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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...

Anna Aschenbrenner I don't think we have seen a paper on the work that she presented the conference yet (?). That is one to look out for.

I don't think I really understand that. The people with Long Covid were required to go in. Presumably precautions were taken to ensure they didn't get infected with Covid-19 again? It's not as if they already had a disease and it didn't matter if they were exposed to it again - a Covid-19...

The protocol was changed from recruiting people within 6 months of illness onset to, I think, 12 months. I assumed that this was because they were having difficulty recruiting people. Not getting access to a whole lot of newly ill people would rather stymie any effort to prevent LC.

:D (My sentence was poorly written. I'll fix it.)

I'm finding it difficult to reconcile the attitudes to FND expressed here with the good letter written by David Tuller @dave30th and Sarah Tyson (@sarahtyson). https://www.s4me.info/threads/a-new...-saunders-et-al-2023.31323/page-2#post-458988 Some excerpts from that letter: I'm not...

Yes, me too. I rather liked the fibromyalgia mouse model paper. But there were concerns expressed on the forum about its reproducibility.