#pwME #MyalgicEncephalomyelitis Many of us are still Alive amazingly after 30/40/50+ years of this hell And yet we still have the fight and human spirit to believe in a better life. Many unsurprisingly are choosing an early death due to the unbearable hell that is this horrendous disease.

Delighted to see this at iver £10,000 now! We are a brilliant and united community and I am so proud of us all. We deserve SO MUCH BETTER #Justice4ME www.crowdjustice.com/case/justice...

@stripylightcic.bsky.social also having trouble getting a response about said training too more about the nature of it… but, perhaps they’d be more enlightened with the #StripyLightbulb training instead? youtube.com/shorts/ERPYv...

Thank you to all who have given patient testimony 🙏 Healthcare still has A LONG way to go to meet patients needs. The form is still open 👇 forms.gle/jSCvZN39xAumjg…

A mass walkout of the UN General Assembly as Netanyahu prepares to speak.

Healthcare professionals: Would you treat a heart condition without training? Then why guess with ME/CFS? Stripy Lightbulb CIC offers a CPD-accredited course designed to help you support patients with dignity and honesty. 💬 Sign up. Make a difference. 📲 stripylightbulb.com

We are very happy to have signed this letter and fully support this Chronic Living Therapy campaign. chroniclivingtherapy.com/open-letter-... #pwME

The hero strikes again! 💪

Public Accountability Bill Gratitude to those who have stood together over years in this fight for us all. A step towards making the process of uncovering injustice fair… will it work for #pwME ? #JusticeforME

🙏Thank you to Chronic Living Therapy for writing this important open letter to BACP about their article about gaslighting that included controversial: 👉 mind-body therapies 👉 trauma based theory 👉 neuroplasticity LCA have co-signed 📃👇 chroniclivingtherapy.com/open-letter-...

Professor Catastrophe from @longcovidadvoc.com longcovidadvocacy.substack.com/p/professor-...

How quickly minds can jump to their own conclusions rather than rationally addressing the actual literal causational matter… What a fine example, thank you for sharing, both

39 F ING YEARS AGO! Our country is a disgrace for not finding research and coming up with a treatment by now … so many lives lost and decimated… reduced to crumbs of an existence no one should put up with. #StandUPForME

@swastrosarah.bsky.social A screenshot from Twitter

Morning watch as my body still fights #ViralPersistance from latest onslaught The brilliant #NancyKlimas wish you were here in UK #ViralPersistance #Reinfection #Virus #AugustWave 🦠🦠🦠🦠🦠🦠🦠🦠🦠🦠🦠 youtu.be/Gifd75_YNtI?... 🦠 🦠

Feeling a little less isolated and alone listening to this… podcasts.apple.com/gb/podcast/p...

It’s so emotional seeing all these donations and messages, giving me so much hope, knowing how many of us are out there and supporting each other from afar. Maybe when we’re all gone from this world we might all meet in heaven for those long overdue hugs and love ❤️

Link to donate for LEGAL ACTION : #pwME - Currently at £4754 11:15 31/08/2025 crowdjustice.com/case/justice... #Justice #JusticeForME #MyalgicEncephalomyelitis PLEASE SHARE IF YOU CARE! (If you haven’t already) Thank you 💙

I stand in solidarity with all those #pwME …caught in the horrific systematic failure and abuse… with L💙Ve xXx just supported this case! www.crowdjustice.com/case/justice... via @CrowdJustice

Just making my contribution to @starandshadow.bsky.social Accessibility Commitment Statement & so pleased I found an interview to add with Amy aka #LongCovid Rockstar this is so helpful! #Accessibility #Disability #Inclusion #SocialModel youtu.be/fMHR2hPb5TU?...

We repeat ad nauseam: "Brain fog" is brain damage. "Brain fog" is brain damage. "Brain fog" is brain damage. "Brain fog" is brain damage. "Brain fog" is brain damage. "Brain fog" is brain damage. "Brain fog" is brain damage. "Brain fog" is brain damage. "Brain fog" is brain damage.

Yes… an unreasonable action to a reasonable action For every action there is an unequal reaction - this disease #MyalgicEncephalomyelitis

This is really good

The complicity of those involved in a sick system designed to blame not only patients but their parents too. When will it end? Much L💙Ve to Sarah & we say her name: Maeve Boothby O’Neill 🪔🕯️💙✨💙 #SevereME #Blame #Justice #SystemicFailure #MyalgicEncephalomyelitis

Sean forgets not one medic supported the allegation. Social workers do have the answers. They are the Care Act (2014); the Equality Act (2010); the Mental Capacity Act (2005) and the Human Rights Act (1998). These provide the legislative framework for the protection of adult #pwME. #JusticeForME

A lot of them have relied on press releases from the Science Media Centre, one of the founders being our old friend Simon Wessely. He is determined to keep ME within the psychological realm, possibly to please the insurance companies, so he drops in as he did on Newsweek today.

