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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...

Edit: referring to the PwME advisory group who will provide PPI input: There have been lots of instances where institutions that don't understand ME/CFS and related diseases put up their own "pet" patients, who they know will not be challenging. People are just being cautious, on the basis of...

Sadly, I suspect that they will do just fine. With financial support from the Australian NHMRC and ZonMW, that's useful branding. And they are selling something that a lot of people want - people who don't have the time or inclination to look under the hood*. * the covering of the car engine...

Link to the letter written by @sarahtyson and @dave30th: A new paradigm is needed to explain long COVID, Saunders et al 2023 It would be great if you could use the members here as a resource to get feedback on draft toolkits and training materials before things are finalised.

Welcome to the forum @sarahtyson As a person with ME/CFS and a carer of a son with ME/CFS myself, I am very sorry to hear that that is a combination that you too have to deal with.

Can someone on Twitter ask Chantal why the SE's for the T1 and T2 timepoints are the same for CBT and CAU for each outcome? And how they dealt with missing data/why the SE's are titled 'Estimated SE'. And why the actigraph measures planned in the protocol were not reported in the paper.

Ah, ok. I'll adjust my post above.

If you look at the top lines of that table, the control group stays at 39.9 for T1 and T2. The CBT group gets marginally worse, from 30.6 to 31.5. It's not a big worsening, but I imagine part of the cause could be that the education the participants received that 'everyone gets tired' and that...

Table 3, for easy reference

It is good, but I don't think that chart in that link is quite right. The labels at the top make it look as though 68% is within half a standard deviation either side of the mean. I think the chart below is better - it's clearer that 68% is + and - one standard deviation from the mean. And...

Just noting those error bars on the chart and in Table 3 are said to be standard errors. I've said before, if a paper plots SE's, then I reckon it's a fair bet that it is a rubbish paper. (Edited - wrong) Standard error of the mean is the standard deviation divided by the square root of the...

This study received support from the Australian NHMRC and ZonMW - it's not good enough. Table 3 of the protocol has a long list of things that were to be measured e.g. was to be assessed at T1, T2 and T3.

Re the actigraph - there should have been objective data on activity levels. There's no mention of the actigraph in the published paper. Both cohorts should have been assessed for activity at T1.

The plan was to do a followup at 12 months, but only for the CBT group - which is completely useless. How transparent can you get? CBT doesn't work very well in people who have been sick for a long time. There's a high natural rate of recovery in the first three months after an infection (in...

Link to the protocol: A randomised controlled trial testing the efficacy of Fit after COVID, a cognitive behavioural therapy targeting severe post-infectious fatigue following COVID-19 (ReCOVer): study protocol