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.
Update from Prof Sarah Tyson
Many thanks to the hundreds of people who completed the last survey to test out the revised questionnaire to assess PEM. We have closed the PEM survey now and are working on the analysis.
In the meantime, we have launched the final survey of the project. This one is to test out an assessment of clinical needs, called (originally) the Clinical Needs Assessment for ME (CNA-ME).
A ‘clinical need' is something that is important to a patient and a priority to address as part of the treatment/management plan. For individual patients, the questionnaire would be used as part of the assessment process and care planning, including putting together a care and support plan recommended in the 2021 NICE guidance for ME/CFS. At a service level, the information from clinical needs assessments is useful for service development as it highlights what patients want and need to get from the service.
As before, we have devised a draft questionnaire, and the aim of the survey is to test out it out by checking the questions make sense and produce good quality information. We will also explore how we can make it as short as possible while covering all the issues that are important to people with ME/CFS.
Please could you help by completing the following survey
It takes ~10-15 mins to complete. If you have any questions, would like a paper copy, or any other accommodations please contact the principal investigator, Prof Sarah Tyson on sarah.tyson@manchester.ac.uk
Further Information:
List of previous surveys (closed):
- 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