That's very interesting, Ravi. I haven’t used HRV as my Fitbit only does HR and steps. I find HR useful as an adjunct to symptom contingent...
Yes, Bobbler, I agree with all of that.
I have no idea of the motivation of therapists who might use this questionnaire. I would hope they intend to be helpful. But there is huge...
I think it should be up to the pwME to decide what information about their activity levels they want to divulge. I find questionnaires like this...
It occurs to me that the clinician would learn a lot more about what a person can and can't do by asking them to list their activities on an...
I agree. There is a world of difference between being able to shower daily, though a bit more slowly than a healthy person, and using a shower...
@sarahtyson, if you are reading this, perhaps you would share that talk publicly so we can all see what your latest thinking is on the progress of...
In my case it was because I didn't know about it. Edit: Also it was the day after the Unite to Fight two day marathon conference, so I had no...
They seem to be aimed at replacing the questionnaires much beloved of therapists in the old CBT/GET clinics. That is the Chalder Fatigue...
I suspect the few in the research team design the questionnaire first, then ask for suggested amendments. I can't imagine a group of pwME of...
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,...
Separate names with a comma.
