STIMULATE-ICP News

Why are millions still suffering after having COVID-19 (Al Jazeera)

21 March 2024

 STIMULATE-ICP's Professor Nisreen Alwan has appeared on Al Jazeera discussing Long Covid, along with Long Covid researcher, Dr Mark Faghy, and a person living with Long Covid.

Bill of Rights

15 March 2024

Long Covid SOS, friends of STIMULATE-ICP, have created a Bill of Rights for everyone living with Long Covid.  The charity is calling on the government, NHS England and research funders to guarantee five basic rights for people with Long Covid symptoms, and there is a petition to support it and a template letter to send to your MP on their website too: https://www.longcovidsos.org/

STIMULATE-ICP Update

15 March 2024

Today 15th March 2024 marks International Long Covid Awareness Day. Work continues on the STIMULATE-ICP Study; the trial is ongoing and will carry on recruiting people with Long Covid to the study until July 2024. The trial is testing drugs, and in some locations, components of an “integrated care pathway”, including comprehensive MRI scanning and rehabilitation approaches. If you are interested in taking part, please see: https://stimulate-icp.org/faq

To date we have recruited over 1180 people to the study across 12 Long Covid clinics in England and Scotland. In addition we have completed the following "non-trial" aspects of the study:

• Used electronic health records in England to describe the prevalence of long-COVID symptoms among individuals seeking medical attention and explore the risk factors for having Long Covid; Prevalence, Risk Factors, and Characterization of Individuals with Long COVID Using Electronic Health Records in Over 1.5 Million COVID Cases in England (Value in Health)
• Characterised the health system burden of Long Covid; Healthcare Utilisation of 282,080 Individuals with Long COVID Over Two Years: A Multiple Matched Control Cohort Analysis (Pre-print)
• Conducted a Delphi Study to develop policy recommendations for care providers supporting people with Long COVID and other long term conditions; Integrated Care Priorities for Complex, Multi-System, Long-Term Conditions and for Long COVID: Results of the STIMULATE-ICP-Delphi Study Among UK Patients and Healthcare Providers (Pre-print)
• Explored current UK Care for Long Covid, looking at perspectives from people living with Long Covid and healthcare professionals in dedicated post-covid services (soon to be published)
• Published an entirely patient-led, designed and written e-book: Stolen Lives: The Reality of Living with Long Covid (Open Access Government)
• Determined the prevalence of organ impairment in long COVID patients at 6 and 12 months after initial symptoms, and explored links to clinical presentation; https://journals.sagepub.com/doi/10.1177/01410768231154703 (Journal of the Royal Society of Medicine)
• Developed an online tool for Long Covid support: long-covid-care.org.uk
• Co-produced a study with a Community Advisory Board of people with Long Covid to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid; Barriers to healthcare access: findings from a co-produced Long Covid case-finding study (Pre-print)
• Examined the Prevalence of mental health conditions and brain fog in people with long COVID; https://www.sciencedirect.com/science/article/pii/S0163834324000392 (General Hospital Psychiatry)
• Provided Evidence to the UK Covid Inquiry
• Contributed to The House of Lords Integration of Primary and Community Care Committee Report; Patients at the centre: integrating primary and community care

You can see our full list of outputs on our website: https://www.stimulate-icp.org/publications

Professor Amitava Banerjee and Dr Melissa Heightman, STIMULATE-ICP Co-chief investigators, and Mag L, patient representative and trial participant, give a video update on the study:

Launch of Online tool for Long Covid support 

15 March 2024

A website to support people living with Long Covid is being launched on Long Covid Awareness Day led by STIMULATE team member Professor Nisreen Alwan at University of Southampton, who has first-hand experience of the condition.  The online tool offers a symptom checker, advice on seeking support, and encourages people to talk about their symptoms with professionals, friends and family. It will be live at long-covid-care.org.uk from Friday 15 March 2024, the second annual International Long Covid Awareness Day.

