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...
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...
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...
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...
Given that the 2 lead researchers are physios, perhaps the Chartered Society of Physiotherapy No idea really. I hope someone reading this who...
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....
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...
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,...
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,...
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...
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...
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...
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...
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...
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...
Some posts about this: NIH to open long COVID clinical trials to study sleep disturbances, exercise intolerance, and post exertional malaise Have...
Really good. Many thanks to Chris Ponting.
Separate names with a comma.
