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It looks like this student did their best to collect data in different ways with a survey, individual interviews and focus groups, but all they end up with is the usual strings of buzz words conclusion - personalised, patient centred, multi-disciplinary, integrated, networks, ... We could have...

I am a fan of activity monitors, and find my fitbit steps data useful as a relection of my state of functioning. There are downsides to wrist worn monitoring as my daughter discovered over recent months as she has taken up knitting again. Each stitch registers as several steps, so her step count...

I seem to have said a million times this year. Studies based on getting sick people to fill in a pile of unsatisfactory and often inappropraite questionnaires should not be considered scientific reseach worthy of publication. And should never be used to draw conclusions that accuse sick people...

A question. Would this infection effect only apply to infections that make a person feel ill such as flu or covid? What about localised infections such as a tooth abscess or urinary tract infection?

Don't be embarrassed. I've tried worse. I agree FODMAP helped me too.

Yes, I'm sure there are. But that's not sufficient evidence if they are talking about a subgroup for which this applies.

There are at least 2 other PEM questionnaires recently developed or in development. The MEA one by Sarah Tyson, which is as bad as the DSQ one, and thiss one: Open Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) – Rob Wüst I see 3 major problems with PEM...

I agree it's a disaster using the old DSQ PEM which was just a list of muscle fatigability questions. We discussed recently Leonard Jason's attempt to create a new DSQ PEM questionnaire that includes stuff about triggers, timing and symptoms. I found it very unsatisfactory. Open DSQ PEM survey...

I don't think I have seen any good evidence that adverse childhood experiences predispose, precipitate or perpetuate ME/CFS.

You are not alone. Pacing is not a treatment that leads to improvement it's a management strategy to try to reduce episodes of PEM pushing us into worsening. I think comment about anyone pacing well and improving is not evidence that pacing led to the improvement, only that it may in some cases...

I'd forgotten that. For anyone else confused by the reference:

French team in Paris, psychiatrists and sports medicine people involved. Ethics declarations

This is torture. It reminds me of hearing about political re-education camps with brainwashing (cognitive restructuring) and physical punishment (GET). If they include people with PEM, they risk making them much sicker, and if they do make people sicker, they should be struck off. They know the...

That's rather revealing. Surely the goal of clinical trials should be "to find out whether...", not "to demonstrate that..."

Thread: Deoxygenation Trends and Their Multivariate Association with Self-Reported Fatigue in Post-COVID Syndrome, 2025, Ladek et al

That is shocking. How can they justify training clinicians in a potentially harmful program of treatment that has no clinical trial evidence. Surely cinicians should be sued or struck off for this. Renegade research seem to be out of control dangerous.

I don't see any personal antogonism here. I agree it would be unfair and inappropriate. I'm sure we are all very pleased for him and his family that his health has improved after years of terrible suffering. As you say, it also gives hope to others, and evidence that even the severest ME/CFS is...

I'm not. Makes my heart race and miss beats, and keeps me awake at night.

And how could we forget the MUPPETS, coined for a conference addressed by Esther Crawley, based on MUPS - medically unexpained physical symptoms. Then there's all the variations on functional, bodily distress disorder, somatic symptom disorder, each with their fans, definitions, no doubt...

gut directed hypnotherapy... The mind boggles. I'm imagining a mini hypnotherapist climbing down a gastroscope or up a colonoscope talking soothingly to my gut, telling it to count slowly backwards from ten while relaxing...