UCLH Long Covid Clinic Features on BBC Radio 4 Inside Health

06 February 2024

BBC Radio 4 Inside Health visits the UK's first long Covid clinic at University College London Hospitals NHS Trust, and STIMULATE-ICP lead, to investigate "Why recovering from long Covid is a lot like training for the Olympics". Dr Melissa Heightman and Dr Emma Wall give an insight into the clinic from its beginning in a van in the hospital carpark to the specialist service run today, and look at the clinical and research challenges of the disease.

You can listen to the episode here: https://www.bbc.co.uk/sounds/play/m001vzy9

Lords Committee Reports that Integration is Key to Health Service Improvement

15 December 2023

The House of Lords Integration of Primary and Community Care Committee has published its report 'Patients at the centre: integrating primary and community care',  which was contributed to by STIMULATE-ICP's Delphi team, led by Professor Christina van der Feltz- Cornelis at the University of York.  The report highlights the need for a "seamlessly integrated patient-centric healthcare sector where patients are given the type of care they need, when, where, and how they need it."

You can read the full report here: https://publications.parliament.uk/pa/ld5804/ldselect/ldcareint/18/18.pdf  (PDF)

A summary of the report and alternative formats can be found here: https://committees.parliament.uk/committee/649/integration-of-primary-and-community-care-committee/news/198938/integration-is-key-to-health-service-improvement-says-lords-committee/

STIMULATE-ICP's patient advisor Antony Loveless features on BBC News

6 December 2023

Patient and public representative to STIMULATE-ICP, Antony Loveless, speaks to Hugh Pym on the BBC News on his own lived experiences of Long Covid, and reflects on Boris Johnson's testimony during the UK Covid Inquiry.

STIMULATE-ICP team member wins ISPOR Europe 2023 Presentation Award

4 December 2023

Dr Han-I-Wang of University of York has been awarded the best poster award for her presentation of research entitled, "Prevalence, Risk Factors, and Characterization of Individuals with Long COVID Using Electronic Health Records in Over 1.5 Million COVID Cases in England" at the the 2023 International Society for Pharmacoeconomics and Outcomes Research conference. The preprint can be found here: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4515876

BBC: "Long Covid triggered our MCAS, but doctors didn't believe us"

27 November 2023

The BBC reports on experiences of people living with Long Covid in the UK following the Covid-19 Inquiry last month. Professor Danny Altman references STIMULATE-ICP; read the story here: https://www.bbc.co.uk/news/uk-england-london-66998448

Trial Update

11 October 2023

As of October 2023, we are opening the trial to people with long COVID, regardless of when their long COVID started and whether they have previously sought treatment in long COVID services. In the sites where we are recruiting, a member of our study team will contact potential participants about the trial after referral to the clinic. Please speak to your GP about referral to your nearest Long COVID clinic/Post Covid Service.

To find out more, please see our patient-led video discussing the latest updates: https://www.stimulate-icp.org/resources  as well as further information on our FAQs page: https://www.stimulate-icp.org/faq

STIMULATE-ICP Colleagues and Team Members Give Evidence to the UK Covid Inquiry

13th October 2023

Team members Ondine Sherwood, Co-founder of Long Covid SOS, and Dr Rachael Evans, University of Leicester have given evidence to the UK Covid Inquiry.

Links to statements:

https://covid19.public-inquiry.uk/wp-content/uploads/2023/10/13171432/INQ000280198.pdf (Dr Evans)

https://www.covid19.public-inquiry.uk/documents/inq000280196-witness-statement-of-ondine-sherwood-on-behalf-of-long-covid-sos-dated-25-09-2023/ (Ondine Sherwood on behalf of Long Covid SOS)

Financial Times: UK’s Long Covid research under threat from regulator backlog, warn scientists

3 September 2023

STIMULATE-ICP and other Long Covid Studies in the UK risk running out of funds due to delays at the Medicines and Healthcare Products Regulatory Agency. STIMULATE-ICP's Professor Amitava Banerjee and Dr Emma Wall are quoted in the Financial Times.

