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Would an example of naming things wrongly be when people are assumed to not have had Covid-19 when they can't provide evidence of having had a positive test? Or perhaps setting the bar for the definition of Long Covid so low that nearly everyone qualifies as having it? Or perhaps labelling...

Do we know who the consumer reps on the Cochrane Editorial Board are?

Thank you to the Italian organisation Associazione CFS Organizzazione di Volontariato for adding their support to the campaign, and also to Giada for reaching out to them. Terrific to see a surge in support from France over the past day.

Some news about changes in Cochrane's management structures has been moved from this thread to News from Cochrane

For sure DMissa, but when you have 9 cases and 7 controls and substantial variation between and within those samples, statistical methods can't do magic.

More good work by the MEA trying to clean up UK information about ME/CFS: UK Royal College of Psychiatrists

Great stuff from the MEA.

Wow, a great (well, terrible, but useful) bit of information. Thanks Peter. I'd be surprised if the number of citations is a major reason for Cochrane to retain it. Rather I think it's the fervent belief of people with influence inside Cochrane that the Exercise Review is correct that is a...

(B) Fatigue was defined as a total score of ≥22 on the Fatigue Assessment Scale (FAS) questionnaire. Single gene expression levels in fatigued (n=35) and non-fatigued (n=34) long COVID patients, data are presented as mean values and are expressed relatively to the expression level of healthy...

Effectiveness of psychosomatic therapy for patients with persistent somatic symptoms: Results from the CORPUS... 2023 Wortman et al This recent one is flawed in many ways. Ethical issues include issues with free prior informed consent, considerable bias in the data that are reported and...

Next talk: Chronic Infections—November 30, 2023, 11:00AM ET

I wonder at what stage this study is at. Long covid and ME/CFS patient organisations need to get the message out that this study should be boycotted. When the investigators approach the whole issue with such certainty (e.g. the lead author comes from the Department of Psychosomatic Medicine...

This seems like an important issue to give attention to - how to calculate estimates of years lost to disability. You can't manage well what you don't measure. And, if you measure it wrong, the management will probably be wrong too. I hope patient charities will read this paper and consider...

I assumed that a cell had to have the Foxp3 and the CD4 to be a Treg. If it had Foxp4, would it be some other sort of cell? Have we had studies looking at the variation in cell markers in Tregs in ME/CFS?

It looks like any sort of therapy can be shown to produce a similar sort of benefit. Even 'mindfulness-based mediation' :laugh:. Is that where the participant and their body have a good chat with each other in order to resolve differences? ;) Sorry for copying so many paragraphs, but I find...

I just want to emphasise the point about this being assessed as not actually being a study requiring consent from patients. The authors claim they are trying something novel and unevidenced. They can't have things both ways. If it is novel, then participants should be asked to give consent...

Dropouts Of the 189 patients who were enrolled in the course (having accepted the CSS diagnosis), 135 filled out the end of course questionnaires and 81 (43%) of them filled out the questionnaires 3 months after the course. That's surely an enormous winnowing out of the non-believers and...

Just noting the ongoing disappearance of ME/CFS. Now it seems that you can have fibromyalgia with PEM, presumably meaning that the NICE Guideline for ME/CFS can be ignored. Just making up a conceptual model isn't the answer to this problem though. Time to move on from CBT it seems and offer...

This. No controls mean the results mean nothing much. Also, the usual problem of people who are skeptical of something called 'body reprogramming' won't go near this course, so you have a group of people who are mostly open to the idea of being fixed by thinking differently and expect some...

What's going on at the Lancet? Going by the abstract, the editing service is pretty bad. e.g. the first sentence It's a hospitalised cohort which isn't great for singling out the sort of Long Covid that we are most interested in. With the range of post-Covid impacts in this population and...