I agree, @Keela Too. To summarise, perhaps: For HV, it's a game with a reward. For pwME it's a test with unknown real life jeopardy.
I agree that's a problem, though it could be accounted for if you include the travel as part of the work day, so if the travel is physically...
It's also relevant I think to ask what it's being used for. I assumed it is for daily quick recording of severity of symptoms and function, to...
The only scales I can think of for functioning relevant to ME/CFS are the Bell scale and the MEAssociation scale both of which 10 categories, I...
I've only read the abstract and failed to find out much about the concept of Vital Exhastion or its associated questionnaire other than it's used...
I think there's a key point here. If a questionnaire about PEM attempts to 'measure' it, then it is doomed to fail to provide any useful...
Thank you so much @Simon M for clarifying a very confusing situation. Would it be OK for your analysis to be used by those writing to people at...
Thank you @tuppence for sharing your and your late wife's story. I'm so sorry to hear of your difficulties and your loss, made so much worse by...
But as I understand it the test is designed to avoid fatiguing physically healthy people, not ones with abnormally debilitating physical and...
I haven't been able yet to read the whole paper or study the effort preference nonsense, so I may be repeating what others have said. Choosing...
A further thought on not naming PEM and not differentiating it from PEF, DOMS, EI and fatiguability: There is a concerted effort that has been...
Copy of tweet:
We had news of this study last October from the MEA:...
From the link in the tweet: https://cureme.lshtm.ac.uk/new-funding-supports-me-cfs-diagnostic-study/
I agree, I think I have said similar several times on this thread. The clue is in the name PROM: 'outcome' and 'measure' are not appropriate for...
I think it's already been done by Maureen Hanson's big 2 day CPET study that collected lots of subjective and biological data from 80 patients....
There is a separate PEM paper here: Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic...
You're right about doctors being unlikely to use these sorts of PROMS. If at all it will be likely to be a single number score or scores tracked...
A further thought on baseline. If all increases in symptoms following any exertion are counted as PEM, then for many of us, the 'baseline' is...
I don't know whether Sarah Tyson will continue to read this thread, or anyone from the MEA or BACME who is involved in and has some influence on...
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