Link to Article: https://www.ft.com/content/8ef390b4-2d57-42fa-9ac6-88c08307eade

UK Parliament Integration of primary and community care Inquiry

8 June 2023

STIMULATE-ICP's Delphi team at University of York have contributed to a UK Parliament Integration of primary and community care Inquiry.

Website: https://committees.parliament.uk/committee/649/integration-of-primary-and-community-care-committee/publications/written-evidence/

PDF: https://committees.parliament.uk/writtenevidence/120467/pdf/

Neurological Dysfunction in Long COVID Should Not Be Labelled as Functional Neurological Disorder

18 March 2023

STIMULATE-ICP's Professor Christina Van Der-Feltz-Cornelis and Professor David Strain have published a new article in Viruses, "Neurological Dysfunction in  Long COVID Should Not Be Labelled as Functional Neurological Disorder":

Website: https://www.mdpi.com/1999-4915/15/3/783

PDF: https://www.mdpi.com/1999-4915/15/3/783/pdf

The Long Haul of Long Covid: BBC World Service

28 February 2023

STIMULATE-ICP's Dr Emma Wall discusses the trial with Natasha Loder, health editor of The Economist in this BBC World Service interview: https://www.bbc.co.uk/sounds/play/w3ct56hd

Stolen Lives: The Reality of Living with Long Covid

28 February 2023

STIMULATE-ICP's team of patient advisors have today published an entirely patient-led, designed and written e-book detailing their experiences of living with Long Covid: Stolen Lives: The Reality of Living with Long Covid: https://www.openaccessgovernment.org/stolen-lives-reality-living-long-covid-coronavirus-anxiety-gp/153867/

The full e-book can be downloaded here.

Prof. Ami Banerjee features on Long Covid Podcast

24 February 2023

Professor Banerjee discusses STIMULATE-ICP with Jackie Baxter on the Long Covid podcast: They talk about the study design, patient involvement and how to participate in the study: https://www.buzzsprout.com/1835170/12209909

STIMULATE-ICP Trial Structured Protocol Paper

15 February 2023

STIMULATE-ICP new publication in PLOS ONE: STIMULATE-ICP: A pragmatic, multi-centre, cluster randomised trial of an integrated care pathway with a nested, Phase III, open label, adaptive platform randomised drug trial in individuals with Long COVID: A structured protocol: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0272472

STIMULATE-ICP Delphi Study Protocol published in PLOS ONE

30 November 2022

STIMULATE-ICP's Delphi Study Protocol has been published in PLOS ONE (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways Delphi): Study protocol

Long Covid: What's changed, and what we know now

18 November 2022

STIMULATE-ICP's Mel Heightman discusses Long Covid and STIMULATE-ICP with the BBC: https://www.bbc.co.uk/news/uk-england-london-63546138

New STIMULATE-ICP Video: Financial Implications of Long Covid

1 November 2022

STIMULATE-ICP's Patient and public representative panel have a very open discussion regarding the financial burden of long covid on the individual and society: https://www.youtube.com/watch?v=st5rqi5ufQk

Long Covid feature in the Guardian

13 October 2022

Patients share their testimony in the Guardian and Prof. Ami Banerjee discusses patient safety and unproven "cures" in the Long Covid space: https://www.theguardian.com/society/2022/oct/13/long-covid-patient-testimony?CMP=share_btn_tw

STIMULATE-ICP featured on BBC Lancashire

11 October 2022

Professor Ami Banerjee and patient advisor Antony discuss the STIMULATE-ICP study on BBC Lancashire this morning. The clinical trial is being led by University of Central Lancashire Clinical Trials Unit.  Listen from 2hr:09min:58 secs: https://www.bbc.co.uk/sounds/play/p0d1ymdw

Delphi Study: Survey 2 Open

10 October 2022

As part of the Delphi Study, Survey 2 is now open for responses. You can contribute to this survey if you are a patient with Long COVID or another long-term condition, or if you are a clinician providing treatment for Long COVID or another long-term condition https://york.qualtrics.com/jfe/form/SV_1LF6AeRx6r4Gjum

Long COVID lessons learned beyond the pandemic

4 October 2022

Members of the STIMULATE-ICP Team discuss the study and lessons learnt beyond the COVID-19 pandemic in Open Access Government.

