Swiftsandswallows

My daughter Isla suffered so much, ill with ME from age 6, told to push through the pain to get better, years of deterioration and disbelief. Involvement of Social Services because of concerns of Fabricated Illness and later her MCAS symptoms put down to anxiety. She died in May

@hopefullizzy So sorry to hear this Lizzy 🫂💙🫂

As a couple of you know, I’m back in hospital. Have been here a week, some incredibly poorly moments where mum stayed with me overnight. Stabilised a little. Back in my usual room, usual ward (thankfully because although the staff on AMU were brilliant, being in a bay was hard)

@Sally_writes That's beautiful. I've never seen one that colour before

Our neighbours had an incredible magnolia tree and on the days I was well enough to peek into our street, it made my day. And then they cut it down So we planted our own. Waited three years. Thought it would never bloom. And then, this week, came two pink buds

@Dan_Wyke 🫂

Even so, a casual observer would have found it hard not to draw the conclusion that I - prostrated by severe #MyalgicEncephalomyelitis - was the one with less time to live. 2/2 #MECFS #severeME

My brave, loyal father, who has stage 4 cancer and just months to live, visited me yesterday for what surely will be one of our last times together. He was visibly tired as he sat by my bed and talked to me about his walk along the seafront in the spring sunshine. 1/2

People with #LongCovid, #MECFS and similar conditions don’t get the recognition and funding they deserve — @DrAmirKhanGP Unless decision makers have been personally affected, it’s almost as if they think ‘it won’t happen to me’ — @ZackPolanski

@KSchnickelfritz 🫂💙🫂

Poor planning. Had a FaceTime with daughter at 9.30. Went on longer than I should have but it’s been a while. Came off it frazzled. Had a rest. Realised there was no way I could FaceTime my mum at 11am. So my mum loses out. Shitty #ME.

@KatyBruce108 @MEResearchUK 💙

Thinking of everyone & sending love & support on Mother's Day, it's one of the very hardest days for #pwME & those close to us I'm making a small donation to @MEResearchUK today, we urgently need treatments for #ME & to alleviate the terrible suffering in this community💗

Happy Mothering Sunday. Thinking of everyone celebrating, aching or adjusting. 💕

@SarahOC_MECFS 🫂

#Covid destroyed my family's health I should feel lucky that I 'only' have moderate ME I should feel lucky everyone in my close family knows the disease isn't psychological I should feel lucky my son 'only' has moderate #LongCovid I don't feel lucky #LongCovidAwareness #pwME

NICE found “considerable” evidence of patient harm from graded exercise therapy, some “quite devastating”. They also found harms were poorly reported in #MECFS clinical trials. web.archive.org/web/2024062311…

From Cortney Gensemer PhD We #pwME have been bombarded with unregulated misinformation for decades. This is often intentional. There is scientific evidence but it doesn’t add up to a conclusive biomarker so the people who benefit from spreading the misinformation go unchecked 😡

@Sally_writes Aw that looks fab. She'll wear it with pride xx

Is it ok to buy your mum a Mother’s Day present that technically also serves you? 🫣 Bought this for my mum to wear when she sells my books at markets. In my defence, she did say she needed a new one 😅 Look at all the characters on the back, yay!

Four significant events over the past 5 years which were all meant to lead to radical change in the understanding of #ME & the care of #pwME That change isn't happening, government & the NHS fail us & the BPS cabal push back at every potential breakthrough. #MEAwareness

@TanteRos @AndrewG76201347 💙🫂💙

I had a moment of my reality slapping me in the face y'day. I was talking to my carer about a way of paying for petrol that was new to me. Credit card at pump. I said I'm behind the times, it's 10 yrs since I've been out'. Then it hit me. 10 f*ing years. Unimaginable to me. #pwME

@Sally_writes Graham is gorgeous, you definitely need to get one x

Stumbled across a potato called Graham We lost my beloved potato-OBSESSED dad of the same name a couple of years ago. It’s a sign, isn’t it?! Think I better get one

It makes no economic sense for governments and Drs to go on denying this especially since #LongCovid has increased the number of #ME patients enormously. We could be working, paying taxes, contributing to society instead of being ignored in darkened rooms. SM our only weapon 😭

@CaroleBruce17 Aw how lovely x

Just had a brief chat to my postman who keeps delivering next door’s post here. I explained briefly that I couldn’t take it round to next door. He apologised with a big smile and said, ‘is there anything else I can do for you?’ It’s made me cry…#kindness

For International Women's Day (IWD) ME Research UK has written about the delay in ME/CFS research due to systemic prejudice against women, known as 'medical misogyny'. Read more: tinyurl.com/y2f5f4jx #IWD2026

@KatyBruce108 @Klang764 @ABrokenBattery Happy Birthday Adam. Hope you have the best day possible

@ABrokenBattery wishing you the happiest birthday possible Adam. So grateful to you for being here & for all that you do for us all 💙

Thinking of chronically ill women throughout the world today who are living in war zones, fighting to be recognised and generally just surviving. Thanking women worldwide who are striving to find cures and treatments. #InternationalWomensDay2026

Today is International Women’s Day. Thank you to all of the women in our lives making the world a better place. #InternationalWomensDay2026