Does anyone know how to make a graphic showing the economic cost of #ME today and over maybe a 30 year period? People unable to work, cost of subsidised care, carers unable to work.etc We could distribute this to MPs in fact we could paper the walls in the HoC.

Apparently it’s #SevereMEWeek Rather than producing loads of content showing how ill we are, yet again, maybe this year the ME orgs could call out those responsible for our continued dismissal, gaslighting, and abuse. By name preferably. Maybe we could all do the same?

Sadly this is the norm. Most of us cannot work and are very short of cash but with no real, trustworthy routes to helping or healing #ME we all fall for every scrap of hope we can find on the internet. Supplements, brain-retraining, lifestyle tweaks. We are the dream customer.

People still call #LongCovid. a new illness that no one knows much about. Well lucky them choosing not to know about post-viral illness while millions of us have suffered and continue to suffer from #ME for decades. 80% of ME is post-viral maybe more, yet denial has been the norm for decades.

Author @georgemonbiot.bsky.social: "Their massive tax cuts for the rich, crushing of trade unions, reduction in public housing, deregulation, privatisation, outsourcing and competition in public services were all proposed by Hayek and his disciples." Read more: evonomics.com/ruthless-net...

It might be useful if the #ME charities did a survey as to how many sufferers live alone with no care, occasional or random care. It makes a huge difference. A friend of mine took her own life because she couldn’t get enough appropriate care. I’m sure she wasn’t unique.

Mark Haddon talking about #LongCovid The same applies to #ME. It never occurred to me that my brain would give out and make it impossible for me to work, socialise or do so many, many things I had taken for granted.

I wrote this last year, but as nothing has been done to address the underlying issues, it remains, unfortunately, just as relevant today. www.theguardian.com/commentisfre...

High water bills, filthy rivers – and now drought. This is England's great artificial water crisis of 2025 | George Monbiot

In its refusal to nationalise water, it’s clear the government operates in the interests of private capital and not of the country, says Guardian columnist George Monbiot

theguardian.com

It’s way past time that #ME and #LongCovid patients need to be grateful to sympathetic Drs, MPs and HCPs. It’s time these sympathetic people educated their colleagues in the severity, gaslighting, stigma and the real biology of these illnesses Patients who advocate are exhausted

Sadly many of us #ME and #LongCovid patients can barely stand or sit up let alone dance so I appreciate the efforts of the participants but wonder if this is a useful way to interpret what is already a controversial illness.

Solve M.E.@solveme.bsky.social · 2w ago

Save your spot at the global premiere of Unbound, a dance film created by twenty people living with #MECFS, #LongCovid, and other disabilities. July 29 at 6:30 PM ET REGISTER FOR FREE: https://ow.ly/OWOx50ZqUOK #UnboundFilm #DisabilityCulture #LongCovid #MECFS

When the story of why humanity didn't stop climate change is written, it will feature front pages like this. Even as the skies blacken with climate change-induced wildfires, right wing media continue their relentless crusade against measures to tackle it.

Arguments for a biological cause are “mocked” and “overwhelmed”, science is “ignored”, and clinicians with success treating ME are “hounded out of business”. The Countess of Mar speaking about a “school of psychiatry” in the House of Lords, 2010. #MECFS

– I’m just saying you shouldn’t rule out anxiety #longcovid #ableism #satire

Excellent service from Oura ring people. Battery problems after 18 months. After a simple, short exchange with a chatbox via their website they are sending me a replacement. I’m amazed! So used to poor service everywhere this is very refreshing. Faith in humankind restored!

A barrister represents his clients in court. Clients who are political dissidents. He now faces criminal prosecution for doing so. Not Turkey. Not Egypt. Not Russia. England. Astonishing, deeply disturbing, and part of a long slide towards authoritarianism. www.theguardian.com/uk-news/2026...

