All about #LongCovid paid work/not being in paid work #Benefits including energy limiting conditions: Dr Clare Rayner, Dr Jenny Ceolta-Smith and Pen Scribbler
Joined October 2023
- Tweets8.9K
- Following929
- Followers596
- Likes8.9K
Pinned Tweet
1/ We will add here links to resources for workers and stakeholders on #WorkingWithLongCovid some we were involved in.
These are mainly U.K. but some have transferability to other countries. Please share and tag us to other resources 🐝 #LongCovid
WorkingAndNotWorkingWithLongCovid retweeted
Good morning! Has anyone in the UK been successful in securing a Novavax booster privately? Folks here in Edinburgh have reached a dead end.
WorkingAndNotWorkingWithLongCovid retweeted
Disabled people can now report media coverage that scapegoats and stigmatises them and contributes to the hostile environment many of them face in their daily lives, thanks to a new campaign.
#InclusionLondon #DisabilityMediaAction
disabilitynewsservice.com/ne…
WorkingAndNotWorkingWithLongCovid retweeted
Why is there such a strong focus on categorising activities and justifying how people who have been assessed as eligible for #PIP spend it ? It’s Personal Independence Payment ie everyone has their own personal needs, wants & choices…
Chronically Ill and #DisabledPeople
#PIP
WorkingAndNotWorkingWithLongCovid retweeted
Excellent post by Supporting Healthcare Heroes here.
Note in particular the link to a booklet on this page.
This tells a powerful story about which every healthcare worker in Scotland and Wales needs to see.
And England N.I. beware - this travesty could come to you next...
😷 A surgical mask and a respirator are NOT the same thing.
A surgical mask is loose fitting.
A properly fitted respirator forms a seal and filters inhaled airborne particles.
So why is a surgical mask recommended for Covid-19 in some circumstances?
shh-uk.org/new-ipc-guidance-…
WorkingAndNotWorkingWithLongCovid retweeted
I'm going back to Chapter 1 of the @resfoundation report, #HardTruths, on #PIP
I started with Ch2 yesterday because I was interested in the claim that some PIP recipients don't need this. Sadly, I feel that RF just didn't collect enough data to allow them to make this claim.
WorkingAndNotWorkingWithLongCovid retweeted
I’d also like the authors to address the way in which thier report is being used to stigmatise claimants eg 👇
@CounsellingSam
xitter.cf/JCeoltaSmith/status/21…
@resfoundation & @_louisemurphy does the use of the word "confess" ⬇️ ( implying a claimant has done something wrong) fit with your permission to share conditions outlined in your report?
I see ethically concerns here and ask you address this please.
@johnpringdns
WorkingAndNotWorkingWithLongCovid retweeted
Please share ⬇️ Having to research university students with #LongCovid seven years in. We bet it's rare for #CleanAir within university environments, tell us if we are wrong...
Universities should be role models leading by example with evidence based policies
@LC_Physio
WorkingAndNotWorkingWithLongCovid retweeted
Studies comparing Long COVID and ME have found substantial overlap in symptoms, disability, and biology including PEM.
That doesn't mean these conditions are identical. But it does mean that decades of prior research may be relevant as a place to start.
6/ #LCWSymposium
WorkingAndNotWorkingWithLongCovid retweeted
Swiss Re Institute report.
The "Re" is for reinsurance -- they insure the insurance companies. So, when they say watch out for SARS-CoV-2 reinfection-induced hypertension, it is time to listen.
Tinyurl.com/swiss19
WorkingAndNotWorkingWithLongCovid retweeted
Long before SARS-CoV-2, researchers studying ME described the pattern of PEM based on what patients told them:
✅ Symptoms worsen after exertion
✅ Recovery is unusually prolonged
✅ Physical, mental, or activity can cause setbacks
✅ Worsened ability over time
5/ #LCWSymposium
WorkingAndNotWorkingWithLongCovid retweeted
Every infection avoided is one less illness to face and one less recovery to go through.
Prevention is most effective when multiple protective measures work together. Masking, improving indoor air quality, testing, vaccination, and reducing exposure in shared spaces all play a role in limiting the spread of respiratory infections.
Making prevention part of everyday life helps protect ourselves and our communities.
#PublicHealth #COVID #COVID19 #InfectionPrevention #DiseasePrevention
WorkingAndNotWorkingWithLongCovid retweeted
Welcome back for Day 2 of the 4th Canadian Symposium on Long COVID!
Today is another opportunity to explore emerging research, exchange perspectives, and strengthen connections across the #LongCOVID community.
Use the 2026 #LCWSymposium to share your experience so far.
WorkingAndNotWorkingWithLongCovid retweeted
For example, muscle studies in Long COVID have found abnormalities that became worse after exercise compared to healthy people.
Participants didn't just report feeling worse. Researchers observed biological changes that help explain why they felt worse.
8/ #LCWSymposium
WorkingAndNotWorkingWithLongCovid retweeted
PEM is not the same as being tired after exercise.
People with PEM can experience worsening brain fog, pain, dizziness, and other unusual symptoms after exercising.
The decline is often delayed and recovery can take days to months rather than mere hours. 3/ #LCWSymposium
WorkingAndNotWorkingWithLongCovid retweeted
Do you have Long Covid?
Do you know ppl with Long Covid?
Did you know that ppl with LC are REFUSED ACCESS to antiviral meds #Paxlovid in the UK?
Reinfections CAUSE MORE HARM.
Sign this petition asking that ppl with LC receive these meds when reinfected:
petition.parliament.uk/petit…
WorkingAndNotWorkingWithLongCovid retweeted
My son has just started uni. He’s studying History, Economics & Politics so 3 sets of lectures. So far he hasn’t seen any of his principle lecturers due to illness & now the cover lecturers are ill. He’s now watching lectures from his room because of the coughing in person 💀
WorkingAndNotWorkingWithLongCovid retweeted
🚨 NEW SHH-UK BOOKLET
Has IPC guidance in Scotland and Wales learnt the lessons of Covid-19? We compare the revised guidance with the evidence, health & safety principles & lessons from the Covid Inquiry. There are serious questions to answer.
shh-uk.org/new-ipc-guidance-…
WorkingAndNotWorkingWithLongCovid retweeted
🎓Ontario university students wanted to participate in a research study comparing the quality of life of students WITH & WITHOUT Long COVID, and exploring the experiences & supports needed for those with Long COVID to thrive academically & personally. uwo.eu.qualtrics.com/jfe/for…
ALT Poster advertising research study (dark purple text on light blue) with objectives to understand understanding of: (1) the quality of life of university students in Ontario with Long COVID compared to students without Long COVID; (2) the lived experiences of students with Long COVID; and (3) what students with Long COVID perceive as needed to support their well-being and academic success. To participate you must be enrolled full- or part-time at an Ontario University (undergraduate, graduate, professional degree), be able to read and write in English, and have access to an internet-connected device. For more information contact Varsha Vasudevan at [email protected] or Dr. Jennifer Irwin at [email protected]
WorkingAndNotWorkingWithLongCovid retweeted
Exercise is one of the most effective tools in medicine.
There’s an important exception: for some people with Long COVID, physical or mental activity can make symptoms significantly worse rather than better.
That is called post-exertional malaise (PEM). 2/ #LCWSymposium
WorkingAndNotWorkingWithLongCovid retweeted
From running for GB at the Tokyo Olympics to being bed-bound for 22+hours a day
Thank you for your testimony @BethDobbin 🙏
Post viral illness can happen to anyone. Stay safe all 😷
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx
