Be part of designing UWS research into ME and long COVID

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] 

Facebook
Twitter
WhatsApp
Email

Latest News

#MEAction logo is in white in the top left corner and the words Colorado State Chapter are in white laying across an image of snow capped mountains and pine trees. There is a bottom section of the image that is a green box with the words Working-With-Governors-Office-to-Create A New Senior Policy Advisor Role-Leading to Statewide Report on Long COVID

#MEAction Colorado Works With Governor’s Office to Create A New Senior Policy Advisor Role on Long COVID and Post Viral Infection Planning–Leading to Statewide Report on Long COVID

#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February 25, 2020. Representative Alex Valdez read into the legislative record a proclamation about the presence of and deleterious effects of ME in Colorado. This effort was relatively easy to accomplish and consisted of finding a representative

Read More »
Left: Woman healthy and happy standing beside her husband. Right: Sick woman in hospital bed.

Woman with Severe ME and EDS starving to death in NHS hospital

UPDATE: We want to provide a brief update on Sami Berry’s case and what she needs help with now. The situation in hospital reached the point that Sami decided she had to self-discharge to try and stay alive. She is at home with a Percutaneous Endoscopic Jejunostomy (PEJ ) tube but she needs treatment with

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top