UPDATE: The research team have let us know that they’ve received a huge response to this request and they now have the information they need. They’ll be in touch with people individually if they are eligible to participate in the study. If you got involved, thanks for your support!
Researchers at the University of the West of Scotland (UWS) are undertaking research into ME and long COVID, and are looking for members of the ME community to be involved in the development.
The researchers are currently undertaking several studies related to long COVID, including symptom tracking and heart rate supported pacing. Some #MEAction Scotland volunteers spoke to the UWS team and they are clear that their focus is on pacing support and not incremental physical activity or any other variant of graded exercise therapy, as they are aware of the dangers for people who experience post-exertional symptom exacerbation.
Postdoctoral research fellow Marie told us: “It is evident that there is considerable overlap in symptoms reported by people with long COVID and people with ME/CFS, including fatigue, pain, and post-exertional malaise. We are particularly interested in investigating how (or if) our work with long COVID can be transferred to best help people with ME/CFS.”
The team are looking to characterise some of the similarities between long COVID and ME. The scope and protocol of the work are still to be decided, but it is likely to include physical, physiological, and psychological assessments. They would like to launch a heart rate supported pacing study with people with ME, similar to their current study with people with long COVID.
How can you help?
UWS are looking to develop a patient and public involvement (PPI) group. This would include people with ME and long COVID to shape the research design.
It will involve having remote group discussions with the research team to co-design the research by providing ideas, asking questions, and voicing concerns based on lived experience. This will help ensure that the study is feasible for as many people as possible with ME, by engaging and listening to the needs and concerns of people who live with it.
If you’re interested in being part of the PPI group you can get in touch with the research team by emailing [email protected]