Compared to most other conditions leaving you debilitated for the rest of your life, #MEcfs is missing a vital moment, when a doctor diagnoses your condition, you break down in tears, and loved ones gather around to support you 1/2
#CFS#pwME#pwLC#GreatestMEdicalScandal
@mediumwhite@cin8di Timing Toast (Piet Hein)
There's an art of knowing when. Never try to guess. Toast until it smokes and then twenty seconds less.
Don't do more than you're safely able to recover from.
How much is safe?
What you recovered from.
And for today?
Much less than your best guess.
Forced programmes incompatible with the science on ME are killing people!
This story is heartbreaking.
Condolences to Mirjam's family.
A life stolen.
Stolen by governments' & insurance companies who've worked for decades to keep ME discredited as a psychological disease
#pwME
@hannahspierMD@dysclinic 1/Ok, perhaps your comment wasn’t as deliberately offensive as it appeared.
I think what you need to understand is that patients with ME/CFS, Long Covid & other PAIS are severely organically and physically unwell. This has been proven in science irrevocably. In the same way we
Hey it's me, Lena. I was one of the patients who did an interview about hope for @ChronicLiving1
As you might know I'm kinda the hope grinch, but I've tried to make it not that bad 😅
https://t.co/NbSIitx4xr
Former MI6 chief Sir Alex Younger on Brexit: “Putin would have been absolutely delighted by our decision.”
“So would Xi. France has effectively eclipsed us. Brexit has marginalised us.” Most striking of all: “Just nobody mentions the UK.”
Very sad that Sir Alex Younger, chief of the Secret Intelligence Service, born on July 4, 1963, died of pancreatic cancer on June 2, 2026, aged 62
If we look at ME there were 100's of behavioural studies for DECADES. Most of the research was behavioural! None of it worked.
We saw this in the NICE evidence review. ALL the evidence was low/very low in quality.
The point is this mistake should not be repeated for Long Covid
Sorry I’ve been quiet since, I’ve been in so much pain and PEM (still always surprises me how bad it’s possible to feel…)
Thank you so much for all the lovely responses🥹🤍 you guys are the best.
Hope everyone managed in the heat, and are doing as ok as can be. X
Well. I guess if you begin writing something with the end in mind, you may not know exactly how it’ll get there, but at least you know how it’s gonna wind up.
#pwME#pwLC
Which ME & Long Covid Support Groups, Orgs and Charities are you familiar with please?
Can also be local.
Hoping to create a BIG list HERE.
(Don't need to have URL)
I'll start with:
@LongCovidKids
(Primarily UK focus, but aware that many serving UK also Global)
Very proud that Tax Policy Associates is the first to publish research identifying a highly statistically significant correlation between the number of cheeses a country has and the number of taxes (p=0.0000000375).
This changes everything.
@catsocialintel@LongCovidKids@LongCovidAdvoc That's a good point Cat, thank you 🙏
I’m particulary interested in the ones that weren't on there, plus any other more local support groups too 👍
A man saw his phone storage was ''full'' after 18 months but he barely had any photos.
He had deleted apps. Cleared messages. Removed downloads. The warning kept coming back every two weeks:
"Storage Almost Full.''
He went to the Apple Store ready to buy a new iPhone.
The employee at the Genius Bar held up a hand: *"Before you spend a thousand dollars, let me show you something."*
She opened Settings → General → iPhone Storage and shook her head.
"There are 7 things eating your storage right now. Apple ships every iPhone with all of them turned on. Nobody tells you they exist. Let's go through them."
Here's what she showed him in the next 8 minutes. 🧵