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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...

No, we need other ways of taking that into account. There are quick tests that can show cognitive fatigue, I think, which could be useful eg how many of a sequence of digits such as a phone number you can recall after reading them.

Someone hasn't done their research.

I have set up this thread specifically to look at the way the questions are worded and whether they adequately cover the specific problems of fatiguability and PEM that limit whether an activity can be repeated and whether we avoid some activities in order to be able to do others, or in order to...

Health apps I'm aware of all offer a cholce of android or apple. Don't most smartphones use one of other of these?

Yes. I really don't understand why the research team on this project don't understand that. Or choose not to understand it. I found Sarah Tyson's arguments againts wearables in her talk yesterday very weak, mostly based on ancedotes of wearables not recording accurate data, which i dispute...

A pity it's only available to delegates.

The PACE trial used wearables 20 years ago. They used step monitors for a week at the start and were supposed to use them again at the end, until they chickened out. And the GET group used heart rate monitors during their daily timed exercise session and were told to stay below a certain level...

I generally prefer not to donate directly to ME research, but to do it through a charity which has a vetting system to decide which research is worth funding. I'm not surprised Morton has trouble getting direct donations.

I watched Caroline Kingdon who talked about her experience of visiting people at home who are participating in the ME Biobank. She was excellent on the need for the clinician to listen and be adaptable to the pwME's needs and limitations when designing and carrying out research. Very good talk...

I have watched the first 2 talks. Sarah Tyson's section on her team's development of PROMs she said she expects the 3 tested so far on symptoms, PEM and function are expected to be useful for clinical trials. She talked a bit about them in general terms about reliability and validity and the...

I have signed up to attend. If I manage to work the technology, I intend to watch and listen to some of it, but not try to take notes or ask questions

Crossposted with Hutan. Huge sympathy to those with awful ongoing symptoms. For those dreading it, a bit of hope is that it's not so bad for everyone. I am one of the lucky ones with menopause. Last period age 44, hot flushes were just waves of heat that happened up to several times an hour...

I think we need to be careful in our criticisms of use of feedback, because we don't know what changes Sarah Tyson's team are making to their PROMs following feedback from the thousands who have completed the questionnaires, people writing to them, and comments from people here and on other...