This book is designed to explain to policy makers, healthcare professionals and friends and family what life with Myalgic Encephalitis is actually like. Buy it, share it and help us promote it to a wider audience.

In time for #MEAwarenessDay our book has been published. #MECFS kills and ruins lives. It's imperative that it is researched and treated. Understanding its complexities is key - let's spread that information. Please buy a copy, read and donate to your doctor. NB #MedSky amzn.eu/d/01FVLQJm

. @swastrosarah.bsky.social Wondered if you had seen this? Ella Copley only 20 Just grim

I just have to say this: Justice4me.uk is doing what nothing before has. Huge thanks to the bravery of lawyers and claimants holding government to account. The campaign understands this is a joint venture - and thank everyone involved for making it work as best it can.

🙏 @vladvexler.bsky.social this describes exactly the point being made by Justice4ME.uk. 7 days left to Judicial Review of (England and Wales) UK government Final Delivery Plan for ME. @ashleydaltonmp.bsky.social we want to help you get this. www.youtube.com/watch?v=_6KS...

& because NHS staff have had NO TRAINING. They revert to SOPs (Standard Operating Procedures) which is precisely how #ME px are put at risk by NHS provision. Everyone relies on A&E, whether privately insured or not. There is nowhere to go that is safe for anyone with #ME in the UK. Justice4ME.uk

I just donated, again. One week to go before Judicial Review deadline. Please support these brave families www.crowdjustice.com/case/justice...

@swastrosarah.bsky.social A screenshot from Twitter

@swastrosarah.bsky.social Wanted to send you a message about the crowd funder. Can I email you, or could send you a DM on Twitter? I can't use the DMs on here

I won't be able to see any DMs as haven't done all the age verification stuff (I'm not on here much anyway).

@swastrosarah.bsky.social Just to mention that the only sharing option on the crowd funder just now is to share on Facebook? But last night when I donated there were more options - Twitter, WhatsApp, email (I think) But these have vanished off now

Please donate to Justice For ME if you can and/or help spread the word; shorturl.at/x1Vyx #meawareness #Justice4ME @swastrosarah.bsky.social 💙💪

I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue. This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2

no paywall full story full story archive.is/2025.08.09-2...

expected to defend themselves against baseless accusations and provide the high level of nursing care demanded by very severe ME without support from somewhere. 4/4 @ashleydaltonmp.bsky.social @therestpolitics.bsky.social #ThereForME #ThePlanForME #HumanRightsAbuses #JusticeForME

England throughout the inquest but claimed to be off long term sick. Hill was told repeatedly Maeve was at risk of organisational neglect by Maeve and I before she was admitted to hospital. Very severe ME can kill if not properly managed. Hill chose to ignore it. Maeve died. Families cannot be 3/4

The Coroner (a DCC employee based at County Hall) refused to call the key witness from social services. Juliette Hill could have prevented Maeve's premature death if she had been guided by her statutory duty to protect the most vulnerable in society. Hill was under investigation by Social Work 2/4

Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt. Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them. 1/4

#pwME #LongCovid #ArtDirectors #PictureResearch #PictureEditors How to illustrate ME, formerly known as CFS, and Long COVID. Dim light level on model/subject. Make eye mask more visible. No light on bg. @meownersclub.bsky.social @paulaknight.bsky.social @franceyme.bsky.social

The Eye of the Migraine. A quick expressive use of soft pastels before I lay back down and allowed pain meds to do their thing. #art #drawing #pastels #migraine #chronicillness #chronicpain #MECFS #invisibleillness #chronicmigraine #selfportrait

www.bbc.com/news/article... @maryeilmicdom.bsky.social

Think I've been in bed for most of the last month. Not all of it, but most of it. This #ME life can be very small. Trying to be grateful for food (and that I can eat it) and Can watch the odd hour or 2 of telly some days

Great article by the great Hillary Johnson on the history of MECFS in the UK substack.com/@hillaryjohn...

