Noodles 🇧🇪 🇸🇪 🇺🇦

I'm @[email protected] on #Mastodon! Come follow me at

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

This 👇
#pwME #MECFS

[Tom Kindlon @TomKindlon]

I was fortunate to experience a nice family #BlueSunday2026 #TeaPartyForME2026 celebration yesterday in aid of the Irish ME/CFS Association @IrishMECFSAssoc
https://t.co/uHNRUeto9T

Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏

[Carole Cadwalladr @carolecadwalla]

Absolutely agree with this Guardian editorial. Authors must be protected from big tech!

But so must journalists.

Guardian needs to shine light on its own management which has done exactly this to 1000s of Guardian freelancers & contributors.
1/

[Christoph Ströck @cstroeckw]

ME/CFS might be the deadliest “non-fatal” disease there is. Most of the people with my level of severity I had short exchanges with over the last decade are gone now. There’s so much more wrong with this than I can put into words.

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

@FionaPWME @TomKindlon @RACGP @RACGPPresident I completely agree.

Going back to the diabetes comparison, it would be like talking about "food consumption preference" of diabetics. Then, mocking them for avoiding a hyperglycaemic event.

It is absolute madness from the experimenter.

[Larry the Cat @Number10cat]

Congress did its homework on Nigel Farage:

[Channel 4 News @Channel4News]

ME, or Myalgic encephalomyelitis, is linked to your genetics, an early study by Decode ME has suggested.

They’ve found eight areas of genetic code in people with ME are ‘significantly different’ to the DNA of people without the disease.

The results still need to be reviewed, but the University of Edinburgh research team hope these results will pave the way for future research and the development of drugs.

[DecodeME the ME/CFS Study @DecodeMEstudy]

TW: Severe M.E.

“the data backs up what many people with ME/CFS say: that they feel invisible and ignored.” - Professor Chris Ponting

🚨 Please note that this article is behind a paywall

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

@Number10cat That's the first thing I said. JD has the Liz curse.

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

This is a message I needed to hear when I was down. For some of us, not only do we have to carry the burden of our disability, but we also have to live with the trauma of bad psychological treatment.
I hope this image helps others.
#pwME
Background image from Shutterstock.

[Ava-Santina @AvaSantina]

Looks like Mother of the House Diane Abbott was not able to attend meeting yesterday with Keir Starmer re proposed PIP cuts:

[Diane Abbott @HackneyAbbott]

I would have liked to query Keir Starmer at last night's meeting of the Parliamentary Labour Party about the impact of his proposed cuts to welfare.
Unfortunately I and other colleagues were told the meeting was full.
Keen on dissent in other countries. Not so much here.

[DecodeME the ME/CFS Study @DecodeMEstudy]

"What the research field now needs most urgently, says Ponting, is a robust scientific foundation…DecodeME, the largest ME/CFS study to date, is now taking a step in this direction in GB" https://t.co/7Zqj27tGJS To read in English, open in Chrome & use the translate function.

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

@TomKindlon The answer can be, "no that is the correct assessment"

It isn't unheard of that I make mistakes. It's just my gut is telling me we need to refine the diagnosis criteria for PEM.

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

@TomKindlon Is it just me, but would this question would not find people like me which takes 24 hours after the symptoms start:
Because they should tailor immediately after vs some time after.

Is this why they confuse PEM and deconditioning?

[Dr Nicola Clague-Baker @ClagueNjc36]

Please share widely. We are really interested in the experiences of athletes with #ME and #Longcovid for masters level projects. Please support @NiamhLHeeran and @ElaKlaveness and all #physios to understand your experiences @LongCOVIDPhysio @long_covid @MEAssociation @MEActNetUK

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

@AvaSantina There might be. You never know how much protein you get in your food...

https://t.co/vcVgjS2BIN

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

@Keir_Starmer Now, if we could fix the standard appointment issues and access to NHS dentitsts, maybe we wouldn't need as many urgent appointments.

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

@WoollerEmma @ABrokenBattery There are vile comments about pensioners.

I didn't see the full list.

[Noodles 🇧🇪 🇸🇪 🇺🇦 @feather1]

@keithgeraghty @clanman3 Elon quotes other people; you are safe.

We do need more funding.