Latest posts tagged with #severeME on Bluesky
A super hard trip again. Soph's gradual worsening means the risk of hospital looms larger than ever. And yet we know this would make her worse.
06/04/2026 A relentless spiral.
#pwME #severeME #MECFS
padpadpadpad.netlify.app/posts/caring....
Teal text reading “Bundle 3” above photos of the prizes listed in the caption Bundle 3: Drawn poorly zine Collage commission & 3 prints (either monochrome or collage) from Burn your bones Libro.fm token from Fran Leftbians necklace of choice
White text on a pink background reading “About Nevra: Nevra’s a community organiser with Severe M.E. in Karachi, Pakistan, & a major advocate for people with M.E., particularly in the Global South. Her health is becoming more & more critical, & she’s been experiencing paralysis, anaphylaxis, & multiple skin infections among many other symptoms. She desperately needs your support to prevent her having to return to a DV situation. All funds raised will go towards safe housing, carers, & treatment for our dear friend.”
All funds raised will go towards safe housing, treatments, & carers for our dear friend 💜
#SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing #MutualAid
& regardless of any short term solutions, I desperately need ppl to share my GoFundMe as it’s taken 18+ months to reach 33% of the goal.
If we reach it soon then I won’t need more short term housing! 🙏
(Every move causes my health to deteriorate 💔)
#SevereME #MAboost #MutualAid #HelpFollsLive #pnw
Yup. 71 yrs later &we’re still diagnosed w/ modern versions of “hysteria” (severe somatic pain disorder)😒
I wrote this in 2016 (& tried to warn ppl online not to overexert in spring 2020 when I read their laundry list of mysterious symptoms “after” Covid💔)
#pwME #SevereME #LongCovid #chronicillness
Aside from cost, it’s unsustainable to stay in my motel room (&I can’t move place to place w/ #SevereME)…
The lady next door since Jan is dying of liver failure & coughing up a lung all hours of day/night. +Her adult son SCREAMS at her &throws things at the wall (&watches action movies FULL BLAST)
Donations for Nevra's hospital bills, rent, and mold remediation have stalled. Please consider donating, liking, commenting, and sharing
paypal.me/SaveLizNevra
gofundme.com/f/save-nevra
#SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing #MutualAid
Endorsement of All That Is Made by Keren Dibbens-Wyatt "I love reading Keren Dibbens-Wyatt's work" - Richard Rohr
Are you interested in #contemplative #prayer ? In my book "All That Is Made" you will find out what it is, why it helps those of us who feel small, sick or confined, and why, like #JulianofNorwich I find it deeply comforting. #spoonies #SevereME #chronicillness #ME #faith see pinned post
Update (Mar 16) from Team Karen Gordon.
Karen has now been in Conquest hospital in East Sussex for 2 years and 2 months...
#SevereME
www.change.org/p/save-karen...
"Our study joins a growing body of work by scholars and patient advocates calling for recognition, respect, and reinvestment in the lives of those with severe ME/CFS These individuals are not invisible by choice; they are rendered invisible by systems that refuse to acknowledge their existence and suffering. Listening to their voices is a moral imperative, a research necessity, and a first step toward justice." RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942 Nezamdoust and Ruel. Social Science & Medicine (2026)
ME Research UK:
A team of researchers have published a study investigating lived experiences of people with ME/CFS using data from posts made on social media.
Read more: tinyurl.com/mj2p8c24
#mecfs #cfs #pwme #severeme #severemecfs
BBC Wales Our son loved the outdoors – invisible illness means he now can't walk or talk The article includes several people with ME/CFS in Wales where NHS services are patchy. The Welsh Government is quoted: "Proposals for an all‑Wales specialist, an expert group and national standards are being actively considered as part of the service's ongoing development." Dr Charles Shepherd and several people with ME/CFS took part in a BBC Radio Wales phone-in. Duration 26 minutes.
BBC Wales covers ME/CFS with text and radio pieces
www.bbc.com/news/article...
www.youtube.com/watch?v=r1S2...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME #SevereME #SevereMECFS
UK DHSC delays commissioning of services for the most severely affected The Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS. This is said to be due to wider organisational changes within the NHS. #ThereForME have produced a PDF briefing on the topic. PDF | Thread
The UK Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS
ugc.production.linktr.ee/8dd80874-c0a...
Screenshot from Science for ME update
#MEcfs #PwME #SevereME @thereforme.bsky.social
#PACETrial #AleemMathees #FoI #FoIVictory #landmarkpaper #gradedexercise #CBT #mecfs #MyalgicEncephalomyelitis #SevereME
@tomkindlon.bsky.social
#NESVOID,
#mecfs, #cfs, #MEScience, #ME/CFS, #pwME, #MEeps, #MEAwareness, #PostExertionalMalaise, #MyalgicE, #SevereME,
#MillionsMissin
How can they use that argument for one, but not the other?
Why would they pause consideration of one service, while continuing to develop another, if the same factors (NHSE/ICB reorganisation) are likely to effect both?
It makes no sense.
