Polly Patterson

Author, Advocate & Patient.
Severe Post-Viral Dysautonomia, ME & MCAS (long COVID)
Writing Wrongs from the Sickbed.
Exposing the UK Post-Viral Care Scandal...

[Polly Patterson @PollyPAuthor]

@robsmit54519473 @easyJet @Ryanair Sounds awful, Rob. I had no idea! I'm not able to go anywhere so I've not the experience but that doesn't sound great!

[Polly Patterson @PollyPAuthor]

New article out now!

Let's get the most dangerous myths and misconceptions surrounding severe chronic illness and disability out of the shadows and into the spotlight.

Please share your experiences in the comments at the bottom of the article (if comfortable and it won't be detrimental to your health). I hope to keep these Chronicles of Chronic Misconceptions going more regularly if they resonate.

Completely free to read, share, and comment. No pressure - just advocacy, solidarity and care. 💚 🔗 https://t.co/ML1qW4EEtA

[Polly Patterson @PollyPAuthor]

@cfs_jo Just be careful if you already have difficulties retaining water. It can draw water into the muscles that you may otherwise need for volume expansion if you have those problems. I've heard good things in others but didn't do me any good with significant hypovolemia

[Polly Patterson @PollyPAuthor]

@CandyFleckGothm Very true - as if we've never considered "eating healthily" or "cheering up"... 🙄🙄

[Polly Patterson @PollyPAuthor]

@robsmit54519473 Good one Rob, I've added it for the next one!! Thanks for reminding me - it's repeated and nauseum isn't it

[Polly Patterson @PollyPAuthor]

@tsaw140482 I'm sorry he struggles but I am so glad he has amazing drs, it just makes the world of difference! 💚

[Polly Patterson @PollyPAuthor]

@crazyzombienerd Yes getting up slowly is definitely recommended!!💚

[Polly Patterson @PollyPAuthor]

Got me ma coming up today to sit next to me in bed as an "early birthday do", of sorts. Wasn't sure how it would work out given yesterday felt like I'd been eating lead sandwiches for a week. But gods be good, today seems at least better than yesterday and the world seems a bit brighter. Let's hope after an hour of conversation I can say the same...

#longCOVID #dysautonomia #ME #disability #invisibleillness #chronicillness

[Polly Patterson @PollyPAuthor]

@alijmold Oh Alison, I'm so very sorry. I'm thinking of you and sending love and best wishes. I hope you are able to have some moments of peace and comfort. Lots of love

[Polly Patterson @PollyPAuthor]

@crazyzombienerd Everything crossed it helps ����🫰

[Polly Patterson @PollyPAuthor]

@crazyzombienerd Partly but it's very easily triggered. Hope you're well 💚☺️ thanks so much

[Polly Patterson @PollyPAuthor]

@NoHealthNoFun Same to be honest.

[Polly Patterson @PollyPAuthor]

@NoHealthNoFun Hmmmmmm is it evil to think that if a few more of these people found out the hard way, things might finally change?

[Polly Patterson @PollyPAuthor]

@NoHealthNoFun Is this person a real doctor, or is he the medical equivalent of Jack Black slipping into supply teaching in School of Rock?

[Polly Patterson @PollyPAuthor]

@CounsellingSam Affirmative

[Fe. @NoHealthNoFun]

After 4+ years, I can still only walk a few hundred meters.
For my doctor, it’s because I’ve convinced myself I can’t.

There’s no discussing with these practitioners. It’s a cult. They’re only good for non-LC related stuff and to fill in forms for the insurance.

[Polly Patterson @PollyPAuthor]

@crazyzombienerd Thanks was nice. 💚 I mean feeling heavily poisoned

[ME Foggy Dog @MEFoggyDog]

Fabulous 👏 #pwME

[Tom Kindlon @TomKindlon]

“French state health insurance updates classification of chronic fatigue [syndrome]”

“Illness is no longer classified as psychological”

https://t.co/CVk3ySlGYj

#MEcfs #CFS

[Polly Patterson @PollyPAuthor]

Gutted, but you're doing the right thing to protect yourself and your family/health. I will miss the informative and sometimes dramatic nature of the exchanges and feel a patient/carer's voice against behaviouralisation being silenced, is terribly sad. Hope we can connect on your personal profile 💚

[Polly Patterson @PollyPAuthor]

@Salliepops @DrAnnieHickox 🙄🙄🙄🙄 it's sadly so unsurprising. Well done on setting boundaries though, many people (like myself) were convinced GE was the right thing to do, then found out the hard way. I hope you get proper support asap 💚

[Aimee Hirayama ME/CFS @aimee_hirayama]

@c3vvno Yes. Severe ME, OH/PoTS, hEDS and severe asthma. ME was precipitated by severe nerve injury plus pregabalin taper. Still hate the pregabalin but can’t risk coming off it because of dangerous withdrawal even with tiny tapering.