Now you can watch the video of my interview last week with the brilliant and remarkable Jeremy Lent, one of the greatest thinkers of our age. In his new book Ecocivilization, he charts a way forward for us. Hope and inspiration. www.youtube.com/live/4-r-tUh...

With the right love and support we might all get the chance we deserve in life ❤️

This is so Artistic 😊

Hey everyone. I have updated my starter pack of community leaders, advocates, researchers, clinicians, patients and carers from our #LongCOVID and #MyalgicEncephalomyelitis community. Please check it out and feel free to share. go.bsky.app/6R7bqc7

The deaths are almost all young people too—mostly younger than me. Mostly women. And the world simply doesn't care. If the media reports on a #SevereME death at all, it's often in the context of talking about assisted suicide as if it's a mercy—

Very severe = often requires hospitalisation although that can also be dangerous if guidelines aren’t followed

Please sign and share. NHS hospitals are the immediate risk to everyone with very severe #ME c.org/bPRhdjB6mg

In a field near Wicken, Cambridgeshire larkspur is grown for London florists along with cornflowers & Nigella. It’s quite a sight just now-some floral dopamine for you 🌿:

David shares at #MillionsMissing 2026 about his life with his wife Shaina, a #pwME (who also shared!). "Nobody should have to disappear just because they got sick. And nobody should be punished for loving someone who is.” Full speech: youtu.be/UE3U8O5rWcg #caregiver #MECFS

My painting UNTITLED.

"France passed a single law and instantly unlocked 11 gigawatts of #solarenergy — without using new land. In 2023, France's government mandated solar canopies over all car parks larger than 80 spaces. The scale was enormous: There are 400,000 parking areas across France #ActOnClimate #Renewables

Every day is a great day to support your local library.

#pwME what gives me hope: people who know how to distinguish what is morally right from what is not, and then how to act upon it. So far: 0 in UK ME orgs (met them all) 0 in government (met a few) 1, maybe 2, in academic research (as above). Statistically not promising. Is hope ever? justice4ME.uk

“If I went to an appointment and came away without one of us being in tears or absolutely furious, that was not too bad.” MSP Helen McDade speaking about her family’s experience of #MECFS in the Scottish Parliament.

Just 3 sessions left for the summer season of #CloudShrine Take a moment to #Connect with others in the #community where we #Support each other, to feel nourished. For those in #Sunderland #SouthShields #Whitburn These introductory sessions are just £3 which includes parking Book below ⬇️⬇️⬇️⬇️

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BBC Morning Live addresses complaints after Dr Oscar Duke said that Chronic Fatigue Syndrome was “probably the best way to describe” the illness. Feedback from viewers outlines how it trivialises the illness, is just one symptom, and it does not reflect the reality of #MECFS.

1) This paper provides the a structured, transdisciplinary care guide for people with #severeME in home settings. The guide fills a major gap in professional knowledge and supports both family caregivers and health professionals in delivering safe, stabilizing care for people with severe ME.

ME Research UK: Highlights of the International ME/CFS Conference 2026 included a presentation on the results from the DecodeME study and discussion of next steps, and a presentation on whole-body positron emission tomography (PET) scans for ME/CFS. Read more: tinyurl.com/2crj6zd6 #mecfs #pwme

TV doctors really need to do their homework! It’s an insult every time they use cfs to describe the serious disease #MyalgicEncephalomyelitis

It’s been nearly a year since I’ve seen anyone I know…coming out the other side of the most isolating and lonely time of my life. I’ve done very well indeed yet not unscathed #MEAwarenessMonth #SARSCOV2 #PAIS #PASC #pwME #Isolation #Solitude #Stigma #Abuse #VicariousTrauma #MyalgicEncephalomyelitis

It’s ME Awareness Day-a perfect time to get your copy of ‘What Is Myalgic Encephalomyelitis Like?’ Available now on Amazon, it has 80 first hand accounts of life with this debilitating illness. I can’t wait til my copies arrive!