#MEDeliveryPlan #SevereME
Nevra is currently very unwell and has not been able to use her phone for the past 5 days. She has been dealing with severe faecal impaction for 4 days, and we are awaiting guidance from her doctor. She is experiencing extreme reactions to mould, chemicals, and poor air quality, especially due to hotel renovations and recent thunderstorms due to climate change brought upon by w*rs in her region. March goals: 1. $1343 USD/£1002 for rent 2. $68 USD/£50 for mould fogging machine 3. £2500 USD/£1871 for vascular compression Or 4. $267/£200 for food/meds/IV 3) $667 USD/£500 to pay back surgery loans Rent and deposit donation link: PayPal.me/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
Save Nevra - March update Nevra is struggling to breathe both indoors and outdoors and is relying heavily on a nebuliser (which may also need a new filter). Her current environment is unsafe... there is visible mould above her bed, but moving to the couch causes significant pain. She has likely not slept for 2 days, is in severe pain, and has lost more weight. She currently has no access to IV support. Nevra can only receive messages through her mother's phone at the moment. Rent and deposit donation link: PayPal.com/paypalme/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
We are monitoring Nevra's emails closely for doctor responses and may need to adjust appointments and care urgently. She misses everyone deeply Urgently need: Nevra is trying to secure a mould-free apartment but needs funds for the deposit. This is critical for her survival and stability. Please continue sharing and supporting her fundraiser if you can. Please share, comment, like & donate if you can to keep her housed and alive! Rent and deposit donation link: PayPal.com/paypalme/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
🧡💛 Save Nevra - March Update 💛🧡
Please donate and share this post!
Rent and deposit donation link:
PayPal.me/SaveLizNevra
GoFundMe link for food & healthcare costs:
GoFundMe.com/f/save-nevra
#SaveLizNevra #MECFS #SevereME #POTS MillionsMissing
The 126th edition of the Research Digest brings together clinical, biological, and lived-experience perspectives to strengthen our understanding of long COVID and its overlap with ME/CFS.
emerge.org.au/researchdige...
#MEcfs #LongCovid #PwME #SevereME
Update from Tessa Munt MP.
#MEDeliveryPlan #SevereME
bsky.app/profile/tess...
@rthonwesstreeting.bsky.social
Coroners’ prevention of future death notices should not be ignored
#pwME should not starve to death or be wrongly institutionalised because no NHS specialist services exist for #severeME
Successive governments have known for decades
#JusticeForME
#HumanRightsAbuse
Please, please help people with #severeME – we have been dying regularly for decades and no meaningful funding or commitment has been forthcoming. I hope you’ll work with @tessamunt.bsky.social and the APPGs to help millions of us with ME and LC not just avoid death, but avoid years of living death.
If you have #SevereME, like me, you are valuable however and whenever you can show up
I’ve hosted monthly support group meetings for Iowa #dysautonomia and #EDS patients for years, it takes a lot, can’t always do it, but everyone is grateful for these spaces no one else provides
10 years & counting of being housebound with #severeME and the @labouruk.bsky.social cause another delay for any kind of progression in support for pwME. People with bunions have better treatment plans than pwME & pwLC🤨
#mecfs #myalgicEncephalomyelitis #LongCovid #NHS #ChronicIllness
That's *seriously* bad form of DHSC not to make a formal announcement, given the number of questions that have been asked about this in parliament. 😡
#MEDeliveryPlan #SevereME
eBay profile info: island_art 100% positive feedback (293) 10 followers 50 items sold
If you don’t use Poshmark ⬆️ you can find the same items in my eBay shop:
ebay.com/usr/island_art
Your purchase will help a profoundly disabled Latina artist & disabled cat who are both currently homeless! 🙏
#CommunityCare #eBay #artist #DisabledLife #fundraiser #SevereME #HelpFolksLive #Autistic 🇵🇷
If you’re UK-based and have the spoons, please ask your MP to attend the debate on Ehlers-Danlos syndromes and craniocervical instability (CCI)
Easy fill in the blank template, as well as MP postcode search + send here:
edsuk.eaction.org.uk/makeitmatter
#EDS #EhlersDanlos #CCI #MEcfs #SevereME
As someone who’s had #SevereME for over a decade (& mild/moderate ME since the late 1990s), this is heartbreaking on so many levels.
These kids will never have a chance at really living (unless some miracle cure for #LongCovid comes along) 💔
UK NHS England releases e-learning module “Supporting people with severe ME/CFS” NHS England have released a modified version of their materials aimed at helping healthcare professionals understand how to support people living with Severe or Very Severe ME/CFS. Unlike the previous version which was restricted to those with a qualifying work email address this module is available to view by anyone who registers for a general user account.
UK NHS England releases e-learning module “Supporting people with severe ME/CFS”
learninghub.nhs.uk/Resource/793...
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
George and his ME/CFS 3 panel cartoon 1st panel: George is lying in bed. A doctor says: "I'm sorry, but it's obvious you're ME/CFS is now severe…" 2nd panel: Doctor: "the good news is you are likely to die any time soon" 3rd panel: Doctor: "the bad news is you are unlikely to die any time soon"
15/
More from a series of comic strips about life as a person with ME/CFS.
"George and His ME/CFS"
🎨Rick Menard
This is the last one.
#MEcfs #SevereME
