Michiel

Birthday Postcard by a friend of Savannah. It shows the head of Savannah, a young black woman with long brown hair, in profile, on a pink background. There are stars painted on her cheek and she appears to have fairy wings. There's a rainbow over her head, a yellow garland to the right of her face, and a flower garland below it all, with the words "happy birthday Savannah" in purple below.

If using moonpig, feel free to upload attached art by her friend for your card. This was the simplest 'upload your own photo' card I could find: www.moonpig.com/uk/customise...

Also note that you need to put ward & room info in the surname field or moonpig eats it when it 'corrects' the address.

CALL TO ACTION:

send Savannah a card for her 24th birthday, this saturday March 7th.

Postcode is wrong on the gfm (will get Sam to update asap), please use this address:

Royal Devon and Exeter (Wonford)
AMU West, room 2
Barrack Rd
Exeter
EX2 5DW.

#MECFS #SevereMErgency #SaveSavannah

Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

There's been a big update on Savannah's gfm.

Very happy she is no longer at QEH. Been in the Royal Devon - the only NHS hospital with a protocol for admitting Severe #pwME. Still far from risk free imo, but a huge improvement over QEH. Full details in the last two updates below

#SaveSavannah

Ouf 🤯. Another absolute GEM by @lucibee.bsky.social after that FOI on the nhs learning module on #ME.

👏👏
#accountability
#GreatestMEdicalScandal

The DWP never ceases to unnerve me. 2 letters today. One standard about April changes. One saying they need to see my birth certificate within 7 days with the threat of not paying if they don't receive it. The letter is dated 23 February and arrived today.

such an egregious answer. To paraphrase "while germany and the netherlands have ring fenced EUR 570m for biomedical research into IACC's, we thought a *SHOWCASE* would be enough to undo decades of neglect and abuse of #pwME by UK government and NHS.
Oh and we're funding a *cost effectiveness study*"

if anybody needed more evidence that the UK Govt isn't acting in good faith when it comes to #ME/CFS, this thread sums up the neglect and gaslighting nicely.

Hollow, empty words (if any words at all) accompanied by exactly no meaningful action or funding.

uh oh. have a feeling this is going to be a thread full of gaslighting.

I'm going to do a thread 🧵 here on the questions asked in UK Parliament about the #MEDeliveryPlan specifically and ME in general since November 2025.

Due to the vagaries of threads in BSky 🙄, this might not work as planned, but let's give it a go...

NHS Lothian logo in blue on a white background.

#MEAction Scotland volunteers recently met with staff from NHS Lothian to discuss its guidance for GPs who are considering referring patients to the ME/CFS clinic at Astley Ainslie Hospital.

YouTube video by HLTH Compliance Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast

Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵

youtu.be/pk00btt7CVs?...

Long COVID Defense Series III featuring 6 Virtual Q&A Sessions — Mask Together America March 4, 2026, 4:30pm - 9:00pm EST Join Long COVID Defense Series III to honor patients and their allies who are tirelessly advocating for health justice in this historical struggle. On March 4, 2026....

I will be speaking virtually about #LongCovid for @togetherwemask.bsky.social
LC Defense Series
5:45pm EST. 4 March 2026
Registration link and programme here

masktogetheramerica.org/blog/long-co...

A photo montage showing M E Action volunteers meeting various MSPs, MPs and prospective parliamentary candidates at the Scottish Labour Party spring conference.

Another weekend, another party conference.

This time it was the Scottish Labour Party Conference, a single day conference which proved both busy and fruitful for #MEAction Scotland volunteers, Janet and Judith.

#MyalgicEncephalomyelitis #MyalgicE #HealthEquality

If you’re otherwise healthy, recovering strength after bedrest is a pretty linear and straightforward process.

No special instructions needed.

If you’ve got an energy-limiting disease, however, pushing exercise just makes things worse.

And yet docs do, all the time.

What if there was a mindful way to steal people’s art, pollute Black neighborhoods, and raise everyone’s electric bill?

Our 2026 Manifesto sets out what must change on Long Covid diagnosis, care, jobs, public health & support
Help us act:

✅ Share our posts
✅ Raise it with politicians
✅ Volunteer

International Long Covid Awareness Day is 15 March #LongCovid #LongCovidScotland

Blyth ex-GP says long Covid patients are being forgotten The NHS in the North East and Cumbria is closing its last dedicated long Covid clinics this month.

BBC: “Long Covid patients are forgotten, ex-GP says”

‘A doctor whose career was ended by long Covid said living victims of the virus were being forgotten by politicians and the NHS’

www.bbc.com/news/article...

I donated today.

This is a #pwME with #SevereME and other co-morbidities who had to escape their home situation.

On this #DisabilityDayOfMourning, I want to prevent any more loss. Join me. gofund.me/0b70a3928

#disability #MyalgicEncephalomyelitis

Imagine a drug or physical product with the safety record of X, or ChatGPT.

I was born in an Iranian prison. My parents were held in their jails. My uncles lie in their mass graves. Nothing you can tell me about the crimes of the Iranian regime that I haven't lived in blood and bone. That doesn't mean I want my people bombed, maimed, killed, their homes in ruins. If your vision of liberation comes only through the destruction of innocent lives, then it's not freedom you're after. Sahar Delijani, Iranian author

I am pro Iranian people. I stand with them against their own government’s repression AND against the imperial violence in the form of bombs dropped from the sky from Israel & the US who have already killed hundreds.

