Im not disagreeing that the prospect of using 'wearables' to measure activity in everyday life is very appealing, which is why I have spent about...
The COvid-19 scale is a general overall measure. It may be useful to show overall change over time to measure outcome and useful for service...
That was the plan, although given the tone of some posts I'm a tad concerned about how constructive any feedback will be, but nothing ventured...
What have the Isle of Man got to do with it? Well ..... Juan Corlett is the Chair of the Isle of Man ME Support. Over many years, IoM ME Support...
Apparently I have not been using the reply function effectively so some of my replies are disconnected from the original post and you may not have...
As you may have seen from my replies to other posts, the gold standard approach to developing clinical assessment tools is very well known, and...
I'm not sure there will be a convenient pigeonhole in which to shove me. I'm a physio by background, my main research area has been in stroke and...
Psychometrics refers to the study of the quality of the data obtained. All measurement tools need work to establish that the data they produce is...
As I've explained in previous posts, activity monitored could be useful if they worked. And maybe one day they will. But at present there isn't...
I and the rest of the team will work with the pwME and clinician advisory groups to develop draft tools. We will collect data using them via...
Im not sure who are institutions to which you refer but, I read this post out to my family. The thought of me being anybody's 'pet patient" or...
Mike leads the Leeds Psychometric Lab. He is the world's 'go to' expert on Rasch analysis. This is the statistical approach we will use to assess...
I fully accept the logic of your views, I have spent a good deal of my previous life working through the detail of such...
No, the gold standard "trope" does not mean EBM. The gold standard to which I refer is the US FDA recommendations for the development of PROMS....
If you mean Isle of Man, I think they are mentioned in the context of having a combined ME/CFS and LC service, unlike in some other places where...
Yep, that's the idea. I appreciate you are sceptical, but assuming your experience is limited to ME, then you won't have experience of...
The main data collection will be open to people with ME, whether they are, or have been patients of ME services, or not. It is important to...
My hope for a project like this would be to enable symptom contingent pacing taken on board as the new status quo. I suppose if the end result...
Good. To slip into the vernacular - he is a good bloke and on our side.
Jo, Im sorry your heart has sunk. The gold standard to which you refer is the recommended methodology for the development of PROMs from the US...
Separate names with a comma.
