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LOCOMOTION March 2023 Newsletter


LOCOMOTION study recruitment surpassed 2000 in March 2023!

Long COVID Publications:

  • Our fourth British Medical Journal Practice Pointer has been submitted for publication. This one focusses on cognitive dysfunction/brain fog.
  • Visit our Scientific Publications page to find our previous Practice Pointers and other publications.

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Study Updates:

  • Researchfish submission: Researchfish is used by the National Institute of Health and Care Research (NIHR), our funder, to report on research impact beyond academia and inform future funding strategies. Our submission included details of Locomotion engagement activities (such as talks at clinical conferences) and our influence on policies and clinical practice. This information needs to be submitted every year during the study and for a period afterwards.
  • External Advisory Group (EAG) meeting: Our EAG met in March, it provided great discussion on the potential future of the Locomotion platform, assessing the impact of reinfection, the purpose of our Long Covid (LC) phenotype meta-review, lessons learnt regarding the recruitment of people with LC, and the future configuration of LC services.
  • Data workshop: Our quantitative work packages met to discuss what data each will have and by when, and what their planned analyses and outputs are, to establish timelines for data sharing between work packages to support analyses.
  • PAG audit follow-up session: Our clinical sites will be meeting in May to discuss key topics following our Patient Advisory Group's audit of what is happening in LC clinics. They will discuss how to ensure key assessments are not missed in clinics, what tests GPs should conduct before LC diagnosis, and how patients with ‘very LC’ differ from those who recover within the first year.
  • Introduction of 'Fieldwork': We've made an amendment to our study to introduced ‘fieldwork’, in which researchers will be attending Multi-Disciplinary Team meetings at our clinical sites to identify the facilitators and barriers to implementing change in clinical practice.

Long Covid Webinar:

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  • Welcome: Janet Scott has joined as the new Principal Investigator at NHS Highland, our clinical site in Scotland.
  • Welcome: Adam Mosley has joined as a Research Assistant at our Salford NHS clinical site.
  • Thank You and Goodbye: Thank you Lorna Murray for her time as the Principal Investigator at NHS Highland.
  • Congratulations: Prof. Daryl O’Connor, who works on work package 2.1, has been elected as Fellow of the American Psychosomatic Society

Team Member Profile – Clare Rayner (Patient Advisory Group Co-Lead):

  • Background – I’m a retired occupational physician and until recently taught on postgraduate courses. I was always interested in preventative medicine including environmental risk management. I am also a trainer/group facilitator and I’ve taught communication skills to healthcare students for 25 years. Since retiring I enjoy a balance between this small amount of work and hobbies of painting and drawing.
  • How I got involved in Locomotion – At the start of the pandemic, I became involved in advocacy for people with consequences of Covid. I'm trained to observe and analyse patterns of disease, and from early on, friends and I noted that many people who were not admitted to hospital with Covid had multiple, strange and ongoing patterns of illness. After a friend and I published papers in the British Medical Journal, we joined up with advocacy and support groups. They asked us to provide information to the WHO in August 2020 on the medical aspects of LC. This was momentous and we got the surprise of our life when Dr Tedros himself appeared, and responded directly to us promising to address LC. After that, I linked up with the Rehabilitation Innovation Department at Mt Sinai Hospital in New York, who ran the first LC clinic. Together we developed an international collaboration where Mt Sinai provided their hot off the press expertise and knowledge which we brought back to the UK, and wrote papers and disseminated information for them. Meanwhile in the UK, those of us who had been the early voices of people in the community, were asked to join the NHS England LC taskforce as patient representatives, and then patient reviewers for NIHR LC projects. I was asked to be Patient Co-Lead on Locomotion by Brendan Delaney and Trish Greenhalgh, as I had previously written papers with them on experiences of Covid, and developed guidelines.
  • My Role in Locomotion – I'm the Patient Advisory Group (PAG) Co-Lead with Ruairidh Milne, and we’re also named researchers/investigators. We work in our wonderful PAG team, who have fantastic skills and provide strong challenges, advice, and governance to the project. We try to model ways of working which are flexible and adjust for energy-limiting health conditions. l enjoy working with all the teams on the project and the willingness to co-design and hear what we say. I love to learn new things, and I’m now hooked on health economics through my WP3.2 work, as it pulls everything together - it addresses everything about patient and staff experience. I also enjoy the joint problem-solving approach to find user-friendly ways forward in my WP2.2 work. In my role I’ve learnt how patients can be involved in designing health services, I didn’t know this was done at all, but the help and guidance Amy Rebane (PPI manager) has supported my involvement as a patient.
  • My Work Outside of Locomotion – With patient support charities, I've has been involved in advocacy for people with Long Covid since early in the pandemic, in particular for adequate assessment and treatment for people who were not admitted to hospital. With my background as an occupational physician, I have a special interest in helping people with Long Covid get back to work and their livelihoods. I'm a member of the WHO Guideline Development Group for Rehabilitation after Covid, and led on the Society of Occupational Medicine’s position paper, ‘Long Covid and Return to Work: What Works?’ and produced leaflets for workers and employers.
  • Fun Fact – I was once nearly a black belt in karate.
Photo of Clare Rayner


Team Member Profile – Julie Darbyshire (Co-Lead for WP1.1 and 1.2):

  • Background – Originally an arts graduate, I first worked in the advertising department of a glossy monthly magazine which was not as glam as it sounds. I then spent five years in the production office of the dictionary department at Oxford University Press. This was exactly as glam as it sounds, but OUP was a really lovely place to work! I moved into research administration and completed a Masters in Science Communication with the Open University which seemed like a good way to combine my arts and science skills. Since then, I’ve done most background research admin roles, in both large-scale international drug trials and smaller local/single-site observational studies, most recently managing Trish’s growing research team in Oxford. Somewhere in the middle of all that I decided it would be a good idea to do a PhD. Short version: its busy in the intensive care unit and patients really don’t sleep well. It’s also hard to do much about either problem but people are working on it.
  • My Role in Locomotion – I co-lead WP1.1 and 1.2 alongside Trish Greenhalgh. I also host regular informal chat sessions for the site research fellows, co-chair the publications committee with Nawar, and I’m a member of the communications committee.
  • Fun Fact – I got a sewing machine for Christmas 2021 and by Feb 22 I’d made a dress out of Granny’s bedroom curtains.