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Reminded me of Alice in Wonderland and the bottle labelled 'Drink me'.

If you're doing this indoors, maybe there's a problem of build up of cinnamon smell molecules in the air around you.

It's good that the point about cumulative effect is raised, and the question of how we decide between the options in FUNCAP. My idea on this thread is that we compare which of these most successfully captures the experience of our functional limitations, including the slow recovery and...

Does it say what the treatment they use is?

That's interesting and worth saying. I also don't do lots of the things on the list because of pacing, but to me that means I should rate them as having a serious impact. I do get the bit about cumulative activity. Everything contributes to cumulative effects, so the scoring can only ever be...

By email: Dear participant, We are excited to announce that we are now uploading the complete series of UniteToFight2024 conference videos to our YouTube channel! Relive the insightful sessions and catch any moments you might have missed, all at your convenience. Our YouTube channel is online...

The videos of the Unite to Fight Conference are now available on YouTube. https://www.youtube.com/@UniteToFight2024

The NHS is morphing into Goop level wellness crap.

I had the impression it was only open to clinicians.

I've been watching some cycling road racing. The professional cyclists are monitored continuously for heart rate, speed, effort, etc. They clearly find them accurate enough. Why can't we? Coming back to this discussion is like stepping back 50 years.

I think Sarah's point was a bit different. She was responding to my questioning the level of exertion that participants were asked to rate as strenuous to mild, or something like that rather than specifying types of activities as benchmarks. I raised the issue of a person whose ME deteriorates...

I've been trying to sort out why I find the FUNCAP easy to understand and do, and a useful and accurate reflection of my capacity in each domain, and by contrast MEAQ so impenetrably difficult and ambiguous. I think the problem for me is mainly this option in MEAQ: Yes, but with adaptations...

I've started a thread to discuss how different function questionnaires ask the questions and the options they give to choose for answers: Comparison of measures of functional capacity and the way the questions are worded to take into account ME/CFS limitations

In her talk yesterday, Sarah Tyson said, if I wrote it down correctly, that FUNCAP focuses on the consequences of doing activities, whereas her questionnaire, MEAQ, focuses on the adaptations people make to decide to do or not do each activity. My question I'd like to discuss is, which sort of...

My aim with this thread is to focus on the way the questions are worded in each questionnaire and the options offered, not on the specific activities listed. For the 4 PROMs I've listed above, these are the questions: SF-36 PF The following items are about activities you might do during a...

The ME Activity Questionnaire (MEAQ) Currently in development. So far the initial version of the questionnaire is under way, with pwME filling it in twice two weeks apart. Thread From the information provided with the questionnaire: Over the last month, have you done this activity on an...

FUNCAP Functional Capacity in ME/CFS FUNCAP link | Thread This questionnaire evaluates your functional capacity for a range of activities. No days are the same, base your response on an average day during the last month, not the worst nor the best. If a question concerns an activity that you...

WHO Disability Assessment Schedule 2.0 (WHODAS 2.0) WHODAS 2.0 link | Thread In the past 30 days, how much difficulty did you have in.... 0 = No Difficulty 1 = Mild Difficulty 2 = Moderate Difficulty 3 = Severe Difficulty 4 = Extreme Difficulty or Cannot Do There's a short 12 item version...

SF-36 Physical Functioning https://www.rand.org/health-care/surveys_tools/mos/36-item-short-form/survey-instrument.html Physical functioning is one part of a multiple section quesionnaire that also covers cognitive, social and emotional functioning. Questions 3 to 12 The SF-36 Physical...

Of course, especially if worn on the dominant wrist. There are ways to get around this, either by wearing on the waist or thigh, or by taking into account that the wearable is recording arm movements including steps. I find it useful, for example that getting dressed and undressed records as...