UPDATE 12/09/2025: We have now reached the required number of participants for this survey, so we will close the survey to new participants at 5pm on Friday 12th September. It will remain open to existing participants until 9am Monday 22nd September to give time to complete the submission. If you need a bit longer, or have any other issues please contact Sarah.tyson@manchester.ac.uk
The ME Association is funding a study led by Prof Sarah Tyson (who also has ME) from the University of Manchester (as pictured), to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services.
2025 Update from Sarah Tyson:
Many thanks to the thousands of people who have supported the clinical assessment toolkit project. We have completed work on the first four assessments (measuring PEM, symptoms, clinical needs and patient experience) and are planning the launch to make them available for ME/CFS specialist services and people with ME to use.
In the meantime, we are working to finish off the final assessment – the ME Activity Questionnaire (MEAQ). You may remember, there was a survey to test out a draft version several months ago. We have made revisions based on our analysis and your feedback and need a second survey to check out the changes made.
The MEAQ is now shorter and simpler, although there are still quite a lot of questions, as we need to be comprehensive. However, one of the things we will be looking at in this round of analysis is how we can arrange the final items to make it less effortful to complete – more on that if it works! The questions are split into short sections, and the answers are in a standardised format to minimise the cognitive demands of completion. You can also take a break at any time so you can pace.
Please could you help by completing the survey?
It takes about 10-15 minutes to complete.
We need a smaller number of participants for this analysis (‘just' 250) so we will close the survey once we have reached this number, which will probably be in a couple of weeks.
If you would like more information about the toolkit project and some frequently asked questions (FAQs) please click here: Clinical Assessment Toolkit
If you have any questions or comments, please contact Prof Sarah Tyson, the Chief Investigator at Sarah.tyson@manchester.ac.uk
Please note: The Participant Information sheet linked in the survey is currently not working. For the time being, please access the information sheet using the link below:
Further Information:
List of previous surveys (closed):
- Update: The ME/CFS Clinical Assessment Toolkit Project and Survey | October 2024
- Research: The Index of ME Symptoms (TIMES) for ME/CFS ┃September 2024
- Patient Reported Outcome Measures (PROMs) in ME/CFS ┃April 2024
- Patient Reported Experience Measure for ME (PREM-ME) (Facebook) ┃July 2024