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Yes, exactly. It's probably just a coincidence, but this reduction in the number of points in the scale will definitely help reduce the recognition of any harms caused by over-enthusiastic goal setting by clinicians. Possibly though, no matter how fine the scale, it is difficult for someone...

We have a number of threads on case studies where the proponents of FND did not have too little uncertainty, but way too much. The consequence was that people with debilitating neurological diseases were misdiagnosed and given completely inappropriate care. There was a poor woman who was found...

Authors are: Caroline Barnett 1, Rebecca Davis 2, Claire Mitchell 3, Sarah Tyson 4 Sarah, a member here @sarahtyson, has been given funds by the MEA to develop an assessment toolkit for ME/CFS clinics.

I started out with good intentions, listened to the first one and fell asleep (to be fair the time difference wasn't helpful). But I woke up in time for the afternoon session. I see that there are a few comments on Prusty's talk, which probably wouldn't have warranted a singling out for a...

Thanks MSEspe (I had missed the PEM section) As a brief definition of PEM, that's pretty good. On orthostatic intolerance: Those still seem to miss the boat - throughout most of my illness, I would have answered 'no' to both of those, but I certainly have orthostatic intolerance, and some...

It's a fact that there are wearables that can measure to a reasonable level of accuracy numbers of hours 'sleeping', 'awake but not moving' and 'awake and moving', and daily numbers of steps per day, along with a lot else. Hopefully someone will have the will and capability to do some research...

The chart on the differences in fibronectin in serum between healthy controls and ME/CFS was a bit underwhelming - there's an awful lot of overlap. As Trish says, it was all pretty rushed, so hard to know for sure. Perhaps it's part of the problem, at least for some people, or perhaps it's a...

There's a 'new and improved' version now: The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan

Here's the paper on the original version of the questionnaire: The COVID-19 Yorkshire Rehabilitation Scale (C19-YRS): application and psychometric analysis in a post-COVID-19 syndrome cohort, 2021, O'Connor et al

This doesn't look too bad, as far as it goes. Why it's called the 'rehabilitation scale' when it's really an assessment scale, and we don't have any evidence that anything that the clinics do actually makes a blind bit of difference to illness trajectories, I don't know. I guess it makes the...

The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan There's this one here @Trish, for Long Covid. It seems pretty much ok, as far as a survey of symptoms goes. They missed things like PEM and...

Yes. And all these years later, we have just reviewed a recent study on CBT in Long Covid that used actometers to allocate the participants into groups of low and higher activity, in order to provide them with more personalised instruction on how to reframe their thinking about fatigue and get...

We are past 100 posts in this thread, and I think we are still floundering around trying to understand what the project is aiming to do, and why. What has been described as 'psychometric tests' seems to be the main output and it sounds as though the researchers have already done some...

So, if I'm understanding correctly, a previous infection resulted in the body's recipe for fighting that infection (would that be in the long lived plasma cells in the bone marrow?) Then, when another infection comes along that is similar but different, the body is stuck on the old response and...

It sounds as though you already have a very clear idea of the concepts you want to measure @sarahtyson. Maybe it would help make the conversation more productive if you listed the concepts? Given the aims seem to include producing a top quality clinical assessment toolkit as well as PROMs, it...

No need to apologise. You aren't responsible for what biomarkers can or can't do. In terms of how my illness affects me, which is what I think your project is concerned with, restrictions on activity and a requirement to spend more time lying down than healthy people do is a substantial part...

I agree. It is absolutely imperative that any assessment of people with ME/CFS that is being developed in 2023 involves wearable technologies/actimetry and real time symptom logging. Surveys are time consuming and very subject to manipulation and poor memory. Will you be asking people with...

You misunderstood my comment; perhaps that was my fault. I was not suggesting that you are the "pet" patient. It was a reference to some researchers with a track record in ME/CFS and similar conditions who have validated harmful work with a carefully selected patient advisory group.

(Just as an aside "Covid-19 worry scale" - COWS? Shades of "MUPpets") So, the protocol said that the result of the actimetry would put participants into low and high(boom and bust) activity groups, with low activity participants being helped to increase their activity, and "relatively active"...

Yes, so the barest minimum level of effort. Brian, sorry, I can't tell from your comment if you think this was ok, or not. Do you understand the point about the healthy controls not having had Covid-19, and so they were unlike the Long covid participants? In that study, we are wanting to keep...