Replies

maloki, 1 year ago to mecfs

Anyone got experience with doing physiotherapy for issues they have while also having ME/CFS? (I guess long covid can apply).

I don't mean physiotherapy for ME, I know the fucking pace stuff is bollocks, obviously.

But often with physiotherapy you need to keep building up your ability and strength, and I'm worried about how to balance it with not being supposed to go over certain levels of exertion!

@mecfs

liv, 2 months ago

@maloki yes, with some success. It's important to have a physiotherapist who has a basic understanding of what ME is, and isn't expecting to push/"motivate" you.

lia_pas, 8 months ago to mecfs

#SciArtSeptember Day 26: threads

This #MECFS #symptomatology #embroidery, paresthesia (foot) (2016) is heavy with threads, representing the extreme tingling I had in my feet at the time. #SciArt

liv, 7 months ago

@lia_pas this is beautiful. It's very meaningful to me to see art made about this experience. Thank you.

tomkindlon, 9 months ago to mecfs

Shared with permission

#Spoonie #Spoonielife #Spoonies @spoonies #chronicillness @chronicillness
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

liv, 9 months ago

@monsoonrains
I wish I had this wisdom last sunday ha ha ha. This is exactly what got me.

@spoonies @chronicillness @mecfs @tomkindlon

tomkindlon, 9 months ago to mecfs

🧵
Press release:
"A Better Understanding of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Could Benefit #LongCOVID Patients"

https://workjournal.org/news-blog/better-understanding-myalgic-encephalomyelitischronic-fatigue-syndrome-could-benefit-long

On the special edition of the journal WORK on #MEcfs & #postcovid

With quotes from Amy Mooney, an occupational therapist

@longcovid @mecfs #OT #OTalk #OccupationalTherapist #CFS #PwME #MyalgicE #CFSME #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers

1/

liv, 9 months ago

@robotistry

I don't understand this distinction. For me it's the symptoms which seem to limit my capacity for activity.

liv, 9 months ago

@robotistry

Thanks, that makes sense in the context of what you experience (for me I can want to be clean all I like, but if I push it too far I literally can't walk or move my arms, so would paradoxically end up dirtier).

If I'm understanding you correctly, improving baselines and tolerance is more important than specific symptoms?