Writer, Advocate & Patient. Severe Post-Viral Dysautonomia, ME & MCAS (long COVID) Writing Wrongs from the Sickbed. Exposing the UK Post-Viral Care Scandal...
UK
Joined August 2026
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Polly Patterson retweeted
This really does tally with my experience of ME. I experience it very much as a neurological disorder. Very like a concussion or TBI. If only there were a way of influencing these specific cells and parts of the brain.
For some #MECFS researchers the brain is still a secondary avennue😲
Decode ME used a platform developed by Finuncane et al to analyze gene expression asking: which tissues and cell types are involved in various diseases. Here you go (thanx @mecfsskeptic
mecfsscience.org/cell-and-ti…
I've just set up a Bluesky account to post my articles and follow people who've left X etc: @pollypauthor.bsky.social
X will still be my main platform though because, although it might disappoint a certain trillionaire to think disabled and severely unwell people are finding a home on his network, I can't thank my lucky stars enough for all the friends have met here. I'm adding people manually too, but failing to find lots of you. So if you're ever on there, please feel free to give me a follow and I'll of course follow you back. No pressure tho.
Sorry about any potential incoherence: I'm sure many of you can relate to night time pharmaceutical fog.
Lots of love 💚
p.s photo attached of Rocky jumping up and down like he was on a pogo stick as I ate my chicken dinner
#LongCOVID #dysautonomia #POTS #chronicillness #MECFS #disability
Polly Patterson retweeted
#DearAndy
We've written to @andyburnham
about Olympic sprinter @BethDobbin recent outreach to him.
Features: Dickens, Monbiot, disease prestige & twiglets!
🖇️ 👇 Link below
ALT Graphic with the headline “Dobbin & Goodburn: A Tale of Two Cities” and subtitle “A letter to Andy Burnham” in bright pink on a navy background, featuring a photograph of Andy Burnham in a circular gradient frame.
Polly Patterson retweeted
This week, I received my first dose of Anktiva (N-803) for Long COVID as part of a clinical trial!
Feel free to ask me anything. I’ll be sharing updates on my progress and experience as time goes on!
@DrPatrick @Av8rLady @longcovidlabs @ImmunityBio @COVID19_disease
Polly Patterson retweeted
Thanks to all who responded. COQ10 only helpful in ~ 1/4 of us. Disappointing given it’s considered one of the best-evidenced supplements. The real issue is we need well-evidenced drugs & we need them prescribed. We shouldn’t be left with a serious disease but only DIY healthcare
#pwME Of those of you who have tried COQ10, did it:
(Comments specifying which symptoms improved/worsened welcome)
24%Improve symptoms?
7%Worsen symptoms?
69%Have no effect?
162 votes • Final results Polly Patterson retweeted
From Ali Barrett who lives with severe #ME
We want to actively protest against the wanton and chosen cruelty of all those in power who believe and act on their spurious belief that ME is psychosomatic. However they frame it, that is their core belief despite all the proof. 🤦♀️
Polly Patterson retweeted
"What it’s like to be masking in 2026"
"In which I answer the burning question everyone is asking – 'why are you still masking in 2026'?"
nannyogg63.substack.com/p/wh…
She has ME/CFS and asthma herself but it's a general article
#masking #MaskUp
ALT What it’s like to be masking in 2026 In which I answer the burning question everyone is asking – “why are you still masking in 2026”? Krista (she/her/goddess) Sep 28, 2026 Caption: woman on right wearing lavender trifold KN95, man on left wearing black version of same mask. Caption: woman on right wearing lavender trifold KN95, man on left wearing black version of same mask.
Polly Patterson retweeted
#MECFS #LongCovid @ThereForME_UK
Electric blankets give away for vulnerable people struggling to stay warm over winter.
Learnt about this today octopus.energy/blog/free-ele…
Inspired by the amazing Beth Dobbin and the woeful uptake of ME/CFS training by healthcare professionals in the NHS, I've been working on trying to consolidate everything policymakers and open-minded healthcare professionals need to know into a five-minute video.
If you think it's of use, please feel free to share it with whomever. 💚
Please remember, I'm bedbound and using my very limited spoons on paced advocacy work instead of hobbies I can no longer do, because I passionately believe in change for all of us. Grace and constructive engagement are always appreciated. 💚
#MEcfs #LongCovid #FND #MyalgicEncephalomyelitis #NHS #PublicHealth #MEawareness
Today's article takes a look at the hottest topic in Neurology right now: Functional Neurological Disorder (FND) 🧠
- Where did it come from?
- What is it?
- How is it diagnosed in theory?
- How is it diagnosed in practice?
- Has the biopsychosocial model returned in a shiny new outfit?
As always, it's free to read and voiceover is available (link in first repy⬇️)
Please consider subscribing for free to "The Post-Viral Papers" to get my articles directly to your inbox.
Feel free to share your thoughts in the comments!
Happy Sunday 💚
#FND #chronicillness #disability #MECFS #LongCOVID #Dysautonomia #invisibleillness
Polly Patterson retweeted
Outrageous response from @DHSCgovuk who're content to leave >1.3 mill sufferers of a "devastating illness" w zero treatment indefinitely. Many sufferers can't even access standard healthcare, a right everyone else in the UK enjoys
The plan & research funding changes nothing
1/n
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamental inaccuracies within it.
Please also bear with me; I’ve had an extremely large amount of messages and I’m operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
Polly Patterson retweeted
#pwME Of those of you who have tried COQ10, did it:
(Comments specifying which symptoms improved/worsened welcome)
24%Improve symptoms?
7%Worsen symptoms?
69%Have no effect?
162 votes • Final results Polly Patterson retweeted
We're happy to share that we now have an MP briefing live (joint with Action for ME) which you can send to your MP to give them all the info they need to support @BethDobbin in her campaign for increased ME research funding.
You can find the briefing and our template 👇
Polly Patterson retweeted
If we could drop the word ‘fatigue’ from being the leading definition of #ME it would make a huge difference to the whole perception of this illness. People don’t die or take their own lives because they are fatigued. The name CFS was a political decision, a very dark decision.
Polly Patterson retweeted
Totally agree. Fatigue isn’t a big problem for me outside of PEM. Almost the opposite. I’m restless & alert but acting on anything causes devastating PEM. Even emotions. To call this state ‘fatigue’ is ridiculous. Health professionals know near nothing about it.
If we could drop the word ‘fatigue’ from being the leading definition of #ME it would make a huge difference to the whole perception of this illness. People don’t die or take their own lives because they are fatigued. The name CFS was a political decision, a very dark decision.