“They’re cross and they’re upset… many are only finding out through social media.” Dr Charles Shepherd, Medical Adviser to the @meassociation.org.uk, discussing the closure of the specialist #MECFS service at George Eliot Hospital, Nuneaton.
@traceydooley.bsky.social
Living an increasingly small life enforced via chronic illness yet striving to embrace snippets of delightfulness wherever and whenever I can #MillionsMission
Solitude and 'Socialising' with M.E., by the amazing Anna Redshaw via @theslowlane_ME the-slow-lane.com/2026/07/02/s... #pwme #myalgicE #MyalgicEncephalomyelitis #MECFS
Solitude and Socialising
I’ve become quite a solitary creature. Sometimes solitude morphs into loneliness. But not always. I am quite content by myself. It’s the way I have to spend most of my time, to avoid ex…
the-slow-lane.com
My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
medium.com
I'm particularly emoting with this right now: "Just so, so done with having to chase and beg and manage all of this stuff with such limited health." #pwme #myalgicE #MyalgicEncephalomyelitis #MECFS #NHSfail #SevereME
sarah boothby@swastrosarah.bsky.social · 3w ago
Published in March this year, 'What is Myalgic Encephalomyelitis Like?' is a co-production between the WIMEL writers group (part of @pillowwriters.bsky.social) and the @batemanhornecenter.bsky.social
We are excited to share the Severe ME Artists Project 2026 from #MEAction in recognition of Severe ME Day on August 8th. #SevereME #MyalgicEncephalomyelitis www.instagram.com/p/DZu4KevjCJu/
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
No plans to develop a separate specification for severe and very severe ME/CFS
When the ME/CFS Delivery Plan was published in July 2025 the Provision of Health Services section stated that the “DHSC, with NHS England, will explore whether a specialised service should be prescrib...
meresearch.org.uk
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
Sign the Petition
Save Caroline Roberts’ Life now: A very severe ME/CFS patient with high mortality risk.
c.org
Yes, Farage is following the far-right playbook, it seems. c.org/sq95f4VDrt via @UKChange
This is the far-right playbook.
“It is inflammatory, it is extremist, it is divisive. It’s everything the family didn’t want.” That was the warning from Neil Basu, the former Met assistant commissioner, about Nigel Farage’s response...
c.org
James O’Brien@mrjamesob.bsky.social · 2mo agoHenry Nowak’s family asked us not to use his murder to ‘create further division, hatred or tension.’ Nigel Farage completely ignored them… open.spotify.com/episode/1vWM...
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
Blue Sunday 2026!
Each year, since 2013, Anna Redshaw has invited the ME community and their allies to join her to raise awareness of and money for those living with ME. This year the Blue Sunday Tea Party for ME wil...
justgiving.com
@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
May Momentum - Open Medicine Foundation
Join the Open Medicine Foundation's May Momentum and be part of a global movement to accelerate research into Myalgic Encephalomyelitis/Chronic Fatigue syndrome (ME/CFS). Discover how you can contribu...
omf.ngo
“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
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
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
Adam@abrokenbattery.bsky.social · 3mo agoOlympian Montell Douglas presenting BBC Lifeline for Action for ME “For years, I’ve had chronic pain due to a medical condition and know how difficult it can be to live with. And those with ME also have to deal with social stigma and a lack of support.” #MECFS
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
Adam@abrokenbattery.bsky.social · 3mo agoWatch the full program BBC Lifeline for Action for ME (9 mins) www.bbc.co.uk/iplayer/epis... Lifeline donation page donationportal.co.uk/lifeline/app...
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...
facebook.com
Britain’s shadow workforce is paid as little as 65p an hour. Who cares for the carers? @francesryan.bsky.social www.theguardian.com/commentisfre...
Britain's shadow workforce is paid as little as 65p an hour. Who cares for the carers? | Frances Ryan
Carer’s allowance turns 50 this year, but it’s no reflection of the labour of the millions who cook, clean and nurse behind closed doors, says Guardian columnist Frances Ryan
theguardian.com
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
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...
c.org
"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...
Say no to Palantir in the NHS
NHS England is rolling out software to run our health records from Palantir - fight back
notopalantir.goodlawproject.org
Good Law Project@goodlawproject.org · 6mo agoOver 40,000 have taken action to keep Palantir out of the NHS. Will you join them? https://notopalantir.goodlawproject.org/email-to-target/stop-palantir-in-the-nhs/?utm_source=bluesky&utm_campaign=PalantirNHS&utm_medium=social_media
Another life lost to #MyalgicEncephalomyelitis. RIP, Samuel...
Adam@abrokenbattery.bsky.social · 6mo agoCW: assisted suicide, severe ME/CFS Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS. His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore” www.heute.at/s/samuels-ar...
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
Tom Kindlon@tomkindlon.bsky.social · 7mo agoNew Australian (NCNED) ME Research UK-funded research: Distinct functional connectivity patterns in Myalgic Encephalomyelitis and long COVID patients during cognitive fatigue link.springer.com/article/10.1... #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid
🚨Now closing on 60,000 signatures! Let’s keep going! petition.parliament.uk/petitions/73...
Petition: By-elections to be called automatically when MPs defect to another party
When an MP decides they want to defect to another party a by-election should be automatically triggered to allow the constituents the opportunity have their democratic right to agree or not with their...
petition.parliament.uk
Peter Stefanovic@peterstefanovic.bsky.social · 7mo ago🚨The Petition calling for by-elections to be called automatically when MPs defect to another party now has 55,000 signatures! Let’s get the 100,000 needed! 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
Sign the Petition
Declare August as Severe ME Awareness Month
c.org