I support neither imperialism or dictatorship.

Sahar Delijani said it best:

Binita KaneBinita Kane • 1stVerified • 1st Consultant Respiratory Physician | Special interest in Long COVID and ME | Founder of The Long COVID Clinic | Co-Founder of South Asian Heritage Month | Diversity Power list 2024/25 | Member of Independent SAGEConsultant Respiratory Physician | Special interest in Long COVID and ME | Founder of The Long COVID Clinic | Co-Founder of South Asian Heritage Month | Diversity Power list 2024/25 | Member of Independent SAGE 2h • 2 hours ago • Visible to anyone on or off LinkedIn Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe Long COVID and Myalgic Encephalomyelitis (ME). Despite hundreds of thousands affected, to this day, there are no commissioned NHS services for those at the severe end of the spectrum - though patient advocates, charities and some MPs are working hard to change this. The transition to the independent sector was never in my life plan - it happened organically. I am very grateful to HLTH Compliance for inviting me onto their podcast to share my journey and experiences of setting up the clinic, which emulates a tertiary level specialist interdisciplinary service - with one important difference - my patients are all over the country and so are my team. My most severe patients are bedbound, tube-fed, have 24/7 full-time care and no regular NHS support outside of their GP (+ possibly a dietician). Here I talk about how it happened, my road to getting independent CQC registration, as well as the broader challenges of treating Long COVID and ME. Long Covid Kids Long Covid Support Karen Hargrave Action for ME Solve ME/CFS Initiative ME Association ME Research UK https://lnkd.in/esKihrD6 Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast

I haven't watched this myself so far but have been generally impressed with media interviews Dr. Binita Kane @binitakane.bsky.social has done

www.youtube.com/watch?v=pk00...

#LongCovid #MEcfs

Disability Day of Mourning, Disability Day of Rage, Disability Day of Hoping for a Better World ♥️

HOPE IS HERE 200K GREEN PARTY MEMBERS Green Party Promoted by Chris Williams on behalf of The Green Party, both at PO Box 78066, London SE169GQ

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More members, more councillors, more MPs.

The Green Party just keep growing.

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Moore is a horrible, horrible piece of work.

I’m 50 and have lived with being trans every day of my life.

People like this, motivated by nothing but hatred, should have absolutely no business commenting on our lives.

not surprised at all.

UK mainstream media = epstein class propaganda rags.
All of them.

It is now clear that @labouruk.bsky.social’s problem isn’t poor PR or McSweeney and co. It’s the fact #Labour have been taken over by far-right, oligarch and dictator funded fascists. All progressive and left leaning members, MPs, etc have or are being purged. It’s time for hope not hate. #votegreen

From the cfs community on Reddit Explore this post and more from the cfs community

Does anyone else have a good hour trap - where you feel slightly better and immediately do too much, and then pay for it for three days?
Pacing
I know about #PEM. I understand it intellectually. I've read about pacing a hundred times. And yet every single time I have an unexpected good hour my brain

Illustrated hands releasing yellow, red, purple and green butterflies for Zero Discrimination Day. Emerge Australia logo is bottom left.

Today we highlight the right of everyone to live a life with dignity.
People with #MECFS & #longCOVID deserve:
✨ To be believed, accommodated, included
✨ Access to health services
✨ To live free from discrimination
Society must adapt, not exclude. Find resources about inclusion zurl.co/RQxL1

A graphic reading "Long Covid Awareness" "March 2026" "Join Us" with the Bluesky handle @RenegadeResearch and the Renegade Research merch store link: https://www.bonfire.com/store/renegade-research/. Also depicted is the word "fashion" is pink cursive and a black and white graphic of a coat hanger, along with two colorful shirts with white graphics promoting Long Covid Awareness.

A graphic reading "Long Covid Awareness" "March 2026" "Join Us" with the Bluesky handle @RenegadeResearch and the Renegade Research merch store link: https://www.bonfire.com/store/renegade-research/. Also depicted is the word "advocacy" in purple and a black and white graphic of hands holding in a circle along with two colorful shirts with white graphics promoting ME/CFS Awareness.

A graphic reading "Long Covid Awareness" "March 2026" "Join Us" with the Bluesky handle @RenegadeResearch and the Renegade Research merch store link: https://www.bonfire.com/store/renegade-research/. Also depicted is the word "science" in black and white and a blue and white graphic of a microscope, along with two colorful shirts with white graphics promoting Long Covid Awareness.

Check out our new Bonfire merch for Long Covid Awareness! 😎 It's pretty PASC-tacular

You can wear these every March or even year-round to get your advocacy on for #LongCovid and #MECFS 💪

Our merch store link: www.bonfire.com/store/renega...

You raise a very good point Esther.
It should be the case in the UK as well. But it isn't.
In Nov 2022 the Industrial Injuries Advisory Council submitted a Command Paper to Government recommending that certain Covid-19 sequelae be prescribed as occupational diseases for which benefits would be paid.