LightNews — News, ranked by scholars

@foreigner.northsky.social

#mutualaid
#bipocma
#helpfolkslive
#disabilitycrowdfund
#dontletmedie
#fuckinhelp

October 26, 2026 at 10:24 PM

traceydooley.bsky.social

@traceydooley.bsky.social

YET MORE stress & no answers to our questions from East Sussex NHS; & update on Karen Gordon’s Hospital Stay chng.it/k6752MwWTg via #UKChange

#ME #MECFS #LongCovid #SevereME #VerySevereME #MillionsMissing #MEAction #TeachMETreatME #GreatestMEdicalScandal #ThereForME #DontLetMEDie #MEawareness

More stress & no answers to our questions from East Sussex NHS; & update on Karen’s Hospital Stay

Hello Everyone Karen has now been in Conquest hospital for more than 1 year and 5 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital. Michael is continuing to stay with Kare...

chng.it

June 4, 2025 at 4:19 PM

wusps

@wispywoods64.bsky.social

if i dont buy bullshit ill die #dontletmedie

June 5, 2026 at 5:15 PM

Something Chronic

@somethingchronic.bsky.social

It’s really bothering me that it’s 6.30pm on the last day of #MEawarenessMonth and two of the UK’s biggest ME charities haven’t bothered to post anything today.

ME Association posted 2 days ago.
Action for ME posed 9 days ago.

#SevereME
#JusticeForME
#DontLetMEdie

May 31, 2026 at 5:36 PM

Something Chronic

@somethingchronic.bsky.social

Can you help in any way please:
@actionforme.bsky.social
@meassociation.org.uk
@thereforme.bsky.social
?

#DontletMEdie #SevereME #JusticeForME #UnitedForME

Liz Nevra A. @nlizaki.bsky.social · Oct 24

1/N Nevra’s d3ath is preventable.

If the right people take action — by recognising ME/CFS, allowing safe home visits, and coordinating specialist care — she can survive.

What’s needed now isn’t sympathy. It’s intervention.

#MEcfs #pwME #MillionsMissing

October 25, 2025 at 11:32 PM

Something Chronic

@somethingchronic.bsky.social

💙💙
Two hearts for the two people who I’ve heard about today that have died from ME.

So many don’t realise that ME can be fatal.

RIP

#ME/CFS #SevereME #DontLetMEdie

valebodi.bsky.social @valebodi.bsky.social · Jul 20

In memory of Judith Schossböck. Judith was a scientist, artist, activist and active member of the Burning Man community. She died in December 2024 with #ME/CFS and a combination of insidious chronic diseases.
youtube.com/watch?v=3FBW...
@judyintheskynet.bsky.social #pwME 💙🕯️💙

Judy in the Sky – a song by Johanna Mittermaier

YouTube video by Black Ferk Studio

youtube.com

July 20, 2025 at 8:23 PM

Something Chronic

@somethingchronic.bsky.social

#ME #pwME #MECFS #SevereME #VerySevereME #LongCovid #EndMEcfs #MEawareness #DisabilitySOS #MEAction #MillionsMissing #TeachMETreatME #StillTheSaME #StandByMEcfs #StillSickStillFighting #NotRecovered #GreatestMEdicalScandal #JohnVsJonVsME #ThereForME #BerlinBuyers #IACC #MEKills #DontLetMEDie

June 8, 2025 at 3:51 AM

Something Chronic

@somethingchronic.bsky.social

Please sign to help Karen Gordon, a very severe ME patient who needs our help! 💙

www.change.org/p/save-karen...

#ME #MECFS #LongCovid #SevereME #VerySevereME #MillionsMissing #MEAction #TeachMETreatME #GreatestMEdicalScandal #JohnVsJonVsME #ThereForME #DontLetMEDie #MEawareness #MEawarenessmonth

Sign the Petition

Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.

www.change.org

May 21, 2025 at 1:52 PM

Something Chronic

@somethingchronic.bsky.social

🚨 TW 🚨

I used to hike miles. Now my legs look like this due to #SevereME. I lost over 20% of my body weight in the last year despite eating 1000kcals more than I use daily. I fear I’m quite literally wasting away.

#May12 #WorldMEDay #MillionsMissing #MECFS #LongCovid #DontLetMEDie #TeachMETreatME

Picture of a woman with severe ME whose legs are extremely bony and skinny due to muscle wasting

May 12, 2025 at 8:48 PM

ME Foggy Dog

@mefoggydog.bsky.social

Enough.

Please read and help to get as many eyes on this as possible 🙏

thecanary.co/editorial/2024

#mecfs #pwME #DontLetMeDie #NHSProtocol4SevereME

Editorial Archives

Editorial articles from Canary

thecanary.co

February 24, 2024 at 10:18 AM

ME Foggy Dog

@mefoggydog.bsky.social

It's #ValentinesDay 😍

It's also #MEAwarenessHour at 8pm gmt.

Posting all things #NHSProtocol4SevereMENow #DontLetMEDie #ShowSevereMESomeLove

See you then, it's a date! 🥰

#pwME

February 14, 2024 at 7:49 AM

ME Foggy Dog

@mefoggydog.bsky.social

'Outside the scope'
'This is not a public inquiry'.

Ok.