I hope @actionforme.bsky.social applies for this award, even if they may be too small to be eligible. Publication of the #PlanForME and #DecodeME is the culmination of work they led on. The charity could then use these funds to lead on patient safety #pwME www.kingsfund.org.uk/insight-and-...

As we come to the end of Severe ME Day, I wish I had some powerful words that could bring you peace, hope, and encouragement. What I can do is remind you that your words have power. Your stories matter. #SevereMEday #UnitedForME #pwME

On this Severe ME Awareness Day, I present to you my newest exhibition: “In the Absence of Light”. 1/3 www.aquietstorm.me/in-the-absen... #MECFS #SevereME #SevereMEday #pwME #Photography

"My body is having an unreasonable reaction to a reasonable action." Yes! Thank you, Hollis for this reframe. The language we use matters. #SevereMEday #UnitedForME #SevereME #pwME

Did you know there's a big group of people who are too sick to access medical care, and too disabled to access disability supports? Sounds absurd but it's true. (We're too sick to protest, too.) ⚡️ #SevereME #pwME #pwLC #PatientRights #MillionsMissing #Disability #DisabilityJustice

“I don’t know how you cope” Nor do I tbh… we sort of just… do… but really don’t either. It’s shit most of the time. And you can’t know how you would until you’re actually experiencing it.

Note the date - 2024 but where is the messaging from UKHSA?

CW: Highlights of the 1999 BBC Panorama episode about ME/CFS Dr Michael Prendergast talks about his approach of distracting children from their illness. In a talk at a Scottish Hospital he talked about taking legal action if parents resisted psychiatric treatment.

The complicity of those involved in a sick system designed to blame not only patients but their parents too. When will it end? Much L💙Ve to Sarah & we say her name: Maeve Boothby O’Neill 🪔🕯️💙✨💙 #SevereME #Blame #Justice #SystemicFailure #MyalgicEncephalomyelitis www.thetimes.com/article/c5de...

x.com/JasonS1269/s... #PalliativeCare #SevereME

‘And hospitals? Terrifying. Medical professionals aren’t trained in severe ME, so they almost always do things that make the patient worse — prolonging the torture and lowering what little quality of life they have left’ @franceyme.bsky.social #SevereMEDay amandafrancey.medium.com/today-is-sev...

Anything to ignore the post viral fall out unfortunately… mental health and anxiety still the go-to Complete ignorance or gagging orders from govt perhaps #PostViral

Thanks for sharing Adam I was looking for this! As there was no call to action on the segment, if you want to purchase Kara Jane’s album you can find links here: karajanesings.com

This is absolutely awful to read about. Our hearts go out to this as it affects our whole community… just as the @decodemestudy.bsky.social result comes out … maybe there can be a genetic test available soon to provide proof for individuals in this dire situation 💙

BBC Scotland full segment on the DecodeME study results which aired yesterday. Features Professor Chris Ponting and patient Amanda Stephenson on living without specialist care for MECFS in Scotland. (6 minutes) youtu.be/Oic0wtq5xNc?...

It will go higher. Sign up at yourparty.uk

It astounds me that over all this time,post-viral illness & disability has been recorded in terms of geographical nature rather than root causation such as viral pathogens. Why didn't they listen to Ramsey then? Why are they still not listening now? Ignorance is bliss for many #PostViral #Virus

"We learnt from researchers, scientists and doctors with lived experience, how in a wellbeing economy, we would choose prevention including clean indoor air and rolling out HEPA filters in every school, hospital, office, shop, restaurant and home to reduce COVID sickness by over 80%."

Want to reduce your risk of diabetes? Avoiding COVID could play a bigger role than you think. Even a “mild” infection can interfere with insulin production and glucose regulation—raising your risk for diabetes down the line. Your metabolic health matters. Protect it.

Over time, repeated infections increase your risk of developing chronic conditions like heart disease, diabetes, dementia, and more. Long-term health matters. Don’t brush off COVID as “just a cold.”

Because I am on holiday on 8/8, I'll schedule a post to mark the occasion this year (I'll be enjoying a 2 week digital detox 🥳). Severe M.E is always on my radar and I'm sending love to all affected by the severe end of our spectrum (#pwME and families). 1 day to go 🛥🛟⚓️

Pass it on ✨

If this doesn't make you smile?? Then I don't know what will... ❤️