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The authors also use some strong language. They write: Which seems rather inappropriate - it's not like they have any data for or against this hypothesis...

Looks like a great article. Many thanks to the wonderful Giada Da Ros!

New study: A retrospective observational study of Lyme neuroborreliosis in the southwest of England by Petridou et al. They retrospectively followed up on 72 patients with Lyme neuroborreliosis (selection criteria weren't very strict). The long-term outcomes were reported as follows:

Was listening to this 2016 podcast "Everything Herz: 17: Journals: Do we need them?" and they mentioned that in physics and mathematics it is common for researchers to just publish their article on their academic profile where it gets a DOI, so without journals as an intermediary. They also...

But in that case, patients were actively encouraged to interpret and their symptoms differently, so they were like primed to fill in the questionnaire differently. I think if you were to do a simple prospective study with both actimeters and the SF-36 SF subscale, it would be rather difficult...

Apologies in advance for being difficult, but I think this helps in understanding things. But how would you test the reliability of an outcome measure over a long period of time: if you get a different score how can you know if the difference is due to an unreliable questionnaire or an actual...

I think we fully agree on this Trish, it's just that I would label these problems as issues with trial design (bias) rather than the reliability or validity of questionnaires. I think that the term reliability has a specific meaning in this context, namely that if the same patient fills in the...

I suppose that short questionnaires that focus on a particular issue (not overall impairment) and don't have large scoring ranges would be better in this regard. I agree it's often better to have a combination of objective measurements and questionnaires of what you want to measure, but that...

Perhaps things would be clearer if you could give an example of an outcome measure that that doesn't have this problem because I still don't seem to get it. If you ask patients to rate their physical functioning on a scale from 1-10, patients could be making the same consideration as you...

I notice that biorxiv, the preprint server for biology, has added a note saying:

I don't think I agree with this. The problem you sketched is mostly a problem of clinical trial design where you have to control for other factors that might influence how participants fill in the questionnaire, though blinding and an adequate control condition etc. But in a standard blinded RCT...

It seems that these are problems of all questionnaires, not only the ones used here (and probably of other outcome measures as well). I suspect it's difficult to get around this problem. You can't measure physical function directly so one will have to use questions and a scoring system that...

Yes, but I think that's only if you use the scale in the healthy population and if you look at a patient group such as ME/CFS that you get a crude approximation of a normal curve. Below is a graph of the SF-36 scores of the PACE-trial at baseline with a normal curve with the same mean and...

One of the authors of this abstract, Italian researcher Elenka Brenna, has published the following back in 2018: Chronic Fatigue Syndrome (CFS/ME): a first empirical analysis for Italy. I can't read it because it's in Italian, but it looks like some extra info on the (economic) impact of...

Thanks for explaining! But isn't that the case then for all questionnaires that add scores to different questions? In my view, it makes sense that the ten points to one question mean something different than the ten points of another question on the same scale. Otherwise, you would have almost...

What do you mean with the false assumption that this is linear data they are dealing with?

Some list E-Cronicon as a predatory publisher: https://beallslist.net/

Quite frustrating how the results are reported here. In the methods section the authors report that "the following measures were recorded for the clinical trial: Fatigue severity scale, SF-36 Physical functioning subscale (PF-10), Hospital anxiety depression scale, EQ5D, as well as VAS." Yet I...

Has anyone looked in-depth at cerebral perfusion in ME/CFS? I know there are quite a few studies that have reported this but is it a robust finding? If so, what to make of the finding in this study by Van Campen/Visser that "Supine cerebral blood flow was not different between ME/CFS patients...

We have also made a tutorial video on how to to use Twitter to participate in MEawarenesshour (please don't laugh at the poor quality of the video - I did the best I could!)