The fate of ME in the UK has been a tragic saga since 1970, and a new development suggests the tide has yet to turn. Young women with severe ME are dying of medical neglect in England in the 21st Century. Why? hillaryjohnson.substack.com/p/in-sympath...

“They are among the most underserved patient communities in the UK. The sickest lie in darkened rooms, sometimes unable to move, speak or even swallow. Those living with the most extreme forms of ME describe it as not a life but a bare existence” #MEcfs #PwME

This is marvellous #Hope for #pwME that some things can just change/improve

I have to believe this will get better Having #Hope or being delusional ?

Fed up with crashing after doing a thing Days lost "recovering" Damn #ME and #PEM Just sick of it and needed a moan

"As a nurse I struggled to get my head around this. These people were severely ill. Yet they were being dismissed by the NHS, despite usually having been active and healthy prior to getting sick. Why would they not be believed?" Love this piece from Rebecca Logan 👇🏻 #ThereForME

This must be the best ME information video out there and it’s just 27 min long. It explains it all and it all makes sense.

The natural conclusion of claiming that people are imagining their physical illness is to claim that they are, in fact, *mentally* ill People with #LongCovid, #MECFS, etc have literally been placed in psychiatric wards rather than have their symptoms believed This is *still* happening

Wow. I’m in A&E (getting checks after some heart issues, hopefully nothing serious!) and the junior doctor asked me what “ME” on my chart meant. He had *never heard* of ME or MECFS or Myalgic Encephalomyelitis 😩 #NHSScotland - you need to train your doctors!

I’ve written about a tiny portion of Sophia’s daily existence to bring very severe ME out of the darkness and onto the radar of those in a position to instigate change 🙏

This is the realm of #VerySevereME Lying in a dark, quiet room, 24 hours a day, likely on feeding tubes. Rarely communicating with anyone. 100s of 1,000s will be spending their holidays like this around the world, likely more. Did you know?

Thinking about upcoming Dental Hygienist visit later this month. I struggle & push myself v hard to get to this. Only minutes from home. Hubby takes me But oral hygiene is so hard to do when I cant use or raise my arms without horrid ME symptoms kicking off, eg. breathless, tight chest, neck pain

Myalgic Encephalomyelitis: 1. Sufferers have lower quality-of-life than patients with heart failure, MS & end-stage renal disease. 2. Recovery is rare. 3. Treatment is often more harmful than helpful. 4. <1/3 of med schools include it in curriculum. 5. It's the NIH's least funded disease vs burden.

Ending the #GreatestMEdicalScandal is not a matter of medical acumen or scientific progress. It is not. It's a matter of mere acknowledgement. You just need to read ONE post to get it. 10 seconds. There is no excuse.

#MEcfs #longcovid

Very sad Another #pwME gone

It’s only a week until Christmas. The season can be very lonely for some of us, especially if you have a chronic illness, like #MECFS. For me it’s always a reminder of the things that I can’t do anymore, I can’t participate in the festivities and so on. 1/5

#PatientSafety please sign the call for Cochrane to withdraw its harmful endorsement of studies promoting exercise in post infection diseases www.change.org/p/cochrane-w.... Cochrane is a highly recommended resource to many post-graduate scholars in England. The next generation deserves better.

A general question about Bluesky Why are Likes not shown on some accounts?

It’s been 1/2 a decade since the start of SARS-Cov-2 & the onset of #LongCovid. I’ve had #MECFS for 4 decades. The state of affairs is not much better, with the exception of pts being able to share w/each other globally. Let that sink in! #millionsmissing

We need to address this ridiculous claim that a Covid infection harms immune systems leaving you vulnerable to other infections. If that was the case, then loads of people would be suffering from chest infections and 'the lurgy' after each Covid wave, and that's not wha... whoa... Wait a second. 😮

#LifeWriting A post about the challenges of an average day living with #MECFS and #POTS below.