
SMi Audhd Csa Survivor CPTSD Co chair mental health ED’s UEC pathway Lived experience adult mental health team advisory network @NHSEngland @EquallyWellUk
Norwich England 🏴☠️
Joined October 2017
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CoProduction Norfolk retweeted
I wrote this lived experience article to highlight why experiential knowledge must be valued in eating disorder care. I ask professionals to “be our therapeutic allies while we put our faith in you.” Please read and share if this matters to you also: link.springer.com/article/10…
CoProduction Norfolk retweeted
Persistent Cerebral 18-FDG PET Changes in Patients With Long COVID Presenting With Fatigue and Post Exertional Malaise
🚨We already knew Long COVID brain damage could last 6 months.
Now this new PET scan study proves it’s still there at 2 YEARS and counting.
Hypometabolism hits the left sensorimotor cortex (movement + body sense), left superior parietal (spatial awareness + attention), and bilateral visual cortex (raw sight processing).
This is NOT just “tired.”
This is a broken sensory-motor command center.
Is this the start of a lifelong neurological disease?
➡️Mayo Clinic observational cohort study of 40 Long COVID patients (70% female, median age 53) from a specialized clinic who underwent brain 18F-FDG PET-CT scans 17–149 weeks (median 62 weeks) after SarsCoV2 infection,
➡️73% had predominant fatigue with post-exertional malaise (PEM),
➡️This group showed statistically significant cerebral hypometabolism vs. non-PEM patients in the left sensorimotor cortex (p=0.0253), left superior parietal cortex (p=0.0276), and bilateral primary visual cortex (p=0.0096 and 0.0016),
➡️Abnormalities persisted already up to ~2 years post-infection,
➡️Scans used pons-normalized Z-scores against age/gender-matched controls with common comorbidities included psychiatric, GI, and cardiovascular conditions,
➡️Caveat: No references to vaccination status and/or reinfections,
➡️Authors propose 18F-FDG PET-CT as a potential diagnostic and therapeutic biomarker for the fatigue/PEM phenotype of Long COVID.
‼️So, AGAIN, Long COVID fatigue and PEM have a demonstrable, persistent neurological signature! Cerebral hypometabolism, still detectable on PET scans up to two years later and hits the left sensorimotor cortex (movement + body sense), left superior parietal cortex (spatial awareness + attention), and bilateral primary visual cortex (raw sight processing).
This isn’t just “tired.”
It’s a broken sensory-motor command center.
😡Study proves LC is biologically real, not psychosomatic or any other stupid FND diagnosis.
Without urgent validation of this biomarker and targeted therapies, patients will continue to be dismissed despite objective brain damage!
#AvoidSars2 #AvoidReinfections #BrainDamage
journals.sagepub.com/doi/10.…
CoProduction Norfolk retweeted
I have organ damage from Covid. Ignorant people be like:
IT’S VACCINES!
No. I had Covid in March 2020.
Pre-vaccines.
YOU WERE OLD OR UNHEALTHY!
No. I was 39, fit & healthy.
(Not that it should matter.)
IT’S RARE!
No. 400 million worldwide.
So far.
healthdata.org/research-anal…
CoProduction Norfolk retweeted
Governments know that Covid is causing brain damage, even in mild cases.
CoProduction Norfolk retweeted
I wonder if she has tried accessing MH services when you are struggling?
I wonder if she knows what a private MH session costs?
(£80-100 per hour)
CoProduction Norfolk retweeted
End Disability Hate Petition
I’ve done it.
I’ve launched a petition calling for a **National Disability Hate Strategy for the UK**.
And I want to explain why.
Because I am sick and tired of disabled people being treated as acceptable targets.
Over the last few years, I have watched the language around disability get uglier and uglier.
Scrounger.
Fraudster.
Fake.
Workshy.
A burden on the taxpayer.
We see people being questioned because they can stand up from a wheelchair.
Challenged because they use a Blue Badge but don't "look disabled".
Judged because they have a Motability car.
Accused of faking because their disability fluctuates.
And disabled people are increasingly expected to prove themselves to complete strangers.
I've experienced disability abuse myself.
But through this platform, I've also heard from so many of you who have experienced it.
And then there's the way disability is discussed publicly.
We've seen headlines portraying disabled people and benefit claimants as a problem to be solved.
We've seen endless conversations about who's *really* disabled, who's *disabled enough*, and who deserves support.
