Thread by @DrMark_Faghy

A thread for our new research project looking at Post Exertional Malaise/Post-Exertional Symptom Exacerbation in #LongCovid

🧵

1) We know that exercise in people living with #LongCOVID can lead to PEM & PESE. To better understand why this happens and to develop support strategies, we want to look in more detail at what causes this.

2) We have developed a study over 18 months with our patients, research, and clinical experts from around the world to develop an individualised 2-day cardiopulmonary exercise test (CPET) that will allow us to investigate exactly what is happening with the body’s physiology.

3) Of utmost importance is patient safety and collecting data in a controlled environment. This project will allow us to collect scientific evidence of what happens to patients' physical, cognitive, mental, biological and symptom profiles before, during and after an exercise test

4) This includes learning about what happens to patient symptoms in the days after engaging in testing. To do this we will use existing technologies to track and monitor changes in your symptoms.

5) We will be able to use this information to increase our understanding of possible treatments and interventions that can support patients and hopefully improve patient outcomes.

6) To help on this project, we are looking for people with #LongCOVID from the Derby/Derbyshire, Sheffield, and Newcastle areas to come forward and be screened for this trial.

7) To ensure your safety, we have developed a strict inclusion criterion and will only recruit people who do not demonstrate severe/very severe PEM (determined during screening) after engaging in physical/mental tasks.

8) Your safety and peace of mind are paramount to us, and we have #COVID-19 mitigations in place to address this. All equipment is cleaned and sterilised between visits, facilities are air-conditioned and have ventilation and staff will use LFT and FFP2 masks

9) You will first be screened via a telephone consultation to determine suitability to take part before being invited to attend 3 face-to-face visits at our specialist facilities - all travel expenses are covered.

10) The exercise involves two 10-minute tests that are relative to your current functional status. Which will be accompanied by an ECG, biomarker, blood lactate profile, breath-by-breath gas analysis, blood pressure measurements and monitoring of your symptoms.

11) Each testing session lasts approximately 90 minutes, and we will share an overview of your data with you in the days after the test.

12) Our facilities are operated by expert scientists. Whilst you are with us you will be closely monitored, and the session will be taken at a pace that is comfortable for you. There are also designated spaces for you to sit/lie down and rest until you feel ready to leave.

13) You may also bring a partner/friend with you to all the sessions, they will be provided with somewhere comfortable to sit and wait and we can also offer them light refreshments.

14) If you would like to know more about this research, we have developed a bespoke frequently asked questions page that will be available soon.

Or you can contact the research directly team via e-mail [e-mail]

15) We know that choosing to participate in this study will be a difficult decision for many people. However, your participation will help develop a greater understanding of why some people living with Long Covid (and other chronic conditions) develop PEM/PESE and why some don’t.

16) With thanks to our partners who have been involved and remain determined to increase the mechanistic understanding of #LongCovid @SarahBarleyMc @LindsaySkipper @SHU_AWRC @sheffhallamuni @UICscience @CollegeRamaiah @NorthumbriaUni @UHDBTrust @NIHRCRNEastMids @GileadSciences