ME Awareness 2024

Call for people to take part in a ME research study

The ME Association is funding a study led by Prof Sarah Tyson of University of Manchester (who also has ME) to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in ME services.

Thanks to everybody who took the time and energy to complete the TIMES questionnaire before Christmas.

The second questionnaire, (called the Post Activity Symptom Scale, PASS) to measure people’s PEM symptoms is now ready for testing. The research team are keen to get input from people with severe ME.

This is the link https://www.qualtrics.manchester.ac.uk/jfe/form/SV_cvaa1nmfhJVTflc

This questionnaire is shorter and simpler to complete then the TIMES one. It can be done in ‘chunks’ to enable pacing. It is fine to have someone to help you complete it.  If you would prefer a paper copy or to ‘do’ the questionnaire by phone. That is fine. Just contact Sarah on sarah.tyson@manchester.ac.uk to arrange this.

The closing date for the survey is 29th March 2024.

For many years the definition of ME/CFS has been wrongly placed in the medical textbook by Kumar & Clark. This textbook is used for educating health professionals and is dipped into by doctors and nurses as it’s user friendly. Currently, it has ME/CFS in psychiatry. Some individuals have put pressure over the years to get it changed but to no avail. Let’s hope that strength in numbers might help.
To sign the petition, here’s the link: https://www.change.org/p/me-cfs-changing-the-definition