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Looks like a really useful database. I hope that there will be more analyses. There's a problem that the LC code (U09.9) was introduced in October 2021, so it's likely that quite a lot of people who developed Long Covid before this time were coded with something else, although they were told...

that should read 'in the first year after diagnosis'.

I guess it gives scope for making stuff up, in a way that 'quantitative' does not, although we have seen some remarkable examples of where even hard numbers have not got in the way of a good story. At least it's an honest description, and readers can make what they will of the product. I...

Thesis here: What is the psychological & educational impact of being an emerging adult living with ME/CFS?A qualitative interpretative phenomenological analysis

Thread where the research was announced UK: Research on how young adults (aged 16-24) with ME/CFS talk about their identity (Emma Williams, Final year trainee counselling psychologist)

From a post elsewhere by @Utsikt: Just a reminder that a Norwegian 13 year old boy attempted suicide after trying LP that was recommended by Wyller. This was in 2011. https://www.nrk.no/livsstil/forsokte-selvmord-etter-me-kurs-1.7891470

That's very kind of you @Turtle, just part of the team here. I think they must genuinely believe that their therapies work. And so the benefit outweighs the harm. And perhaps, the emotional harm is just part of the patient's journey on the way to overcoming the 'vicious cycle of fear' or...

Perhaps the long term physical harm that GET causes is not yet proven. But the various sorts of long term emotional harm should be easy to understand. It's basic psychology and anyone with empathy should be able to grasp it. Once you accept that GET does not produce a clinically meaningful...

PETITION UPDATE Significant revelations 10 Feb 2025 Significant revelations from a German investigative journalist In a detailed article in German, Martin Rücker, part of RiffReporter, presented some extraordinary findings from his investigation of the Cochrane story. He reported that Cochrane...

Some of the useful questions will take time, and some might be overtaken by the discovery of a biomarker, but, still. 1. Misdiagnoses - by tracking people over time. We know some people diagnosed with ME/CFS go on to be diagnosed with something else. Knowing what these other things are could...

Notice also that Table 1 doesn't report the number of people in each subset by sex. We don't know if there are more women in the hypermobility groups than in the non-hypermobility groups. Probably there are. But we do know that the sex ratios in the anxiety and the non-anxiety groups are not...

That's pretty clear, isn't. These researchers are approaching the study with a clear preconception that 'those hypermobile people are an anxious lot'. So, they recruited 30 people with Generalised Anxiety Disorder and 33 people without. Table 1 Notice that they don't report the BAI (Beck...

Manuel Funk , Max Reinke , Bernd Löwe, Petra Engelmann Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany The study participants were selected via convenience sampling and comprised outpatients who visited an eight-session...

They can't include pacing because they don't know if it works - whereas, there's no problem of that sort with all their other stuff, such as education on the vicious cycle of fear? Translate: patients seem to accept pacing, so how can we adjust our offering to look and sound like pacing...

CNN news item that makes clear the harm done by the Cochrane study www.cnn.com/videos/health/2023/09/09/smr-author-of-mask-study-on-effectiveness.cnn The lead author of the review features, making it clear that the review was not misunderstood And an article from Scientific American from...

I can't square that conclusion with Figure 5. @Chris Ponting, sorry to bother you, but can you or another author please explain what Figure 5 is showing with respect to male participants in the study and reported severity?

No, I'm not sure about most of this. :) I don't think the paper is clear.

Yes, I think that is likely. And, I don't think you need everything other than sex to be identical, just age and time since onset. In which case, it is misleading to say that this study proves that ME/CFS is more severe in females. It actually appears to be evidence for the opposite, that being...

The reason that I'm picking through this is that an editor of wikipedia is quoting this paper as suggesting that women are more likely to have more severe ME/CFS than men. Figure 5 suggests the opposite, with being male being associated with worse severity (although the analysis of worse...

I find the paper frustratingly light on details, skimming over lots of issues. I think there could have been a few good papers in the DecodeME questionnaire results- maybe there still could be. Less is usually more in terms of the scope of papers, I reckon. Yes. Possibly those conditions...