STIMULATE-ICP Long Covid Active Case Finding in pre-print

26 August 2022

STIMULATE-ICP Pre-print: Long Covid active case finding: a co-produced community-based pilot within the STIMULATE-ICP study

How Covid left me permanently disabled

19 August 2022

Antony and Clare, patient advisors on the STIMULATE-ICP Study, feature in the Sunday Times via Antony's YouTube channel and on the Times website (paywall). 

New Publication: STIMULATE-ICP Care Inequalities Protocol Paper

16 August 2022

New Study Protocol Published in PLOS ONE: Defining usual care and examining inequalities in Long Covid support

STIMULATE-ICP Trial Structured Protocol Paper in pre-print

25 July 2022

STIMULATE-ICP Pre-print: A pragmatic, multi-centre, cluster randomised trial of an integrated care pathway with a nested, Phase III, open label, adaptive platform randomised drug trial in Long Covid: a structured protocol

New Video: Long Covid Care

13 July 2022

Patient representative Kim discusses the evaluation of Long Covid care which forms part of the STIMULATE-ICP study in our latest patient video. Joining her are chief investigator, Professor Ami Banerjee and mixed methods researcher Dr Mel Ramaswamy at UCL's Institute of Health Informatics.

New Video: Health Inequalities and Long Covid

13 July 2022

We have released another patient-led video on our Resources page.  Patient representative Mag talks to Dr Nisreen Alwan who is leading the Inequalities workstream of STIMULATE-ICP.

**Call for further NHS sites to join STIMULATE-ICP**
12 July 2022

We are looking for further sites to join the team and deliver the trial in further geographical locations. If you are a large NHS site,  secondary care, please contact our clinical trial manager, Denise Forshaw: dforshaw@uclan.ac.uk

Professor Banerjee speaks to the Guardian ahead of trial

10 July 2022

Professor Ami Banerjee discusses the possible link between COVID and blood clots in the Guardian.

Independent SAGE: Long Covid

17 June 2022

Professor Ami Banerjee discusses Long COVID in the latest briefing by Independent SAGE.

Long Covid discussed on BBC R4 Today

07 June 2022

Professor Ami Banerjee stresses the physiological nature of Long Covid on BBC R4's Today programme (from 2 hours 50min).

Long Covid? Don’t fall for quick-fix ‘cures’

24 May 2022

Professor Ami Banerjee and Dr David Strain warn against private clinics offering Long COVID cures in the Daily Mail.

New Publication from UCLH Post-COVID Service: Impaired exercise capacity in post-COVID syndrome

11 May 2022

As UCLH Post-COVID service enters its third year, it publishes a new paper: Impaired exercise capacity in Post-COVID Syndrome: the role of VWF-ADAMTS13 axis. The Team found  evidence of a strong association between increased vWF:ADAMTS-13 ratio and exercise intolerance in non-hospitalised adults post COVID-19. Authors include members of the STIMULATE-ICP team: Dr Emma Wall, Dr Melissa Heightman, Dr Toby Hillman and Dr Hakim-Moulay Dehbi.

Pre-Print: Defining usual care and examining inequalities in Long Covid support: protocol for a mixed-methods study

09 May 2022

STIMULATE-ICP new publication in pre-print: https://www.medrxiv.org/content/10.1101/2022.05.06.22274658v1

Independent SAGE

22 April 2022

STIMULATE-ICP's Prof Paula Lorgelly, Professor of Health Economics  discusses Long COVID in the latest briefing by Independent SAGE.

