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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...

Thread here: https://www.s4me.info/threads/european-me-coalition-me-cfs-pledge-for-the-2024-european-elections.38784/

Lovely to hear from you Ian. Best wishes to your mother. Well done with the fundraiser.

And attribute that absolutely zero abuse to the disclaimer/warning? Seriously, of course no online seminar that invites audience participation should put up with abuse, but I think this is the first time I've ever seen such a warning. People running the zoom can cut anyone off if they want to...

Some posts have been moved to: Online workshop: Clinical Trial Design in People with ME/CFS, 4th June 2024

Is this normal in webinars like this, or is it specially inserted because of mythology about abusive pwME? It seems to me to be pretty insulting that they feel they need to include such a statement.

They surely will have seen our letters and are free to read this thread.

Every pwME's efforts at pacing is a research exercise carried out by the pwME as we navigate every day's activity and rest. All I'm suggesting here is adding more information to that research exercise to enable us to learn what we find works best given our individual disease and life situation...