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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 20 years trying to do so in both clinical trials and clinical practice. To cut a very long story short, in my experience there are none available that...

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 evaluation and development, also reporting treatment outcome but lacks the detail we seek which will (probably) cover symptomology, activity, needs...

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 nothing gained. Soz, apparently I haven't been using reply function correctly. I assumed all the quotes and brackets were formatting glitches, we live...

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 have been working with Manx Care (the IoM health service) to develop a ME service for the IoM. Pragmatically, long-covid has recently been added in to...

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 spotted it. I'm curious why you find this paper "not overly encouraging ". It highlights the mismatch between pwMEs needs/priorities/concerns and...

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 has been widely used for years. Obviously not known here or used by people who developed previous ME assessments but there is a world of research...

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 neuro rehabilitation, but I have also worked in other chronic disabling conditions as a methodologist. I generally describe my research approach as a...

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 relevant, accurate and reliable. When it comes to implementation in practice/daily life then consideration of their feasibility and acceptability are...

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 anything that is usable at a service level. As for examples, in my research page at UoM there are links to the projects I have done in stroke, neuro...

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 electronic surveys. Mike will complete Rasch analyses on the data and then we - me, him, research team, advisory groups will decide how/whether to revise...

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 that I will not "be challenging" has raised a giggle, so thank you. I realise there is a lot of baggage for everyone whenever ME is mentioned. You...

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 the psychometrics of the measurement tools. He and I have worked together for years to develop several clinical measurement tools. He is a top bloke...

I fully accept the logic of your views, I have spent a good deal of my previous life working through the detail of such thoughts/hopes/expectations. It would be great if they could be fulfilled, but the reality is that, at present there are no reliable, accurate devices that provide the right...

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. These have been accepted and widely used for years. You see, there is a wider research world than just the PACE trial and ME. I realise you, and other...

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 services, if they exist, are separate. What have the Isle of Man got to do with it? Well ..... Juan Corlett is the Chair of the Isle of Man ME...

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 well-developed, psychometrically robust measurement tools so it perhaps not surprising. My experience of doing so in other conditions is that its possible and...

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 understand that the purpose of this study is not to assess the effectiveness of, or satisfaction with ME services (or otherwise) but to develop the means of...

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 turns out to be a substantial step forward from the current mishmash of some staff being more up to date and others still based on PACE mentality then...

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 FDA. It details the methods and standards to develop patient reported outcomes to ensure they are fit for purpose, be that clinical or research use...