Delphi Study: Survey 1 Open

07 April 2022

As part of the Delphi Study, Survey 1 is now open for responses. You can contribute to this survey if you are a patient with Long COVID or another long-term condition, or if you are a clinician providing treatment for Long COVID or another long-term condition: https://york.qualtrics.com/jfe/form/SV_eaPn3BgzBTrtEk6.

Prof. Van Der Feltz-Cornelis: Delphi Study Interview

07 April 2022

Professor Christina Van Der Feltz-Cornelis discusses STIMULATE-ICP and the Delphi Study on BBC Radio York: https://www.bbc.co.uk/sounds/play/p0bvmfth   at 2:09:39

STIMULATE-ICP Delphi Project

31 March 2022

Work is underway on the Delphi project which is a sub-study of the STIMULATE-ICP project. Please see the Delphi Project page for further information.  A link to the survey will be published very soon.

Multi-organ impairment and Long COVID

21 March 2022

New paper in pre-print:  Multi-organ impairment and Long COVID: a 1-year prospective, longitudinal cohort study  

Long Covid: Expert Panel

09 March 2022

Prof. Amitava Banerjee discusses why Long Covid is the UK's next health crisis in a panel of experts hosted by The Independent.  

Researching own lived experience: break the taboo! 

24 February 2022

In her latest blog Dr Nisreen Alwan invites fellow researchers to reflect on why they might consider someone with a lived experience of a health condition researching it more biased than someone without.

New Years Honours 2021 to Dr Nisreen Alwan

8 February 2022

We celebrate the STIMULATE-ICP Team's very own Dr Nisreen Alwan, associate professor in public health at Southampton University, who was made an MBE for services to medicine and public health during Covid-19. Today Nisreen received her award at Windsor Castle: link to Evening Standard

Evidence-Based Medicine and Long Covid

27 January 2022

The Team discusses evidence-based medicine in our latest video.

New video: Trials and Long Covid

27 January 2022

The next video in our discussion series looks at trials and Long Covid.

Long Covid: Britain has underestimated its impact"

12 January 2022



Read Prof. Amitava Banerjee's latest opinion piece in the Guardian.

New video: Microclots

7 January 2022

We have launched a new 'Resources' section on our study site which will contain predominantly topical information videos for patients, public, health professionals and researchers relating to Long COVID. We will also share relevant papers here.  Please view our first video in the series: Microclots.

Long Covid: Why do some people have symptoms months after infection?

4 January 2022

Professor Amitava Banerjee comments on the Long Covid crisis in the Financial Times.

Long Covid: 'I have to choose between walking and talking'

26 December 2021

STIMULATE-ICP patient co-investigator Jasmine Hayer gives an insight into the realities of living with Long COVID: BBC

Long Covid: A global problem needing a global solution

16 December 2021

Read our piece in: Open Access Government

Promotion of non-evidence-based therapeutics within patient-led Long COVID support groups

10 December 2021

This letter (Nature) expresses concerns about misinformation and calls for a code of conduct for promoting use of drugs in patient support groups.

Understanding and tracking the impact of long COVID in the United Kingdom

22 November 2021

See how the STIMULATE-ICP study fits with other funded studies to investigate long COVID in Nature.

Update to potential participants

17 November 2021

Please read update letter to potential participants on the STIMULATE-ICP trial.

Long Covid: new wine in need of new bottles

9 November 2021

Prof. Amitava Banerjee's new opinion piece on long COVID published in the BMJ. Finding solutions to long COVID will require new ways of thinking across clinical services and research.

Team Vacancies

1 November 2021

The STIMULATE-ICP Study is delighted to share the following vacancies on our team:

University of Southampton: Research Fellow

Full time, Closing date: 17th Nov 2021  Find out more

University College London (UCL): Research Fellow in Health Economics

Full time, Closing date: 14th January 2022 Find out more