20/04/2026: Update from Prof Sarah Tyson
Dear All
Many many thanks to the hundreds of people who have responded to our request for people to participate in our latest survey to test out assessment tools for the MEA-CAT. We have had an absolutely astounding response with over 900 participants in 5 days! We have had an amazing response to previous surveys but this breaks all records!
It means that we have enough data to complete our analyses so I will close the survey to new participants. This is earlier than anticipated but as we now have sufficient data I would hate anyone to use their precious energies completing the survey when it isn't needed. I will keep it open for people who have already started for another week, so people have chance to complete their submissions.
Many thanks again for your amazing support
Best wishes
Sarah
As you may be aware, Prof Sarah Tyson from the University of Manchester is carrying out an ME Association funded project to develop a clinical assessment toolkit for ME/CFS. The first four assessment scales were launched last year and can be found here The ME Association Clinical Assessment Toolkit (MEA-CAT) – The ME Association along with further details about the project and the answers to FAQs.
The TIMES and the CNAME (which measure ME symptoms and clinical needs respectively) have been published in a scientific journal and papers regarding the other assessment tools are being prepared. There are a few loose ends to be tidied up to complete this and so we are asking you (adults with ME/CFS) to complete an online survey to produce the data needed.
The survey includes the Post Activity Symptom Scale (which assesses PEM) and two new assessments. They are brief (single question) assessments of overall disability/ME Severity and another that measures work status (or the level of employment one can manage). They are in response to feedback from clinicians and researchers that brief, summary scales would be useful as an outcome measure to assess whether a treatment or management approach is effective. This is in contrast with the more detailed assessments we have produced to date, which are intended primarily for clinical assessment. Both the new assessments are derived from the ME Activity Questionnaire (MEAQ), which we produced in 2025.
In addition to the three MEA-CAT scales mentioned above, there are a couple of widely used measures of function for comparison – the NICE ME Severity levels and the SF-36. The whole survey takes about 20 minutes to complete in one go but you can take as long as you like to complete. Your answers are automatically saved, and you will return to the place where you left off.
Two weeks after you have completed the survey, we will send you a link to complete the assessments. This is so we can check how scores change over time (called test-retest reliability).
So, please could you help by following this link to complete the survey?
If you have any questions or comments, please contact Prof Sarah Tyson at Sarah.tyson@manchester.ac.uk
More Information:
- Find out more about the Clinical Assessment Toolkit App