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

Leave a Comment

Your email address will not be published.

Latest News

New Volunteer Leadership Program Led by Experts!

We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute a new volunteer leadership training program funded by the Ford Foundation! We are so thrilled that we will be able to expand our volunteer programs to include robust training and provide fulfilling roles and opportunities for

Read More »

Research Update: The NIH Intramural ME/CFS Study

National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are writing up their findings and plan to circulate a draft among their large team of scientists and physicians for feedback soon.  “The study will help patients and should move the field forward in

Read More »

#MEAction Meets with the Department of Labor

#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP) at the U.S. Department of Labor (DOL) where we presented on community issues affecting people with ME and Long COVID and offered policy recommendations that DOL can take to address them. President Biden’s Memorandum tasks DOL

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