@katybrc.bsky.socialUnless there's a dramatic change in how ME is understood & how pwME are treated & cared for by the NHS @england.nhs.uk very soon, we have every reason to call for a Public Enquiry & I hope that #pwME will have full support in taking this action.
@tomkindlon.bsky.social
@achronicvoice.com"I have severe #fatigue all day..I don’t feel any better after sleep or..pampering like a massage. Long ago, I’ve come to #accept my situation. Most days I do my best to accomplish something, even if it’s just #blogging.": buff.ly/hylajT5
by ehrmanlisa1
#ChronicFatigue #pwME #ChronicIllness
@nlizaki.bsky.socialSeriously, we get erased so fast, faster than our most vulnerable peers even
@tomkindlon.bsky.social(Melbourne, Australia)
Contribute to research hoping to improve the lives of adults with ME/CFS or Long COVID
@hollyl.bsky.socialLots of folks in #pwME #MyalgicEncephalomyelitis #MECFS #Spoonie community are in need.
Mutual aid matters. When able, I try to divide giving between mutual aid & non-profits doing the work to help folks so hopefully one day they will not need mutual aid!
Sharing a few folks in need.
@minetodo.bsky.socialAs you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe. Timely help is greatly needed! And sharing with others would be greatly appreciated. 💛
Thank you for your kindness and help!
#StandByMEcfs #StillSickStillFighting #pwME #MEcfs
gofund.me/edb78da50
@tomkindlon.bsky.social
@tomkindlon.bsky.social"I would be here if I could" travelling art installation by artist Alison Larkman
meassociation.org.uk/2026/09/i-wo...
Screenshot from latest Science for ME weekly update
@meactnet.bsky.socialThe ME/CFS Exchange Webinar Series launches next month.
1st webinar in the quarterly series will focus on post-acute infection symptoms.
October 8th from 1 pm to 3 pm ET via Zoom.
Registration required: https://ow.ly/2ABp50ZOPKP
Hosted by NINDS in partnership with MECFSnet.
@padpadpadpad.bsky.socialThis trip, some of the ways Soph and I connect became harder for her and rarer as a result. She also skipped half of the lunches so I saw her less. Everything gets taken from us eventully.
21/09/2026 Losing connection
@swastrosarah.bsky.socialI am not despairing. I am 'managing expectations' for #pwME #LongCovidME and their families. Legal action is limited and the neglect being experienced by too many needs more than the UK courts can achieve when UK government is so weak.
@michaelnobbs.bsky.socialI'm later than usual today posting today's #MorningView.
So lovely to see everything looking so green and to feel it wet underfoot after such a hot, dry summer.
Have a gentle day ❤️🐌
@katybrc.bsky.social@actionforme.bsky.social @meassociation.org.uk @meactionuk.bsky.social
the situation for #pwME is getting worse according to some who are directly involved in caring for the most severely affected, clearly far more needs to be done to protect patients immediately
@katybrc.bsky.socialWho is taking responsibility for ensuring that the very worst cases of abuse of #pwME by HCPs are being reported directly to the APPG on #ME & @tessamunt.bsky.social ❓
& who's taking responsibility for ensuring that all
NHS ME clinics are following the '21 @nicecomms.bsky.social g'lines for ME❓
@macala0902.bsky.social@macala0902.bsky.social@meactnet.bsky.socialLast #MedicaidMonday, we shared that CMS announced states may use a tier system to determine which Medicaid applicants qualify for the medical frailty exemption from new work requirements. Today, we are going to explain those tiers!
