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The aim of the survey is not only to characterize what post-exertional malaise is and how it affects patients but also to determine what words and phrases best describe it.
I took the survey this morning, and it took me about 20-30 minutes to complete it, so set aside a bit of time before you start. It is mostly multiple choice with a few short answer parts where you can use your own words to describe exertion intolerance, how it affects you, and how to explain it to others.
This is a great opportunity to help move ME/CFS research forward without leaving your bed or couch! So, click the link above and do your part today. The better that researchers understand and can describe post-exertional malaise (there HAS to be a better term than that!), the closer they will get to figuring out how to treat or even cure it.
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2 comments:
I will take this survey this evening - thank you for writing about it. I do not know if you have checked out Mendus.org. There are some studies of interest on that website. I am participating in one of them from home.
No, I'm not familiar with that site - thanks for sharing it. I will check it out!
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