This is tragic & criminal! No plans to develop a separate specification for severe and very severe #ME/CFS Imagine people w/ end stage ALS had no specialized care plans and were left to die without palliative care, left dying without nutritional support and in pain! This is the fate of #pwME

Please sign to help save Caroline Roberts’ Life now: She's a VERY severe ME/CFS patient with high mortality risk due to medical negligence - Sign the Petition! c.org/JGHkV8PGZ6 via @ukchange.bsky.social #pwme #myalgicE #millionsmissing

Yes, Farage is following the far-right playbook, it seems. c.org/sq95f4VDrt via @UKChange

I have many issues with Keir Starmer. But his response to Nigel Farage in the House of Commons today was dignified, firm and quietly powerful. It exposed Farage for the shallow and heartless opportunist he is. Could we please see much more like this from the government.

“Very severe ME is quite a unique condition in that there is effectively no NHS specialist services that are available for someone in James’ position.” Our co-founder @karenlhargrave.bsky.social speaks to @theipaper.com about the financial cost of supporting a loved one with very severe ME.

I've #justdonated to Action for M.E. on JustGiving, among other charities, as part of #BlueSunday2026. Please consider donating £1 or more and supporting this great cause: www.justgiving.com/campaign/blu... #MEAwareness #MyalgicEncephalomyelitis

@openmedf.bsky.social is kicking off their #MayMomentum campaign! In recognition of #MECFS Awareness month, this campaign is an effort to increase research funding & awareness. Please support the millions with M.E., #LongCOVID, and related diseases: omf.ngo/maymomentum

“You mourn yourself while still alive. And others move on as if you’ve already died.” Buried Alive with M.E. — a new film by Anil van der Zee (13 mins) Extraordinary work from someone who is so severely affected by #MECFS

While I love the fact that Montell clearly states that M.E. is not CFS (there are key differences, one being brain/spine inflammation, which is not present in CFS), it's sad... 1/2

And #ME isn't like other illnesses #ME isn't accurately taught at MedSchool Many Drs don't follow the @nicecomms.bsky.social g'lines for #ME Funding for biomedical research into ME is far lower than other illnesses #ME is widely stigmatised #pwME are dying unnecessarily under @england.nhs.uk care

Dorothy is 93 and could be forced out of her care home if her Reform-led council moves forward with cruel proposals to close it. Please help share her story – it’s easy and only takes 90 seconds: www.facebook.com/reel/9215920...

Britain’s shadow workforce is paid as little as 65p an hour. Who cares for the carers? @francesryan.bsky.social www.theguardian.com/commentisfre...

It's the small pleasures in life that can have the biggest impact on a dark day... #dogs #bordercollie #joy #joyfulliving #happiness #brighterdays #dogsaregreat

We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social. In her blog, Tessa lays out the case for change and how to get involved. Link in next post 👇

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 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...

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" 🤦‍♀️😫

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...

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

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

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#ThereForME ✨

“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

December 5th. Thank you for being #ThereForME, Tony White! Nominated by Tracey @traceydooley.bsky.social#ThereForME ✨

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

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...

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.

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

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

What a difference two months make… Then, July 2025. Now, Sept 2025. #naturephoto #nature #photography

The richest man on earth owns X. The second richest man on earth is about to be a major owner of TikTok. The third richest man owns Facebook, Instagram, and WhatsApp. The fourth richest man owns The Washington Post. See the problem here?

Agreed. And here's an excellent summary of the (significant) difference between Pope Leo and Elon Musk — the former calling for compassion and inclusion, the latter spreading hatred and division, courtesy of The Times comments section at tinyurl.com/yyyyfvmw

Ayrshire Post and Troon Herald, Scotland, 12th September 1986. Thirty-nine years ago today. "Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis

@steverichards.bsky.social Thank you for saying, quite rightly, that you're more interested in the decaying #NHS — 'Four in five NHS hospital trusts are failing' — than the not-so-princely Harry on @news.sky.com Press Preview this morning.

This couldn't be more pertinent to what's happening in Trump's USA right now...

Yes, contrary to what *some* people say (Farage, I'm looking at you, for one), the ECHR is actually good for us Brits. Why change that. (That's a rhetorical Q, obviously.) #ECHR

Some findings of the DecodeME DNA Study: Genes found in: • immune (fighting infections) -nervous system (chronic pain) • NONE are related to depression or anxiety. "This brings ME/CFS in line with other long-term diseases which have genetic components." #MyalgicEncephalomyelitis #MEcfs

Solve ME/CFS Initiative Summer 2025 Chronicle solvecfs.org/wp-content/u... #LongCovid #MEcfs

Going to have to Update The Stephen King Book Collection.....