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Nikki Smith @nikki-s.bsky.social · 2d

The Cardiff site for the PHOSP-I study is still open for recruitment!

If you have #LongCovid and are interested in this trial for the drug Tocilizumab (targeting inflammation), then do contact:
[email protected]

Long Covid Support @longcovidsupport.bsky.social · 2d

📣 Mae treial triniaeth #CovidHir sy'n recriwtio ar hyn o bryd yng Nghaerdydd!

Mae astudiaeth PHOSP-I yn profir cyffur Tocilizumab, sy'n targedu llid.

Os oes gennych Covid Hir a diddordeb mewn cymryd rhan, cysylltwch â:
[email protected]

#Cymru

Dolen i'r gwefan:

www.phosp.org/phosp-i/

PHOSP-I. Ro'n i'n nerfus iawn yn cymryd rhan ond diflannodd fy mhryderon. Mae'r tîm ymchwil mor garedig ac yn ofalgar.
Roedd fy lles i yn flaenoriaeth. Maent yn gofalu amdanaf ym mhob apwyntiad. I fod yn onest, aeth y tîm y tu hwnt i ddisgwyliadau.
Rwy'n falch imi gymryd rhan a byddwn yn ymuno â threial arall yn y dyfodol yn sicr.
- Cyfrannwr yn yr astudiaeth PHOSP-I
Dysgwch fwy am wneud cais i ymuno â'r astudiaeth PHOSP-I:
www.phosp.org/phosp-i/

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Reposted by Nikki Smith

Long Covid Support @longcovidsupport.bsky.social · 5d

1/3. 🔥Next Fireside Chat from @binitakane.bsky.social and Long Covid Support’s @helenoakleigh.bsky.social🔥

‘Updates from the Santa Fe #LongCovid Symposium’ with guest @daltmann.bsky.social.

YouTube Live: Wednesday 8th October 2025, 6pm UK time.

More details and link below ⬇️

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Nikki Smith @nikki-s.bsky.social · 8d

@ruairidhm.bsky.social @catinthehat.bsky.social @covidsolidarity.bsky.social @scribblerpen.bsky.social @profhelenward.bsky.social @revansbreathe.bsky.social @daltmann.bsky.social @longcovidkids.bsky.social @longcovidsos.bsky.social @joplatt.bsky.social @alitwy.bsky.social

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Nikki Smith @nikki-s.bsky.social · 8d

Proud to have been involved in this work! Not surprised by this major under-recording of #LongCovid in healthcare records but it proves that using healthcare records/coding as evidence of the number of p/w Long Covid is substantially inaccurate…and downright dangerous.

Long Covid Support @longcovidsupport.bsky.social · 9d

📣 1/4. Paper out from the UK’s LOCOMOTION study on incidence of #LongCovid diagnosis.

🚩 Huge under-recording of Long Covid in primary healthcare records!

Big thank you to our Members & co-authors @nikki-s.bsky.social & @ruairidhm.bsky.social for their hard work🙏

Link to paper on below 🧵 ⬇️

Screenshot of research paper title and authors. Header says Health Expectations Open Access An International Journal of Public Participation in Health Care and Health Policy. Below this it says Original Article Open Access. The title of the paper is Understanding the Clinical Characteristics and Timeliness of Diagnosis for Patients Diagnosed With Long Covid: A Retrospective Observational Cohort Study From North West London. The list of authors reads Denys Prociuk, Jonathan Clarke, Nikki Smith, Ruairidh Milne, Cassie Lee, Simon de Lusignan, Ghazala Mir, Johannes De Kock, Erik Mayer, Brendan C. Delaney, LOCOMOTION Consortium. It is dated as First Published on 25 September 2025. The reference is https://doi.org/10.1111/hex.70429.

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Reposted by Nikki Smith

Long Covid Support @longcovidsupport.bsky.social · 29d

1/4 This morning, the UK Covid-19 Inquiry opened Module 9: Economic Response, looking at how government decisions in the early years of the pandemic affected people’s lives. Dr Lucy Moore and Nigel Rothband, Chairs of @longcovidsos.bsky.social and Long Covid Support, were present.

🧵👇

Two people stand in front of white building either side of a blue sign. On the left is a man with glasses in a grey suit. On the right is a woman with warm brown short hair wearing a grey coat and navy trousers. The blue sign says 'UK COVID-19 INQUIRY. Hearing centre'

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Nikki Smith @nikki-s.bsky.social · Aug 28

“Researchers called for urgent expansion of #LongCovid care…and for integration of disability data into early-warning systems.
They also urged global health agencies to prioritize vulnerable groups for rehabilitation services, research funding, and surveillance infrastructure.”

