Nearly two years later, Karen is still in hospital. Read more about her case and sign the petition below. The family’s latest update was shared two months ago. Petition www.change.org/p/save-karen... Full video Sky News 2024 (20 mins) youtu.be/FX6Fk9-WSmo?...

Sign the Petition

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

change.org

“ME is a very dangerous & debilitating condition.” Karen Gordon’s mum, explains why travelling 100 miles for an assessment could cause a serious relapse. Karen needs tube feeding & would be better off at home but is effectively trapped in hospital. #MECFS #SevereMEAwarenessWeek

Update from Dutch researcher Anouk Slaghekke in the AMS 9th annual research meeting abstract book (p. 12). This small study suggests that in #pwME and post CoV ME, the capillaries in the muscles do not deliver oxygen efficiently, even though heart and lung function are normal. 1

"Covid has just ruined my life and the lives of so many other children" Samir, 16, has seen little improvement 5 years after developing #LongCovid. He is still disabled, housebound, and wheelchair-bound. The only medical help has been private because there was nothing on the NHS.

*Extremely* disappointing that they've also taken down their earlier report on UK anti-trans lobbying, 'Like a Snowball', too, which didn't even use the term 'anti-rights' except in reference to their earlier work. For anyone who didn't grab a copy while they could: www.dropbox.com/scl/fi/4ylud...

Lee Hurley@hleehurley.com · 5d ago

Amnesty have issued an apology to JK Rowling and the rest. Adjust your expectations, and donations, accordingly www.amnesty.org.uk/latest/an-ap...

I'm so, so exhausted by all of the ignorant backlash against stuff like this. Neurodivergence, disability, gender, dysphoria. Endless headlines and no-think pieces based on refusal to understand the basics, of what people are saying. The Channel 4 complaints page: www.channel4.com/4viewers/con...

Scott Bryan@scottygb.bsky.social · last wk.

Channel 4 has announced documentary “The Great ADHD Myth?” It “seeks to determine whether ADHD is a genuine neurodevelopmental disorder, or a social construct.”

"This is not rare. This is one of life's worst diseases." Professor Chris Ponting speaking about harm from graded exercise therapy and hospital care, and how patients have been let down for decades because #MECFS was wrongly thought to be psychological. (Clip from 2024)

Agreed. One of my fav quotes:

Our criteria for success are disastrously skewed. In my view, a successful person is one who does more good than harm, on any scale. On this measure, most billionaires are massive failures, while humble folk in my neighbourhood who look after other people are highly successful.

"There’s often a deep stoicism in those of us who have known lengthy illness: a quiet acceptance of bodily suffering that conceals its true burden. For our own survival, we’ve learnt to normalise feeling unwell. We measure our symptoms not against the healthy body, but against its worst potential."

Naomi Whittingham@naomiwhitt.bsky.social · 6d ago

I realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.

The neurological issues we already knew about in Myalgic Encephalomyelitis were pretty bad. Add this to the mix and it's no wonder people with ME have so many cognitive issues. We need more neurologists to understand the reality and take patients seriously. #medsky #neurosky

Science X / Phys.org@sciencex.bsky.social · last mo.

First MRI evidence in ME/CFS points to impaired brain waste clearance. The sleep-linked disruption may help explain brain fog. doi.org/hb9gsf

4/9 It's heavy to carry the burden of this story, of so much ignored human suffering, by ourselves. Can you help us reach more people with your incredible science and social science communication @hankgreen.bsky.social @johngreensbluesky.bsky.social? #GreatestMEdicalScandal 🧵

Last Tuesday, when the Hillsborough Bill finally became law, was one of those days in Parliament when I felt particularly proud to be your MP. Public officials lied repeatedly to the Hillsborough families. People in Somerset have told me about dishonesty and cover ups The unfairness drives me wild

👇🏽 Great to see the Health Bill Committee debating my amendment for real. Many thanks to @helenmorganlibdem.bsky.social for moving the amendment, to @abrokenbattery.bsky.social for sharing the recording, and to @actionforme.bsky.social for developing the concept. Stronger together! #pwME

Adam@abrokenbattery.bsky.social · 4w ago

“5 years after the introduction of NICE guideline NG206 [for #MECFS], little has changed. Service provision according to NG206 remains patchy and poor, with many patients having traumatic experiences” Helen Morgan MP, UK Parliament

“I went down to 36 kg because I stopped being able to tolerate a whole range of foods.” Wendy Matthews has lived with #MECFS for 28 years and has been bedbound for the last 7. She talks about her symptoms, how the illness has impacted her, and how #MECFS is not rare.