If you’re not affected by ME, I challenge you to look through the hashtags this #MEAwarenessDay & choose one post to share on behalf of the #MillionsMissing. We desperately need healthy allies to get angry for us & advocate for research & social support 💙 #MECFS #WorldMEDay #GreatestMEdicalScandal

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💙

Absolutely stunning composite photo of the "Super Flower Blood Moon" eclipse, over Stonehenge, from 2022. 🌘🌗🌑🌓🌒 (📷: unknown) #Stonehenge #Moon #LunarEclipse #BloodMoon

It's #BlueSunday2026! A day to fundraise for ME advocacy and the #MillionsMissing, and like every May, I will match your donations! For 3+ years I have been of this world but not in it, and this is my best hope of getting my old life back. For now, this is my day to day: hashman.ca/me-cfs/

We spend around 90% of our time indoors. Yet there are no statutory limits on indoor air pollutant levels in UK homes, schools or workplaces. Parliament's own researchers have set out what needs to change. #IndoorAirQuality #AirQuality corsirosenthalfoundation.org.uk

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

Anyone needing a balm during #MEAwarenessMonth this can make those of us isolated without social contact feel less alone… youtu.be/6iRbQNX07zY?... Watch and donate if you can too 💙🌟🎶💙

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.

Please retweet.

#MEAwarenessMonth I am looking forward to the publication of BACME's tube feeding in ME/CFS survey results. This work is groundbreaking Heartbreaking Illuminating Sickening Myth busting Everyone involved has given so much, so candidly - and for free - to make it possible.

"Coffee" with a Clinician is LIVE www.youtube.com/watch?v=kEKd...

Update on Savannah: Cyclizine was restored 2 weeks after arriving in Devon, which immediately enabled her to start eating again. After nearly 3 months of “relentless agony and begging”, oxycodone injections were also restored to a level that controls her pain.

This is like an oasis in the lonely desert for me… 💙🦋💙🎶

open.substack.com/pub/theredtr... Coming soon! Blue Sunday - The Online Concert for M.E. #MyalgicEncephalomyelitis #BlueSundayforME #pwME #MECFS

@swastrosarah.bsky.social just want to check in to say hi and see if you’re ok. It’s a tough month for our community but more voices are joining together and it’s beautiful to see us supporting each other. Always thinking of you too 💙🦋💙

A gentle reminder… I’d love to see even just one fellow #pwME at my session… so for those that can leave the house sometimes here’s a gentle reminder for those in the #Sunderland #Whitburn and #SouthTyneside areas of the NE ALL WELCOME! #CloudShrine #Sanctuary #Connection #Community #HEPA #PASC

This painting is the middle panel of a triptych titled "The Journey Home" (2017) by the late Chinese-Canadian artist Matthew Wong. Wong was a self-taught painter whose work gained massive acclaim shortly before his tragic death in 2019.

M.E. #MyalgicEncephalomyelitis One of the loneliest and most abandoned diseases on the planet that no one wants to know about. Share to support #pwME and our amazing, tenacious, beautiful, intelligent, and creative #community #MEawareness #MEawarenessMonth

Watch 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...

“She actually asked me a couple of times, you know, am I going to die? She felt so unwell.” Isla is 10 and developed #MECFS after a COVID infection. She is 95% housebound and just wants to “have fun and do things with her friends”. From BBC Lifeline: Action for ME

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

A gentle reminder for my next session,for those in #Sunderland well enough to attend £3 -all dates up until September now available to view, for those who have the luxury of being able to attend most things they pre-arrange in their calendars! #Souter #pwME www.nationaltrust.org.uk/visit/north-...

Hurry, hurry. Less than 2 weeks to go before the deadline for in-person registration to the Young EMERG symposium for early career researchers in ME/CFS (25th & 26th May), Hinxton Hall, Cambridge #pwME #MEcfs

Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026. The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below! 1/9 #MECFS #pwME #OpenCall #OnlineExhibition

"Hi, I’m Madeleine. I’m living with M.E. (MyalgicEncephalomyelitis - post-viral), Fibromyalgia, and symptoms of Long Covid. Since the end of 2008 I’ve been unable to join full classes without suffering the brutal consequences of PEM/PENE (Post Exertional Neuro-Immune Exhaustion)…

It's official ! I'm hoping between us we've done our best to avoid causing distress to anyone in our community because this is for those of us #pwME who are able to leave the house occasionally ... the event listing is now live: www.nationaltrust.org.uk/visit/north-...