Palestine Action barrister’s prosecution criticised as ‘chilling’

CBA chair says contempt charge over closing speech by Rajiv Menon KC has left lawyers fearful of doing their job

theguardian.com

Every politician, Dr, nurse, teacher, carer, millionaire, journalist etc etc should be made to watch this video and be informed about #ME Mountains need to be moved. #chronicillness #LongCovid

Adam@abrokenbattery.bsky.social · 2w ago

Watch the Full 27 min Video youtu.be/RiwX9Y0NbiQ?... Transcript medium.com/@abrokenbatt... Follow up blog medium.com/@abrokenbatt...

My 27-minute #MECFS Medical Scandal Explainer video has now passed 300,000 views on YouTube. YouTube’s AI summary has analysed over 3,100 comments.

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.

Our new Secretary for Health and Social Care. Yvette Cooper who had #ME in the early 2000s for a couple of years. She later attended a couple of APPGs and then apparently forgot. I sincerely hope she remembers how it felt now and acts favourably to #pwME.

I need to be silent for a while, worlds are forming in my heart. Meister Eckhart. 1260-1328

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

🔴 For the past year @lucasamin.bsky.social and I have been investigating Palantir in the UK What we found was a company with unrivalled political access, selling a product many data experts in the NHS don’t use, and don’t rate Please read and share democracyforsale.substack.com/p/its-just-a...

"It's just a waste of time": inside Palantir's £330m NHS failure

Our new investigation reveals the problems with Palantir’s NHS tech - and the unrivalled political access that fuelled the firm’s march into the British state

democracyforsale.substack.com

“It was horrendous, it was almost like being in a semi-coma. All my very basic bodily functions were struggling and my capacity to do anything like read or watch TV was zero.” Dr Nina Muirhead, describing how ME affected her in 2020 #MECFS

I hate the term Chronic Fatigue Syndrome because “fatigue doesn’t even come close to describing what it is” and it’s “a minor symptom” compared to the others. Natalie Williams explains why CFS is misleading. #MECFS

With 50 million monthly downloads and 17 million YouTube subscribers, The Diary of a CEO far outstrips the circulation figures of most newspapers. It would be fantastic if someone could go on this show and tell the real story of #ME Someone articulate, charismatic, informed. Who?

Adam@abrokenbattery.bsky.social · 3w ago

Clip from Stephen Bartlett's recent interview with mitochondrial researcher Dr Martin Picard. Bartlett says the top question on Martin’s videos was about #MECFS and #LongCOVID, but he's not sure what #MECFS is. Interesting, given the earseeds controversy.

With all the current publicity about the new film The Odyssey, I’m reminded of the story of that long and dangerous voyage and can’t help relating it to the experience of having #ME and our long journey back to where we call home, a healthy body. We’re still sailing. It’s endless…

If only various governments had listened to @carolecadwalla.bsky.social for the past decade, life in Britain could be very different. Burnham needs her vast knowledge before he makes some crucial decisions.

Carole Cadwalladr@carolecadwalla.bsky.social · last mo.

NEW: Before cryptobillionaire Christopher Harborne gave £5m to @nigel_farage, he gave £1m to Boris Johnson. For what?? Today @thenerve.news news reveals new evidence that tracks Harborne's investments in defence firm QinetiQ...to key defence announcements from Boris Johnson. 1/

'Gove tried to dictate a National Curriculum for History that would focus on deeds of the Great, White Men who, he believed, had made Britain & its Empire... in Gove’s envisaged curriculum, Britons of colour would be denied access to the “common thread of British citizenship”.'

William Dalrymple@willdalrymple.bsky.social · 4w ago

Wonderful piece on the widespread failure to teach the British enough about Empire by a proper specialist in the subject, the great Alan Lester @aljhlester. Full of interesting background about Gove and his extremist paymaster, Paul Marshall that I didn't know alanlester.co.uk/blog/teachin...

Genius - whoever did this #Farage

ME “is as serious as AIDS, cancer, multiple sclerosis. You feel as ill as those people do, but neglected a lot by friends and family because they don’t realise how sick you really are.” ME patient Barbara Kell, BBC Look North 2012 #MECFS