Please watch this short video & engage your MPs if able. Tag them, write to them, this is urgent. www.youtube.com/watch?v=YoCT... @meactionuk.bsky.social “people with SevereME have no treatment, no hospital beds, no specialist, no NHS service. Stop the deaths. Stop the harm. Start the service.”

Stop the harm, Stop the deaths, Start the service Share this video - lobby your MP and @jamesmurrayldn.bsky.social Find out how here shorturl.at/I7Rwk Let’s make our voices heard! #MyalgicEncephalomyelitis #VerySevereME youtu.be/YoCT_K66Ul0

@kerrymp.bsky.social @tessamunt.bsky.social @jamesmurrayldn.bsky.social #starttheservice #myalgicencephalomyelitis #MECFS #severeME Proud to have been a small part of this. We need change.

It's strange to me that Matt Goodwin seems to be on the BBC more than Hannah Spencer when he lost an election to her

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows.

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows..

We have asked you to contact your MP using our advocacy guides (link to our full guide shorturl.at/9lhU7 or to our shorter guide here shorturl.at/pxwux). This is showing results so please keep doing it if your energy allows..

More locations, photographs and videos coming soon! shorturl.at/NiQ90 #MillionsMissing

More than light - voice for the voiceless. Last night, #MEAction UK took to the streets of London to urge @jamesmurrayldn.bsky.social#MEActionto listen to the most severely ill people with ME & set up NHS care. Lobby your MP!

Lighting up the darkness for ME. #MEAction UK took to the streets of London to urge James Murray, the Secretary of State for Health and Social Care, to listen to the most severely ill people with ME. We need the immediate setting up of NHS specialised care to prevent more suffering and deaths.

“Claras arrived today she was thrilled and it really made her smile ❤️ thank you from the bottom of our hearts xxx”

“THANK YOU so much for my Smile package which arrived today! So lovely and unexpected and definitely brought a smile to my face 😊😊😊 Very kind of “anonymous” and very kind of Smile for ME too.”

"Thank you so much for my beautiful box of treats in memory of Merryn. They are all absolutely perfect & will help me so much so thank you. The personalised bag is beautiful 💖 i will honestly treasure it all thank you for your kindness & time that was put into this 🥹💖"

“Thank you so SO much for my smile, honestly had a few tears, I cannot express my gratitude and comfort”

May’s newsletter: smileforme.org.uk/may2026 Includes this month’s share a story by @swastrosarah.bsky.social in memory of Maeve Boothby O’Neill 🩵

Can’t believe it’s a whole year ago that the #Mirrorbox visited its first location,Troopers Hill in Bristol. What a humbling experience to have had so many people turn out to stand or sit in the Mirrorbox, 1 by 1, to hear my message, my voice. Both people I’ve known a long time, & total strangers.

Luxembourg Times: An incurable affliction that saps your strength   An article explaining ME/CFS - "a chronic disorder mostly invisible to others, punishes even the slightest exertion with a ‘crash’ that can last for weeks"  https://tinyurl.com/4dbhwne8 #pwME #MECFS #MyalgicEncephalomyelitis

Thinking of the #ME community this #BlueSunday, especially those who are struggling to participate or for whom it brings painful memories. You are not forgotten.

my mini tea party for blue sunday 🥰 vanilla chamomile lavender ginger tea w/ a cherry lemon doughnut cake i was going to wear my new blue dress but i had paralysis this morning so just getting this together was an accomplishment #bluesunday #meawareness #mecfs

This was published back in May 2020! #pwME sounded the ALARM about ignoring the grave & disabling consequences of post COVID-19 sequelae. #ME/CFS being the most serious and impactful one: www.washingtonpost.com/health/could... @brianvastag.mas.to.ap.brid.gy & our late Beth Mazur #LongCOVID #IACCs

Yesterday, a new generation of civil rights activists marched from Selma to Montgomery to fight for voting rights. As states across the country try to make it harder for citizens to be heard, we need to learn the lessons of those who came before us and refuse to take our democracy for granted.

@tessamunt.bsky.social for the #BlueSunday concert 'For those of you living with ME, please know you’re not forgotten. I & many others are committed to bring about the essential changes in attitude, in care & most of all...the prospects of treatment that for too many years you’ve been waiting for.'

