We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) to complete this online questionnaire. People whose ME/CFS was triggered by a covid infection (i.e. long covid) are also invited to take part.
This is the final stage of the research to develop an assessment of post-exertional malaise, or the worsening of symptoms that people experience when they overdo it or exceed their ‘energy envelope’.
People with ME/CFS have generously completed the initial survey to test out this assessment, and we have used the feedback and data to make revisions. We now need to test out the revised version to double check it produces robust data.
Many thanks to the people who signed up for the survey to test out revised version of the ME symptoms questionnaire.
Professor Sarah Tyson
We have had an amazing response and have now closed the survey to new participants, as we have reached the numbers needed, but we will leave the survey open a while longer so people can complete their submissions.
Here's the link which is still available for those who need to finish an original saved entry:
In the meantime, we have a new survey which we'd like to invite people to take part in. This one is to test out the revised version of the Post Activity Symptom Scale (PASS) which assesses post-exertional malaise.
Those of you who took part in the first PASS survey will see that it is now much shorter and simpler.
Here is the link to the new survey:
If you have any questions, please do not hesitate to contact Prof Tyson on Sarah.tyson@manchester.ac.uk