Search results

Yes, it seems very odd. I thought this was old news, and yet it's being proclaimed as something new. There was that Brain on Fire story way back in 2012. I guess we should celebrate that psychiatry is slowly leaving its version of 'demonic possession' behind.

We've heard at the German ME/CFS conference from the Norwegian researchers, Fluge and Mella, about how they have successfully used Fitbits. They published a paper on it last year: Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...

She showed a steady and substantial improvement over time, an upward curve. There was a dip for a bit when it turned out that she had a viral infection, but she returned back to the upward curve of improvement. So yes, she was improving, but the viral infection temporarily set her back. Edit...

This was the neurologist who has a relatively big ME/CFS practice. I think he said several times that it was important to review the effects of drugs and not persist with drugs that were not having an effect, I don't think it was said just in response to a question. It's a fair question, why...

About Nacul and the Canadian clinic It's possible my quick notes were coloured by my view of a previous talk Nacul gave about the centre, and my disappointment then that he had not taken the opportunity to run a really science-based centre. I mean, the clinic could have been churning out...

Klaus Wirth on vascular dysfunction That's me done, sorry

Woman presenter Treating orthostatic intolerance Case study of 29 woman range of issues, orthostatic intolerance, pupils slow to respond to light, standing test - measure BP and pulse no tea, coffee, no compression garments, no nicotine do test in the morning, as symptoms get better later...

Woman presenter - Lisa 66 patients in a forthcoming immunoadsorption study at the Charite GPCR autoantibodies Mentions Freitag 2021 paper (it's moving fast and I am slowing) 2016, 2018 studies showing immunoadsoprtion effective in ME/CFS (all very certain) study last October - 10 patients...

Didn't catch this man's name. Edit: Speaker is Wolfgang Ries, Nephrology, Clinic for Internal Medicine, DIAKO Hospital Flensburg, Flensburg, Germany (thanks, MSEspe) Mentions prognosis - 50% recover, (but that was K. Rowe's paper from 2019 - I think that was the one with followup of young...

Oystein Fluge Most of you know the history; rituximab ending up with no significant differences. transient B cell depletion - targets CD20 molecule Open label cyclophosphamide - seemed to be some good responses. Broad immune suppressive effects on lymphocytes. Might work by affecting early...

Yes, my impression was that she was fully on our team.

Thanks. I think I may have nodded off to sleep in the last one - not the presenter's fault at all. Morning tea in Germany

Bettina Grande - psychotherapist Psychological support in ME/CFS Acknowledges that psychotherapy doesn't cure ME/CFS, and it can be used to mobilise people, which can results in harm. The problem is most modalities result in activation. Need to acknowledge ME/CFS is a physical disease, there...

Laura - talking about ME/CFS in society. Nothing we don't know - dissatisfaction with medical care, stigmatisation can be really detrimental Two papers published German version of DSQ What can we do - live webinar to increase health practitioners' knowledge about ME/CFS. Paper forthcoming on...

Michael Stingl - neuromodulation I thought this was going to be a clip on your ear with an electrical current - but it was drugs. Dosages and side effects were given. He stresses that patients need to be informed well, due to the side effects, and the drugs are off-label. I think he said that...

Next man - a young person's inpatient treatment centre - 5weeks. Sleep hygiene emphasised, physical activation with graded exercise has to be done carefully. He seems well-meaning. He proclaims it works, on no real evidence. They do get their own bedrooms though, and probably do benefit form...

Luis Nacul - basically an extended ad for his Canadian clinic. He promoted a whole range of unevidenced therapies; they offer things like acupressure, some therapy called "Beneath the surface" - goodness knows what that is. He supports use of aripiprazole.

Lovely to hear from you SL. But, does an RER of 1.3 at "anaerobic threshold" in healthy controls make any sense to you?

Thanks Brian. In that case, the harm caused by the regulation was magnified. There's a reason why studies have controls, they are not just a nice to have. Do you know, how long did the visitor restrictions last and when were the Long covid participants processed? To put the Covid-19 risk in...

I agree. There wasn't enough time for most of the researchers to carefully lay out what they had done, and talk about the implications of what they had found. For the people who are there, it's probably ok, as they can chat to the researchers whose work interested them in the lunch break or at...