CIDRAP @cidrap.bsky.social · Aug 27

Years lived with disability may signal #long-COVID risk, global researchers say

Of the 10 countries with the highest rates of years lived with disability in 2021, 80% were in the low, low-middle, and middle Socio-demographic Index categories.

www.cidrap.umn.edu/c...

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Reposted by Nikki Smith

Long Covid Support @longcovidsupport.bsky.social · Aug 23

📣 Are you conducting research into #Covid19 or #LongCovid?

Our Research Involvement Consultancy is here to help!

✅ Recruitment

✅ Study design

✅ Patient & Public Involvement & Engagement

Find more information on our website - link below ⬇️

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Reposted by Nikki Smith

Long Covid Support @longcovidsupport.bsky.social · Aug 18

1/3. APPG on #LongCovid - July meeting minutes available.

▶️ Guest speaker Prof. Chris Brightling joined discussions on accelerating Long Covid research on drug targets/therapeutics.

▶️ Actions identified re. Covid vaccine eligibility, public health messaging & safe air.

Link below in comments ⬇️

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Nikki Smith @nikki-s.bsky.social · Aug 1

“Dormant cancer cells are like the embers left in an abandoned campfire, and respiratory viruses are like a strong wind that reignites the flames”

#Covid
#Cancer

www.independent.co.uk/news/health/...

Covid and flu can awaken ‘sleeping’ cancer cells, scientists find

New research suggests that respiratory viruses could cause these dormant cancer cells to multiply

www.independent.co.uk

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Nikki Smith @nikki-s.bsky.social · Aug 1

“Respiratory illnesses such as Covid and the flu can awaken dormant #cancer cells in the body and cause them to spread, scientists have warned.”

Read more - link below ⬇️

#LongCovid

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Nikki Smith @nikki-s.bsky.social · Jul 28

Great news, congratulations!!

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Reposted by Nikki Smith

Nigel Rothband @nigelrothband.bsky.social · Jul 21

Delighted to have attended my first meeting of the #APPG on Long Covid last week in my new role as Chair of Trustees at @longcovidsupport.bsky.social It was a pleasure to meet @joplatt.bsky.social and take part in a discussion on how we can accelerate research into Long Covid. #LongCovid #APPG

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Nikki Smith @nikki-s.bsky.social · Jul 14

I’ve seen several research papers that purport to have identified different symptom clusters/groups that p/w #LongCovid fall into. But I never seem to fit into just one, I seem to be a multi-group kind of gal, which begs the question - how accurate are those groupings?!! Anyone else?

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Nikki Smith @nikki-s.bsky.social · Jul 3

It’s crazy, isn’t it.

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Nikki Smith @nikki-s.bsky.social · Jul 3

@1goodtern.bsky.social @covidsolidarity.bsky.social @catinthehat.bsky.social @andreabarrett.bsky.social @gina25.bsky.social @starseeker.bsky.social @damesa.bsky.social

Nikki Smith @nikki-s.bsky.social · Jul 3

At the Cardiology Unit at Wexham Park Hospital this morning - I should be pleased that they have this sign up.⬇️
However, I’ve seen no one else in a mask.

Wouldn’t it be lovely if the staff actually set an example @frimleyhealth.bsky.social?

#LongCovid
#WearAMask

Sign headed with Public Health England and NHS logos. Title is Staying safe from coronavirus while you are in hospital.
Text reads:
People with coronavirus can have very mild or no symptoms at all. This means they can spread the virus to other people without knowing.
We provide care for vulnerable people and our staff see lots of patients each day. It is important we all take responsibilly for reducing the spread of coronavirus.
We want to keep you, your family, other patients and our staff safe. Because we care, we might ask you to do things differently while you are here.
Keep hands clean.
Coronavirus and other viruses and bacteria can stay on surfaces for some time. To protect yourself and your loved ones, please wash your hands with soap and water or use hand sanitiser as often as possible. Try not to touch your face (mouth, nose, eyes) as this is an easy way to spread the virus.
Wear a mask.
Wearing a mask reduces the risk of you passing coronavirus to other parents and staff, so please wear your mask to protect others while you are here. Even if you don't have any symptoms, it is important you wear your mask properly (covering your nose and mouth) at all times. If you can’t wear a mask for any reason, please talk to your care team about what to do. If you have a carer or visitor coming to see you, they will also be asked to wear a mask or face covering to protect us all.
Make space for others.
As well as wearing a mask we all need to remember to make space for other people. Leaving at least two metres between you and other people is one of the main things you can do to reduce the risk of catching or spreading coronavirus.

