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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 demanding, then it's a physically demanding work day even if the actual work is sitting at a desk. And of course if you're using it for personal purpose...

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 help with pacing and possibly to provide data for studies. I don't think it could be used as a one off score that tries to summaries what our ME is like...

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 think. I think if I were doing it for monitoring myself I would make up my own scale and have 2 separate ones for physical and mental functioning...

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 in heart patients. I suspect this is yet another example of throwing a few random questionnaires designed for unrelated purposes at pwME and see what...

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 information. Surely for helping with clnical care helping patients to understand what PEM is, whether they experience it, and how to make lifestyle changes to...

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 NIH, and possibly writing to the journal that published it, to complain about the publication? I think it would be very helpful to have it spelled out...

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 mistreatment from those who should have helped.

But as I understand it the test is designed to avoid fatiguing physically healthy people, not ones with abnormally debilitating physical and cognitive fatiguability.

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 the easier option would likely have been necessary for me after a few minutes, as I would not be able to continue high speed repetitive finger presses...

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 going on for decades in the UK and some other countries to subsume ME/CFS within an umbrella term such as MUS, FND, and various functional and somatic...

Copy of tweet:

We had news of this study last October from the MEA: https://www.s4me.info/threads/the-nanoneedle-salt-stress-test-%E2%80%93-too-good-a-clue-to-leave-abandoned-on-the-lab-bench.34019/page-4#post-501141

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 ME. To give a perverse example, if the outcome measure for a PEM PROM is to be frequency of episodes of PEM on the grounds that good pacing leads to...

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. Adding previous studies, and I think it's already established. I doubt we need 300 more.

There is a separate PEM paper here: Trial Report Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/CFS: an exploratory study, 2024, Stussman Edit to add: It's only based on subjective data and only over the first 72 hours after CPET and only 9...

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 over a course of therapy sent to them in a report on a course of therapy to put in their records, and likely to be highly misleading as I outlined...

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 basal metabolism, ie the use of chemical energy needed to keep the body alive, including digestion, excretion, breathing, heartbeats and basic...

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 this project. In the hope of being heard, I offer the following: I think this is key. If we are to have useful PROMS for ME/CFS they need include the...