How it started, how it’s going 🎂🍰 How’s your Blue Sunday going? #BlueSunday2026 🩵 Donate to Smile For ME: www.justgiving.com/page/bluesunday2026smileforme

Happy Blue Sunday to all the #pwME

Happy #BlueSunday2026 #TeaPartyForME2026 ! I just donated the cost of a coffee/pastry to @meactnet.bsky.social & to mutual aid for people with ME 🩵

It's Blue Sunday, an opportunity to raise awareness of ME/CFS and funds for your favourite ME charities, including The ME Association, organised by Anna Redshaw. #BlueSunday #MECFS #MEAwarenessWeek2026 #MEAW #MEAW2026

Putting the finishing touches together 🎀🎂 Happy #BlueSunday2026 🩵 Find out how to join in: www.smileforme.org.uk/bluesunday Donate to Smile For ME: www.justgiving.com/page/bluesunday2026smileforme

Sending #bluesunday love to the M.E community, appreciating your resilience, bravery, courage, and kindness. #teapartyforME2026 #mecfs #courage I’ve been sniffing chocolate digestive tea, and herbs (lemon balm, orange mint, apple mint, thyme, rosemary!) & FT’d my brother & his gf with my parents💙

Immigration make Britain brilliant

This Blue Sunday feels a little…well… blue for me, as it’s one more thing to be inaccessible that really should be accessible. I will still celebrate of course, but without the food. My friend in this community, without me saying anything, knew & I received this handmade in the post🥹💙 #teapartyforME

Thanks to my mum for getting everything ready for our family #TeaPartyForME2026 on #BlueSunday2026 (on Sun) We’re doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... but other worthy charities are available (see the-slow-lane.com/donation-pages ) #MEcfs #CFS #BlueSunday

Blue Sunday, the Tea Party for ME, is always the Sunday after #MEAwarenessDay & is a sweet way for healthy allies to support ppl with ME. You throw a little tea party (for friends or just yourself), donate the cost of a tea/pastry to an ME org of your choice, & post a pic online to raise awareness 💙

I hope this isn’t true. There are times when it’s more important to put country before party. This is one of them. Burnham’s longstanding commitment to a fairer voting system could transform our democracy & counter the dire threat of a Reform UK government elected on a minority of the vote

Writings from my heart. We’re not asking much. We’re really not asking for much. #millionsmissing #MECFS #myalgicencephalomyelitis #MEawarenessweek

“There appears to be a bidirectional relationship between connective tissue disorders and ME/CFS: underlying connective tissue abnormalities may increase susceptibility to ME/CFS, while #MECFS may aggravate connective tissue pathology.” #pwME #EDS #Marfans www.preprints.org/frontend/man...

Here are the facts: People have always had and will always have abortions in all 50 states. Abortion pills are safe, effective, and have been used by millions of people. No court or politician can change either of those realities.

Love seeing the creativity each year! Powerful in-person #MillionsMissing is in the books! Online continues through the 16th. #FrailAndFurious is all year. @meactnet.bsky.social is showing up. But needs support to continue! $7k matching advocay grant!!! millionsmissing.funraise.org/fundraiser/a...

#ME/CFS is such a punishing & invisible illness which has nothing to do with run of the mill fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners. #MEAwarenessWeek #PEM

We’re looking for ME sufferer and carers to share their personal experience of ME. Please reach out if you are interested: [email protected] 🩵

Here are a few of the items which were included in our March Smiles 🎁🩵

I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress. Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.

Writing something so eloquent and detailed must have caused so much PEM but it's a great piece. 👏🏻 Fantastic photos, I especially love the "half mask" style photo that shows that literally putting on a brave face only covers symptoms but they're still there. 💘

I live with Myalgic Encephalomyelitis (aka “Chronic Fatigue Sydrome”) and a host of related disorders. We say #MillionsMissing because the conditions are so debilitating that they cause us to have to drop out of our lives. Sending 💜 on #WorldMEday to all those who suffer. You are not alone.

Some welcome regeneration in the Dart Valley, Dartmoor (with the image the right way up this time!). Would love to see much more of this.

Watching the Media you would think Zack Polanski was Prime Minister... of the Universe. Meanwhile Nigel Farage is like a slug nobody has noticed in the garden.

“What Is Myalgic Encephalomyelitis Like? Patient & Caregiver Perspectives” shares 80 firsthand accounts from people living with and caring for those with ME worldwide. BHC was honored to write the book foreword and chapter forewords for this important project by WIMEL writers. Available on Amazon.

“Imagine you must operate on 15% energy, at your best. If you go into the red it can take days, weeks or months to recover, and only to 15%.” Úna, Ireland, living with myalgic encephalomyelitis since 1982

As always, I will repost this today #MEawarenessday #MECFS #millionsmissing The irony is, that in comparison to now, I was well when I wrote this. And yet in comparison to healthy, I was so so far from being ‘well.’ inews.co.uk/news/health/...

The poetry anthology I Once Was is published today, on International M.E. Awareness Day. All the poems have been written by M.E. patients, including one by me. Available from Amazon. All profits donated to @openmedf.bsky.social #mecfs #ME/CFS #chronicillness #invisibleillness #poetry #books

Today is World #ME Day. My thoughts and solidarity are with everyone dealing with Myalgic Encephalomyelitis, aka ME or MECFS. Like millions of others with long COVID, I suffer from it. Update from @thereforme.bsky.social @emmagl.bsky.social @karenlhargrave.bsky.social 🤍 #MEcfs #MillionsMissing