A quote from 2024, but sadly still urgently relevant today:

"Care for ME needs a complete overhaul worldwide if we are to care for ME patients the way we care for patients with any other health condition." — Whitney Dafoe @whitneydafoe.bsky.social

#MyalgicEncephalomyelitis #pwME #MECFS

This isn’t leadership. It’s a lie. Reform has pledged to repeal the Equality Act. It’s hard to overstate how serious that is. The Act protects people from discrimination at work and in wider society. It underpins equal treatment for wo...

This is NOT leadership. It IS a lie: c.org/bKw7hhR8NG via @ukchange.bsky.social

"NHS England is rolling out software to run our health records from Palantir – a US spy-tech firm that has supported mass deportation in the US and enabled genocide in Gaza."

Please fight back now via this super-easy click and send objection route:

notopalantir.goodlawproject.org/email-to-tar...

Another life lost to #MyalgicEncephalomyelitis. RIP, Samuel...

'Unhinged' doesn't even come close to describing the delusions of this hideous man-baby Trump.

39 years of repeating..
"No"
"No, sorry, I can't do that
"No, sorry, I can't do that, because I have #ME
"No, it wouldn't 'do me good', thanks
"No, there's still no treatment for #ME
"No, Drs still aren't medically qualified to treat #pwME
"Yes, #ME can be fatal"
🤦‍♀️😫

Thankful to Sonya and Action for ME, but you've got to ask where on earth is that thing called 'duty of care' from the NHS..? Abhorrent treatment of a vulnerable patient in need of proper and sustained care.

News Release 27-Jan-2026

Altered brain connection found in people with ME/CFS and Long COVID

People with #MyalgicEncephalomyelitis/ #ChronicFatigueSyndrome & #LongCOVID experience a disruption to their brain connectivity during a mentally demanding task.

www.eurekalert.org/news-release...

#PwME

🚨Now closing on 60,000 signatures! Let’s keep going!

petition.parliament.uk/petitions/73...

Sign the Petition Declare August as Severe ME Awareness Month

Please help to declare August as Severe ME Awareness Month — sign this petition here — thank you in advance: c.org/DTcvjvX4mN

#SevereMEAwareness #pwME #myalgicE #MyalgicEncephalomyelitis #MEcfs #SevereME

The Nightingale Continuum | ME and CFS are 2 completely different entities | Facebook ME and CFS are 2 completely different entities. CFS is based on the symptom of Fatigue. ME is a Neurological Disease . ME (Myalgic Encephalomyelitis) * Means inflammation of the brain and spinal...

M.E. is not the same as CFS:

www.facebook.com/groups/10637...

[SOURCE: fb group, The Nightingale Continuum— offering reliable #MyalgicE info on the acclaimed work of Dr. Byron Hyde & others. Fully documented, from 1950s/1980s to the present.]

#MyalgicEncephalomyelitis #MEcfs #pwME

Photo of a man in a scarf in a polaroid-style frame on a starry background, marked with a bright star labelled ‘17’. Text says: ‘Thank you for being #ThereForME, George Monbiot!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Dear George, Your writing, your videos and your interest in the plight of ME sufferers is unsurpassed. You have all the facts coupled with understanding and humanity that makes us all feel really seen and safer with your backing. Thank you. ” Hashtag #ThereForME at the bottom.

December 17th. Thank you for being #ThereForME, @georgemonbiot.bsky.social!

George is a well-known journalist who has focused on uncovering the reality of the “greatest medical scandal of the 21st Century”. Nominated by Carole B @cabruce.bsky.social. ✨

“The treatment of today’s ME/CFS patients is comparable to that of lobotomy patients decades ago. When the full history of ME/CFS is written one day, we will all be ashamed of ourselves.”

Prof. Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway.

1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening."

She gives examples of patients who do not get appropriate care.

Redwings video re fireworks and horses c.org/YKJfrwdXjJ via @ukchange.bsky.social

This 'MYALGIC ENCEPHALOMYELITIS – Adult & Paediatric:
International Consensus Primer for Medical Practitioners' from @investinmeresearch.bsky.social has some very useful information (and especially for your GP!):

tinyurl.com/MEconsensus

#MyalgicEncephalomyelitis #MECFS

Photo of a smiling man with a white goatee and glasses in a polaroid-style frame on a starry background, marked with a bright star labelled ‘5’. Text says: ‘Thank you for being #ThereForME, Tony White!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Tony, I honestly can't express just how grateful I am to have you by my side, and for everything you do and have done for me. Life with M.E. is more than difficult, and I know I can be, too — so thank you for your ongoing patience, care and love. Xx”’. Hashtag #ThereForME at the bottom.

December 5th. Thank you for being #ThereForME, Tony White!

Nominated by Tracey @traceydooley.bsky.social. ✨

Write to your MP Write to your MP Substack: https://www.thereforme.uk/ Linktree: https://linktr.ee/ThereForME About #ThereForME #ThereForME is a campaign led by patients and carers, calling for an NHS that’s ther...

docs.google.com/document/d/1...

Done. Please do take a few moments to help #pwME.

Sensory hell and medical harm My sister’s experience of very severe ME in the NHS

This is happening everyday, everywhere.

Read the story of Rosie and Alice.

Everyone who has been hospitalised with ME, knows it.

"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm".

#GreatestMEdicalScandal

www.thereforme.uk/p/sensory-he...

Trump-proof the BBC The BBC is our national broadcaster, we must defend it against those who want to destroy it.

Please consider signing — Trump has threatened to sue the BBC (and therefore the British public, as we are licence-payers of this public service) for $1bn — huge irony considering what that man has done himself www.libdems.org.uk/bbc

Great to hear @matthewstadlen.bsky.social standing up against tyrants such as the Big Fat Orange one, but also Angela Epstein, who went on a nonsensical rant re the BBC (and failed to see the irony of Trump having 1,000s upon 1000s of times spurred out falsehoods, let alone undermining democracy).

#SevereME #MyalgicEncephalomyelitis #MECFS #MillionsMissing

#SevereME #MyalgicEncephalomyelitis #MECFS #pwME

The problem with using the broader “CFS” definitions… is that the study samples “will include cases with many other causes of fatigue, including other organic disease or depression or mental health illnesses. This is not good for research,” said Luis Nacul, MD, PhD.

ICB WATCH: New figures show uneven trends on use of private sector? - The Lowdown New figures published earlier this month show the extent to which some Integrated Care Boards (ICBs) have increased their use of the private sector since Labour took office last July, and the extent t...

Privatisation = "the drain of resources away from NHS providers" + "profit margins that keep the private sector seeking more NHS-funded work mean that every £1 spent in the private sector delivers LESS value in the form of patient care than the same amount spent in-house NHS services" rb.gy/th6gdq

We Can Make an Impact. Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.

TWO years on, very severe M.E. patient Karen Gordon STILL fears for her life due to #NHSfailings — & still needs our help.

Anyone who hasn’t yet, please SHARE & consider signing her petition🙏

rb.gy/12xvic

An update of which is here:

chng.it/CGMQTDVvRb

#SevereME #MyalgicEncephalomyelitis #MECFS

Haha! You got it!

Picture of thistle in Summer and then Autumn 2025...

What a difference two months make…

Then, July 2025. Now, Sept 2025.

#naturephoto #nature #photography