So we ask AGAIN for an inquiry. #DontLetMEDie

Sarah and Sean 🫂
#RIPMaeve 💙

#PwME #SevereME

November 27, 2023 at 3:30 PM

emily fraser 🌿🐌✨

@emilyesfraser.bsky.social

Scroll to the bottom for an email template with key points. There is a precedent of UK hospitals refusing to follow expert guidance on ME & torturing, starving, & even killing young women with severe ME like Savannah

#SaveSavannah #SevereME #DontLetMEDie

reciprocalone.bsky.social @reciprocalone.bsky.social · Jan 23

Severe ME patient Savannah is being denied lifesaving fluids and medication at the Queen Elizabeth Hospital in London. Please email the chief executive at ben.travis@nhs.net #saveSavannah

www.thecanary.co/uk/analysis/...

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids

Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk

www.thecanary.co

January 23, 2026 at 5:42 PM

emily fraser 🌿🐌✨

@emilyesfraser.bsky.social

#MutualAid
#DontLetMEDie

13/

White text over black:

Donate & share mutual aid fundraisers for people with M.E., Long Covid, & other infection associated chronic conditions. Now more than ever, mutual aid is a necessary, lifesaving, revolutionary practice. If you’re privileged enough to have disposable income, make giving to mutual aid a regular commitment. If you can’t donate, share & interact with posts to boost engagement!

May 11, 2025 at 7:44 PM

María Richardson

@diatoma.bsky.social

Follow @meactnet.bsky.social @thesicktimes.bsky.social @openmedf.bsky.social @polybiorf.bsky.social and co. ❤️and comment, share, amplify
#MillionsMissing #WorldMEDay #MEAwareness #MECFS #DisabilitySOS #pwME #GreatestMEdicalScandal #DontLetMEDie #SevereME #MutualAid #LongCovid #IACC

(4/4)

May 11, 2025 at 12:05 AM

María Richardson

@diatoma.bsky.social

Friends, please follow @meactnet.bsky.social and other #MyalgicEncephalomyelitis #MECFS #LongCovid #IACC orgs and join in #WorldMEDay #MillionsMissing actions in May and beyond ❤️.

#GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME

On a light red background, text that reads: "When I talk about social abandonment in M.E., I don’t mean the loss of contact and support from many friends and relatives (though that is also a part of the story, as with perhaps all chronic illnesses and even acute ones.)

I mean that Myalgic Encephalomyelitis is a devastating and neglected neuroimmune illness with no FDA-approved treatments for which almost nobody but the most affected advocate for progress in research and care. People with M.E. don’t die quickly, but M.E. destroys lives, destroys the possibility of engaging with the world, and eventually #MEkills.

Will you join MEAction, World ME Alliance, and other M.E. and IACC orgs in their calls for action on
May 12, World M.E. Day?

The #MillionsMissing need healthy allies to recognize this is a global health and human rights scandal and join the fight for change."

April 13, 2025 at 6:38 PM

María Richardson

@diatoma.bsky.social

When we talk about #GreatestMEdicalScandal, this is an important and horrific part of it @hankgreen.bsky.social @johngreensbluesky.bsky.social. Echoes of 19th century hysteria treatment for multiple sclerosis or epilepsy. It leads to further worsening/suffering and death. #ExposeMENow #DontLetMEDie

Alexis Gilbert @alexisme.bsky.social · Jan 20

Please sign and share the petition to stop a patient with Very Severe ME being forced to take inappropriate antipsychotic meds and detained because they can’t get out of bed.

bit.ly/linepetition

A screenshot of the first page of the petition showing Line, a 26-year-old white woman

A screenshot of the text of this first page of the petition. Very Severe ME patient Line aged 26 from Denmark (@nebulow on IG) has appealed to the international ME and Long Covid community to help prevent her being involuntarily removed to a psychiatric hospital from the nursing home she has been living in for the past 10 months.
The core values page on their website states that "It is crucial that the residents are met
with:
Respect
Dignity
Empathy
Realistic Expectations"
Please sign the petition below in support of our letter asking them to recognise her energy-limiting chronic illness as a debilitating biological disease and to spare her suffering further deterioration or even death

January 20, 2025 at 7:13 PM

Woozle

@wiredwoozle.bsky.social

Anna has Very Severe ME (myalgic encephalomyelitis). She may not always be able to respond to messages, but she is a beloved member of the online ME community. 💞

Abled allies, we need your help to help her escape #DV ❗
#LongCovidAwareness
#DontLetMEDie

March 15, 2025 at 5:18 PM

Fiona Wood

@mewarrior1.bsky.social

Vlog #4 E028 hypoallergenic oral feed for MCAS. ⬇️

x.com/fionangreg/s...

Had a bad couple of days.

Anyone seen Dr Aziz in London?

thephysiciansclinic.co.uk/phisician/prof…#SevereMEM#MCASA#ThereForMEM#DontLetMEDiei#SaveCarlaandKarenen

https://thephysiciansclinic.co.uk/phisician/prof…

November 29, 2024 at 8:56 AM

Fiona Wood

@mewarrior1.bsky.social

1/

Vlog #3 E028 hypoallergenic oral feed for MCAS.
The trial continues.
Apologies for the flared nostrils! #inherited

Sorry but video too long so please watch on X ☹️

x.com/fionangreg/s...

#SevereME #MCAS #ThereForME
#DontLetMEDie #SaveCarlaandKaren

x.com

November 24, 2024 at 4:25 PM