Yvette Cooper the new Secretary of Health talking about her #ME in the Sunday Telegraph 5/6/2011. She spoke about it at the Hay Festival in the same year.

"When healthy people become ill, they expect to call a doctor, receive treatment, and recover. When people with myalgic encephalomyelitis (ME) become sicker, they often rely on other sick people for care, in the absence of systemic support." thesicktimes.org/2026/07/20/a...

Abandoned by our governments, people with severe ME and Long COVID are supported by severely ill peers - The Sick Times

Mari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care.

thesicktimes.org

Finally had time to do a big Instagram post for #DisabilityPrideMonth! ♿️ Wanted to post it here because I suspect that a lot of people aren't aware that Disability Pride Month is happening AS WE SPEAK! 😃 #disability #disabilityrights #disabilityjustice #covidconscious #maskup 😷

🕯️💙

Jon Douglas@atranscendedman.bsky.social · 3w ago

Le In Chen’s family says the cause of her death remains unclear, but that Long COVID significantly wore down her body. She is remembered for her fierce love, brilliant mind, generosity, and devotion to those she cherished. www.legacy.com/us/obituarie...

Self searching Self researching Self learning Self advocating Self pacing Self “hacking” WelcoME to a life with #ME/CFS, the only major, non rare, highly disabling, chronic, systemic, neuro-immuno-metabolic disease that medicine & society are still refusing to properly acknowledge & care for

Walking in our farm's rainforest with the melting heat of these days, I am filled with such inexpressible anger at what is being done to our once stable climate. The richest 1% are actively, knowingly, and uncaringly sabotaging the future for all of us, and for the rest of the planet's life.

💜🩵 Save Nevra - July Update 🩵💜 Gofundme.com/f/save-nevra Paypal.me/SaveLizNevra #SaveLizNevra #MECFS #SevereME #POTS #MillionsMissing

🚨: People with Long COVID continue to be exploited by select groups of researchers. McMaster University is questioning the *proven consensus* that Long COVID is biological by funding a known scam/grift. The program is heavily denounced by experts.

Ezra S@ezra.zone · 3w ago

mcmaster university is doing a trial of the lightning process. it's 2026. what are we even doing. clinicaltrials.gov/study/NCT076...

🚨👇by Dr. @resiapretorius.bsky.social on X: "...biomarkers for #LongCOVID, so I thought I would share some blood markers available that might point to immune, clotting and endothelial dysfunction. [...] These are also the molecules we keep finding trapped in..." threadreaderapp.com/thread/20776...

Horse owners, animal staff, neurodivergents, veterans, humans – finally, a consultancy on fireworks! www.gov.uk/government/c...

Fireworks and pyrotechnics in the UK

We are seeking views on the regulation of pyrotechnics and fireworks in the UK.

gov.uk

What is CPAC Great Britain? Headed by Liz Truss, Prime Minister turned YouTuber, this conference marks the latest American attempt to export paranoid and socially regressive MAGA policies to the UK. Here’s all you need to know. hopenothate.org.uk/2026/07/16/e...

Everything you need to know about Liz Truss’s CPAC Great Britain – HOPE not hate

While most former prime ministers set up foundations or lecture at Ivy League universities, Liz Truss has launched a YouTube channel. Upon this soapbox, with...

hopenothate.org.uk

Open letter to The Royal College of Psychiatrists sent by Mark Harper and others on 13 July. #ME

1) An overview of positive developments in ME/CFS research 👇 The European Union awarded €7.5 to a ME/CFS consortium that will conduct multi-omics and test biomarkers in hundreds of patients. It will connect and harmonize five biobanks across the continent. bsky.app/profile/mecf...

ME/CFS Science@mecfsscience.org · last mo.

1) 🇪🇺 Good news! The European Union has awarded € 7.5 million for a big ME/CFS consortium that will study biological mechanisms in hundreds of patients. This is a major milestone for ME/CFS research in Europe.

It took me over 2 months to watch this video, a minute or so every couple days. On 0.4 speed. In black and white. No sound, only subtitles. I still probably overdid it. Perhaps that’s a testament to how severe ME/CFS can get. But i just wanted to share it because it’s really really excellent.

Anil van der Zee@anilvanderzee.bsky.social · 3mo ago

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

Imagine waiting six years for a plan to protect nature… …to find it barely mentions protected nature. 👇