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I think they do have some people with ME/CFS giving them feedback before they finalise and send the questionnaires out.

To facilitate discussion, I am copying a few of the questions from the questionnaire here. Each section starts with this sentence, which I've usually forgotten by the time I'm part way through the questions in that section: Each question states an activity and often specifies what sort of...

Very pretty, Tom, a proper old fashioned tea party. I hope you have a lovely time with your family.

Good point. I'm level 4 physically and probably level 2 cognitively. I've never been level 1 even when working part time. I agree there needs to be more levels for severe very severe and extremely severe. I think, apart from the questionnaire being far too long, the choice of responses...

I think it's a big difference. The things listed are just indicators of overall differences in capacity. Of course it's a continuum, but my life is very different in level 4 than when I was in level 3.

You're right. Though I guess they might say we can email to ask to see it... That about sums it up. They could have designed this particular questionnaire with sections to be answered by people with different severity levels. They say that will be a next step. Why? They ask at the beginning...

Given that the 2 lead researchers are physios, perhaps the Chartered Society of Physiotherapy No idea really. I hope someone reading this who can explain all the things participants are asked to agree to will explain why they are needed.

It's not you, it's the technology. The web address needs to include www for it to recognise that you are logged in. I'll amend it. https://www.s4me.info/threads/me-chronic-illness-podcast-post-exertional-mayonnaise.33695/

I don't think that's a serious problem. It might be for some social media surveys perhaps, but I can't imagine the thousand or so participants they have had for previous questionnaires including more than one or two rogue participants.

A quick note in case Sarah Tyson is reading this: I assume this is an error: 79. Take part in gentle recreational exercise e.g. walking, yoga, dancing, golf, cycling, swimming 81. Take part in more demanding recreational exercise e.g. dancing, golf, cycling, swimming

I don't think we have evidence to support that. For example, most people who get ME like symptoms following glandular fever recover within a year, from my memory of Leonard Jason's research. Most of the early recoverers probably never get an ME diagnosis, even if they fit ME/CFS diagnostic criteria.

I tried clicking on the link just now and got the message that the link had expired. I confess I didn't bother to try the link before I did the questionnaire. I assumed I'd already seen it for previous questionnaires.

It is ridiculously long. And I kept forgetting the instruction at the beginning of each section so had to go back and redo the first section. I was helped by the last section being all questions about going out, and since I don't go out it was easier, once I'd settled on which of 3 ambiguous...

I decided to tick the boxes so I could see the survey, and completed it. As with the last survey, I have significant criticisms. I wrote my immediate reactions in the box at the end, but will go back over it and consider whether to make a more detailed comment. Not that they will take any...

This seems unreasonable. Why are they asking for regulatory authorities to be allowed to look at my data? What regulatory authorities?

This is the link to the survey: https://www.qualtrics.manchester.ac.uk/jfe/form/SV_4GBQxvdf3mgdW1E The survey introduction says: Developing a clinical assessment toolkit for people with ME/CFS and clinical services. Stage 3: The ME Activity Questionnaire (MEAQ) We are asking adults in the UK...

And they can't even get their information right. The TIMES questionnaire on symptoms was the first one they had people filling in. This new one is the third one and is about activity levels and adaptations.

I've read the first bit of the book that's available on Amazon, where she gets glandular fever in her final year at school. It's well written and easy to read.

Some posts about this: NIH to open long COVID clinical trials to study sleep disturbances, exercise intolerance, and post exertional malaise Have been moved to this thread: USA: The RECOVER Initiative - Long Covid research

Really good. Many thanks to Chris Ponting.