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#pwme

31 posts12 participants3 posts today
Public
Rebecca Esther (they/she)

#Spoonies: is it possible to sit with your legs crossed ("criss cross applesauce") on a rollator?

My OT has never heard that question before and said we can test the biggest rollator she can find next time I see her, but she doubts it.

I use a cane now (have for 10 years) and want the rollator so I can sit when my POTS flares.

Thank you for your input and expertise, friends! 💙🫂

#POTS#MobilityAid#pwME
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
Tom Kindlon

Trial By Error: My Visits with Alem Matthees, 2025
virology.ws/2025/04/14/trial-b

Explains the heroic work Alem did, the effect on the #MECFS medical scene of his work but also the health effects Alem suffered as a result, as he now tragically lives with #verysevereME. 😢

This could have been prevented if the PACE trial authors had released the data! 😡

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

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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