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Reposted by Nikki Smith

Kiran Stacey @kiranstacey.bsky.social · Jun 26

BREAKING: Full details of those welfare bill concessions:

1) Only cut benefits for new claimants
2) Spend billions more on employment support
3) Consultation on PIP cuts, with changes to be made at committee stage

Full story here: www.theguardian.com/politics/202...

Starmer offers ‘massive concessions’ on welfare bill to Labour rebels

Exclusive: Leading rebels say they have been promised significant changes to planned cuts which could help bill avoid defeat

www.theguardian.com

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Nikki Smith @nikki-s.bsky.social · Jun 26

I thought all was rather quiet from them too, but then discovered their Amendment!

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Nikki Smith @nikki-s.bsky.social · Jun 26

The Lib Dems have tabled their own Amendment:

Steve Darling
Ed Davey
Daisy Cooper
Sarah Olney
Claire Young
Edward Morello
Tom Morrison
Manuela Perteghella
Mr Will Forster
Munira Wilson
Vikki Slade
Mike Martin
Marie Goldman
Dr Danny Chambers
Cameron Thomas
Olly Glover
lan Sollom
Victoria Collins
John Milne
Helen Morgan
David Chadwick
Alex Brewer
Liz Jarvis
Ben Maguire
Sarah Gibson
Christine Jardine
Charlotte Cane
Tessa Munt
Steff Aquarone
Rachel Gilmour
Adam Dance
Martin Wrigley
Brian Mathew
Zöe Franklin
Freddie van Mierlo
Monica Harding
Max Wilkinson
Pippa Heylings
Andrew George
Calum Miller
Sarah Dyke

That this House, while acknowledging that the amount of money currently having to be spent on welfare is too high, declines to give a Second Reading to the Universal Credit and Personal Independence Payment Bill because it does not introduce fair reforms to sustainably and effectively support more people into work; it makes it harder for disabled people who are already employed to remain in work, by cutting Personal Independence Payment, which covers help with essential daily tasks such as washing and preparing meals; because it withdraws support for people who are simply unable to work due to chronic health issues or disabilities; because it will remove Carers Allowance from 150,000 unpaid carers, whose tireless work supports some of the most vulnerable in society and fills the gaps of health and care systems; because cutting support for disabled people will worsen the cost pressures facing the NHS, social care and local government, likely resulting in a false economy; because it does nothing to tackle the root causes of the rising welfare bill, including chronic ill-health, young people's mental ill-health and the crisis in the NHS and social care; because it comes at a time when disabled people's income is being stretched by high energy, heating and food costs; and because according to the Government's own impact assessment, it will lead to an additional 250,000 people, including 50,000 children, falling into poverty by 2029-30.

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Nikki Smith @nikki-s.bsky.social · Jun 26

“Ableism is so real within the government in totally misunderstanding what our troubles are.” - 8x Paralympian Gold Medalist @sophiechristiansen.bsky.social

#TakingThePIP
#WelfareReformBill

Big Issue @bigissue.com · Jun 26

Three Paralympians join calls for the government to urgently reverse its plans for disability benefit cuts as a rebellion continues to grow.

Paralympic champions blast Labour over disability benefit cuts

www.bigissue.com

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Nikki Smith @nikki-s.bsky.social · Jun 26

👇

bsky.app/profile/scri...

Scribbler Pen @scribblerpen.bsky.social · Jun 26

🚨#Labour MPs, please don't fall for fake "concessions" on the #WelfareBill.
There is only *one* #PIP activity descriptor that scores 3 points: "Needs assistance to be able to get in or out of a bath or shower." All else scores 2, then 4, then up.
This won't change eligibility cuts.
#TakingThePIP

Nikki Smith @nikki-s.bsky.social · Jun 26

Tabled Amendment by the Lib Dems ⬇️

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Nikki Smith @nikki-s.bsky.social · Jun 26

They’ve tabled their own Amendment, rather than adding more strength to this one.

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Nikki Smith @nikki-s.bsky.social · Jun 26

bsky.app/profile/scri...

Scribbler Pen @scribblerpen.bsky.social · Jun 26

🚨#Labour MPs, please don't fall for fake "concessions" on the #WelfareBill.
There is only *one* #PIP activity descriptor that scores 3 points: "Needs assistance to be able to get in or out of a bath or shower." All else scores 2, then 4, then up.
This won't change eligibility cuts.
#TakingThePIP

Reposted by Nikki Smith

Scribbler Pen @scribblerpen.bsky.social · Jun 26

🚨#Labour MPs, please don't fall for fake "concessions" on the #WelfareBill.
There is only *one* #PIP activity descriptor that scores 3 points: "Needs assistance to be able to get in or out of a bath or shower." All else scores 2, then 4, then up.
This won't change eligibility cuts.
#TakingThePIP

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