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#pwme

13 posts10 participants0 posts today
Public
Tom Kindlon

Reporting on ME, ME/CFS, Long Covid, & so on... crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months @david

crowdfund.berkeley.edu/project

Screenshot is from the latest Science for ME weekly update

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

Trial by Error: Reporting on ME, ME/CFS, Long Covid, & so on... New crowdfund campaign via Berkeley University to secure David Tuller's important work and position for further 6 months. The aim is to raise $68,000 by May 5th. 10 years ago Tuller launched Trial By Error in 2015 and his work since then with reporting, investigation, analysis, letters and much more has been invaluable for moving matters forwards.
Public *
ahimsa

I missed this back when it was first published:

"The hermeneutical injustice of ME"

thereforme.uk/p/the-hermeneuti

When Words Fail

"For me, one of the hardest parts of living with ME was the absence of a clear framework for describing and understanding it. The way I had once made sense of my body no longer applied …

I had no reference points for what I was experiencing."

@mecfs

"Hermeneutical injustice [is] when someone is unable to understand or express an important aspect of their own experience because there is a gap in the shared tools of social interpretation." - Ella Barnard, #ThereForME
#MEcfs#PwME#ThereForME
Public
Will 🏳️‍🌈

It bites being an overachiever!

I was preparing the house all day yesterday, consolidating furniture into as few spaces as possible for the movers for my soon-to-be-ex for today. And then lots and lots of sweeping. Before that, I was actively moving lots of stuff from the car to his new apartment, on two consecutive days.

I managed to invoke what I think is a combo fibromyalgia flare-up and ME/CFS crash all in one.

I don't regret it, but one's body sure has a way of reasserting itself! 😁

#Fibromyalgia#ChronicPain#MECFS
Public
Andrew Gifford

From ThereForME:

"If you're in England, Wales, or Northern Ireland, living (or caring for someone) with Long Covid or ME/CFS and receiving PIP, UC, or ESA, we want to hear from you."

docs.google.com/forms/d/e/1FAI

Google DocsThe new proposed welfare reforms: understanding the impact on people with Long Covid and ME/CFSThis survey is for individuals with Long Covid (LC) or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) who are receiving benefits affected by the government's proposed reforms. If the person is too unwell to complete the survey, a carer, if possible, is welcome to fill it out on their behalf. It is intended for residents of England, Northern Ireland and Wales only. Scotland has a different benefits system and requires a different survey. This survey was made in collaboration with Long Covid Support, Action for ME, ME Local Network and #ThereForME to understand the impact of the government’s proposed disability welfare reforms. Your responses will support our advocacy to the government for benefits that better support people living with these conditions. The survey has 31 questions, but not all may apply to you. We know this is a lot for people with ME/CFS and Long Covid. Each one has been carefully designed to give us meaningful data that strengthens our advocacy. Please take as much time as you need. Every question in this survey is completely optional, meaning you don't have to respond to specific questions if you don't want to. If you're signed into a Google account, your progress will be saved for 30 days so you can return to it later. By completing the survey, you are giving your consent for your anonymised responses to be used in advocacy and research communications by the following organisations: Long Covid Support, Action for ME, ME Local Network and #ThereForME. No identifying information will be shared, and all data will be handled in line with data protection best practices. Privacy Policy - Action for ME Privacy Policy - Long Covid Support If you're able to complete the survey by 24th April 2025, your responses can be included in a briefing we’re preparing for MPs. The final deadline for completing the survey is 30th May 2025, which allows us time to analyse all responses and incorporate the insights into our organisational submission to the Green Paper consultation. Regretfully, we are not able to provide and/or receive paper copies of this survey, due to the timescales involved. Thank you so much for your time and energy. This survey has been endorsed by the following organisations: Bury and Bolton ME/CFS & Fibromyalgia Support Group, ForwardME, Hope 4 ME Fibro Northern Ireland, Keyworker Petition U.K., Long Covid Advocacy, Long Covid Kids, Long Covid SOS, MERC PAG, Physios for ME and Supporting Healthcare Heroes UK, #MEActionUK, 25% ME Group.
#pwME#MECFS#LongCovid
Public
Will 🏳️‍🌈

My body pain is rather curious. I'm not sure how long it's been going on at this constant level, but I think far shorter than the time I've been diagnosed with fibromyalgia or ME/CFS.

No matter how much I stretch, take hot showers, or use heating pads to leech the pain away, it doesn't reduce even slightly. It's like I'm trying to escape my body, but the skin refuses.

And the much-vaunted "just exercise to get healthier" is as unattainable as anything I can imagine.

Relatable?

#ChronicPain#Fibromyalgia#MECFS
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