
#Endometriosis
#Abuse
#NarcissisticAbuse
#Neglect
#FDV
#DV
#MutualAid #MutualAidRequest

Andreas Wagner boosted

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

The German ME/CFS Research Foundation has published a half-year report to give an overview of what they have achieved in the second half of 2025.

Version in English:
https://mecfs-research.org/en/2025winter-report/

#MEcfs #CFS #PwME @mecfs

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

The German ME/CFS Research Foundation has published a half-year report to give an overview of what they have achieved in the second half of 2025.

Version in English:
https://mecfs-research.org/en/2025winter-report/

#MEcfs #CFS #PwME @mecfs

Billy Smith and 1 other boosted

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

From:
https://bsky.app/profile/chromatowski.bsky.social/post/3liuymbcslc25

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

C.H. Romatowski
‪@chromatowski.bsky.social‬
Follow back
NIH recently found 1 in 22 ppl who’d had Covid developed ME/CFS. The “mild” form of that disease, as
@julialmv.bsky.social
’s graph shows, means losing capacity to do 50% of your daily activities. What would you give up? Friends? Time w/your kids? Could you cut work hours in half w/o losing yr job?

A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green. — C.H. Romatowski ‪@chromatowski.bsky.social‬ Follow back NIH recently found 1 in 22 ppl who’d had Covid developed ME/CFS. The “mild” form of that disease, as @julialmv.bsky.social ’s graph shows, means losing capacity to do 50% of your daily activities. What would you give up? Friends? Time w/your kids? Could you cut work hours in half w/o losing yr job? A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.

Tom Kindlon

@tomkindlon@disabled.social · 4 weeks ago

From:
https://bsky.app/profile/chromatowski.bsky.social/post/3liuymbcslc25

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

Mre. Dartigen [maker mode] boosted

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

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.

Jess Mahler and 1 other boosted

sickandsesame 🍉

@sickandsesame@disabled.social · last month

Does anyone know of resources/explainers for #MECFS in Haitian Creole?

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.

sickandsesame 🍉

@sickandsesame@disabled.social · last month

Does anyone know of resources/explainers for #MECFS in Haitian Creole?

Billy Smith and 2 others boosted

ContraindiKate

@ContraindiKate@zeroes.ca · last month

"As much as we are meant to be stewards of the land, we also must be stewards of each other. Of our community. Of those who cannot take care of themselves. Those who claim they care about accessibility must do the work to make socialization and gathering truly accessible and safe.”

Much gratitude to @brennan for this scientifically sound, well-researched article that cites its sources. Health journalists and science communicators take note: this is how it is done.

https://brennan.day/the-pandemic-never-ended-we-only-pretend-it-did/

#CovidIsNotOver #MaskUp #LongCOVID #MEcfs #PublicHealth

brennan.day

The Pandemic Never Ended. We Only Pretend it Did

Six years into COVID-19, the world has moved on while the virus continues to disable millions. An examination of the ongoing pandemic, long COVID, and our collective failure to prevent a mass disabling event.