Swiftsandswallows

@swiftsandswallows.bsky.social
My daughter had Severe ME/POTS & MCAS and died in 2024
I am also a parent and carer of a younger daughter with ME & POTS

[Swiftsandswallows @Swiftsswallows]

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

[#MEAction Scotland @meactionscot]

CONTENT WARNING

Isla was only 18 years old when she died in May. She had been ill with ME since 6, later with POTS & MCAS. Her family say she faced disbelief & neglect from many professionals. Things have to change for ME patients

#VerySevereME #POTS #MCAS Andrew Gwynne MP

[Adam @ABrokenBattery]

“People with ME have sadly had to endure far too much disbelief and delay.”

Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @Invest_In_ME 2026 International ME Conference #IIMEC18.

[Memorial ME Victims R.I.P. @MemorialME]

🕯️#RIP Mirjam Knapp
* 08.12.1999 - † 28.04.2026

Mirjam wurde mit 14 zwangseingewiesen, auf grausamste Weise aktiviert u. misshandelt, nur durch die Hilfe von Dr. Speight durfte sie nach 20 Mon. wieder heim.
Sie starb an #VerySevereME.🖤

In Gedanken bei ihrer Familie.💔

[EndMalnutritioninME @MalnutritionME]

#ME patients admitted to hospital for tube feeding are typically extremely ill, nursed at home in a darkened room. A hospital stay can be devastating for these patients, so #reasonableadjustments need to be made to prevent relapse.
#DietitiansWeek
#EndMalnutritionInME

[Smile For ME @SmileForMEUK]

We've sent our 2000th Smile. Thank you to everyone who has made this possible. Your support means more than words can say. We would not be able to do what we do without the kindness you show us. Thank you for helping us send 2000 Smiles. We’re looking forward to sending many more

[Emma Mitchell 💙 @silverpebble]

A couple of cornflowers in a field near Wicken, Cambridgeshire and a little leafcutter bee gathering pollen for her babies from a cornflower in my garden. As ever my photos & videos are designed to dial down stress & lift your mood-a break from angst while you scroll 🌿:

[Long Covid Advocacy 💙 @LongCovidAdvoc]

Dr Elinor Cleghorn on the catastrophic framing of ME as a mass hysterical incident in the US & UK.

We had a truly fascinating discussion - highly recommended.

To watch the whole interview link 👇

[EndMalnutritioninME @MalnutritionME]

Digestive symptoms are very common in people with #ME, whether mild, moderate, or severe.
In #severeME they can lead to malnutrition.
We need research into gastrointestinal symptoms in ME and better clinical care to #EndMalnutritionInME
#WorldDigestiveDay

[Swiftsandswallows @Swiftsswallows]

@TanteRos It's really pretty x

[Swiftsandswallows @Swiftsswallows]

@WickedWilfy @useless_priest @TraceyABurgess 🫂

[Neurologist Mom @NeurologistMom]

Today my daughter turned 18. I wrote this article with a sense of relief, while still carrying all the trauma on my back.

"When Doctors Suspect the Parent Instead of the Disease: Parents Silenced Under Threat"

[Swiftsandswallows @Swiftsswallows]

Our Isla rose is blooming. It was bought for us by a kind neighbour the week after Isla died 💔

[Swiftsandswallows @Swiftsswallows]

@silverpebble Found it! It's beautiful and thank you for the dopamine hit x

[Swiftsandswallows @Swiftsswallows]

@hopefullizzy I'm so pleased for you. I can imagine the physical cost but can also imagine how wonderful it felt to experience the sights, smells and sounds of nature 💙

[Karen Hargrave @karenlhargrave.🦋.social @KarenLHargrave]

I spoke to @theipaper recently about the battle I’ve faced the past two years covering the spiralling costs of James’ care.

Since the interview our local authority has offered a new care package that will take the pressure off - but still doesn’t reflect James’ 24/7 needs.

[Swiftsandswallows @Swiftsswallows]

@MEFoggyDog @PHU_NHS 🫂

[Katy B @KatyBruce108]

@ompsychiatrist There's a power imbalance which isn't being acknowledged, we currently have seriously ill #pwME in @NHSuk hospital who're being denied life saving healthcare because of a deliberate misinformation campaign targeting #ME All Drs have a responsibility to educate themselves about ME

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

Think of it like a charity bake sale but for a home made oil rub ☺️

Sadly, there are so many people in our community with ME and/or long covid who are not in safe housing and are too severe to advocate for themselves. @onbeing_ill is one of them & appreciates any help or RTs 🩵

[Ror Preston @RorPreston]

The disease ME/CFS

1) it has one of the worst qualities of life of any chronic disease

2) it also has one of the most severe impacts on the lives of family members (equal or worse even than dementia on average)

3) it is *horrifically* underfunded, given it's huge disease burden

Also a great candidate for AI

@DeryaTR_ @fidjissimo @cstroeckw @amyrochlin

[Rachel @rachelleese84]

Hey @DrOscarDuke please spend 5 minutes researching devastating incurable diseases before pretending to be an expert on TV. Chronic fatigue syndrome is NOT the best way to describe it. It’s not “what’s going on” at all. My life has been destroyed by ME. My friends are dying.

[Neurologist Mom @NeurologistMom]

“Iatrogenic PTSD: When Healthcare Becomes the Source of Trauma”

This is the term I suggest for describing what many chronic complex disease patients develop after repeated dismissal, invalidation, and gaslighting by healthcare professionals.