ME Association email newsletter:
We need people with ME/CFS to help with a research study!
The ME Association is funding a study led by Prof Sarah Tyson of University of Manchester (who has ME/CFS) to develop a clinical assessment toolkit for use by ME/CFS specialist services.
The research will be completed in collaboration with people with ME and clinicians who work in ME/CFS specialist services. It will use gold-standard techniques to develop a range of patient-reported outcome measures (PROMs).
Prof Tyson’s work with other long-term disabling conditions has shown that using these types of assessment can help to evaluate and monitor the nature and severity of symptoms, activity levels, identify patient need (which forms the basis of goal setting and treatment planning), and monitor progress. There will also be a patient satisfaction measure that will contribute to service development.
To achieve this, the PROMs need to be carefully developed to ensure they cover the full range of symptoms and disabilities that are found in people with ME, are easy to use, and produce accurate and useful information.
Read more about the research study
PwME Advisory Group
In the first stage of the project, we want to establish a People with ME Advisory Group.
Members will act as a sounding board to develop the content and format of the PROMs to ensure they include questions that are relevant and important, and that any instructions are easy to understand and complete.
The Group will meet and share their views virtually by email, group video meetings or individual meetings by video or phone, according to the task and member’s preferences. The meetings will be spread across several months and we hope to begin them later this summer.
To join the Group you must have a diagnosis of ME/CFS and be over the age of 18. We want to include a range of experiences. If you are interested please complete a short form that will allow Prof Tyson to select members.
The closing date for applications is 30 June 2023
Prof Tyson will review all applications and will let successful candidates know early next month. We hope the first Group meeting will occur later in July.
Please complete the application form