We've even reached the point where politicians are publicly talking about distinguishing between people with "severe" disabilities and everybody else.
Words matter.
Because disability hate doesn't suddenly begin when somebody commits a hate crime.
It starts with stigma.
It starts with suspicion.
It starts with misinformation.
It starts when society is repeatedly told that disabled people are costing too much, claiming too much or somehow getting something everybody else is paying for.
And eventually somebody thinks it's acceptable to challenge that wheelchair user.
To abuse that Blue Badge holder.
To film somebody getting out of their Motability car.
To call somebody a benefit scrounger.
Or to send abuse to a disabled person online.
So I'm asking the Government to develop and fund a **National Disability Hate Strategy**, co-produced with Disabled People's Organisations.
Not another conversation *about* us.
Something created **with us**.
Something that looks at prevention, education, policing, online abuse and support for people who experience disability hate.
Because disabled people should not have to prove their disability to strangers.
We shouldn't be frightened of using the support we're entitled to.
And we shouldn't have to accept abuse as simply part of being disabled.
The petition is now live.
petition.parliament.uk/petit…
Please sign it.
Please share it.
And if you've experienced disability hate yourself, tell people why you're signing.
Because the more of us who speak up, the harder we are to ignore.
**Disabled people are not targets.
And disability hate should never be normal.** @paulapeters2 @relish_hendy @1kilroywashere @TheMeldrew @hewitson10 @RachelCDailey_ @TheCanaryUK @mssocietyuk @GMCDP @InclusionLondon
CoProduction Norfolk retweeted
This anti face covering rhetoric is discriminatory @GMB Why are these two even on here talking about it? What’s their expertise? And why did they both go off on a tangent from balaclavas to all face coverings?
Some of us have to wear respirator masks for health @kategarraway ???
A severe bout of COVID-19 can wake up an army of dormant viruses hiding inside the body
go.nature.com/4fQZTCZ
CoProduction Norfolk retweeted
Call for participants! We want to provide evidence to the government about why people are seeking a diagnosis of autism and/or ADHD for themselves or people they support, and their experiences of the assessment process. More info/take part here: autismaction.qualtrics.com/j…
WE NEED YOU! Today, we are launching our most ambitious community survey yet, and we need to hear from as many of you as possible to have the biggest impact.
The Government has data about how many people ask for autism and ADHD assessments, but it doesn't have good evidence about why. This missing data means the Government doesn't understand the rise in demand for assessment.
Our survey will bring the reality of your lived experience directly to the Government.
If you, your child or someone you support has been on a ADHD or Autism waitlist at any point over the last 14 years, we want to hear from you.
You’ve waited long enough. Let’s make sure your experience is finally heard.
🔗 Take part here:autismaction.qualtrics.com/j…
Help us reach as many people as possible by sharing this post!
#AutismAction #Autism #ADHD #Neurodiversity
CoProduction Norfolk retweeted
Emily contracted #SARSCov19 aka Covid when she was 9 years old.
She is unvaccinated and was happy, healthy & full of energy.
As a result of the 1 “mild” infection 🤧 Emily is now disabled.
She now uses a ♿️ and is struggling with her mental health.
Watch video👇🥲💔
CoProduction Norfolk retweeted
"If you enjoy seeing an animal terrified or in pain, you are a cunt." - Ricky Gervais
CoProduction Norfolk retweeted
“People don’t realise that what I’m saying will come to pass,” @ElonMusk tells The Economist in an interview. That may be because his future-gazing ranges from the unsettling to the downright weird economist.com/business/2026/…
CoProduction Norfolk retweeted
Andy Burnham has edged further towards clarifying his policy on DWP reform, taking a step away from blaming disabled claimants but still failing to acknowledge the safeguarding risks of the sanction-heavy approach he appears to favour.
#AndyBurnham #DWP
disabilitynewsservice.com/bu…
CoProduction Norfolk retweeted
He wants a technology that he expects to determine the future of humanity to lie in the hands of a few people like him, each with their own values. But his largely institution-free regulatory proposal is flimsy and self-serving economist.com/leaders/2026/0…
CoProduction Norfolk retweeted
AI is charging ahead. Not even its creators—including @elonmusk—know how to keep up bit.ly/4vPwi2L





























