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"Basically, your body has needs.
Your life has demands.
They don’t always shake hands.
So instead of perfection, think about harm reduction.
Not: How do I avoid overdoing it ever again?
But: How do I soften the impact when life doesn’t give me a choice?"
"Pacing in the Real World"
Another blogpost I liked a lot by this OT who specialises in ME/CFS & long Covid.
Contains lots of practical tips. As she says, an emphasis is harm reduction rather than perfection
https://onelifelivedwell.substack.com/p/pacing-in-the-real-world
#MEcfs #LongCovid #CFS #PwME #Pacing #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid
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"Basically, your body has needs.
Your life has demands.
They don’t always shake hands.
So instead of perfection, think about harm reduction.
Not: How do I avoid overdoing it ever again?
But: How do I soften the impact when life doesn’t give me a choice?"
Diary comics thread for hourly comics day ✏️ intro/9am
[read together in one place here https://www.patreon.com/posts/150040198 ]
#hourlycomicday #MEcfs #pwME #ChronicIllness
Diary comics thread for hourly comics day ✏️ intro/9am
[read together in one place here https://www.patreon.com/posts/150040198 ]
#hourlycomicday #MEcfs #pwME #ChronicIllness
"Pacing in the Real World"
Another blogpost I liked a lot by this OT who specialises in ME/CFS & long Covid.
Contains lots of practical tips. As she says, an emphasis is harm reduction rather than perfection
https://onelifelivedwell.substack.com/p/pacing-in-the-real-world
#MEcfs #LongCovid #CFS #PwME #Pacing #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid
🧵
A sympathetic & knowledgeable OT who specialises in #longCovid & ME/CFS reflects on the lessons from how the long Covid community came together and how it shows patient knowledge & expertise from lived experience is important in many ways.
She also highlights how the pandemic highlighted gaps in care for #MECFS, #POTS & related conditions
https://onelifelivedwell.substack.com/p/long-covid-began-with-somethings
#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#PASC #PwLC #postcovid #postcovid19 @pots
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🧵
A sympathetic & knowledgeable OT who specialises in #longCovid & ME/CFS reflects on the lessons from how the long Covid community came together and how it shows patient knowledge & expertise from lived experience is important in many ways.
She also highlights how the pandemic highlighted gaps in care for #MECFS, #POTS & related conditions
https://onelifelivedwell.substack.com/p/long-covid-began-with-somethings
#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#PASC #PwLC #postcovid #postcovid19 @pots
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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
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
Nieuwe podcast met het verhaal van LongCovid patient en huisarts Jojanneke Kant.
Met de uitspraak: mensen hebben niet door dat er nog steeds mensen postcovid krijgen. Het gevoel is dat het niet meer bestaat. De kans is 1:12 dat je na een besmetting krijgt.
Gez Medinger is een lotgenoot die in de wetenschap duikt en het in normale mensentaal kan uitleggen. Ben op zijn YouTube kanaal geabonneerd en vandaag gaat het over PEM (PENE - PESE)
https://youtu.be/0LtQ5_hZ8iw
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
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/
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/
🧵
"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
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🧵
"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
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