Living Not Existing

Reaching out to others with ME/CFS. Learning to live a new life after Sepsis.

Rarely here now, you can find me over on the Blue place 🦋

[Living Not Existing @livingnexisting]

On this journey, one of the things that has helped me the most is hearing from others who are going through the same thing.
CFS is a cruel, cruel illness. But there are ways to still live a good life. Looking to share tips and experiences with the experts (us!).

[Living Not Existing @livingnexisting]

@CaroleBruce17 It's been organic for me. My feed is not what it used to be and I have been coming here less and less.
Wishing everyone would migrate as you see all the posts of who you follow there. Trick seems to be to follow as many people as poss. Starter packs are great for finding people

[Living Not Existing @livingnexisting]

@Oshunsprite @JoyInTheSeasons @livewithmecfs Missing you all, can I tempt you over to BlueSky? It's lovely over there. Worth bagging your handles before others do at least?

[Living Not Existing @livingnexisting]

@SkyNews @RestIsPolitics @GwynneMP Lots of places to find more info @SonyaChowdhury @ahandvanish @MEAssociation @ABrokenBattery's timeline.

@RestIsPolitics Hope this has helped with the research, I'm sure others will have good resources to share.
https://t.co/hfvfCGj39c

[Adam @ABrokenBattery]

@SkyNews Little is known about #MECFS because 30 years have been wasted on psychological research & bad science.

NICE only withdrew the ineffective & harmful treatments in 2021.

George Monbiot described it as the Greatest Medical Scandal of the 21st century.

https://t.co/IKXV2SloYf

[Living Not Existing @livingnexisting]

@SkyNews @RestIsPolitics Under Sajid Javid a plan for ME was set up. New govt set to deliver the final plan this winter @GwynneMP
(There is a lot of crossover between LC and ME hence why I am conflating both in these comments!)
https://t.co/yqLWEQ9bHb

[Living Not Existing @livingnexisting]

@SueBookByBook @simonschuster I only discovered this book a couple of years ago. Absolutely loved it. Really took me to what it must have been like to live life in the wild west.

[Living Not Existing @livingnexisting]

OK, so it seems like it happens every year. They've been at it again the last few days. I now think they may be actually be Jackdaws...

[Living Not Existing @livingnexisting]

The advantages of tweet records. It appears the rooks (apparently crows are solitary so these must be rooks) were non-stop crowing this time last year too.

Anyone know why they might be so noisy right now please? What's causing all the excitement? @LevParikian @ChrisGPackham

[Living Not Existing @livingnexisting]

This series of #LongCovid articles by The Guardian are so good.

I just wish more people would see them.

Covid still doing the rounds - do we know what the current chance of ending up with Long Covid is after a Covid infection? How many more are going to end up disabled?

[The Guardian @guardian]

‘A 30-second walk would exhaust me beyond reason’: Natacha’s life with long Covid https://t.co/0eX2FfcjO2

[Ravi Veriah Jacques @RaviHVJ]

I help run a discord group for young adults (18-33) with #LongCovid and #MECFS, and we're looking for new members. It's a really lovely little community - we've been going since late 2021. DM me to get a link to join. Please retweet and share widely!

[Living Not Existing @livingnexisting]

Terrific article. You get it. In fact you could be speaking for me here with your collated response of an amalgam patient.

Pneumonia and sepsis 7 years ago took my old life away #MECFS

There are so many of us, yet so few people know or understand. Thank you.

[sam wollaston @samwollaston]

I met brilliant Lucy Keighley, one of 2 million in the country living with long covid
https://t.co/kY0AFZQUUw

[Living Not Existing @livingnexisting]

"Every so often you’d meet someone + they would be interested. Ask how you were. It was never the people you expected it to be. they always turned out to have been around loved ones who had been ill, or to have been ill themselves." #MECFS

[Jim Robottom @jimrobottom]

I wondered whether I would do this, when the time came. But there don’t seem to be many tales of him as a person going round. And, for reasons that will become apparent, I’ll always be grateful. So anyway here it is:

A 🧵on the personal kindness of @Keir_Starmer

[Nate Bear @NateB_Panic]

Scientists have found what they call 'the master regulator' of the immune system in the human brain. If it holds up it's a stunning discovery that could transform treatments for autoimmune disease and post-viral illnesses. What did they find, and how?🧵

[Living Not Existing @livingnexisting]

'The mechanisms by which the brain sends signals back to the immune system to regulate inflammation remain unclear. “We’re just scratching the surface” '

But still this does look encouraging 🤞

[Herbert Renz-Polster @RenzPolster]

This could well be the most important finding relevant to #MECFS and #LongCovid ever:
https://t.co/TOOif7g75L

[Living Not Existing @livingnexisting]

@CaroleBruce17 @GeorgeMonbiot @guardian Absolutely

[George Monbiot @GeorgeMonbiot]

It's heartbreaking and devastating to hear the testimonies on this platform today of so many ME/CFS patients who have been disbelieved, abused and mistreated for years and years.
A great injustice has been done. To put any part of it right, first it must be acknowledged.
#pwME

[Carole Bruce @CaroleBruce17]

Excellent links throughout this article by ⁦@GeorgeMonbiot⁩ Click on them and all HCPs and journalists would have an almost complete education on the history and current situation surrounding #ME CFS
⁦@NHSuk⁩ ⁦@SMC_London⁩ ⁦@rcgp⁩ https://t.co/OmxIl5jpvR

[Living Not Existing @livingnexisting]

OMG

Thank you, thank you, thank you for writing this @GeorgeMonbiot

Please let attitudes be changing at long last.

[George Monbiot @GeorgeMonbiot]

It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell.
A massive and shocking story in this week’s column.
https://t.co/apoW7uFGJS

[Living Not Existing @livingnexisting]

@spoonless_me @hopefullizzy All the time! And it's been 7 years for me with ME now, you'd have thought I'd have learned by now.