Behind the Mask: The Reality of Living with Long Covid
9 April 2024
STIMULATE-ICP patient and public advisor and trial participant, Mag, opens up about the reality of living with Long Covid. For support with living with long covid please see online tool developed by the STIMULATE team at University of Southampton, which offers a symptom checker, advice on seeking support, and encourages people to talk about their symptoms with professionals, friends and family: https://long-covid-care.org.uk/
Please note that this video contains an honest account of the toll of living with a long-term condition and contains reference to suicide.
Samaritans provide 24 hour support, every day of the year to anyone who is struggling: www.samaritans.org or call 116 123
Online tool for Supporting Long Covid Care
15 March 24
A website to support people living with Long Covid has been 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. You can access the website at: https://long-covid-care.org.uk/
Update on STIMULATE-ICP
15 March 24
Today on International Long Covid Awareness day, STIMULATE-ICP co-leads, Professor Ami Banerjee and Dr Melissa Heightman, discuss how the study is progressing with Mag L, patient advisor and trial participant.
You can find out more about taking part in the STIMULATE-ICP Study at: https://www.stimulate-icp.org/faq and contact us via: info@stimulate-icp.org
A 3 Month Update from Mag, a Drug Trial Participant
19 February 24
Mag gives an update after 3 months of treatment as part of the STIMULATE-ICP drug trial. You can read more about the trial on our
FAQs page. If you would like to speak to Mag directly about her experiences or have any questions you'd like to ask her, please contact us at
info@stimulate-icp.org
and we'll put you in touch.
What can you expect as a participant in the drug trial?
29 January 24
Mag describes her experiences of participating in the STIMULATE-ICP drug trial and talks through what you can expect if you take part. You can read more about the trial on our
FAQs page. If you would like to speak to Mag directly about her experiences or have any questions you'd like to ask her, please contact us at
info@stimulate-icp.org and we'll put you in touch.
Updates to the Trial
11 October 23
Rachel Hext, patient advisor to STIMULATE-ICP, discusses the latest updates to the trial with co-chief investigators Professor Ami Banerjee and Dr Melissa Heightman.
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. Additionally it is now possible to participate in the trial on the drug-only arm of the study. Furthermore new long COVID sites are joining the team in: Oxford, Royal Berkshire, Tameside and Glossop and Sheffield. Please note that it is not possible to self-refer to the trial. Recruitment is via participating Long Covid clinics. You can read more on our FAQs page.
Dr Heightman references the Commissioning Guidance for Post Covid Services (11min 55sec) which could be useful to patients in their conversations with GPs. The document is located here:
https://www.england.nhs.uk/publication/national-commissioning-guidance-for-post-covid-services/
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.
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.
Some of the services referred to in the video are as follows:
- GP: Social Prescriber attached to the surgery who can put you in touch with an advocate, someone who can help with completing forms, for example Personal Independence Payment (PIP) application form.
- Citizens Advice Bureau: https://www.citizensadvice.org.uk/
- DIAL
Drugs in Long Covid and other issues in the trial
11 September 2022
Patient representatives Kim and Lyth discuss the drugs being tested in the trial and why they were chosen, along with other aspects of the trial. The paper Dr Emma Wall references at 4m28s can be found here: https://ashpublications.org/bloodadvances/article/6/13/4041/485206/Impaired-exercise-capacity-in-post-COVID-19
The trial design and pathway for trial participants
09 September 2022
Patient representative Kim talks to the STIMULATE-ICP Trial team about the design of the trial, how participants are allocated to pathways and who is eligible to take part in the trial.
Delphi Study
26 August 2022
Patient representative Emily talks to Professor Christina van der Feltz-Cornelis who is leading on the Delphi Study within STIMULATE-ICP.
Long Covid Care
14 July 2022
Patient representative Kim discusses the evaluation of Long Covid care which forms part of the STIMULATE-ICP study. Joining her are chief investigator, Professor Ami Banerjee and mixed methods researcher Dr Mel Ramaswamy at UCL's Institute of Health Informatics.
Health Inequalities and Long Covid
13 July 2022
Patient representative Mag talks to Dr Nisreen Alwan who is leading the Inequalities workstream of STIMULATE-ICP.
Trials and Long Covid
27 January 2022
Professor Amitava Banerjee, Dr Mel Heightman and Mr Lyth Hismeh discuss trials in the Long COVID space.
Evidence-Based Medicine and Long Covid
26 January 2022
The next in our series of topical information videos related to Long Covid. This time Professor Amitava Banerjee, Dr Mel Heightman and Mr Lyth Hismeh discuss Evidence-based Medicine and Long COVID.
Microclots
7 January 2022
This is the first in a series of topical information videos for patients, public, health professionals and researchers relating to Long COVID. In this first video, three members of the STIMULATE-ICP team (Professor Amitava Banerjee, principal investigator; Dr Melissa Heightman, co-principal investigator and clinical lead, and Mr Lyth Hismeh, public and patient involvement and engagement team) discuss microclots, recent research from Professor Resia Pretorius’ group and implications for further research and clinical practice.
We have referred to two papers by Professor Pretorius’ team, as follows:
Pretorius Card_Diab_2021 (PDF)
Pretorius 2021_triple therapy_preprint
(PDF)
