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.....

Yet another life lost to #MyalgicEncephalomyelitis. A totally avoidable loss but for the complete lack of specialist care, research funding, training, and guidelines on treating this cruel and hideous disease. #pwME #MEcfs

Gastrointestinal symptoms are very common among people with #ME and can lead to malnutrition. Yet there is very little research in this area. #HealthResearch #MedSky nutritionandmetabolism.biomedcentral.com/articles/10....

Helen Baxter from the 25% Severe ME Group wants to talk to people in the UK of all severities who are taking off label drugs for ME (i.e. those unlicensed for ME), whether they are being prescribed on the NHS or purchased privately. [email protected]

Yet another life lost to #MyalgicEncephalomyelitis. A totally avoidable death but for the complete lack of specialist care, research funding, training, and guidelines on treating the hideous disease that is #MEcfs. #pwME

A tragic loss of life. Avoidable deaths complete lack of specialist care, research funding, training, and guidelines on treating the hideous disease that is #MEcfs. #MyalgicEncephalomyelitis #pwME

Yup, and meanwhile £30 billion per year is lost to fraud by corporations and the very wealthy, etc, evading tax and other forms of non-compliance, 'not taking reasonable care and so on.

A reminder of what the global research output on #MECFS looks like, when compared to other diseases 😳 In the US at least, each of these other diseases now has a lower burden (measured in DALYs) than ME/CFS - and yet ME is barely off the floor. @rorpreston.bsky.social #MECFS #LongCovid

Nothing better sums up the threat to our democracy and country than this far right cosplaying champion of the working class lolling about in a Belgravia club and the Sunday Times giving him a megaphone to honk out his ruinous Trumpian populism to a public tired of govt failure (that he helped cause)

“How to cope with a heatwave if you have ME/CFS” by @meassociation.org.uk meassociation.org.uk/2022/07/how-... From 2022 but timeless #MEcfs #chronicillness #PwME #CFS

This is oligarchy. This is obscene. While 60% live paycheck to paycheck & kids go hungry, Jeff Bezos, worth $230 billion, goes to Venice on his $500 million yacht for a $20 million wedding & spends $5 million on a ring while his real tax rate is just 1.1%. End this oligarchy.

Thank you Alison Hume 👏

And ditto! Thank you, Nationwide for my £100 Nationwide Fairer Share Payment. #Nationwide

Hundreds of thousands of people living in disabled households will be at risk of needing to use a food bank if the government goes ahead with its plans for benefit cuts, new research has found www.bigissue.com/news/social-...

(UK) “Light-sensitive people need safe non-LED lightbulbs, say health charities” lightaware.org/lightaware-u... Image is screenshot from the MCS-Aware June email bulletin

YET MORE stress & no answers to our questions from East Sussex NHS; & update on Karen Gordon’s Hospital Stay chng.it/k6752MwWTg via #UKChange #ME #MECFS #LongCovid #SevereME #VerySevereME #MillionsMissing #MEAction #TeachMETreatME #GreatestMEdicalScandal #ThereForME #DontLetMEDie #MEawareness

🚨Shocking news: private company that tests eligibility for DWP's disability benefits reports 23% rise in profits As Disabled people face poverty and sanctions, the Maximus company has made £5.5 million in profits in the last year www.theguardian.com/society/2025...

New-ish fundraising page to support Ian Lipkin's "ME/CFS Research - Center for Infection and Immunity" whose federal funding has sadly been decimated joinus.cuimc.columbia.edu/index.cfm?fu... More information on the program at the link #MEcfs #CFS #PwME

And to add insult to injury with the continuing UK healthcare crisis: GPs trained but unable to find work: Why the NHS funding crisis is causing GP unemployment lowdownnhs.info/topics/gp-su...

This is shocking: NHS told to slow down referrals amid rising waiting lists and job cuts lowdownnhs.info/cost-cutting... #NHSCrisis #NHSPrivatisation #NHS

Spot the odd one out... (Clue: A Canada geese family of goslings with one VERY little one that is clearly not a goose!) We came across these little walking versions of 'fluffy joy' and were treated to a delightful few moments. #Spring #animals #naturephoto #nature

So delighted that all 72 LibDem MPs signed this letter to @rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay

Really helpful article in today’s Times highlighting concerns over the government’s forthcoming Delivery Plan for ME. It must has ambition, clear targets, and resources to make a meaningful difference. As a member of the APPG ME I’ll do what I can. #pwME have waited too long.

Happy Blue Sunday! Just sitting down with my lovely cup of Rosie Lee and 'obligatory' slice (CHUNK) of cake. I've #justsponsored Katie Anderson-Morrison, who's fundraising for IiME. Please donate if you can, too: www.justgiving.com/page/investi... #BlueSunday2025 #TeaPartyForME2025