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Emerge in Australia invited Raijmakers to present at a conference on some research about Q fever fatigue syndrome (it's discussed on the forum somewhere). I remember some of the conference organisers being appalled at him spinning the results as suggesting that CBT had been in any way helpful...

Given the study population is military veterans, there could well be benefits to governments in avoiding labels like GWI. Without an appropriate label, people have a harder time advocating for useful research and support, and perhaps at some point, attributing responsibility for the illness...

Yes, and I'm not even sure that rehabilitation is useful for patients who are spontaneously recovering. I think increases in activity come naturally as people push against the threshold of PEM.

Posts relating to NIHR Long Covid research funding have been moved here: United Kingdom: NIHR Long Covid research funding decisions 2021

I agree with the concerns expressed, including the failure to recognise that some people are not going to get better, and the assumption that the therapists can make much positive difference to the illness trajectory. But I do want to recognise the huge effort that is going on to shift...

"indeed, stressor identification is no longer an essential diagnostic criterion and has been replaced by the requirement to identify positive neurological signs..." There's a paper that we commented on (*), the positive neurological signs seemed to be being a young woman, with extra points if...

Very sorry to hear that @Perrier. I hope that time fixes things, and soon.

What surprises me is that this is published by the BMJ. It would be interesting to see if the same platform would publish a report from a 16 year old who has been harmed by the 'treatment', or has not recovered. It seems that youthful authors get a free pass on being factually correct -...

Here's the paper that she coauthored: International online survey of 1048 individuals with functional neurological disorder, 2021, Butler, Stone et al

Bridget Mildon created FND Hope International, and is very active in supporting the concept of functional neurological disorders. She wrote about the experience that set her on the path of advocating for FND here Mad in America: Turning patients into numbers Her experience and initial...

Matthew Butler 1, Oliver Shipston-Sharman 2, Mathieu Seynaeve 1, Jianan Bao 1, Susannah Pick 1, Abigail Bradley-Westguard 3, Eveliina Ilola 1, Bridget Mildon 4, Dawn Golder 5, James Rucker 1, Jon Stone 6, Timothy Nicholson 1 1. Institute of Psychiatry, Psychology and Neuroscience, King’s College...

In the United States. The other two authors are involved in teaching the course.

It sure is. Makes the results as meaningful as relying on the opinions of people from Flat Earth Societies when trying to work out what shape Earth is.

Nice analysis cassava7, thank you. Yes. I do wonder if it is related to the current ME/CFS guideline process. It is an intriguing paper. This chart (specifically the 'unusual fatigue after exertion' bars) does suggest that, even if the diagnostic criteria had been better, they might have not...

A followup study of QFS following a major Q fever outbreak in Germany. Outbreak was in 2005, followup in 2011, but the report has only been published now, in 2021. Incidence of chronic Q fever and chronic fatigue syndrome: a six year follow-up of a large Q fever outbreak, 2021, Ankert et al

The approach to determine if someone had CFS is unusual, both in terms of the symptoms picked for the criteria, and the calculation of the score.

I think this is interesting. All authors from Suresnes, France. The authors seem to acknowledge a biological cause, and yet they still want to treat Long Covid with exercise. So, they had three cohorts - controls, Long Covid with fatigue, and Long Covid without fatigue. They used the NOL...

What struck me about those results, compared to the changes I think we experience when in good or bad patches of our illnesses, are the relatively small changes. Figure A is the resting heart rate, and the difference is just an increase of around 2 beats per minute. Whereas, when I'm worse...

Re large vessel vasculitis and Long Covid: The reference for this is M. Sollini, M. Ciccarelli, M. Cecconi, et al. Vasculitis changes in COVID-19 survivors with persistent symptoms: an [18F]FDG-PET/CT study Eur J Nucl Med Mol Imaging (2020), 10.1007/s00259-020-05084-3 Google Scholar

This is an interesting brief article, comparing data from wearable monitoring devices from people who had a respiratory illness and tested positive to Covid-19 with data from people who had a respiratory illness and tested negative to Covid-19. With the issues around testing, it would have been...