Calling People with ME/CFS or Long Covid to take part in a research study

The University of Manchester are looking for adults with ME/CFS or Long Covid to take part in a study to develop a clinical assessment toolkit.

 

 

 

 

The University of Manchester are working with people with ME/CFS (PwME), or Long Covid and ME/CFS services to develop a series of questionnaires, called Patient Reported Outcome Measures (or PROMs). These will help PwME/CFS and ME/CFS services identify, understand and quantify people’s symptoms and disabilities, support goal setting and treatment planning, and monitor changes.

This the second PROM – a questionnaire to measure the increase in symptoms after you exceed your baseline activity level. It is called the Post Activity Symptom Scale (PASS) has been co-produced with PwME/CFS and clinicians to ensure the questions capture the issues that are important to PwME/CFS, and it is easy to complete.

The University of Manchester now need PwME/CFS/Long Covid to complete the PASS to check that it produces good quality information. Two weeks after completing it, they will send a link to repeat it. This is so they can check how people’s symptoms fluctuate over the short term and whether the TIMES picks them up.

It will take 10-15 minutes to complete but it can be done in ‘chunks’ to aid pacing. It is fine for someone to help you.

Visit Developing a clinical assessment toolkit for people with ME/CFS and clinical services for more information or email the Chief Investigator Professor Sarah Tyson.